Ticks and Trust

GENESIS 50:20

2012-02-09T15:22:00.000-08:00

"In the fullness of time, the mainstream handling of Chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.”

- Dr. Kenneth Liegner

this is the husband here...and ok, my wife is providing the clerical support (hence, the obvious lack of capital letters). here is a very edited version of what we are facing. we still have to be somewhat vague, we trust you understand.

a children's hospital is interfering with our son's medical treatment from the USA. without warning, and without consultation with our son's primary care doc (DR H), they made decisions to put certain aggressive and threatening plans into action to STOP our son's treatment. they claim his treatment is medically unnecessary and harmful. why? because they dispute his diagnosis. in their opinion, he does not have lyme disease. yet, they have no differential diagnosis to offer nor have a plan in place to investigate what, if it is not lyme, is the cause of his symptoms. it all boils down to medical difference of opinion and the politics of lyme. the differences of opinion happens in medicine. doctor's have differences of opinion. it is a patient's right to seek a second opinion and choose the best treatment option.

in our son's case, the hospital (2 years ago) diagnosed him with "idiopathic" conditions. idiopathic means "we don't know what the cause is". their treatment plan was aimed at symptom control with narcotics, anti-depressants and psychology. many times, we requested they further investigate the cause of our son's deteriorating health. they refused...even when he continued to deteriorate under their therapy plan. it was intolerable to watch him waste away and suffer. we had him examined and all his medical files and tests reviewed by 2 other doctors (DR H and DR D). they determined the cause of his "idiopathic" conditions were babesia and lyme infections.

when our son came under the care of DR H, he was on death's door and was profoundly disabled. yes, he is still ill, but he is notably improved. the letter from the hospital failed to note or give credence to the fact that many of our son's "idiopathic" symptoms have improved and some have even resolved on the treatment prescribed by DR H. furthermore, he has not suffered adverse effects from the treatment.

we know we are not the first family to face this. we have seen this type of action before with others and we sense it's a being made more from a political and "example setting" sense than it is a medical one. we acknowledge his treatment and diagnosis is controversial to some, but the way they are threatening to strong arm us is categorically wrong and unethical. it is also completely contrary and against the medical advice of his treating physician. we will be seeking legal advice. until we are able to set that in motion, and in order to protect our son, we have had to make some very difficult choices. the hospital's interference and demands put our son's safety in jeopardy. should we not comply with their demands, the fear is that the entities involved will "act first, ask questions second". yet, complying with their demands puts his very life at risk. either way, there is the potential for devastating consequences.

over this past week, DR H and DR D have spent many hours working on behalf of the best interests of our son. the gravity of this situation and risk to our son's well being has weighed heavily on us and his USA medical team. there is much that needs to be taken under consideration. we are so thankful for our USA medical team and their wisdom, dedication, care and support. over the past 2.5 years, we have had to take extraordinary measures to get our son the medical care he needs. we will continue to do so.

we are mentally, physically and emotionally drained. this whole ordeal has been traumatic for our entire family. as has always been, our greatest concern remains for the physical, emotional, spiritual and mental well being of our son. the suffering he has endured in his young life is unfathomable - and now "this". we could not shelter him from "this" as the threat of it is very serious and we have had to prepare him for what it could potentially mean.

how do you help your child(ren) cope with the gravity of man's evil intent? we have had many discussions about the story of joseph in the bible and how he was sold into slavery by his own brothers. what a betrayal of trust that was...and yet, God was sovereign over the evil. He is sovereign over this horrendous circumstance as well. in genesis 50:20, we read joseph's response to his brothers:

"Don't you see, you planned evil against me but God used those same plans for my good, as you see all around you right now—life for many people."

so we hold on to that...both for ourselves and our immediate situation as well as the many others that are suffering with this devastating disease. it has always been mine and my wife's belief that our journey with lyme is not just about 'us'. it is our prayer that our story and our fight will one day pave the way towards the diagnosis and treatment of lyme in canada for canadians.

this past week has been undeniably shocking, frightening and indescribably infuriating. we have catapulted thru a cascade of emotions from volatile outrage to gut wrenching grief...BUT God is in control and He is our very present help in time of trouble and we have already been witness to some of the ways in which He is creatively orchestrating events and we seek to bring glory to His name in the midst what appears to be a catastrophic storm.

we want to thank those of you who have spent many hours in prayer, phoned, sent emails or messages and continue to support us in tangible ways. that means the world to us right now. please don't stop.

some of you have asked how you can help. thank you for your offers.

this is what need at this time:

we are tired, battered and bruised. some days we feel fragile...but we are not broken. however, we do need folks to wrap their arms around us and love on us.

we need meals.

we need to hear that we are in your thoughts and prayers. you don't need to know the 'right' thing to say, just let us know you are out there.

we need folks to be in prayer.

we need to process our anger. we need to vent. we need to cry. we need to scream. yet, we desire to do that in a manner that upholds the values that are important to us. we have no desire to let our (justifiable) anger and rage take root in our hearts.

we need and are looking for a lawyer; specifically a charter of rights/civil attorney with a legal interest/experience with medical law. please pray for that and for God to provide the finances needed.

finally and importantly,

if you feel compelled to come alongside in an "advocate type role", we ask that you touch base with us directly and privately...this is an incredibly sensitive and delicate issue. we absolutely need for what we are going thru to be handled with great care, discernment and wisdom. there is a time to speak out and there is the time to strategically and quietly go about business. for the time being, we believe it is imperative to handle this as discreetly as possible.

again, we wish to convey our deepest gratitude to each of you. we have been hard pressed to respond to your messages as our time and energy is incredibly taxed...but we do read every message that comes our way and they do make a difference.

PSALM 17

2012-02-02T21:45:00.000-08:00

it was worse news than we expected or had even feared.
So. Much. Worse.
we are not really able to elaborate publicly at this time...we are asking that you pray a hedge of protection around our family.

we are so grateful for your support and prayers.
they are desperately needed.

psalm 17

Hear me, LORD, my plea is just;

listen to my shrill, piercing cry!

Hear my prayer—

it does not rise from deceitful lips.

Let my vindication come from you;

may your eyes see what is right.

Though you probe my heart,

though you examine me at night and test me,

you will find that I have planned no evil;

my mouth has not transgressed.

Though people tried to bribe me,

I have kept myself from the ways of the violent

through what your lips have commanded.

My steps have held to your paths;

my feet have not stumbled.

I call on you, my God, for you will answer me;

turn your ear to me and hear my prayer.

Show Your marvelous loving-kindness,

You save by Your right hand those who trust

and take refuge in You

from those who rise up against them.

Keep and guard me as the pupil of Your eye;

hide me in the shadow of Your wings

From the wicked who despoil and oppress me,

my deadly adversaries who surround me.

They are enclosed in their own prosperity

and have shut up their hearts to pity;

with their mouths they make exorbitant claims

and proudly and arrogantly speak.

They track us down in each step we take;

now they surround us;

they set their eyes to cast us to the ground,

Like a lion greedy and eager to tear his prey,

and as a young lion lurking in hidden places.

Arise, O Lord!

Confront and forestall them, cast them down!

Deliver my life from the wicked by Your sword,

By your hand save me from such people, LORD

As for me, I will continue beholding Your face in righteousness

(rightness, justice, and right standing with You);

I shall be fully satisfied,

when I awake to find myself

beholding Your form and having sweet communion with You.

LORD, GIVE ME A FEARLESS HEART

2012-02-01T11:54:00.000-08:00

this has been a stressful week

last week, while we were in the middle of researching options for PORT surgeries, i got a call

at the other end of the line was the receptionist from our GP's office;
"DR A" would like you to come in to discuss a letter he received from children's hospital about your son.

i nearly dropped the phone

"this can't be good" was the first thought that pounded in my ears

of course, unlikely as it seems, this letter could be something 'good' or at the very least, it may be about something inconsequential. yes, i could have my shorts all in a knot for nothing...however, i fear this letter contains a sinister plot...

today is where the rubber meets the road
i will see DR A this afternoon and whatever this letter is about will come to light
and
i am SCARED

why?

i am scared that a certain pediatrician at children's hospital who has been incredibly vocal about withdrawing antibiotic treatment and has been pushing to remove parker's PICC line has succeeded in backing DR A into a corner.

i am scared that this meddling pedicatrician has the power to force DR A to write an order to remove parker's PICC line.

i am scared we are about to lose the little support that we do have here in canada.

i am scared an order has been written to remove parker's existing PICC line and withdraw homecare nursing support.

i am scared that if we have to move forward with getting parker a PORT, that we will be blocked from accessing even basic nursing care for it here in canada.

these fears are not unfounded. it's a long story as to how or why each of those fears is a possibility. the short of it is this - while DR A is supportive of the treatment parker is getting from DR H, he is not able to prescribe parker's meds nor can he order a PICC line or a PORT. however, he did assist us in getting nursing to care for parker's PICC. doing so, made him responsible for it - which means he can be held accountable - and yes, 'forced' to order it's removal. the medical community here is so hostile against lyme that the few doctors that do have the courage to walk alongside a patient with lyme, are targeted by their colleagues and licensing boards and subsequently raked over the coals by them.

i am scared
and
yet, i TRUST.
albeit
i wonder if my trust was truly solid, would i have such struggle within my soul with fear?

quite frankly, i'm tired of the fight. i'm tired of all this crap. i'm tired of hurting. i'm tired of being abandoned. i'm tired of the roller coaster. i'm tired of being at odds with the medical community here. i'm tired of being fearful of doctors. i'm tired of learning tough lessons.

i'm NOT tired of experiencing the amazing ways in which God works. i'm NOT tired of watching the miraculous ways in which he moves time and time again. i'm NOT tired of knowing that i can trust Him in ALL of it.

i pray i can face today with a fearless heart.

FEARLESS HEART

~point of grace

For even the most trusting soul

This world can be a scary place

So much that we can't control

In every moment that we face

When a thousand what ifs

Whisper in our ears

We remember who's we are

And watch them disappear

I wanna live with a fearless heart

Courage that's coming from trust in God

It's constantly guiding me though the road may seem dark

I wanna live, wanna live with a fearless heart

There are worries chasing everyone

It's evident in times like these

But I have found the confidence that comes

From time I spend on my knees

There's a truth I'm holding onto

As these days unfold

Greater is He, that is in me

Than he that's in the world

He's my strength, He's my shelter

He is with me all the way

He's my light and my salvation

Of whom shall I be afraid, of whom shall I be afraid?

I wanna live with a fearless heart

Courage that's coming from trust in God

It's constantly guiding me though the road may seem dark

I wanna live with a fearless heart

SAY YES TO THE VENOGRAM

2012-01-28T13:17:00.000-08:00

last wednesday, we got the news we didn't want. parker needs to continue with IV treatment. it's disappointing news and not what we had hoped for but we are not surprised. parker is understandably upset. he is fed up with taking pills and dealing with IVs. it's safe to say he's hit the wall. he has treatment fatigue and is battle weary. he has also spent the last 4 weeks having mentally arrived at the end of IV. he knew that it was a possibility that he could have his PICC pulled and be done with IV. he is having a very difficult time coping with the knowledge that he now must continue IV...and most likely get a PORT to boot.

since IV treatment needs to continue, we naturally assumed that we would need to rapidly move forward with getting parker's PICC replaced with a PORT. we immediately began trouble shooting where in the USA we could have it done and then how best to make arrangements for that to happen in a timely and the most cost effective way.

first order of business was to touch base with the surgical team that put in parker's last PICC. (the ones that discovered his collateral veins. based on his vascular issues, they did not think his PICC would be viable for more than a few months and recommended that his new PICC not be left in long term.) we wanted to know if we could have parker's PORT surgery done at their clinic or if they could recommend a surgeon that could. additionally, i was concerned that the collateral veins and subclavian occlusion could potentially complicate a PORT surgery.

i was put thru to the vascular nurse who assisted with parker's PICC surgery. she clearly remembered him...who can forget the ORDEAL that poor kid went thru. she definitely confirmed that parker's collateral/subclavian occlusion could potentially complicate a PORT surgery. for this reason, his PORT surgery should be done in a hospital setting.

in passing, i remarked at what a shame it was to have to lose this PICC - especially since, aside from the few issues we had with it in the first 6 weeks, we'd had absolutely no problems with for the past 2 months.

"hold up," she said, "no problems?"
"nope. no more blood clots. no more lymph drainage. aspirates perfectly. runs no problemo"
she then surprised me by saying that his PICC might actually be fine to leave in ...but that we absolutely must get a venogram done. (a vein study) if a vegnogram revealed that his vascular issues were not worsening then it was actually advisable to keep the PICC in - and it could even be viable for another 4-6 months.

in fact, she went on to say that if his veins were holding steady with the existing PICC, that it could potentially be more damaging to his vascular system to pull the PICC and put in a PORT. especially, since the occluded subclavian vein means (most likely) a PORT would need to be accessed thru his jugular.

ok. wow.
had't crossed our minds that the PICC he has could actually be safely kept in longer.

now, the challenge is to get a venogram done. again, this needs to be done in a hospital setting as parker reacts to contrast dyes. (a complication due to his mast cell disorder). obviously, it would be ideal to have that done here in canada. duh. if only it were that easy. this is a simple and common procedure. of course, all things pediatric go thru the children's hospital in our area. and well, we're all aware that help or assistance has not been forth coming from any doctors there. they have made it implicitly clear that, "as an entity they do not believe in the existence of chronic LD." - apparently stating something does not exist absolves them of any responsibility in managing or providing care either for the disease or anything treatment related. after all, how can you provide care for treatment associated with a disease that does not exist?

however, the IV team of nurses at that hospital have been wonderfully supportive - unfortunately, they can't provide any sort of care without a doctor's orders. regardless, i put in a call to them anyway. i updated the IV nurse on the situation. she was in complete agreement with the recommendations made by the american vascular nurse; that a venogram should be done and that keeping in the existing PICC was an option. she also stated that requesting a venogram (here in canada) was a completely reasonable request.

of course the challenge is scaling the enormous wall of denial in order to get a venogram done here. the IV nurse was hopeful she'd be able to find a doc to help. she said she'd try her hardest.

she got a big fat NO at every turn.

we have one last option left to try and obtain the venogram here in canada. we will be pursuing this avenue this coming wednesday. if we get another big fat no then we will journey to the USA. again.

we remain hopeful that some doc will say yes to the venogram.

whatever the outcome, we are resting in the knowledge that we can trust God to chart our path

SORE FINGERS

2012-01-24T13:13:00.000-08:00

so, parker broke his finger on the weekend.

i tried to suppress the urge to cheer.
yippee!
nice mom i am.
i'm not happy he broke his finger
but really, a broken finger is a sign that he is able to do some normal kid stuff
and THAT we are happy about that.

there is no big dramatic back story to go with how the finger was broken
he jammed it playing basketball.
it's a big deal that he was playing, yes, but other than that, no big drama.
end of story.

HOWEVER
i am legendary for being acutely dismissive of broken bones in our house.
partly because i am reticent to go to the ER...i hate sitting in ERs. hate it. but in my defense, my kids don't react in the way someone with a broken bone should (or how i think they would or should) so how am i to know?
like the time avery broke her leg.

she was 2. we were at science world. her and parker went down that wood slide they have there (it should be burned, it is so dangerous). the short of it? she got stuck. paker did not. he was right behind her. we heard a little crack, she cried hard for 5 minutes. and then seemed fine. she wouldn't walk or put any weight on her leg but she was happy.
graham thought we should have it looked at

"she's fine. she'll be fine. she's happy, it's probably just a sprain." i confidently asserted.

and besides, "if we take her to the ER, we are gonna sit there for hours only to be told it is a sprain and to go home and ice it and give her advil."
no thanks!

so we went out for dinner.
i know, right!
and
then when she still wasn't putting weight on it several hours later, graham convinced me we should just get it checked out.

by that time it was evening.
ahhh, what a bother.
off we went with our non-walking but very happy toddler in tow
arrived at the ER
and
waited
and
waited
and
waited.
3 hours.
naturally.
avery happily played the entire time.
surely, if her leg was broken she'd be screaming or at least crying.
harumph.
i had enough.
"we're going." i said in exasperation. "this is ridiculous. she's fine."
we got called in, just as we were preparing to leave
sigh.
i nearly said forget it but after waiting all this time figured we might as well be seen.

sure enough.
an xray revealed full tibia fracture.
oops. sorry 'bout that.

taylor, who played very competitive basketball all thru high school,
broke nearly every finger
and
his nose
twice
and
he likes to remind me whenever possible how i ignored his broken bones
nice.
again, such a sympathetic mom.

but hey, in my defense, i didn't think one could break something but still continue to play. yet he often did.
how was i to know they were broken.
i always thought they were sprains.

and
i hate sitting in ERs.
so boring. so long. and all for what? for an xray and a doctor saying, 'it's just a sprain. ice it and take some ibuprofen.'
i could've told you that - minus the 3 hour wait
and
even if it is a break, a finger they splint and then send you home with the same advice.

so, when at the end of a basketball game, taylor would say he had a sore finger(s)
i believed him but didn't think they were broken
after all, he'd just played the entire game
"i play thru the pain" he would say
and i'd reply
"i'm so proud of you! here's some ice and an ibuprofen. i'm sure your finger will be fine."
but
the finger(s) would keep hurting.
eventually, i'd take him to the doctor
and
sure enough, 3 or 5 or 7 days after the fact, we'd learn that the sore fingers the poor kid had been walking around with were really broken.

oops. sorry 'bout that.
he's never let me live it down
nor forget.

so on friday, when parker started complaining that his finger was really sore, i only made him wait one whole day. i know, right? old habits die hard.

ha ha.

and of course, the sore fingers thing applies to me too. it's a story i don't let graham forget!

way back in 2007 i was just a few months into treatment... on mepron and zith for babs. treatment that provokes some of the most terrible, horrible herxes ever. i was sick. sick. sick. sick. i thought i was dying. i felt like i was dying. i wanted to die.

as i had started my decent into herxing hell, i had sent out a "desperation" email to a support contact i found on the canadian lyme disease foundation website. the response i got had been a saving grace as i plummeted further into the unimaginable, indescribable world of herxing - to know someone else had been thru it, to know that this insanity was "normal", to know that i was not alone, kept me surviving. it meant so much. by the time the email had come, i was so wracked with pain and dealing with psychiatric symptoms of OCD episodes, unrelenting panic attacks that would go on for 3 hours at a time and suicidal ideation. i was hallucinating and my cognitive function would deteriorate. i would lapse into episodes where i had no idea who i was or where i was, then there were the fevers, chills, sweats, the tremors, vomiting, arrythmias, and the pain. always the pain. pain that makes your teeth rattle. the kind of pain so intense, that even just a bed sheet draped over my body, was too much weight and only intensified my pain.

there were many times over those days, where graham tried to convince me to let him take me to the ER. i would have none of it. i was surely beyond help, so i'd rather die in the comfort of my own home.

yes, i was in rather horrendous shape.
but i wanted this person to know that their email had meant so much. in a moment of lucidity, i whispered to graham to pls email them and let them know that i had gotten even worse but thank you so much for their response.

it took a week before i was well enough to manage a few minutes at the computer.
and
then i saw it, graham's reply

"this is graham. shannon's fingers are too sore to type, but she wanted you to know how much she appreciated your email."

my inability to communicate was chalked up to sore fingers?
you have got to be kidding me? we still laugh at that.

the moral of the story?
sore fingers aren't always what they appear to be.

SHAN'S RECOVERY M.U.D.

2012-01-21T11:32:00.000-08:00

here's the latest M.edical U.pD.ate on me and the outcome of my appointment with DR H on friday.

i am still off of all ABX. whoop! whoop! 5 months now.

i am still on a treatment regime. i am on meds to control my mast cell issues. and for the past 2 months, the primary focus has been detoxing my body and bringing down my viral load. we've managed my viral load quite successfully with a host of natural remedies. mono-lauricidin. immunvira. oregano oil. to name a few. and eek! even colloidal silver. it took some convincing on DR H's part to get me to try that one. the whole blue man myth had me a little nervous...all i need after all i've been thru, is to come out on the other side of this looking like a smurf.

i am doing pretty darn good - as long as i avoid all fruits and vegetables (yes, that is still a major issue), and i have to be vigilant about getting in strategically scheduled rest periods between activities. i still have days where i am flat on my back in bed...that usually being the result of me overdoing it. my bad days are no longer the horror they once were. PTL! some days it is still a struggle to accomplish a series of tasks. however, that pales in comparison to the many incredible feats that i have been able to do.

ability is an absolute gift to experience.

the whole learning to pace myself and taking it easy even when i feel well enough to keep going and do more is hard. i feel bad to not do if i know that i could. i feel guilty just sitting or resting and "taking it easy". it's a weird place to be in...but i'll gratefully reside in it. yes, i'm getting re-acquainted with the "old me" and i am discovering how this "new me" interacts and functions in the world. bridging the gap between the two is a challenge, yes, but i'm sure having a whole lot of fun doing it...and what a delight it is.

cherished moments. hilarious moments. tender moments. triumphant moments. difficult moments. every moment is a precious gift. yes, in a strange way, even the difficult moments are.

being free of crippling pain means dressing up and wearing heels. being able to wear my wedding rings. making my bed. making dinner. vacuuming. brushing my daughter's hair...and dyeing mine and even wearing silly hats...

went to a high tea and we all got to make our own "fascinator"

um, yeah, harrison insisted on making one too

being free of crippling pain means holding hands. giving hugs. being hugged. it means receiving great big squishy hugs and not cringing and wincing. never underestimate the power of touch... and never take it for granted.

being free of crippling pain means planning to go somewhere and actually getting there. it means saying, "yes, i can"...and then being able to follow thru. it means being fully present in the moment.

freedom is no earplugs, no paper plates, real cutlery and eating at the table together as a family.

being free of crippling pain means socializing. going to parties. going to church. being with family. being with friends. being with friends that are considered family.
and
it means painting!?!

not artsy fartsy painting but the "gimme a paint roller so i can give the walls a fresh coat of paint" type of painting. yes, the 5 gallon bucket of paint that's been sitting in the garage for the past 6 years has finally and triumphantly been used. i love painting. always have found it very therapeutic. prior to lyme, i was dabbling in the interior decorating industry - and did a fair share of painting other people's homes - you know, back in the good ol' days when "faux" paint finishes were all the rage. yes, that was a long time ago. anyone care for tuscan inspired walls? nope. didn't think so.

so yes, me oh my, i've done a lot over the last 2 months. at times, my exuberance and zest for life has overridden the protests of my body - which i've ignored and then learned the hard way. i can do but i mustn't push to do. if i do, i pay the price. harumph. i have to remember that my body is still in a fragile and weakened state. DR H warned me about doing too much too soon. i need to slow down and take it easy. pshhhht! yet, i know he's right. in fact, i'm currently in a bit of a pickle - which is most likely attributed to "biting off a bit more than i can chew" sort of thing.

at the beginning of january, i was given the opportunity and had the great priviledge of getting to go on a youth trip with graham, his co-workers, their families and about 22 junior high and high school students. we spent the weekend up in manning park. that's right. a weekend away with 20+ teenagers in the mountains. i'm sure a few folks feel faint just at the mere mention of that. i, on the other hand, had a ball. did i totally over do it? absolutely. was it maybe a bit too much, too soon? probably...and i'm in a bit of bind now because of it...but boy, was it wonderful to be able to do something i love and have missed so much.

pelting kids covered with shaving cream with cheezies

i used to be a youth worker volunteer. in fact, that is how graham and i met. he was looking for volunteers...and put an "ad" in the church bulletin. i responded. and the rest, as they say, is history. he was looking for volunteers and got a wife! ha ha. true story.

me dominating at playdoh pictionary...oh, yeah, i still got it

right from the start of our relationship, our dream was to have a home open to the kids that graham works with. his ministry and our hearts revolve around "at risk" youth. i went thru a lot of pain in my teen years and as a result have a heart for hurting kids. i always envisioned our life and home serving as a refuge for the youth God brings graham into contact with. yet, life has not at all gone how we had hoped and planned. our home has been a far cry from a place of refuge, rest and comfort. lyme has meant letting go of a lot of our dreams and plans. one day they will return...the old dreams and hopes and even new ones may emerge from the ashes. i finally see that as a possibility again. the trip to the mountain re-awakened that in me.

me in the kitchen helping to feed the masses and no one got food poisoning?
miracles do happen

unfortunately, it possibly may have re-awakened some lingering lyme bugs as well. proper rest is so crucial. you'd think with all the activity and excitement, i would have had no trouble sleeping but i did. i even brought sleeping pills but they did not help. and as the weekend rolled to a close, i started to see some "red flags". the day after our return, i was flat on my back in bed. pain and fatigue my companions. yet, i wasn't completely alarmed as i totally expected it. i was certainly relieved that i was thru the worst of it within 24 hours. however, i've just not quite been able to get a leg up on my fatigue and pain since.

there is much that it could be. yes, the fatigue could be associated with a flare of lyme. yes, the muscle fatigue and burning, searing pain could be lyme or babs or both. it could just as well be due to vitamin deficiencies. makes sense. or it could even be that all the activity has got some toxins circulating.

it could very well be any of those things. i'm concerned. DR H is concerned. HOWEVER, i'm on the road to recovery and i'm mentally staying that course. yes, we may still need to beat back some bugs, but we've got the upper hand now.

i am in a place of rediscovery
and
recovery
and
i am also covered in zits.
on a daily basis, i'm either covered in hives or zits. i'm so cute. the breakouts (face and back) are indication that my body is dumping toxins. that's a good thing but we must bind them up and flush them out and not allow them to re-circulate.

DR H is starting me on an intensive toxin binder. i also have lipemia (fat in my blood) so he's starting me on a binder called cholestyramine. it's a drink that has the consistency of sand. yum.

i am to drink sand 3 times a day for the next week and then add in some herbal antimicrobials. cumanda and lyme transfer factor. these are specific for lyme. fortunately, avery is already on these so i can just tap into her supply. (the "benefits" of having a house full of lymies). i will be on high doses of these for one week. this will give us somewhat of a clearer idea of what the origin of my recent out cropping of symptoms is due to based on my body's response to these therapies. what is very clear right now, is that this is fairly critical time (for both parker and i). during my appt, DR H remarked how difficult we have been to treat and how our bodies have never reacted or responded normally.
"you guys are weird." he said. "you're weird. parker's weird. even your husband is weird." ha ha. true 'dat!

with our complexly weirdness in mind, DR H wants me (and parker) to be seen by DR D in 2 weeks. he is concerned that my symptoms may spell out the need for a short course of either oral or IV abx. he reassured me that if this is the case that it will only take a short course of 6-8 weeks to re-gain control. however, if at all possible, he's wanting to keep me off the pharmaceuticals. there are lots of potent herbs and homeopathic remedies we can utilize. i love that i have a doctor who's not just all about pharmaceuticals. obviously, some intense decisions need to be made and being seen in-office is ideal but not exactly always realistic when your doctor is a 2 hour flight away. fortunately, DR D is only a 2 hour drive away. it is wonderful that DR D and DR H work together to provide care. to fit us in on such short notice, DR D is seeing us on her day off. we're so grateful for the dedication of our docs to get us healthy.

i dyed my hair the color of merlot this week...

ok. so it doesn't look burgundy but it really is.

i figure if you can't drink it, you might as well wear it.

the proof is in the sink...remnants of my new deep merlot hue

ok. i know that seemed to come out of left field. it's my attempt at a not so seamless segue about cocktails. as per DR H's orders, i'll be heading out shortly for my first cocktail...a myer's cocktail that is. not nearly as glamorous as a cosmo and about quadruple the price. if it helps with my energy levels, than DR H will move to help us set that up at home. cool. i could have my own bar before this whole journey is over. after all, i am proficient at re-constituting and mixing IV abx...after that, mixing and making my own cocktails should be a breeze. of course, it's not ideal (is anything about this journey ideal?) but it can be done far cheaper (what? something cheap on this journey?) at home than at a naturopath's office.

however, safety before money. my first cocktail will be supervised under the watchful eye of a doctor.
and lookee here, clock says it's just about cocktail hour, time for me to head out.

cheers!

THE NEXT STEP?

2012-01-20T10:06:00.000-08:00

yesterday marked the end of the 7 day IV provocation trial Parker was on.

from where i sit the next step in our journey appears unclear.

during the 7 day trial, we did see a return of psychiatric episodes. they were mild but they were undoubtedly there. they came at the 72 hour mark of restarting this particular iv drug. this most likely means one thing - parker still has bugs in his brain...and IV treatment is his best shot at eradicating them. and yet, due to collateral vein complications, his PICC line must come out. we've kept it in (nearly 4 months) for as long as we can.

i just want this all to be over. i want it to end. all of it to end.

last week parker hit a wall. he cried. he rarely cries. he rarely even complains. his birthday was in december. he was too sick to have friends over for a party. again. his big plan for his special day was to go for lunch with my dad. he was really looking forward to that. yet, he was too sick and in too much pain to even do that. his birthday lunch and dinner were eaten on the couch.

it was heartbreaking for graham and i. we went to bed with heavy hearts. the next morning, i mentioned to parker how i was sorry that he'd had a bummer day. with a puzzled look, he replied, "what do you mean mom? i had a great day."

gulp. he is an "old" 12 year old. i learn a lot from him.

yet, we all have our breaking point. and last week, he reached his. he came into my room and lay down beside me. even tho' he didn't say anything, i could sense his sadness. it was emanating from him. at first giant, silent tears slowly rolled down his flushed cheeks. yet, he still quietly lay there, trying his darndest to remain strong and brave. "there is strength in tears." i whispered. "it's okay to be sad, buddy. don't hold it in." and then it came. he sobbed for the pain he has endured. he cried out in the pain that he is still in. he grieved for all that has been lost. he vented and gave in to the hopelessness that is only ever a heart beat away. "i'll never get better. nothing helps. nothing changes. i've been sick for over 2 years. this will never end. i never see my friends. i hate taking pills. i'm tired of IV. i hate my life."

all i could do was wrap my arms around him and acknowledge his pain and his fears. yes, it feels like it will never end. yes, it is unfair. yes, it has been too long and too much and too awful. yes, it sucks so bad that it sometimes sucks all the hope out of me too...but there is always hope.

no matter how hard it is to believe, no matter how it appears, this will end. i can't tell him when it will end. i simply don't know. that is one of the hardest parts about this journey. there is no end date to aim for and to hold on to as a beacon of light. will it be 2 more weeks, 3 months, 9 months or 18 months or longer...there is no way to know...we must just hold on even tho' the end is an undefinable, indefinite time frame...we must hold on with no end in sight and somehow hold on to the hope and keep the faith and belief that it WILL end. we have to believe that. we have to hold on to that.

and now we arrive at today. and where we must go and what we must do. and what is the next step.

and i find myself contemplating not great options.

the PICC line must go. that much we know for sure. however, since parker's response to the provocation revealed there are (most likely) still bugs in his brain, then continued IV is the best option. IV most effectively penetrates the blood/brain barrier. it is possible to achieve that with oral treatment but far more difficult. continuing IV means pursuing a PORT surgery. with no support coming from the medical system here, this means it would be done in the usa. estimated cost is between $4,000 to $7,000. the cost plus dealing with our kid being put under general anesthetic as an out of country patient is unsettling and unnerving. yet, we have absolute faith that God would make a way, if that ends up being the best option for parker.

the other option? have faith that he's had enough IV and that oral abx would continue to keep him on the road to recovery. have faith that the right combo of oral meds would be enough to penetrate the blood/brain barrier. have faith that ceasing IV wouldn't cause a backward landslide. of course, if he deteriorated on orals, we would move quickly to get a port and re-start IV treatment, however would that lapse in IV be destructive to his over all progress? what if it gave the bugs time to proliferate in his brain again? as difficult as it still is, no one wants to go back to what it has been.

yet, a decision must be made.

that is the weight that sat with me yesterday as i waited for DR H to call. our appointment was scheduled for 1:45pm. it is rare that he is on time - (which is a sign of a good doctor, if you ask me.) he doesn't rush his patients or their appointment. as a result, he is often running at minimum 30 minutes behind. generally by afternoon, it is more like an hour or two. at any rate, i knew yesterday would be a long day of waiting and wondering what the next step would be. and it was....DR H didn't call until 4pm and worst of all - we MISSED his call. our stupid phone malfunctioned. we spent the next hour or so trying to get through to him. finally his receptionist got thru to us and our appointment got re-scheduled to this morning.

needless to say, by that time, i had just had it. the stress of the day wore me down and i was grumpy, jumpy and over emotional. i ate my way thru a bowl of ice cream, 3 oreos, 2 pieces of rocky road fudge and half a bag of licorice. not kidding. i was comatose by 7pm. perfect. just what i was after. even still, the tension still hung thick in the air. and the kids picked up on it. parker knows what options are being weighed. he's upset. he's so done with it all. after an initial angry vent, he went into shut down mode and just got really, really, really quiet. graham was on edge and dis what he does to cope - work. he buried himself in his office until 2am. great for the work video he's making not so great for his energy levels. avery had a major 2 hour long meltdown. clearly, it was not a stellar nite.

thankfully, the phone co-operated this morning and DR H was only 15 minutes behind schedule. my appointment was fairly straight forward. and the next step in my journey was fairly clear and a plan of action was quickly forthcoming. (will update that tomorrow)

parker, on the other hand, not so simple...and we still don't know what our next step will be. DR H really felt he needed a few more days to mull things over. we don't at all feel that he doesn't know what to do. we believe he does. he just wants to take time to weigh all the options and make the very best plan of action. stopping IV treatment is not remotely ideal right now but he is trying to figure out if there is anyway he can work around it with oral treatment. if not, then we will have to move forward with getting a PORT. the weight of this decision weighs heavy on all of us. there is a lot riding on this and a lot of pressure bearing down on DR H. even tho' it sucks to have the unknown hanging over our heads for a few more days, we are so thankful that DR H is not willing to rush to make such a critical decision.

we expect to know what the next step on this journey will be by monday evening. we'd appreciate your prayers for wisdom for DR H this weekend. seeing as i've depleted our sugar supply, i shall face this weekend with full mental and physical awareness. therefore, we'd appreciate prayers for peace to reign in our hearts and home.

in parting, i will close off with this prayer a friend, who is in the thick of her own fight with lyme, sent me this week. it's been a source of tremendous comfort and a much needed reminder to keep trusting.

"COME TO ME, and rest in My loving Presence. You know that this day will bring difficulties, and you are trying to think your way through those trials.

As you anticipate what is ahead of you, you forget that I am with you--now and always.

Rehearsing your troubles results in experiencing them many times,
whereas you are meant to go through them only when they actually occur.

Do not multiply your suffering in this way! Instead, come to Me, and relax
in My Peace. I will strengthen you and prepare you for this day, transforming your fear into confident trust."

THE FIRST 7

2012-01-15T14:43:00.000-08:00

i am back from my self-imposed vacation from email, FB (for the most part) and blogging (i hope). i guess you could say i had a holiday hiatus of sorts...just needed to truly unplug and have as few distractions as possible throughout Christmas. it was nice. it really "set apart" the time for me...and gave me time to attend to such frivolity as adorning the dog in holiday attire.

my deer harrison

it was good (albeit harrison might disagree).
but now I'm way behind on here
and
a lot has been going on. i can't believe we're already heading into the third week of january! my word! time has ripped by with lightening speed - just the first 7 days of 2012 alone have brought with them a torrent of change.

it's been a mishmash of everything...from "out with the old, and in with the new", from challenging to exciting, from bittersweet to celebratory, from days where the lingering feelings of the "same old, same old" still taunts us to the days where revitalized energy has led to the rediscovery of old hobbies and interests, from the struggle to do the mundane to the ability to learn a new skill.

and yes, a lot of it that was rolled into the first 7 days of the new year! our "out with the old, in with the new" encompassed new carpeting! our home is a rental. we've lived here 13 years. the carpet was abused by many tenants before we moved in. we did our best but it really was time for it to go! it was 20+ years old, the new was needed! the old had once been white but was now grey (gross!), the new is (ironically) grey (ha ha!).

out with the old...

we had asked our landlord before christmas for new carpets. despite remarking at how expensive new carpeting would be, the landlord sent out a carpet guy to do an estimate but when we had not heard back after several weeks, we figured the non-reply was indicative of a "no". we were immensely surprised and thrilled when we got a call from the carpet guy the day before new year's eve saying,
"your carpet is in, i'm coming on the 3rd to install it!"
apparently the landlord had approved the request - but hadn't thought to tell us that!
it was a mad scramble and a ton of work to move furniture on such sort notice but it was sooooo worth it! you really don't realize how much 'stuff' you have until you have to move it. contrary to how it may appear, i'm not a hoarder!!

i am not a hoarder. i am not a hoarder. i am not a hoarder.

we feel incredibly blessed to have the new carpet. we are enjoying treading on the plush newness and i'm becoming an avid vacuumer! and so very grateful to have the energy to be able to do so!

...in with new!
note: i was already vaccuuming circles around my poor exhausted hubby

soft, squishy, springy underlay is also wonderfully forgiving on the knees as well! that has been a welcome comfort as many of the changes we've experienced in the first 7 days of the new year have required a substantial amount of time spent on our knees in prayer. prayers of thanksgiving, praise, awe at the wonder of how God works and prayers for wisdom and strength and for surrender, deliverance and ultimately continued healing. all of it is noteworthy enough to be deserved of its own designated post...which i'll get to eventually. for now, i'll start with the most recent because it is the most pressing prayer item.

last thursday, (jan 13), parker started a high dose, one week round of an antibiotic that hits the bugs in the brain. his response to this "provocation test" will determine whether or not we need to continue IV treatment (which would mean travel to the USA for a PORT surgery). you might recall, that the original plan was to have his picc line pulled the first week of january.(click here to refresh your memory) amidst all the changes there were, the removal of his PICC line was not one of them. this has been delayed because he had an intense herx during what was supposed to be his final round of treatment (this was over christmas). this intense response caused great concern as we saw a return of some psychiatric symptoms. this is an indication that he may still have "bugs" in his brain...neuro lyme is most effectively treated with IV meds. hence, the delay in picc removal and the need for this last minute, one week provocation test. we will be speaking with DR H this thursday (jan 19) and we expect a decision about IV treatment will be made at that time.

we'd appreciate your prayers...of course, we greatly desire that no more IV treatment will be needed however, we are specifically praying for God to clearly reveal what parker's body needs. love you all. thank you for your continued support. it is of great comfort to know that this pivotal week will be blanketed with prayers.

SHANNON'S SUPER M.U.D

2011-12-20T14:11:00.000-08:00

here's my latest M.U.D. (Medical UpDate) and the scoop on the outcome of my appointment with DR H. i have super news to share!
i have been OFF of all abx since aug 31.

yup, you read that right...i've been OFF both oral and IV abx for nearly 4 months.

i'll give it a moment to sink in... after all, it is mindbogglingly, fantastically awesome news to share.

yup. doing the happy dance.

i have been ON aggressive oral abx treatment since april 2007...and IV abx since jan 2008. so for me to be OFF of abx for the past 4 months and be doing (relatively) well indicates that my lyme and co-infections have been brought down to more manageable levels and my immune system is beginning to do what needs to be done in order to keep them that way.

clearly, this is huge progress.

i have NEVER been able to maintain any level of health OFF of abx in the past. often, there has been a very fast deterioration and a very rapid return of debilitating symptoms during previous trial runs of drug holidays. if co-infections are at a high load, lyme rears its ugly head very rapidly upon withdrawal of abx treatment. however, this has not been the case with me this time. we've not seen any indication of a regression. in fact, i am actually continuing to get stronger and improve. that is an awesome and remarkable gift. DR H believes that this is a good indication that we have finally beaten both my babesia and bartonella infections into submission. at my appointment, there was no talk of "remission" for either of those infections or lyme but i'll take a rendering of "submission" for the time being. that sounds like music to my ears and for now, DR H is continuing to keep me OFF of ABX! HOW AMAZING!

PORTRAIT OF SUBMISSIVE BUGS

i am not able to go so far as to have my PICC line removed. we are not at that stage yet. DR H is concerned that my body is in a sort of 'holding pattern' right now - and that the scales could easily tip either way. partly, because we've seen improvement with me before...only to have it followed by a regression of epic proportions. even tho' i'm doing better and am getting stronger, DR H is very concerned that i am in a very fragile state...after all, my nutritional intake is so super restricted...it's pretty much a non-nutrient intake actually. this does not bode well for building my body's strength or defenses.

since september, i have been intensely reactive to and unable to eat any fruits and veggies. this is certainly no way for anyone to be at the best of times let alone when one is needing to eat in order to build up and strengthen the immune system. this is a critical and crucial time. my body needs to be fueled properly in order to keep fighting...and yet, right now, eating healthfully makes me terribly ill and toxic. i know, right? so bizarre.

basically, i can eat meat and simple carbs...simple being the operative as even complex carbs are triggering toxic side effects with me. i have to watch my fat intake because i have above normal levels of lipids (fat) in my blood. even more bizarre. i am like a skinny fat person. the food re-activity is confusing and frustrating. i LOVE vegetables. that is what my body has always naturally gravitated to...and now, they are quite literally the death of me. so what's a girl to do? for starters, the short term plan is that i will be on on IVs to address my nutritional deficiencies and supplement several of my depleted mineral levels.

and long term? am i looking at a future devoid of fruits and veggies? i can't imagine. but no one really knows what to do with me. over the next little while, DR H is going to be networking with some colleagues to figure it out. we do know that this is most likely related to my mast cell disorder. and if i start to explain THAT, this post will morph into a lengthy and very confusing scientific journal entry...while it is complex to explain, it is all rather fascinating (to me, anyway) so i'm working on a post that'll explain it as simply as possible as soon as possible.

there is much more to talk of...in addition to dealing with my nutritional needs, over the next several weeks my treatment will be primarily focussed on bringing down my viral load (which is very high), and addressing my immune deficiencies (i have issues with both igA and igG deficiencies) and tweaking the meds that are part of the treatment protocol i am on for my MCAD/mast cell disorder.

am i done with abx treatment for good? no. DR H believes i'll still need another round of IV. not sure when and not sure for how long. am i out of the woods yet? no... but PRAISE GOD, there is LIGHT! i feel it. i know we've been at the place before where we dared to think that we could see a pinprick of light at the end of this long, dark tunnel only to fall down the rabbit hole again.

but i'm more hopeful than i've ever been before that my improvements thus far are and will be sustainable...that hope filled confidence truly came to light for me about a week ago.

i was crawling into bed one night and as i was doing so, i had a very odd thought flash thru my mind. i was thinking about how i couldn't wait for the 'morrow. it stopped me short in my tracks...

'hold on,' i thought, 'why am i feeling excited about tomorrow? i have no special plans.'
i nearly toppled out of bed when i realized that it was because i wasn't dreading the day to come...the 'morrow no longer felt like a dreadful burden to bear.

and then the flood gates were released and the tears poured forth... as they do again as i write this and re-live that strange, foreign, amazingly wonderful moment when i experienced the simple pleasure of just being alive.

i haven't felt that way in 6 years.

i do believe it is the dawning of a new day.

SPARKY'S M.U.D

2011-12-16T12:07:00.000-08:00

here's the M.U.D (Medical UpDate) on parker:

i guess the biggest news i can lead out with is that we will be stopping parker's IV treatment sometime in the beginning of january - possibly the first week. what a way to ring in the new year! parker has had a total of 16 months of IV treatment and is looking forward to being free of a PICC and all that it entails.

"viral picc" is going bye-bye!

this is a big deal and a step forward albeit pulling the PICC line and stopping IV treatment isn't because DR H feels parker is done with IV - rather parker's naughty PICC, (whom he named viral picc,) and the development of collateral veins is forcing the decision to end IV.

parker's collateral veins

HOWEVER, DR H is hopeful that parker's symptoms and improvement will be sustainable with oral abx. AND that is exciting! 4 months ago, when parker's original picc, whom he named raymond PICC-aso, suddenly became no longer viable, we HAD to move forward with getting it replaced...without question he needed to remain on IV treatment. so while the PICC removal is premature, it is still a big deal and a "WHOOP! WHOOP!" because we think we can make it without it!

viral picc and his pad during a lymph leak

we are ALL looking forward to bidding viral picc farewell. he has been a very naughty and stressful PICC to live with - he's forced us to deal with lymph leaks, blood clots and bleed outs - additionally, keeping up with the rigors of an IV schedule (at times parker's IV treatment was every 8 hours round the clock) is incredibly exhausting. parker is most looking forward to being able to fully submerge in a tub...(a PICC can't get wet) bathing with your arm above your head is not too relaxing.

before the PICC removal takes place, DR H wants parker on one last very intensive IV treatment regime. this will be added into his existing treatment regime over the next week. once everything is incorporated, we will blast away on the new protocol for a solid 2 weeks. DR H has already prescribed a plan for the oral treatment that will follow. we have a phone appt with DR H on jan 3 as it is expected that there will need to be some adjustments and tweaking made - some of which is dependent on his response to this last course of IV treatment.

it is very clear that parker must still be on abx. he is greatly improved but we are not out of the woods yet. not by a long shot. if he begins to decline on the oral treatment than we will have to resume IV treatment and because a PICC line is no longer an viable option, this would mean that he would have to have an IV PORT. (this is an IV device that is surgically implanted under the skin). we are hopeful that we and he never have to face that. currently, his most vicious infection is the babesia - and there are many potent oral medication options used to treat it.

way back in october, DR H (temporarily) stopped parker's antiobiotic treatment while we got the mast cell treatment protocol underway.
the reason this was done was two-fold:

first, it was done so as not to muddy the waters, so to speak. we needed to have a clear clinical view as to whether or not the symptoms that were suspected of being mast cell related were responding to the specific treatment for it. there is much cross over b/n the symptoms of lyme and systemic mast cell disorders. we were pretty certain which symptoms were mast cell related and which were lyme/babesia related but it was important to get as clear a picture as possible. (is that clear as mud!)

secondly, it is not unusual practice for a LLMD to put a patient on an "abx holiday" or to "pulse" abx - this gives the patient's body a rest from the meds and helps the physician re-evaluate the patient's health and symptoms. the goal of treatment is to put the infection into remission and kick start and support the immune system into taking over. the response of the patient during these drug holidays helps guide the physician in deciphering what the next step in treatment is needed and how best to address the specific needs of their patient.

during the four weeks that parker was off of the abx, we saw a positive response in the symptoms that were suspected of MCAD. primarily, these are flushing, loopiness/psychiatric outbursts immediately following any considerable exertion, mystery spots, chest/heart pain and syncope-like episodes (near fainting/blackouts). there was some lessening of his joint pain as well. it was wonderful to see such a remarkable improvement in those symptoms! however, his babesia/lyme related symptoms became more pronounced and his overall health deteriorated. once he was re-started on the IV and oral abx used to specifically treat babesia, he improved...albeit had to endure some pretty rough herxing. a wonderful and unexpected bonus of the MCAD treatment, is that his herxing has been less intense and better managed.

in fact, the MCAD/masto diagnosis really is the missing link to several symptoms that have puzzled and troubled DR H and DR D for quite some time. back in spring of this year, DR H kept remarking that he felt like he was "missing something" with parker. it is good to have found the missing piece to the puzzle. we are hopeful that parker's fight against lyme and babesia will be a little more straightforward and a little less complicated now that his MCAD/masto is being treated.

there is more dirt on parker but i think if i write any more at this point, it'll be clear about as mud...

LETTING GO

2011-12-15T23:30:00.000-08:00

if you are on FB than you have been privy to my venting and pain today and you were witness to my raw emotions...

"i am once again picking up the pieces after dealing with more medical BS - so sick and tired of a blind eye and deaf ear being turned on Parker's suffering. i feel murderous rage and inconsolable sorrow."

in short, we had an appointment at BCCH today for parker. it did not go well. this appt had been in the works for some time and DR H had spoken with this doctor. while we had no expectation that this doctor would jump on board with treating parker, we were hopeful that this appointment would lead to some care and support. that did not occur.

really, there is not much point delving any deeper than that. it is the same old same old and as such, it raised the ire, the pain, the mistrust, the disappointment, the sense of abandonment that we carry from the many similar encounters that have gone before. as natural and needed and normal as it is to walk thru the emotional fall out of it, i will not allow it to define me. define us. define this journey.

"forgiveness is about letting go of the hope

that the past

could have been different."

this is NOT about what doesn't happen. it is NOT about help withheld. nor the injustice of it all.

this journey is about the overwhelming power of God at work in our lives to bring us to a place of healing and redemption.

"Then we cried out for help to the Lord, the God of our ancestors. He heard us and saw our suffering, hardship, and misery. By his great power and strength he rescued us from Egypt. He worked miracles and wonders, and caused terrifying things to happen. He brought us here and gave us this rich and fertile land." deut 26:7-9

it is about His sovereignty over the injustice of it.

"You'll know then that I am God. No one who hopes in me ever regrets it... I'm the one who's on your side, defending your cause, rescuing your children...Then everyone will know that I, God, have saved you—I, the Mighty One of Jacob." isa 49:23b,25,26b

it is about His provision and His help

"I lift up my eyes to the mountains, where does my help come from? My help comes from the LORD, the Maker of heaven and earth." psalm 121:1-2

He cares. He sees. He hears. He heals. He loves us.

"She said, 'I can't watch my son die.' As she sat, she broke into sobs.
Meanwhile, God heard the boy crying. The angel of God called from Heaven to Hagar, 'What's wrong, Hagar? Don't be afraid. God has heard the boy and knows the fix he's in. Up now; go get the boy. Hold him tight. I'm going to make of him a great nation." gen 21:16-18

OUR CHRISTMAS BABY

2011-12-14T10:24:00.001-08:00

12 years ago today, my hair looked like this:

and
i also gave birth to our christmas baby... parker noah aka sparky

welcome to our family, sparky

parker's actual due date was christmas eve
however, given my first labor and delivery went at the lightening fast speed of 1 hour (i know. don't hate on me!) - and produced a hefty 9lb 1oz first born son, taylor, my doc felt going full term the second time around was asking for trouble...possibly a "by the side of the freeway" type of delivery

it's impossible to know exactly how any labor and delivery will go but at any rate, there was no way my doc was letting me go full term, so in early december, our doc, graham and i sat down, calendars and day timers open, to chose the day to convene upon the hospital
given the time of year, it was a rather convenient thing to do and it definitely appealed to my organized side!

when we arrived on the 14th for the planned induction, the labour and delivery RNs were less than impressed and rather quite skeptical - stating that this was a matter of convience rather than necessity

i didn't argue
after all, every labor and delivery is different
i couldn't guarantee a speedy delivery and i wasn't about to make claims of how i wouldn't take up too much of their time....after all, you just never know...

of course, they were shocked into a stunned silence when we welcomed parker noah into the world...a mere 45 minutes later. (i know. don't hate on me!)

set for a speedy delivery

our easy going, affable, laid back, happy go lucky little christmas baby...

our little sparky

and now he is 12.

parker - summer 2011
little pool fun with his dry-pro picc line swimming cover

happy 12th birthday to my christmas baby, Parker. you amaze me and i learn from you - you are tough. you are brave. you are determined. you are witty. you are tender-hearted. you are one of the sweetest, most compassion-filled people i know.

you are the Spark-y in our lives and we love you.

HOME SUITE HOME(wood)

2011-12-11T09:49:00.000-08:00

we're home
and
LUCKY to have made it home! we almost didn't make it thru TSA security checkpoint at oakland airport...and nearly had a heart attack as a result!

note to self: ALWAYS travel with passports

we handed over our nexus cards to the officer at the security checkpoint...just like we've done 1,000 times before.

security says, "i need to see your passports."

"UMMMMM....we don't have them."

security grimaces, shakes his head and authoritatively states, "i'm sorry i can't let you thru with just your nexus pass."

i nearly dropped dead on the spot...visions of the plight of tom hanks character in the movie Terminal streamed through my head. my stomach took a nose dive and i am pretty sure the pounding of my heart was volatile enough to cause seismic shifting in the tectonic plates beneath my feet.

my ghostly white husband stuttered, "we don't have our passports. ummm, my wife and i have our driver's licenses...but nothing for the kids. would that suffice?"

as if echoing through some long tunnel came the same reply, "i can't let you through. i need secondary PICTURE ID for EVERYONE. nexus is not enough."

at this point, my faintness was quickly replaced with extreme irritation, forget seismic tremors, dark, thunderous clouds were booming above me now.

"SINCE WHEN?" i huffed, "this has never been an issue before and we fly out of this airport every 3 months. as a matter of fact, for the last 8 flights we've been rather abruptly told to put our passports away because they are NOT necessary because we have nexus."

totally brazen, i know, right? but i was parlaying between panicked desperation and P-O'd incredulousness.

then i figured i better temper my irritation with an air of demurely, pleading desperation. so i turned my big, teary blue eyes on him and pathetically stared him down.

and graham quietly added, "um, we just flew in 5 days ago. nexus was acceptable then, has something changed?"

finally, he took pity on us. "ok. fine. i'll let it slide this time. obviously, there are some consistency issues with the TSA. just make sure you travel with passports from now on."

oy.
we passed thru the rest of the security screening without incident. what a relief...after that, i was worried...

we finally made it to our gate - only to find out our flight would be delayed an hour and we couldn't access the airport wi-fi! argh! but at least we made it home.

yes. home suite home. i meant to use "suite" not "sweet". that was an intentional misspell and not the result of my lyme brain (albeit we had one epic lyme brain fail moment on this trip)

homewood suites is the hotel we stayed in. it is our home away from home. this was a second stay in california. we accidentally stumbled upon this amazing chain of hotels this summer. we had appts scheduled in seattle with DR D...and had tagged them onto the tail end of our holiday on whidbey island. which meant that we expected we'd have the dog with us therefore we had to book a dog friendly hotel.

with some research, graham found the homewood suites. it ended up being an AWESOME discovery!
why?
the rates were decent and included breakfast and it is a "suite" hotel. suite = more space... space for meds. space from kids :). additionally, they have a pool. they have a hot tub. they have a grilling area. they even have bball courts. they serve fresh baked cookies EVERYDAY at 3pm. the one in california is in SJ - which is always at least 10 degrees warmer than SF. it has AMAZING staff. and it ended our somewhat fun yet somewhat stressful on line priceline bidding.

we jumped for joy during our first seattle stay - when we discovered that the rate included breakfast AND supper. we couldn't believe it. aside from the great ammenities, it was incredibly cost effective. a bonus was that it meant graham got a break from cooking. we were hooked and we were so thrilled with our stay that we decided we'd look for one in the SF area.

we found a homewood suites in SJ and booked a room for our august visit. we arrived and we were incredibly disappointed to be checked into a SUPER SMALL room... like "i'm breathing down your neck" teeny tiny small and NO storage - given the staggering amount of meds and supplies we travel with there was no way to "make" it work.

5 days worth of IV supplies

i went back to the front and asked the gal if there was a room that was a bit bigger. i explained the configuration of the room we had had in seattle and explained we had thought that that was what we had booked for at this hotel. she was so helpful and said, "no problem, i know exactly what you are talking about and yes we have that same kind of room here. i'll change rooms for you."

she went on to say that a room was available but it was still being cleaned, so we wouldn't be able to check in right away.

"oh, no prob." i said.

it really wasn't. i was just so grateful and relieved they could put us in a bigger room. it was time for parker's next dose of IV...but hulloooo, i've done ivs in airports, airplanes and just about everywhere under the sun. certainly setting up shop in a hotel lobby didn't phase me in the least.

IV in the car

but i figured it could alarm the hotel staff. so i said, "hey, my son's due for his next dose of IV. i'm just gonna set up shop here but just so you know - it is all needle-less and not bloody in the least. just want you to know so as not to alarm you."

guess that alarmed her. it was really NO BIG DEAL to me. honestly. and it is so normal to us, i guess we forget how abnormal it really is!

IV at in-n-out

"OH no!" she said, "let me see if something is available now."

"really this is NO BIG DEAL" i said. "we do this all the time and in less than appealing places, i might add! your lobby is lovely. there is coffee. there are cookies. this is super."

she didn't even look up as she frantically clicked away, eyes fastened on her computer screen.

"oh, look!" she gasped in sheer relief, "there is a room available. i can upgrade you for free - it's a 2 bedroom, is that okay?"

"is that okay? are you kidding me? that's awesome!!" i could hardly believe my ears

in short order, i had a room key in hand and we were off to check out our new digs.
i opened the door to room 304 and proceeded to skip, dance and tra-la-la-la my way thru the spacious suite. 2 bedroom, 2 full bathrooms, living room, kitchen AND 3 flat screen tvs. i thought i'd died and gone to heaven. the kids thought i was certifiable again.

we were so thrilled and so grateful that we bought the front desk girl flowers.

at dinner that night, the hotel manager, doyle, came by and introduced himself. (probably curious about who that family, with the copious amount of drug paraphernalia, was that had checked in to rm 304. ha ha.)

he introduced himself. we chatted. he asked if we were there on vacation.

um. no. medical reasons.

and thus our story was told.

"how often do you come?" he asked
every 3 months we said.

"here's my business card. you call me before your next visit. i'd like to help you out with accommodations on your next visit."

that is how we found ourselves back at our home away from home again.

a couple of weeks ago, graham gave doyle the manager a call. he let him know we would be back and booked a 1 bedroom because that is what we can afford. we had no expectations.

last monday afternoon, we arrived at homewood suites
there was doyle on the steps.
ready to greet us and check us in.

front desk clerk smiled at graham and said
"wow, you know your somebody when the manager checks you in"

despite the fact that we had booked a 1 bedroom, doyle gave us a 2 bedroom at a rate that is even less than a 1 bedroom. how astounding! we were blown away - in fact he even gave us "our room" again - #304.

once again, i found myself skipping, dancing and tra-la-la-laing my way through our home suite home(wood)

thank you God for doyle and our home away from home.

TRIPLE "A" DAY

2011-12-07T09:51:00.001-08:00

we are blessed with
Astonishing support, an Amazing doctor and an Awesome God.

there is much to process after our appt's yesterday... we have confirmation of an additional disease but that is okay! God is sovereign over it all. it is a mast cell disorder.

i will write a more in depth post next week but for now here's a very brief introduction to the world mast cell disorders.

Mast Cell Diseases comprise disorders characterized by accumulation of genetically altered mast cells and/or abnormal release of these cells’ mediators. everybody has mast cells and they play an important role in the body however, in patients with mast cell diseases, the mast cells become hypersensitive and out of control.

Mast cell diseases include systemic mastocytosis (SM), where the body produces too many mast cells, and mast cell activation disease (MCAD), where there is a normal number of mast cells but they are too easily activated. mast cells contain chemicals and when they are triggered they release (called degranulation) these chemicals. this toxic overload increases inflammation levels and can cause both skin rashes and major systemic alterations.

a really good tutorial on mast cell disorders can be found by clicking here on these youtube videos on mast cell activation symptomatology. this is a 3 part series put out by the mastocytosis society.

parker and i both have a mast cell disorder. at this time, we have a diagnosis of MCAD however, our symptoms, both skin and systemic, make a diagnosis of SM a possibility. a diagnosis of SM is made thru skin and bone marrow biopsies. (eek!). it would be critical to undergo this testing, if there was a difference in the way the two disorders are treated. however, the drug treatment is the same for both. furthermore, treatment is aimed at symptom control and neither disorder is curative. in the future, it may become necessary to rule in or rule out SM, but we will cross that bridge if the need arises.

for the time being, the symptoms that were suspected of being mast cell related in both parker and i are responding positively to the treatment protocal. praise God!

one would think i would be greatly discouraged and downtrodden to be dealing with this. however, the way in which this diagnosis came about is nothing short of a miracle. this is considered a rare disorder and our diagnosis was an undeniably God engineered reveal. i truly stand amazed at the ways in which God works. it is quite the story and i hope to have it down on paper to share in the coming weeks.

on the lyme front, both parker and i have had some major breakthroughs in our battle with lyme, babesia and bartonella! Praise God! i will break down the details and next steps in our treatment in a later post. as usual, we left our appt on information overload and with a lengthy and detailed treatment regime. the likes of which will take several weeks to implement.

thank you to each and everyone of you for your amazing show of support - i can't express what it meant to be able to share those FB "likes" and your precious emails with parker and avery. they are tangible reminders of just how many folks we have standing with us. what an incredible gift you have given our family. we are touched and humbled that you choose to walk this journey with us.

UP, UP AND AWAY

2011-12-06T12:26:00.000-08:00

we are in SF to see DR H! SURPRISE! my intention was to blog about our upcoming trip ahead of time but that (clearly) did not happen.

we flew into Oakland yesterday (monday) morning, hit an In-N-Out Burger - thankfully, i can still eat the burgers - so long as they are devoid of anything somewhat healthy - such as the tomato, onion & lettuce - veggies are still off limits for me, and then made the short drive to our hotel in San Jose. even though our plane already landed, Parker and Avery haven't.

avery and parker
up, up and away...

it is hard to believe it has only been 3 months since our last in office visit. in some ways, the time has gone fast, in other ways it's gone slow. so much has happened since our last in office that it's hard to wrap my mind around it. i am incredibly relieved to be here.

this afternoon, we are heading to our appointments with DR H...and i am asking for major prayer. please pray for discernment and wisdom for DR H - I believe some really critical and pivotal decisions need to be made today.

if you would be so inclined - we would LOVE for you to drop us a line - either here on the blog, on FB or at my email sngoertzen@gmail.com it would mean the world to us.

the simplest message of "i am praying" is all that is required for us to know that you are standing with us and we are not alone.

we love you all and are so appreciate of your love and support!

SCHOOL OF HARD KNOCKS

2011-12-03T09:56:00.000-08:00

142.5 days
that is the number of days of school that parker missed last year. the year before that (the year he got sick) he only made it a handful of times.

clearly, that is no way to get an education.

i have taken over his education and am homeschooling him.
clearly, that is (still) no way to get an education.

i am no teacher.
i am a fish out of water.

this business of full time home schooling is new this year. the public school that he has attended since kindergarten did not have the resources available to support him in the way that he needs to be supported.

naturally, parker's case is unique. it is not something that the school has encountered before. the hourly fluctuations of his symptoms and the never knowing how he will be makes setting up any sort of structure or schedule pretty difficult.

by last spring, we finally had a plan that seemed to be working well. he was meeting and working with a resource teacher twice a week for 45 minutes each time. his tutor lisa, who has been working with him since he got sick in grade 5, was working with him once a week and liaising with his resource teacher. this was working well and for the most part, despite his insanely fluctuating symptoms, he was able to make it to these sessions. the goal was to keep up his math skills and keep him as involved and part of the school community as possible. the latter was (is) so important to his emotional well being.

by the end of june (last year), we felt we had hit our stride with this plan. it was working well. it was written into his IEP (individualized education plan) and we were hopeful that this plan would be able to be carried into this year, his grade 7 year, as seamlessly as possible. at the end of june a meeting was set up with the school administration to finalize this plan...or so i thought.

unfortunately, that did not occur.

to be frank, i left that meeting (end of june) feeling as though we were being pushed out the doors of the school.

the first 60 minutes of the 90 minute meeting were spent promoting a distant ed program...in ANOTHER school district. i was strongly encouraged to consider and look into that for parker for this year. on one hand, it did make logical sense to weigh that as an option. a home schooling/distance ed program would provide more continuity and be able to provide some additional resources and support that the public school is just not equipped to deal with HOWEVER, in order to tap into those resources, we would have to travel to the distance ed facility...it is a 2 hour round trip commute from our home. how in the world does that make sense when he struggles to get to his public school which is literally right out our front door? additionally, if we chose to enroll him in the distance ed program he would no longer be able to participate in anything at his school. that sucked. and it seemed grossly unfair. he has already suffered so much loss...now to consider that he could lose his last bit of ties to his peer community was truly upsetting.

the last 30 minutes of the meeting were spent on going over his IEP. i was told that the two 45 minute sessions had only been done as a special allotment for his unique situation and that it was not possible for them to continue next year.

if no resource time was available to him, than how would he be educated given his special needs and medical condition?
no one could tell me.

the meeting kept getting steered back to the suggestion of the distance ed/home school option. i was there to problem solve and work toward a solution that would keep him IN HIS school that sits less that 200 feet from our front door. i felt like i was the only one endeavoring to do that.

i was given no solution and the only help being offered was the vague statement, "he will be supported by a classroom teacher. there may or may not be an EA in that classroom, EA's are not there for an individual child and there was no resource time available."

to be fair, i believe this is really an administration and district issue. parker has an IEP (individualized education plan) and is designated with a disability within the education system which means the school district is than given funding to provide support for him. however, how the district allocates those funds is at their discretion. technically, this funding should be enough to provide him with some EA support and resource time - however, the funding is given to the individual school as a lump sum. from that lump sum, the support for many students, with varying disabilities, must come from that. there is only so much to go around. i've talked with many other parents from the school who have run into this same brick wall in our school district.

however, it is what it is. i feel more sad than mad about it and i feel bad for the teachers. their hands are tied. what i choose to focus on is the amazing support we were given over the past 2 years. parker's teacher, EA and resource teacher worked so hard to keep him involved and feeling part of the community. we are so appreciative of this. they came up with creative ways to keep him feeling as if he was still part of the school community even though he was absent most of the time.

Parker's New Classroom

we were truly blessed by their support and ongoing efforts to keep parker connected to his classroom and classmates. that has played an integral role in keeping up his spirits over the past 2 years. it has been HUGE. the thought of him no longer having that ripped my heart out. added to that, was that this is his grade 7 year. the thought of him MISSING all that encompasses this pivotal year (grade 7 grad, camp and high school tours) not to mention the socializing and student life is hard. he's been at that school since he was in kindergarten. many of his classmates he's known since pre-school.

however, keeping him enrolled in a school that he rarely is able to attend and would have no real formal support at, didn't make a lot of sense either. emotionally, i wanted to keep him there...even the little bit he could go at least allowed him some socializing and a break from the daily regime of pills, IV and survival. yet, logically, sporadic attendance is no way to get an education. i get that. we spent the summer processing all of it and weighing the pros and cons. and of course, hoping that he would make a miraculous recovery and just be well enough to head back to school in the fall. one can hope. always. but the reality is/was that the road to recovery is a marathon not a sprint.

as we mulled it over, our greatest concern was how parker would feel about not being enrolled in his school. he was surpisingly open to the idea of homeschooling. he's a pretty remarkable kid. strong. brave. uncomplaining. resilient. and wanting to learn. and motivated to do so. and willing to let mom become his teacher.

with that, the decision was made.

i am homeschooling.
shoot me now.

parker went into it with great enthusiasm.
i, on the other hand, did not.

i had a bad attitude - my own health can make just everyday tasks challenging and we're barely treading water with the weight of parker's medical needs and now the full weight of his education has been solely placed on my shoulders.

i felt inept - teaching is NOT my thing. so totally out of my comfort zone. i have always had a healthy respect for teachers. i think they have an incredibly tough job. i don't envy them and i don't want to be them.

i felt overwhelmed - in september, graham met with the teacher and principal from the distant ed schooling program we had signed on with. he came home with 60 pounds of books and a mountain of paperwork. i was unable to attend because i was home, bedridden with fluid on the brain. hardly the way to start my teaching career.

i felt incapable - there is nothing like a little hydrocephalus to complicate my reticent foray into teaching but that is the way it was.

additionally, i felt stressed out. beyond help. lost. confused. dazed. panicked. helpless. crazed. terrified. woefully ill-equipped.

enter lisa.
i would have had a nervous breakdown if it wasn't for lisa
God bless lisa

lisa & parker, oct 2009

lisa has been tutoring parker for the past 2 years.
and
has been an absolute God send

we met lisa at one of the first lyme support group meetings we went to - way back in the early days, before the boys got sick, when it was just me starting treatment. those days are pretty clouded and i don't have a lot of memories of them. like i don't remember meeting lisa. (sorry, lisa, you know i love you and you are totally un-forgettable)

we had only managed to stay in sporadic contact in the years since we had first met - both of us consumed with surviving the early ~~days~~ years of treatment. lisa has lyme too. she is also a patient of DR H. i had no idea that lisa read my blog. 2 years ago, when parker fell ill and was no longer able to attend school i blogged about how concerned i was about his education. imagine my surprise then, when i got an email from lisa in response to that. in her email she offered to come once a week to tutor parker. (prior to falling ill with lyme herself, she worked as a full time teacher) we were blown away by her offer. here was someone, sick herself, who was willing to volunteer her time and sacrifice her limited energy to support us? it was mind blowing. but that is exactly what she did and has done for the past 2 years now. she continues to come every week - despite the fact that she lives nearly an hour away from us and is battling this disease herself.

like i said, she is a GOD send.

parker & lisa, nov 2011

additionally, she could not be a better fit for parker. lisa has lyme. lisa has bartonella. lisa has been to hell and back with bartonella. lisa gets the disease. lisa gets parker.

like i said, lisa is a GOD send.

and poor lisa, probably had no idea what she was really getting herself into when she first sent that email 2 long years ago....like how tutoring would morph into the added job of consistently peeling the mother of the student off the ceiling. like how said mother would NEED ~~almost as much~~ MORE support than the student.

i had NO IDEA what to do with the 60lbs of text books and work books that the distance ed program sent home to us. i had to fight the urge to burn it all. it would have made a spectacular blaze.

i had NO IDEA how to organize the curriculum.

i had NO IDEA where to start...except to dumbfoundly sit and stare at it all.

it would be safe to say, that i would probably still be sitting here blankly staring into air trying to squelch that burning desire (ha ha) if it weren't for lisa.

at the end of september, she came over and spent 4 HOURS formulating a teaching plan for me. using a whiteboard, she mapped out the curriculum into a weekly plan.

whenever i see that white board, i hear angels sing.

hallelujah, hallelujah, ha-lle-luuuuu-jahhhh!

it has saved my sanity.
and so have lisa's once a week ~~therapy~~ tutoring sessions.

term 1 just wrapped up.
and
shockingly, not only have we survived...but parker has thrived.

Parker's Research Project on my dad's dad

yesterday, we had a big meeting with his distance ed teacher. she was amazed at how much parker had accomplished. i concur. he decided to tackle all four of the core subjects. math. science. language arts. social studies. he successfully completed the (adapted) course work.

he has done more work in the past 3 months than he has done in the past 2 years. yes, some of this can be attributed to the fact that he is making some progress in his health fight - primarily brain cognition - however, a lot of it has to do with his sheer determination. there have been many, many days where he has been lying on the couch in agony, on a heating pad, pumped full of morphine and STILL did his work.

he has made me look good.
and
i've learned a lot.

life has handed us some tough blows.
lyme has taught us some tough lessons.
it's landed us squarely (and at times, flat on our backs) in the school of hard knocks

i can do this.
we can do this.
we are doing this.

i'd even assert that we've had some fun along the way. it's good. it's been really hard but it's been really good too. i still have my "i can't do this" moments (every week) but then i see that white board, i hear angels sing, "yes, you can!"

thank you God for lisa.

TAYLOR'S P.U.S.H STORY

2011-11-29T23:21:00.001-08:00

this is taylor's P.U.S.H story.

it's been a long while since i posted an update about taylor and his fight with lyme and bart. there is a reason. he asked me not to. he wanted to share his story in his way when the time was right.

TRUST - Taylor's first tattoo

several weeks ago, he indicated to me that he was ready to share where he is at in his journey and what God has been doing in his life. before i impart to you what he wrote for me to share here on my blog, i wanted to share a little story i read nearly a year ago. at the time, it stuck with me because it reminded me so much of taylor...little did i know just how parallel his own story would end up being.

P.U.S.H

"One night, a man was sleeping in his cabin when suddenly his room was filled with the light and the Creator appeared.

The Creator told the man he had work for him to do, and showed him a large rock in front of his cabin. The Creator explained that the man was to push against the rock with all his might.

The man did the same, day after day. For many years he toiled from sun up to sun down, his shoulders set squarely against the cold, massive surface of the unmoving rock, pushing with all his might. Each night the man returned to his cabin sore, and worn out, feeling that his whole day had been spent in vain...

Since the man was showing signs of discouragement, the Adversary decided to enter the picture by placing thoughts into the man's weary mind:

"You have been pushing against that rock for a long time, and it hasn't budged. Why kill yourself over this? You can never move it," thus, giving the man the impression that the task was impossible and that he was a failure. These thoughts discouraged and disheartened the man. "Why kill myself over this?" he thought. "I'll just put in my time, giving just the minimum effort; and that will be good enough." And that is what he planned to do, until one day he decided to make it a matter of prayer and take his troubled thoughts to the Creator. "Creator," he said, "I have labored long and hard in your service, putting all my strength to do that which you have asked. Yet, after all this time, I have not even budged that rock by half a millimeter. What is wrong? Why am I failing?"

The Creator responded compassionately, "My friend, when I asked you to serve me and you accepted, I told you that your task was to push against the rock with all your strength, which you have done. Never once did I mention to you that I expected you to move it. Your task was to push." "Now you come to me with your strength spent, thinking that you have failed. But is that really so?

Look at yourself. Your arms are strong and muscled, your back is sinewy and brown, your hands are callused from constant pressure, and your legs have become massive and hard. Through opposition you have grown much, and your abilities now surpass that which you used to have. Yet you haven't moved the rock. But your calling was to be obedient and to push and to exercise your faith in My wisdom. This you have done. I, my friend, will now move the rock."

At times, when we hear a word from the Creator, we tend to use our own intellect to decipher what He wants, when actually what the Creator wants is just obedience and faith in Him.... By all means, exercise the faith that moves mountains, but know that it is still the Creator who moves the mountains. When everything seems to go wrong ... just P.U.S.H.!

P.U.S.H. - Pray Until Something Happens

taylor spent 16 months undergoing intensive antibiotic treatment for lyme and bartonella. during that time, he underwent great suffering, experienced the isolation that comes from living with a disease that is poorly understood and felt the hopelessness that comes from battling an enemy that has been deemed medically incurable. he has now been off of treatment and all antibiotics since may 2011. he is well and he is symptom free. nothing is impossible with God...not even the incurable. prayer works. our son was healed through the power of it. Praise the Lord!

God is enough
(and mom thinks that's enough tattoos!)

Here is Taylor's P.U.S.H story in his words:

"Two years of my life was essentially wasted by Lyme. At least that was what my young naive self thought for the majority of the disease. At sixteen, I had a vision of what I wanted in my life. By 17, I was already a reservist with the Canadian Armed Forces. If I had it my way and my life had gone how I had planned, I would already be on, or would have already finished one tour of duty as a Canadian infantry soldier. But reflecting on what has occurred over the past 2 years and how I've grown, I know why it has happened. Most evidently, I never would have learned about Special Forces in the United Kingdom where I now have my heart set on going and am in the middle of the recruitment process.

As it has been left unknown under my request, I am no longer sick with Lyme and have been sickness free and symptom free for SIX months now. The reason I requested that nothing be said is because i wanted to be sure that lyme was really behind me and it is how I believe that I was healed that makes it special.

It all happened with one final night of hopelessness where I spent the night upset and broken. I had no hope left for my life. I thought I was destined to be sick. I thought all my hopes and dreams didn't mean anything to God and in a final cry for help I prayed. It was a prayer that I've never prayed and I just thanked God for life and for what he blessed me with in my life. My family, my friends, my passions. And I laid it all on the table. As my prayer went on longer, I voiced my frustrations, my worries, my anger, and let God know that I had had enough. After praying for about 1.5 hours, I started to feel like I was spinning. I knew I wasn't because I was sitting in my car and I could feel my friend Mara beside me. But as soon as I finished my prayer and Mara finished hers I opened my eyes and no longer felt that way. Over the next several weeks, I felt the meds having no effect on me and as time went on, I felt no symptoms and ever since then I have been fine. Call it what you want but I give God all glory and praise for my health.

As you all know I'm a big fan of tattoos. I have a lot (total of 5 currently) and a lot more plans to get more (don't tell my mom!). Shortly after I experienced God's healing, I got a tattoo on my forearm.

Lyme behind & New Beginnings

The paper airplane represents a fresh start. I now have a new lease on life with perfect health and my career starting with the Royal Marine Commandos in the UK. The green jet stream represents that lyme is behind me. The sun represents God and that He is always watching over me, surrounding me and guiding me even in the midst of darkness. The black clouds around the perimeter show that nothing can hold me back and that with perseverance and faith, I can get through anything.

Thank you to all of you for all the prayer and support. It has meant the world to me. For those of you who can't see an end in this, keep fighting and persevering. Don't lose hope and don't give up!"

-Pte. Taylor Goertzen

CHILL OUT, GREASE BALL

2011-11-28T02:00:00.000-08:00

in early spring of last year (2011), i was a mishmash mess of neurotoxicity and active infection deep within my brain. it was a real humdinger of a nightmare to live with and presented quite the challenge for my doctors to treat. the most complicated part of it being determining how to go about balancing detoxing me while continuing to fight the infection. this was further complicated by the fact that this all came to a head between scheduled trips to see DR H. (doesn't it always!). DR H wanted me seen in office - obviously an unscheduled, last minute trip to SF wasn't possible, so DR D fit me in. she is only a 2 hour drive away - easier trip to manage - especially when one is a basket case of neuro toxicity - not to mention that we had to make multiple barfing pit stops. rather barf on a curb than in an airplane bag.

i saw DR D...and after examining and assessing me, she spoke directly with DR H. between the two of them, they came up with a plan. the first order of action was to try and detox me as efficiently and effectively as possible.

detox is not something my body has ever done well. never ever. it's been something that has been immensely frustrating to all of us (me, DR H & DR D). during my appointment with DR D, she came up with a combination of homeopathic meds etc. that she felt were best suited to my body and it's notoriously uncooperative detoxing nature.

of course, detox constitutes a round of multiple homeopathic meds and lots of tinctures and lots of needles and a degree in physics to incorporate it all into dosing schedule.

take this with that. mix this one with that. take that one on an empty stomach. 20 minutes after that drink this. take this one with food. take this one 2 hours away from food. stand on your head when you drink this. pat your head, rub your tummy while simultaneously swishing this one around in your mouth. alright, that part i'm kidding about. but you catch my drift. detox is a full time job that requires a certain ingenue to figure it all out. fortunately, DR D is really good about helping iron out the nitty gritty of dosing schedules.
scheduling mayhem aside, some of the oral detox meds they had me taking were probably among some of the foulest tastes known to mankind...but i could handle that - even without complaint and i was more than happy sticking myself with a needle thrice daily despite the resulting myriad of blue and green hues spreading across my belly. happy. more than happy to deal with that all. the part that i was not happy to bear, the part that was by far the toughest, roughest part of the detox protocol was the part that DR H prescribed:

5 straight days of massage
that was a real chore to endure
yes, that's right, i said ENDURE.

i know - i am probably the only person in the world that would describe a massage as something to endure.
but hey, it's the truth.
the very thought of it makes me cringe
call me weird. i get it. i know. i am weird.

DR H wanted me to do a very specific type of massage therapy - ayurvedic. i had heard the term "ayurvedic" before but i had no idea the history behind it. i thought it was some new chic term spas invented. not at all. aryuvedic medicine practices have been around for about 5,000 years. it's pretty fascinating. the more i read about the specific type of ayurvedic massage, DR H wanted me to do, the more amazed i was that my medical doctor knows about stuff like that. blows my mind the level of information that man has stored in his brain. he's priceless. it is so scary to get so super sick and not have your doctors close by - hek, they don't even live in the same country! - but even so, we are so fortunate to have the medical team we have.

the 2 types of massage DR H wanted me to do were:

abhyanga and shirodhara

they sounded completely foreign to me and i might add, a little spooky and little off the beaten path. he told me that shirodhara consists solely of a practitioner dripping warm oil over your forehead. he told me that he wanted me to have that done an hour at a time for 5 days straight. apparently it's supposed to help balance out the brain. i thought it sounded reminiscint of chinese water torture. abhyanga is similar to lymphatic drainage massage - except it's done with warm medicated oils.

first we had to find a place that practices aryuvedic medicine and one that also did both abhyanga and shirodara massage. it took several days to find a place. once we did, i was booked for back to back appointments for 5 days straight. i was so super freaked out about it - more nervous to go for this than i was going for my first colonic. no lie. i didn't know how my body would react (what if i barfed right there on the massage table?) and i didn't know what exactly to expect.

the massage started with the abyhanga massage. first, the practitioner would pour oil on the back of my head and than VIGOROUSLY massage. this part felt more like a flogging if you ask me. there i lay, face down on the table, oil being vigorously rubbed into my head. so vigourous my head would bounce up and down on the table and i was worried i wouldn't have any hair left by the end. the rest of the nightmare consisted of warm oil being massaged into my body. long, fluid strokes followed by more pelting and pummeling. i guess it would be best described as kind of like a combination of swedish and lymphatic massage. i'll admit that the foot and hand massage part of it was nice but that constituted about 5% of my time on the table. the rest of the time i just endured. i would get super nauseated about 30 minutes in. and 60 minutes in, i always had to go to the bathroom. what a nightmare.

"excuse me sir, can i get up to go pee?" i would timidly ask
(oh yes, did i mention my practitioner was MALE?)
back to having to pee halfway thru the treatments. keep in mind, by that time, i was one ginormous grease ball. i'd have to get up off the table, body basted like a turkey, hair slick with oil and bedraggled and have to slip and slide my way to the bathroom. what a sight for sore eyes.

then it came time for shirodhara. warm oil dripping over your forehead. i read about it and it is described as a pure bliss experience. not in my world. more like chinese water torture, if you ask me. at any rate, i was pretty nervous. i was arranged on the table and this pot was hung above me and then the next thing i knew i was being blind folded. i nearly had a coronary. then i had to lie there while a steady stream of oil relentlessly dripped across my forehead for one long hour.

the shirodhara torture chamber

it wasn't horrible but it wasn't this luxuriously fabulously relaxing blissful experience that it's cracked up to be. of course, maybe it's just me. sickness and detoxing aside, i've just never been a "spa" sort of person. this wasn't exactly a spa thing but the general concept of it was the same - doing relatively nothing for an extended period of time. i don't do that well. and i don't find it enjoyable. i can't relax because i can't turn off my brain. i just lie there thinking of all the things i should or could be doing. mental to do lists just pile up in my brain no matter how hard i try to just chill out. once the massage began and the practioner started massaging my arms and legs, all i could think of was that this was costing me an arm and a leg. then when the practitioner started massaging my feet and toes, i lay there worrying about whether or not i had toe jam. then of course was the bladder issues. how relaxed can one get when they have to pee every 30 minutes during a 2 hour treatment. no matter how hard i tried to get into a zen state of mind, i just couldn't. this grease ball could not chill out. period.

chill out, grease ball!

anyhow, on the third day of this 5 day ordeal, the theme song from titanic softly wafted in over the speakers and all i could hear in my head was my own ad-lib version of this epic song,
"how long will this go on? i'm here, there's everything to fear. i gotta go pee. i am stuck on this table, this just goes on and on and on. i am nauseous now. i fear i might barf. there is no end to this. it just goes on and on and on..."

anyhow, i survived the entire 5 day ordeal.
on the last day, all i could think was thank goodness it's over.
i've never been more relieved in my whole life.

MY FAVORITE THINGS

2011-11-27T10:08:00.000-08:00

i must preface this post with a warning. i'm not a doctor. (there's a shocker) so please don't try any of the products or implement any of the therapies mentioned here before checking with your doctor first.

i have often found it super helpful to connect with other lymies on different sites and glean information from them on what has helped - or not helped - them in their battle with LD. i've learned a lot from others. shared information can be of huge value. i've also learned that everyone responds very differently to different treatments. what works for one, doesn't necessarily work for another. we are all unique. so true. on the other hand, at other times, what has worked for some one else has tremendously helped me or parker or taylor.

so i thought it would be fun to list of a few of my favorite things. and then i looked thru the list i started and some of it sounds near torturous and down right diabolical...and i've titled this post favorite things? yikes. i'm sure my favorite things list is very different than oprah's favorite things! (so the show is no longer on...but it was when i first started this post.)

can you imagine oprah debuting some of my favorites on her favorite things show?

now folks, my all time favorite thing is ....

(sense the crowd's building enthuisiasm, breath held, cheeks flush with anticipation, heart's pounding)

wait for it..wait for it...wait for it

COLONICS!

and your all going home with 10 free sessions!

crowd goes wild....you know the jumpers, the head holders, the screamers, the fainters?

i can just invision it. the blood curdling screaming, the frenzied panic, followed by a stampeding charge out the nearest fire exit. talk about a clearing a studio -

yes, it is true. the first thing i thought of when i started listing my faves was colonics. i realize that is bizarre. so let me state for the record that i don't particularly find colonics "fun" they don't top my list of "favorite past times"... but they top the list because they really did wonders for my body.

1. COLONICS - yup. LOVE 'EM. run shrieking. it took a full year of dr h telling me i needed to do this before i finally took the plunge. read about it in- fluffy-fluffy and the unmentionable - it was not as bad as i expected, anticipated or every imagined it to be. albeit, my family has been traumatized by them. after every appointment, they were regaled with stories of what had been encountered that time. it grossed them out. i'm sure several have gagged as they read this. me? no way. i'm mesmerized by this one. hands down, bottoms up - it is one of the best things i have ever done for my body.

2. MASSAGE - i hate massages. yes. you read that right. i would choose a colonic over a massage any day of the year. yes. you read that right again. i endure massages for the greater good of my body. that's right. massage and endure in one sentence. only in my weird world. dr h made me do these too. i've endured both lymphatic drainage and aruyvedic massage. i have to admit it both have been super beneficial.

2a. LYMPHATIC MASSAGE - i've blogged about these before...in the 3rd person as a character called fluffy-fluffy - meet fluffy-fluffy. read about more of fluffy-fluffy's adventures she loses it here and drives dr h crazy here.

2b. AYURVEDIC MASSAGE - specifically abhyanga and shirodhara. underwent these about a year ago. i've not before blogged about my experience - didn't have the to courage to relive it and neither did fluffy-fluffy but i'm stepping up to the task for the greater good of the masses. i'm working on a more detailed account of it in a post that'll be titled 'chill out, grease ball'. stay tuned.

for now, i'll say that abhyangha and shiradawa massage are not your run-of- the-mill standard massage. while it is true that i didn't enjoy them, they did do wonders for detoxing me at a time when i was impossibly and scarily chock full of neurotoxins.

abhyanga is a full body, hot oil massage. sounds heavenly... feels like hell. why? it includes what felt like the equivalent of a full body flogging.

shirodhara is hot oil poured over your fore head in a continuous stream. often lasting 45 -60 minutes. it is supposed to be very soothing and helps to balance the nervous system. all i thought during it was chinese water torture.

during my first collective ayurvedic massage experience, the theme song from titanic came on. you know the one - my heart will go on by celine dion. catchy tune, right? everyone knows it. sing along...i did. i silently sang my own ad-libbed lyrics "how long must this go on? how long must i endure? i'm here, there's everything to fear! i have to pee, i am nauseous. how long will this go on? it just goes on and on and on and on..."

3. MUNDIPUR - actually any of the products from bioresource/pekana get an a+ in my books. their entire detoxing line - itires, renelix, and apo-hepat have been of great benefit for both parker and i. they are all homeopathic liquids. add them to a couple ounces of water. then down the hatch. i prefer mine in a martini glass.

4.APPLE PECTIN TABLETS - i've had a major issue with detox. most of the standard detoxing binders have done squat for me. these little gems have helped mop up that toxic feeling. interesting side note: apparently dr oz featured these little gems on his show. i believe they can be used to aid in weight loss. i'm not entirely sure. i don't watch the show. it annoys me. now i'm doubly irritated b/c once he mentioned them on his show, they flew off the shelves of every health store and suppliers were back ordered. i had a dickens of a time getting my hands on a bottle after that. thanks a lot oz.

5. LYMPHOMYOSOT INJECTIONS - (heel product)

again thumbs up for being decidedly overjoyed by a treatment that requires i inject myself into my gut 3xday. lovely. my frustratingly sluggish lymph was decidely supported by this one. feel free to read about fluffy-fluffy shooting up

6. GARDEN OF LIFE GREENS - it's so energizing, it's like crack in a glass. it tastes how lawn clippings smell. yum. i eventually got used to the taste. after a while i even enjoyed it. probably because it appealed to the cow in me. i must have been magnificently deficient when i first started this one, it is one of the only supplements i have ever taken where i actually FELT an immediate response in my body. i could feel it doing the happy dance. again, it was most likely my inner cow coming out.

unfortunately, i am no longer able to tolerate the greens. now that i'm allergic to veggies, this one is a no go. sad. this cow is not happy about that.

7. ALKA SELTZER GOLD...plop, plop, fizz, fizz, oh what a relief it is! this is my latest and greatest favorite thing. i'm addicted. dr d started parker on this ages ago. he's not such a huge fan but it is a great alkalizer and an alkaline body is a good thing. parker gags it down when he is herxing. he can't stand the taste but knows that it helps his body. me? i can't get enough of the stuff. super, duper delicious! i enjoy it on the rocks.

LD has grossly limited my drink repertoire and now thx to my fruit and veggie allergies, gone is lattes, gone is smoothies, gone is juicing, gone is green tea, gone is any herbal tea, gone is green goo, gone is wine, all gone, gone, gone...but i have alka seltzer. plop, plop, fizz, fizz...it's my specialty drink.
important note: use only alka seltzer GOLD. this one contains no aspirin.

8. ROCEPHIN - this is one of the big gun IV abx used to fight LD. it's the preferred drug of choice among llmds. it has done wonders for my body and my brain. prior to rocephin, i was lost in a haze of pain and brain fog. i couldn't recall my kid's names, i had no idea how to sign my name and if i ventured out of the house, i often couldn't find my way home. when i think back to those early days of treatment, it is nearly impossible. i've come along way, rocephin has been my faithful companion along the way.

9. OREGANO OIL - interestingly tangy, zinger of an herbal remedy. can you tell i'm flavor starved? i take it straight - shaken but not stirred and definitely not watered down. 5 drops at a times directly under the tongue. oh yeah, feel the burn baby! this beaut of a remedy is a powerful viral, fungal and bacterial fighter. i had great success with it when i developed a difficult to treat case of thrush. oddly enough, i really enjoy the after taste of this one. who knew little oregano burps would be so pleasantly enjoyable?

10. SALLY HANSEN NAIL POLISH STRIPS - ok, so totally unrelated to treatment altho' pampering oneself is a good thing. i have to plug these sweet little nail coverings. they are so cool and super durable. they are fairly simple to use as they are basically glorified yet super adhesive stickers. the bonus is there is NO drying time! the effect is phenomenal. avery and i had a lot of fun with these this summer.

AVERY IN OUTER SPACE

2011-11-21T01:00:00.000-08:00

we secured one of our first ever antibiotic (abx) prescription from BCCH yesterday
it only took 7 hours
and
it was for the one kid that we DON'T want on abx!
avery

thursday nite she said that her ear lobe was a bit sore
friday nite i noticed that it was swollen
i cleaned it and puss came out
gross

sat morning it was worse
the front of the stud was less visible
graham took her to a walk in clinic by our house
doc there prescribed abx cream
sunday morning the front of the earring had been completely engulfed
graham took her back to the clinic
they sent us down to BCCH ER

yippee
it was an absolute gong show in the ER
there was a line up 8 people deep just to sign in to triage
what else would one expect on a sunday afternoon in the middle of flu season?
we hunkered down
knowing we were there for the long haul
way down at the bottom of the priority list
an infected earring is not particularly a pressingly urgent issue

albeit we figured if the wait was long enough, her ear could fall off
or
she'd spontaneously recover
we hoped for spontaneous recovery
and
that did seem somewhat plausible
after all the earring had retreated so far into her ear that the backing was actually dangling down behind her ear

1 hour into our wait we were going a bit nuts
and
we were getting desperate to get out of that germ infested, over crowded waiting room
we started to devise plans to get ourselves out of there
possibly delirium was setting in at that point because we thought that it might be possible to get the earring to just fall out
who knows? a bit of jarring might be all it took!
it was worth a shot
so yes, we made her jump up and down
and
up and down
and
up and down
and
up and down

nothing doing
our next strategy was to have her run around outside the ER
try and jostle that dumb earring free
no can do

now we were 2 hours into our waiting room marathon
we contemplated a new strategy
that one included a trip to home depot
pliers and a drill
avery wasn't down with that idea

finally, we got called in
doc came in
took one look at it
and
told us that they would need to cut it out

um, can you say ouch?!
her ear was already bleeding and raw and swollen
and
i'm sure it was hurting something fierce
gosh, it was painful just to look at
poor thing
she was super upset and scared and hearing the doc say they'd need to cut it out pretty much sent her over the edge
given her anxious state and the fact that they intended to cut the earring out, the decision was made to sedate her

about that time, friendly, familiar faces appeared in our room
our friends jon and patti
admittedly, my first thought, upon seeing them, wasn't a good one.
my stomach lurched
and
i thought, 'oh no. something is wrong with geli.'
their daughter, angelica, is magnificently battling and winning a fight against leukemia (click on this to read about their journey)

turns out, everything was ok
phew!
they were there to drop their daughter off for a social event and had just happened to see my FB post about us being there too
and
amazingly thought to do something for us
they showed up with coffee, hot chocolate and donuts. mmmm, donuts!
not sure how they found us - i suspect the blood curdling, ear piercing screaming probably alerted them to our whereabouts

their timing could not have been more perfect
they arrived just prior to avery being sedated
and
i was in desperate need of a distraction
avery was in tears and i was on the verge
had they not shown up, i might have mugged the nurse for avery's sedative
but rather
i got in a nice little chat with some awesome people and once they left, i retreated to a corner with the box of donuts

while i sedated myself with the sugary, deep fried goodness of donut holes
avery's medically induced sedation kicked in
and
it became very clear that it had launched her into outer space

a new doctor came in to check on her
when she entered the room, she seemed to kinda stop short and give us a long, hard look
it wasn't a bad look,
just a 'i think i recognize you but i'm not sure' look
i thought she looked familiar as well
'oh no' i thought

naturally, i assumed it was probably one of the docs we've come into contact with over the many ER visits and hospitalizations we've had with parker
'oh no' i thought.

this new doc examined avery's ear
she thought she might be able to get the earring out without cutting into the ear. she said it was worth a try.
it worked! she was able to get it out. no cutting involved.
that was so awesome.
she also said the ear was so badly infected that the local anesthetic they were going to initially use would not have taken. that made us super glad and relieved that we had gone the sedation route.
we were then told that we would not be able to leave until the sedation had worn off and avery was able to walk on her own.

nice.
avery was somewhere over the rainbow
she was high as a kite and it was clear it would be sometime before she floated back down to planet earth
we settled in for the long haul. again.

we waited
and
waited
and
waited
fortunately, we had great entertainment
we popped the movie, monsters inc. into the dvd player
but
avery stole the show
she was the chattiest space cadet ever.
and was more than happy to keep up a running commentary on her space odyssey. as she orbited through outer space she became convinced that she had 2 thumbs on 1 hand.

"how come i have 2 thumbs? why can't you see my other thumb? it's right there!"

the most popular sighting was the alien with 4 eyes, 3 noses, and 2 mouths. that was me. she wasn't scared by it. she was just so super funny.
"mom has 4 eyes!"

"mother, you have 4 eyes. how'd you get 4 eyes? why do you have 4 eyes?"

parker had a million nostrils and floating eye balls

graham appeared normal. fancy that.

the doc came in to check on her about an hour after the procedure
doc said, " how ya doing?"
avery took one look at her and said, "wow, you like have 4 eyes. are you ok?"

obviously, not quite ready to leave yet.

once she was somewhere near our galaxy, the doc came in to release her.
she had a rx for antibiotics in hand
we hadn't even asked for them
funny, how simple it can be.
however, avery is the one kid that we didn't want on abx

while the doc was explaining after care to us, she gave us 'the look' again
then she said we looked familiar.
'oh no.' i thought again. 'i knew it! i knew i hadn't imagined the look!'

naturally, we are paranoid. we have been thru the ringer there. we have had to stand our ground and advocate for parker, time and time again. we suspect that our presence there sets off warning bells. sometimes we wonder if big brother is watching and telegraphing big red flags to mystery men in hidden booths somewhere in the bowels of the hospital, 'crazy lyme people approaching. crazy lyme people approaching'
we can just imagine!
ok. so little paranoid? yup.
we are sure there is an internal write up about us somewhere.

before i had too much time to get myself overly paranoid, the doc went on to say that avery's name really rang a bell for her
avery! not parker! phew!
that narrowed things down as avery has only been to BCCH one other time.
that was 5 years ago when she broke her leg
and then it dawned on us all at the same time

this was the very same doctor avery saw way back then! how ironic!
obviously thousands of kids pass through BCCH with broken bones but she remembered avery so clearly because avery had been in a study where they were splinting kids rather than casting them.
she remembered avery because avery's case had been a pivotal part of their study
and
she had written avery up.
(see? not so paranoid, am i? they do write people up)

EMBRACING THE MOMENTS

2011-11-14T17:18:00.000-08:00

it was quite the weekend.

i think we racked up more activity in 3 days then we have in 3 months.

we went to a movie
and
went to church
and
went ice skating...

eyes alight, bodies moving, smiles glowing
tentative first steps, arms flailing, knees shaking, balance found, then off with great gusto
the crispness of the frosty air,
feel its invisible flow across my cheeks and through my hair
jittery nerves, must breathe deeply
inhale that stale icy arena scent
warmth from movement gently easing away sedentary chill

parker zipping by,
avery delicately gliding past
both beaming with the exhilaration of the moment
"look at me, mom! look at me!"

graham, mr photographer extraordinaire, racing ahead to capture the moments
or
romantically sidling up beside me
hand in hand, round the rink we go
we're doing it. together.

i nearly lost it as i ~~glided~~ slipped and slid my way across the ice
being there
in the moment
fully embracing it
proved to be a much bigger challenge for me than staying upright on the ice

there is part of me that is always waiting for the other shoe to drop
it's a learned behavior now
after all, the better days, the able days, the days where the light at the end of the tunnel seems close at hand, those days have never lasted.
the inevitable crash would come,
often in the blink of an eye.
sweet victory hacked off at the knees
hopes raised, hopes dashed
hope falls prey to ruthless loss
unmercifully ushered in on a torrent of gut wrenching grief
bid farewell to doing, to being, to living again and again and again.

these repetitive losses have tainted my ability to be fully engaged
they gnaw on my shoulder, grasp my belly and tiptoe through my heart
i so fear the agony that comes when that tentative sense of well being is ripped from my grasp that i am scared to fully embrace the joy of the able bodied moments
to hug it tight, to whoop it up, to shout it from the mountain top
to sink into the joy and lose myself in the exhilaration of it

the protector in me, the survivor whispers cautiously;
spare yourself some grief
celebrate from a distant place
hold utter exuberance at bay
guard your heart
for tomorrow
this could all fall apart

this weekend, in that rink, it dawned on me

the grief is fully felt; even if the joy was not

this weekend, parker's wheelchair sat empty
tomorrow it may not.
i will not allow the fear of tomorrow to over shadow my joy in today.

i will fully embrace the joy of this moment without fearing the pain that the loss of it will create.

i will celebrate this moment with every fiber of my being
i will allow myself to embrace it with whole hearted gusto
i will cry, i will laugh, i will move, i will breath
and
i will not worry about what tomorrow will bring
come what may. come what might.

after all, i've survived every loss and fought my way back to victory every time. if i have to, i'll do it again. and again. and again.

"you gain strength, courage and confidence

by every experience in which you really stop to look fear in the face.

you are able to say to yourself,

"i have lived through this horror. i can take the next thing that comes along."

you must do the thing you think you cannot do.

-eleanor roosevelt

REMEMBRANCE SHOULD BE A PART OF EVERY DAY

2011-11-11T11:48:00.001-08:00

today is remembrance day.
in my opinion, remembrance should be a part of our every day.
yet it rarely is.
often, it is just another observed holiday that rolls around once a year. there is often more enthusiasm over the fact that this 'stat holiday' earns us a day off rather than there being a sense of solemnity and deep sense of gratitude attached it. this day is representative of sacrifice, bloodshed and great loss. if one really reflects quietly on it, remembrance (day) is a staggering, gut wrenching thought.

i'd challenge every one to make remembrance a part of every day.

our family has a very personal connection to the military since our son swore in as a private in january 2009. having a son who is a soldier brings war close to home. it impacts all of us deeply. remembrance day is no longer just a one day, once a year holiday that is observed in our home. it is a part of our every day. it's interwoven into daily living - reminders of his choice to pursue a military career are scattered throughout our home. i think the mess in his room would give his second lieutenant a coronary - yet, it is not the mess, but the military gear and uniform scattered within it that gives me one.

fatigues mixed in with mess of every day life

once a week, he suits up in full fatigues and leaves the house to head to training. i'm blessed that he is still here in canada. i expect that one day that will change.

during supper this week, our family was discussing the upcoming remembrance day ceremonies. our conversation became the jumping off point from which this post was formed. taylor mentioned how fed up he was with hearing about kim kardashian and the media firestorm her 72 day marriage created. he went on to express his disgust with the fact that her divorce was breaking news and drew worldwide attention for days and days on end.

coverage of the loss of our military is often a 15 second blurp at the beginning of a news broadcast. sometimes, a soldier's repatriation ceremony and funeral garner coverage...yet that coverage pales in comparison with the furor that celebrity incites. is that because it fails to illicit the widespread, grand scale public interest that celebrity does? what a sad commentary on life - that celebrity "news" trumps and/or overshadows the things that hold meaning and value. loss is lost in that shadow.

at the end of october, kim kardashian,30, ended her marriage.
at the end of october, master corporal byron greff, 26, was killed in a suicide bombing in afghanistan. he left behind a wife and 2 young children.

what "stat" is newsworthy?
i hope that makes people pause and reflect.

in the line of duty: canada's casualities
remembrance should be a part of our every day.

this week, michael jackson's physician was found guilty of involuntary manslaughter. the death of michael jackson and the subsequent court case has captured the nation and the media's attention. it is a terrible thing that michael jackson died the way he did. i'm not here to dispute that. nor minimize his creative genius or suggest that his contributions to the music world were not sizable or impressive. his death is sad and his children have been orphaned.

but there are many military men and women who have and who will lose their lives protecting our rights and freedoms. and their children will be orphaned as a result. how much coverage and attention is given to their tragic losses?

should those losses be remembered only one day a year?
remembrance should be a part of our every day.

becoming a soldier is a calling. it is not a casual afterthought. we have a son who has chosen to make this his life's career. it is what he wants to do with his life...even if it costs him his life. i can't fathom that. that is with me every day. it is with our family every day. his decision impacts our family deeply. we support him, we are fiercely proud but we worry where this calling will take him - and if it will take him from us.

"A soldier must suffer and bear the deepest wounds and scars of war. War leaves no soldier unwounded."

soldiers go to war and if they come home, they come home changed. you can make a difference in a wounded soldiers life today and every day. visit wounded warriors to find out how.
remembrance should be a part of our every day.

"Courage is almost a contradiction in terms. It means a strong desire to live taking the form of readiness to die."

our military live that as an oath...on our behalf.
we salute and honor your courage. we thank you for your service and sacrifice. yesterday. today. and tomorrow.

in our home, remembrance is a part of our every day.

SOUL FOOD

2011-11-06T12:39:00.000-08:00

did you know that in-n-out burger prints bible verses on the bottom of their cups?
we did not...
we may be the only folks on planet earth that did not know that.

the first time i noticed that they had the scripture references on their cups was last may when we were in SF. don't even ask me why i happened to check out the bottom of my cup. as i've already established - we actually had no idea that they did that.

may was the first time i discovered the verse thing. it was john 3:16...your pretty standard verse used for proselytizing the general population. based on that, it was only natural then for me to assume that that was the verse that is always used.

fast forward to august. back in SF to see DR H. but first things first, a stop at in-n-out was in order. even tho' i assumed that the john 3:16 verse was status quo, i decided to check the bottom of the cup anyway.

i tilted it sideways.
then gasped in astonishment and immediately burst into tears when i saw it:

"my" verse

i still am having trouble articulating what this meant to me and why the timing of it was so significant...it's part of the reason why it taken me so long to finish writing about this experience
but here goes:

my milkshake brings me to tears

this journey is hard. very very very hard
this journey is long. very very very long.
it feels unending
it feels like we are in a state of perpetual grief.

when i first got sick, i didn't know why...but i just simply trusted. i determined that i would see God DURING it rather than look back and having my aha moment after the fact. i knew that it was not from the hand of God but i trusted that his hand was over it.

and
then
the boys got sick.
and
i asked why?
why?
why?
bewilderment. horror. perplexed. anger. grief. unbelief. captured and filled every fiber of my being and my trust...it was stretched to it's breaking point. i felt like the hand of God had been lifted from us and the shelter of his wing was was no longer covering us.

i felt exposed. stripped bare. desolate. alone. barren. devoid. angry.

i want to know why.
from the minute they were conceived, i've prayed for God to protect them
why has He not done that?
yet we trudged on with our unanswered question, clinging to the truth of who God is...

I don't have every answer in life

But I'm trusting You one day at a time

'Cause You can make a weak heart stay alive forever

this is where Heaven and Earth collide

I lift my hands and give my life

This is how my weary heart stays alive

And I'm still a dreamer, a believer

Oh, I've lost my faith in so many things, but I still believe in You

'Cause You are the answer, the redeemer

Oh, I've given up on too many things, but I'm not giving up on You

'Cause You can make anything new

~(sanctus real-redeemer)

and then
in march 2011, avery tested positive.

our daughter, our one child we thought had been spared, has not.

our world shattered once again.
broken. fragmented. unbearable. stripped to the absolute core.
caught in the grip of this shadow of perpetual grief

she has been on treatment since may. (more about that another day). yes, she has congenital lyme however she currently has a low level of infection. for the most part, she remains asymptomatic. this is good. she is not on any antibiotics but she is on a herbal treatment protocol that both addresses the infection and strengthens her immune system. she does have very mild herxes on this treatment so we know that it is addressing the infection while maintaining her ability to live a healthy, normal life.

it had been a specific fervent prayer that this treatment will arrest this disease and that God would spare her the horror of an active progression of it.
and
that is still our prayer.

avery impersonating dr h

there is no easy way to live with this news. it has raised more grief than can ever be shared or expelled from tears. it's taken a long time and we are still processing it. it has been equally difficult to share or speak about. we confided the news to only a few people. we know that it has been wondered about. we know that there was and has been quiet speculation as to why she was accompanying us to SF. that is why. she was there as a patient.

it took many, many months before we were even able to tell the boys
and
we have NOT told our daughter that she tested positive...yet

one day we will, but not yet.
obviously, she is not completely in the dark. after all, she sees our doctors and has to take meds. we have explained to her that she is always at a risk for developing active lyme and that because of this we are taking the necessary measures to keep her healthy. that is all she needs to know at this point. that is what we are doing. she is healthy and we are doing what we can to keep her that way. my parenting philosophy has always been to be as open, honest and up-front with my kids as possible. this establishes trust. navigating thru this is a complex, delicate and fragile issue. there will never ever be a 'good' time to give her a full disclosure but we believe there will be a 'right' time. we are at peace with this...it has taken much discussion with our doctors, therapists and prayer to arrive at that decision. we believe that, for this moment in time, it is the right choice for her and for us. (if you know her in our 'real life' please be aware of this. we expect that you, our friends, will respect that decision and be diligent in discretion.)

is it any irony that ~~so much~~ everything about this journey revolves around the issue of trust?

trust has been intricately woven into every thread that makes up the yet to be finished tapestry of this journey
my key scripture verse is about trust.
my blog title includes the word trust.
my first blog entry was about trust.
hek, i even have the word permanently etched into my skin

Trust in the Lord with all your heart.

Never rely on what you think you know.

Remember the Lord in everything you do, and he will show you the right way. Never let yourself think that you are wiser than you are;

simply obey the Lord and refuse to do wrong.

If you do, it will be like good medicine, healing your wounds and easing your pains.

proverbs 3:5 was gift from God when this journey started.
in it was a request and a promise
and
it still stands today.
why?
because He remains the same.
yesterday. today. forever.

God keeps his promises.
and
sometimes he speaks to us from the most unlikely places.
like in an in-n-out burger joint, on the bottom of a cup,
and
in the middle of all the junk in our lives, he gives us food for our soul and i'm and
to be honest,
i'm still digesting it all.

TURKEY WITH A SIDE OF SCURVY

2011-11-04T13:16:00.000-07:00

today is significant. on this very day, exactly a year ago, i threw up. and thus began my season of barfing - in fact, i have barfed nearly every day since then...305 days to be exact. yes, i kept track of it.

it began nov 4, 2010
and
it ended sept 5, 2011

i have been barf free for 60 days now. i hope it's safe to say, my season of barfing is behind me.

what was the cause of my barf-tastic year anyway? ummm, a little tricky to totally assess because how the barfing manifested in the beginning and then what it morphed into is an entirely different cause. albeit, they are not separate issues.

when the barfing first manifested, it was not associated with any nausea or gastro issues at all. i only barfed in the evening. hello weird. it began within days of my first several limbic seizures - and those were definitely related to my bartonella infection.

so we hit the bart infection hard, with specific IV and oral abx for it. the treatment for bart helped and my woo-hoo psych symptoms and limbic seizures responded. the barfing, however, did not resolve but it became more subdued.

then in late spring, the barfing began to ramp up again. an onslaught of new symptoms hit. i began to have significant head and eye pressure, headaches, and most notably, there was now nausea associated with the barfing. then i began to have problems with my balance and my fatigue and stamina took a nose dive.

as august progressed, those symptoms worsened dramatically. and so did my barfing. by the end of august, i was vomiting morning, noon and night. and every intermediate time in between.

at the end of august, DR H diagnosed the IIH and started me on treatment for it. my symptoms of head pressure, headaches, and nausea rapidly responded. we saw almost immediate improvement within 3 days..but it still took all of september to regain my balance, my strength, and my appetite.

today, i continue on the treatment for the IIH. it is needed. it's taken awhile to balance out the dosing etc... if we're not careful or i'm not on top of precise dosing than my nausea and balance issues flare. once my dosing was better managed, my hyperacusis improved as well. whether that is anecdotal or not i don't know but for right now it is working and for that i am grateful.

so what's with the title of this post then?
what in the world does turkey and scurvy have to do with the resolved barfing issue?

because, my nausea and barfing have finally stopped (oh happy day) but i still can't eat. and that SUCKS! (cry me a river)

at the beginning of september, while we were getting the IIH all under control, i became highly reactive to fruits and vegetables. yeah. nice. i have never, ever had issues with food allergies. yes, i ~~adhere~~ try to adhere to a "lyme diet" but that is because a "lyme diet" gives my body a better fighting chance against beating the disease...not because i have food allergy issues. so this sudden occurrence of food reactivity was weird, inconvenient, beyond frustrating, and it was irritating... but given the fact that i'd had an excess of fluid putting pressure on my cranium for who knows how long, we weren't alarmed by it. in fact, it made perfect sense that all sorts of weird things could be triggered by the inflammation that the IIH caused. after all, excess fluid on the brain messes up the head.

we expected the reactivity to go away once the inflammation was relieved.

ummm, still waiting for that happen.

currently, i break out in hives, itch incessantly, swell up like the stay puft marshmallow man and get ahem, the runs, if i eat tomatoes, lettuce, brussel sprouts, red peppers, green peppers, onions, celery, cucumbers, bok choy, green beans,
AND
watermelon, cantelope, honeydew, apples, oranges, lemon, pineapple, strawberries, blueberries...

the list goes on and on

avoiding fruits and veggies can cause scurvy
yet
i now have to avoid them like the plague!
even TOUCHING some fruits and veggies has caused issues...

i touched an avocado with my finger tips. they immediately began to tingle.
i picked up a piece of bok choy and my hands turned red and puffed up.
i ate brussel sprouts and i swelled up 8 lbs in 3 hours.

so, what can i eat?
rice cakes
almond butter
and
turkey.
this week, graham ~~cooked me a turkey~~ stayed up until 2am cooking me a turkey. my husband is awesome.

aside from my grossly imbalanced diet (and my docs are working on this), i am doing okay. some days are still pretty grim but my health has improved greatly over the past 2 months. i'm not barfing. i'm able to drive again. i'm showering more than once a week. i'm not spending every day in pajamas. we're using real cutlery and plates again.

and i'm eating turkey. a lot of it. i just hope i can avoid a side of scurvy with it.

YOU'RE FIRED!

2011-11-02T20:53:00.000-07:00

today, parker had his follow-up appointment with the surgeon in regards to the gall bladder attack that landed him in the ER back in july. at that time, an ultrasound revealed that he had 3 massive gall stones. this earned him an immediate referral and appointment with a surgeon at BCCH.

a "3 month wait and see approach" was the outcome of his initial visit.

if, at any time during those 3 months, he continued to have gallbladder pain and/or attacks, he would be headed for the OR. if not, we would have a followup ultrasound and appointment scheduled at the end of the 3 months and re-evaluate then. this "wait and see" time frame allowed DR H to start parker on some specific medications in order to try and break down the stones. (parker had already been on one of these meds b/c gall bladder complications are common with LD. the dose on this med was increased and an additional one was introduced). this treatment was met with much skepticism by the surgeon. however, he agreed that we had nothing to lose by trying it. DR H wasn't even sure it would work - he told parker he would do whatever he could to try and keep him out of the OR but that he should be prepared for the fact that he would probably lose his gallbladder. we started him on the meds and prayed...

parker had a follow-up ultrasound done on oct 18...at that time the lab tech told me that everything looked "fine". we expected to get good news today but were still holding our breath until the final lab results and ultrasound report were in.

i am pleased to announce that we "FIRED" parker's surgeon today.

the final lab report and ultrasound results are conclusive. parker's gallstones are GONE. totally, completely, 100% gonzo! the surgeon was stunned. he said that he has seen this happen before but it is very, very rare.

THE REPORT

"complete interval resolution of previously noted cholelithiasis/gallstones"

parker was over the moon! for a kid who is used to (and fed up) with hearing "weird" and "rare" assigned to his symptoms as a negative connotation, he was thrilled to have "rare" be associated with a positive health anomaly. he was so happy, he was beaming. me too!

Praise God for the healing power of prayer, actigal and ox-bile!

SPOOKTACULAR!

2011-10-31T22:41:00.000-07:00

last week, when we were at the hospital to check on viral picc (parker's picc line) he had an x-ray of his chest to check on viral picc and where he was hanging out in parker's chest. turns out he's much higher up than he should be, however we already knew that. there was no clot. and the IV nurses deemed him acceptable. they also commented on what beautiful bone structure parker had. okay, he was like, you are wierd and i am totally embarassed. it was cool to see and they let us take a picture of it. considering the time of year, i thought it was pretty spooktacular.

speaking of that time of year, tonight is hallowe'en. i've been dealing with a rather low lying level of anxiety as the month of october marched on. last year our home was a house of horrors. i've been ~~reflecting~~ stuffing it down and trying to ignore the trauma of last october. yet, worry and fear that that could happen again have ebbed in now and again as the date approached.

i put on quite a spooktacular show the end of october last year - 911 had to be called, the police showed up, and an ambulance whisked me away. i begged everyone to just let me die. i was in a very dark place. at the hospital i underwent a lovely round of psychiatric evaluations. due to a bed shortage in the ER, i ended up in a bed in the casting room. a special type of box cutter used for cutting casts was within arms reach of my bed. but that's ok. the nurses made me promise that i wouldn't try to hurt myself with it.

obviously i kept my promise.
the casting knife remained untouched.
psych evaluation concluded that i wasn't crazy nor having a nervous breakdown...rather, my psychiatric symptoms were due to infection.
thank you bartonella for the traipse through hell.
DR H immediately started aggressive abx to target the bartonella
for the next 6 months, we battled bartonella with a battery of abx artillery, in fact, i was still on a med for bartonella up until august.

as the end of this month has neared, thoughts have been pressing in on me;
did we slay the bartonella beast?
is it truly dead and gone?
what if i go off my rocker again?

i'm pleased to report i haven't. in fact, i took the kids trick or treating. i dressed up as myself... and i did not terrify any small children nor display any signs of erratic behaviour. in fact, we had a wonderful evening. after a wee bit of trick or treating, we piled into our van and made our way to our friend's home. we socialized and had a ball until late into the evening.

last year i was suicidal, bawling and slightly crazy.
this year, i socialized, had a ball and was not the least bit crazy...

ok, well, not quite....the fact that my daughter refused to wear her costume, the very costume that took an epic THREE HOURS of shopping before she found the "perfect" one, did drive me a little crazy! i think it's safe to say that that is enough to make the most stable person a little nuts!

A MOST UNUSUAL OCCURRENCE

2011-10-30T12:15:00.000-07:00

on friday nite, i had the great pleasure of riding shotgun in a vehicle carrying a dignitary. graham and i had the honor of chauffeuring obama to a hallowe'en bowling party.

it was a most unusual occurrence

unusual in that it was such a normal thing to do...and that sense of normalcy is such a foreign concept in our home.

parker got sick in september 2009. he was just starting grade 5. he was 9.

aug 2009

he is now in grade 7 and will be 12 in a month.

aug 2011

a whole lot of huge changes take place between the ages of 9 to 12. in many ways, he was a little boy when he got sick... and now he's on the precipice of adolescence. the majority of this metamorphosis from boy to nearly teen has occurred shut away from everything that encompasses those years...

school. sports teams. sleep overs. socializing. first crushes. running. jumping. carefree adventures. uninhibited movement. boundless energy. naivety.

our dog, harrison, has a FB page.

he is a very socially and intellectually advanced dog. he also happens to be friends on FB with a lot of parker's friends. i am not FB friends with parker's friends. a couple of months ago, harrison was updating his FB status. i was nearby, because i was monitoring harrison's underage use of the internet, so i couldn't help but notice all the proverbial tweeny "tweeny-ness" happening on his FB newsfeed.

there on FB was all the regular, normal silliness that accompanies that pre-adolescent stage of life. lots of talk about who likes who, student council, teachers (only nice things), crushes, farting, belching, birthday parties, events, and more about crushes and lots of emoticons with rolling eyes...etc. etc. etc.

it kinda crushed me. all that normal growing up stuff is so far from the reality of parker's world. was part of me secretly relieved he's somewhat removed from some of that social jockeying for position, the awkwardness of this age, the growing pains, the pressure to conform, and the heartbreak of unrequited crushes? yes! the other part of me was really grieved. he's missing out on some really critical years of social development. on the flip side, he is well beyond his years. he is learning life lessons that will build into him the traits with which a strong foundation of character are forged. he is developing strength, fortitude, endurance, perseverance, compassion, empathy, mental toughness...but these lessons come at great cost and he is also missing out on some pretty basic childhood experiences... and that is hard. and that hurts. and that is sad. does identifying and acknowledging both sides of the coin, both the pros and cons help? yes...it allows me to process the grief but it doesn't make the grief any less intense.

note to self: allowing your dog access to the internet can be hazardous to your mental health. time to get the dog a new hobby.

swimming, anyone?

this past week, there has been a significant decrease in parker's symptoms. he still has periods throughout the day, when his pain and cognitive dysfunction are very disabling but his evenings have been better. he has a list of many "want to do's". one of the activities on that list of "want to do's" has been to go to our church youth group. he was 'eligible' to start attending last fall.

it was with utter delight that he was finally able to go on friday nite. it is really one of his very first tween experiences
and
it was a most unusual occurrence for us to have him be a part of something that is so normal. it felt totally surreal. all of it.

dropping him off. surreal.
letting him go. surreal.
having 2 hours to ourselves! surreal. (at 19, taylor has his 'own' life and my folks had avery)
having a DATE nite! magical. (we celebrated my bday, graham's bday and our anniversary)
me being well enough to go out? will wonders ever cease?
and then
picking parker up. once again, totally surreal.

upon our return to the bowling venue, we entered into that loud, silly, mysterious world of tweens. the bowling alley was brimming with probably 75+ grade 6 & 7 ~~kids~~ tweens. it was loud. it was stuffy. it was hot. it was loud. really loud.

it was like stepping into a foreign land...and in the midst of it, there stood obama. it was a most unusual occurrence.

surreal. wonderful. delightful. joyful.

ps i would have loved to have a photo of obama AT said event - however he sternly advised us that the mama & papa-razzi were not welcome to photograph him at said event.

STEPPING BEYOND THE WHAT IF's?

2011-10-27T09:23:00.000-07:00

“We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be.”

~ C.S. Lewis

last week, we headed to seattle for appointments with DR D.

both DR H and DR D suspect that parker and i have an underlying condition that is impeding our fight and recovery from lyme and company. this disorder is a seperate issue from lyme, but it may have been triggered by it. i hate to be vague about what it is but right now, i feel the need to be.

for several reasons -

#1 we're just learning about it and have a whole lot more to learn.
#2 right now, our diagnosis is clinical. we will be undergoing some lab testing but this will take some time as the testing can be a fairly involved and lengthy process...
AND
#3 we have an atypical presentation of this suspected disorder. we are hopeful that lab results will aid in providing a more definitive diagnosis however, just as we've learned firsthand with lyme, lab testing is not always conclusive. (argh)

why blog about it if we're not "talking" about it?!?

...because we're about to embark on a journey that is requiring a tremendous step of faith and we need prayer. big time.

we are moving forward with treatment for this specific disorder...even before lab results are in. a positive response to the medications will be more confirmatory than lab results AND the medications themselves are fairly benign, meaning they do not have risky side effects associated with them.

there are 4 primary meds our docs will be using to treat us. these will be staggered in over the course of the next 3 weeks. a slow integration of medications will allow our doc's to track whether or not there is a response to the meds. most likely, it will take another 6-8 weeks before we can expect to have a clear picture of whether or not these meds are working.

so why in the world blog about it if we don't know anything for sure?!?

...because there is faith and hope but there is also fear and doubt and we are having to step beyond the "what ifs"...

let me be really clear, it is not the treatment for this disorder that we fear...rather, it is the fear that it will not help...that it is not the missing link that are doctors (and we) suspect is impeding our recovery.

there are no easy answers. we don't know whether this disorder is part of the problem...but we feel very strongly that God has lead us to this place. i hate to label things a "God thing" but certainly we feel very strongly that God has orchestrated the events that led to this possible diagnosis yet we have huge moments of great fear and doubt -

what if we are totally off the mark here?
what if this is not the missing link?
what if this treatment brings no relief?
what if we're no better off in 6 weeks than we are today?

the prospect of facing that is a crushing fear...this has been a long, grim, fierce, unrelenting battle...and over the past several months, parker has begun to lose hope that he will ever be well again. he is tough, has persevered and overcome so many obstacles. he has endured so very much all the while maintaining his great humor and gentle, sweet, caring nature. in many ways, he is so much better than where he was 2 years ago...but he still is so sick. his life is still very, very, very far from 'normal'. and he is losing faith that he will get better...or that anything will help him. THAT is horrendous place to be. for him... and for us.

the extremely difficult circumstance is that we cannot promise parker that this treatment will work. we cannot promise him that this is the missing link that will push him past the hurdle and propel him towards the finish line of this marathon fight against lyme and company. we cannot promise him that he will be able to get back to the business of being a kid before his childhood is done.

we simply don't know what the outcome will be
but
we do know that God is sovereign over this

we feel at peace with moving forward in this next step of treatment...and yet we continue to wrestle with the many "what ifs"...

what if a non-response to this treatment throws parker into a tailspin of undulating hopelessness?

what if, in the feebleness of our humanity, we've misinterpreted God's leading?

what if stepping beyond the what ifs doesn't end the suffering?

what if...what if...what if...

the "what ifs" are a painful, disheartening and scary prospect to consider
and
the "what ifs" are precisely why i felt compelled to blog about something i'm not yet talking about.

we need your prayer and support to step beyond the what ifs and have the courage to keep moving forward whatever the outcome.

stepping beyond the what ifs is a matter of faith and trust.

faith in God requires we step beyond the what if's... even when we fear the steps may not lead to the outcome we desire
and
trust in God means believing in His best, in His mercy, in His goodness...no matter what the outcome.