POTS - the syndrome not the weed(s) - Part II

so i was able to share with you a tiny bit of the journey to Mayo Clinic and lacey's diagnosis. . . i realized i wasn't completely honest about the hardest part of that journey. . . the seemingly unanswered prayer.

when lacey first got sick - it was routine and mundane one minute and then complicated and scary the next. we went through the gamut of diagnoses - she had the flu, food poisoning, altitude sickness (yeah, we had been in the mountains of Montana and Wyoming and then on a jet that brought us home), SARS (yeah, that was interesting too. . . we had a few people that wanted us off the plane before we ever took off). then it was cancer, cancer, and more cancer, with meningitis thrown in.

i prayed a bit and then a lot. and then our family and friends prayed a lot and then more and more.

as things were ruled out, we all said prayers of relief and thankfulness but still prayed for an answer, positive it would come, and come quickly. God, in his infinite wisdom could not mean this really, nice, funny, bright, compassionate kid to suffer this kind of pain. she didn't need the current health crisis to bring her to salvation at the cross and i was pretty sure i didn't either (but that's another story for another day).

i figured we didn't have enough prayers being said on her behalf, so i started going outside our immediate family and friends to other churches, and other churches in other states, and other churches in other countries. . . and still we didn't have a diagnosis - so therefore, we didn't have an answer to prayer. . . (yep, i know what you're thinking now - but we were blinded by our desperation back then)

that began the year of 28 prescriptions. we had a prescription for just about every symptom. we religiously :) let our prayer supporters know a new drug regime was starting and ask that they would "please pray that this would be THE drug that would help."

nothing ever touched the headache or the fatigue or just the whole weirdness of why she could be "ok" sitting up at the table one moment and get incredibly ill as she went back to her bedroom the next. in fact, the drugs brought with them a slew of side-effects that made everything worse.

we gave up on the drugs.

we continued to ask for prayer. the elders came. and still no answer.

when the doctors couldn't find anything to explain her symptoms, and the drugs weren't working, they began to ask to see dave and i in the next room. they talked in hushed tones about depression and how that could account for her symptoms. i was dumbfounded. how does depression cause one pupil for no apparent reason, to just suddenly dilate???

there was something wrong. i knew it. lacey sure as heck knew it. and i knew that God knew - and for some odd reason, He wasn't sharing.

we waited for months to get the appointment at Mayo's. lacey and i prayed the night before that God would honor our prayers - we would get a diagnosis. and we would be happy with just a simple diagnosis.

we lied.

we got the diagnosis but now we found ourselves in an alternative universe where we knew what was wrong but no one knew how to fix it, let alone treat it successfully. more tests, more drugs, more prayers, more treatment, more of the sickness.

we comforted ourselves with the fact that what lacey had was not life threatening. we thanked God for that, repeatedly.

POTS is life-altering, and life-changing, and life-annoying and frustrating, and exhausting, and depressing. POTS is unfair and made life hard for all us, especially lacey.

ok, so this is what i learned.

God always answers our prayers - sometimes He just says "no."

"no" to getting the diagnosis when we want it.

"no" to getting better with treatment.

"no" to getting cured.

those are all answers. . . they are just not the ones we were looking for. . . people would try to make this situation better by always pointing to this silver lining or that one. or they would try to do the theological arithmetic that would help us understand how His sovereignty and His stinginess on those "yes" answers still equaled a caring, loving, omnipotent God.

it comes down to this - God is God and we're not. bad things happen to good people and good things happen to bad people. and we're not in charge nor do we deserve any answers.

we have to stop living our Christian lives with that whacked out prosperity gospel that says doing all the right things = getting all the right results, having enough faith = having a great life.

we need to stop trying to figure out the "why" of the situation and learn how to live in the situation that God has allowed. the "why" is a temporary question, the "how" can have an eternal legacy.

God is God and we're not.

POTS - the syndrome, not the weed(s)

a friend sent me a link to story that abc did on a subject that our family has been living with for the about the last five years. the syndrome is called POTS - Postural Orthostatic Tachycardia Syndrome and one of our children was diagnosed with it at Mayo's.

we went through 14 months of being told our child was not "really sick" - it was anxiety and depression. . . of course there was anxiety and depression, as a result of a constant, severe headache, bone numbing exhaustion, low blood pressure, high heart rate, dizziness, times of extreme sensitivity to heat, noise, and light with vomiting, unexplained pupil dilation. . . and oh yeah, did i mention the severe headache that never went away?

attending school was close to impossible - friendships withered. our child was sick and becoming increasingly isolated and lonely. so we went from doctor to doctor, looking for relief, looking for a name. . .

14 months and four neurologists later, we went to Mayo's in Rochester and in 10 minutes the pediatrician gave our hell a name - POTS. we spent two days there for tests. we had an answer.
there was no cure, there would just be waiting and hoping some day soon she'd grow out of it.

it has not been easy. medication only partially helped with the symptoms. . . there were nerve blocks and drug studies that didn't relieve anything. a couple trips to the e.r. and a hospital stay this summer for stomach complications - but the headache has lessened a bit, and for that we are very thankful.

how people treat a child with POTS is really a lot like how children who are exceptionally tall for their age get treated - unfairly. a friend's daughter was commonly mistaken for being kindergarten age when she was only 3 because of her height. there is a big developmental gap between children who have started school and children who have started the tyrannical three's.
she was often wrongly chastised for behavior that is part of being three. a child may look five but be only three. a child with POTS may look "fine" but be anything but fine.

bottom line here. . . if your child is ill and exhibiting symptoms of POTS, read the abc report and contact the names and organizations listed at the bottom for more information. you owe it to your child.

after our child was diagnosed, we found the dysautonomia information network particularly helpful. great information and support for us and they were able to link up our daughter with other children with the syndrome. it helped - she found out she wasn't alone.