Tuesday, September 17, 2013

I am with you always, until the end.

Jude finally finished the evaluation merry-go-around we started six weeks ago.  I'm going to choose to look at the good side.  Because looking at the down side just isn't an option.  I've got too much to do to break down.   Frankly, I just am too tired from driving to appointments to cry.  But I am struggling.

The "see it from the good" side:  we don't have to do much to "prove" to the insurance they need to cough up a check to the therapists. 
 
In this era of insurance looking for any loophole it can, that's a good thing, right?

  • His articulation is so terrible that the speech therapist didn't even need to score that section to determine he'd qualify for therapy.  (His pragmatics were worse than we thought, too, but they did need scoring.)
  • There wasn't a whole lot lower he could score on the sensory portion of his Occupational Therapy evaluation.  He has little fine motor control and did "fine" motor skills with his "gross" body -- instead of coloring by moving his hand, he used his entire arm to propel the crayon.  
  • When the physical therapist realized that the age-appropriate test (for ages 6-18 years old) was not going to give us an accurate picture of Jude's skills (basically because he couldn't do any of the skills on the test, she dug out the birth-to-72 months (6yo) evaluation.  Jude has the skills of a child 34-38 months old.   The extra good news is that between his last evaluation in May of 2012 and the one three weeks ago, he didn't lose any actual skills.  He "only" lost the equivalent of 14 chronological months.  (The two months' gain for locomotion is statistically insignificant when you factor in the chronologic age gap AND the fact that she was scoring him as 71 months of age (the top end of the test) when he really was only 6 days shy of 73 months old.)



None of this is a surprise.  What it amounts to is us being able to say to the insurance company, "We TOLD you, now write the check already."  It means that continuing to homeschool is the best thing for him, because it gives us the ability to help him with all of these foundational things,.  It means that he's not STUPID, he's disabled.

I think I am going to cry anyway.

It also means therapy at least two days each week.  Currently, we have PT on Tuesdays and OT and Speech on Thursdays.  We may have to shift things around so he can add another PT session, because one PT each week may not be enough. 

It means homeschooling isn't really a "choice" any more.  There's something to be said for wanting to homeschool vs. having to homeschool because there is no other option.  Because let's face it -- with numbers and delays like those, he is going to wind up killing time in special ed, not being pushed to his potential.  And forget logistics of getting to the appointments around the school calendar -  how on earth would he physically be able to keep up with a full day of school plus therapies?

It means that comparatively, Damien is more advanced than Jude.  Odds are good, in the next six months, he's going to blow right by.  I refuse to pity Jude, or let anyone else do it, but I still know his self-esteem is going to take a hit.  I know that injured hearts can hurt worse than broken bones.  And all I can do is watch it happen, and hug him when it does.

It means accepting that "catching up" is no longer a realistic goal.  Since Jude was first diagnosed with his medical issues at just over one year old, there was the hope that he would "make up" the time.  It would be slow and hard won, but there was hope he would eventually close the gap between his developmental/skill and chronological ages.  When he had last May's testing, we were thrilled that he has remained steady through all of the school-then-homeschool turmoil.  For that period of his life, hold steady seemed a victory.   What is so disheartening is despite all we are doing now, he's barely treading water, and the gaps are actually widening.  You know doctors...there's never a "guarantee" of anything.  Just leaving that shadow of doubt or spark of hope so you don't sue them.  We'll still do everything our power to make him a better Jude, but let's be brutally honest.  He's almost completely unlikely to become an average Jude.

None of this is a surprise.  But to see it in writing still feels like a sucker punch.  It's that whole realization of "We can't pretend anymore that it isn't as bad as it is."

Do I get to be angry?  I don't care if I "get" to be or not.  Because I am.   But I don't know who to be angry at.

I can understand Naomi, who has lost the life she dreamed of. 


Angry at Jude? That's ridiculous.  I can't be angry at him - he's trying so hard to overcome things that he was born with.

I could easily be angry at myself and often am - it's easy to muster "mama guilt and anger" - but logic says I didn't give him these genetics on purpose.  And I followed all the "pregnancy rules" on what to eat, what not to eat.  Heck, when I was pregnant with him, the doctors said "Don't eat nuts or fish or this or that to avoid allergies," so I avoided it all and he's still allergic.  (Because life isn't unfair enough that you can't run after the ice cream truck, but when you finally catch up to the end of the line of every other kid who got there before you, you can't have anything he's got on it, either.)  It's not a lack of love or desire to help him.   I'd take paralyzed legs in a heartbeat if he could run without braces or pitching forward and falling on his face.   I'd do it if it meant he could run in the first place.

For the same reason, I can't be angry at Neal or our parents or our grandparents or wherever we got these genes.  Sure would be convenient to blame my grandmother - it's clear one of the wonky genes came from her,  and she's not here to defend herself.  But it isn't her fault, either, because it came from one of her parents - and which one do I blame there?  (And really, how can you blame a man or woman who was born before anybody began to wrap their heads around Mendel's genetic theories?)

So yeah, God looks like a good scapegoat.  His shoulders are broad enough.  Faith tells me it's not His fault, either, though. He didn't look at his "Babies to create" list and say "Falciani...yeah, give them a house full of ones that need every therapy service known, and while you're at it, how about every doctor clueless on any condition that has more than two syllables.  Ok, I can be benevolent...every doctor except one or two...and give those two year shelf lives. And let them wander the medical desert searching for them."

But nonetheless, I am angry. 

I've long had an affinity to the Blessed Mother.  Her name is Mary.  "Bitter."   Yet she is a model of grace, of acceptance and humility. The very human mother who stood by and watched life happen to her Son, and couldn't do a thing about it, but watch.  Watch Him be ridiculed.  Watch His battered body limp along the road.  Watch Him shamed and battered and broken for being Himself, for being how He was made.

Watch her Son's mouth utter what they all were thinking.


She's a better woman than I am.  Because she just accepted.  Me - I need to open my big mouth and ask

My God, my God, why have you forsaken me?  Why have you abandoned me?  Left me like Naomi, mourning what should have been?  I've accepted everything you've thrown at me.  Kept on going.  Kept on marching.  And yet, you still keep throwing more at me.  Me? I can live with it.  I can deal.  I can handle it.  It's just me.  But now, You've messed with my son.

You know those "a year is but a moment, and an age is but a year to You" time frames? How about You come here and live my "year" and see how You like it.  Live my "age."  Yeah, not so much fun.

But what can I do?  To paraphrase Peter, "To whom shall I go?"  I don't have any other options.  After all, we've run out of doctors and therapists at three different hospitals.  We're back in the desert again.  (Forget manna. I bet it has gluten in it anyway.  Send somebody with an MD that knows what an eosinophilic condition is.  Heck, I'll settle for if he can spell it.)

I'm not giving up on my little lost sheep and saying "But I've got a whole flock of others."  I gotta get this kid (pun intended) sorted out and back into the herd.

A doctor or therapist for him is worth more than any gold, so I'm going to light a lamp (or at least the headlights on my car) and look for him or her.

I'm holding You to it when You said,





I sure hope so, because this age is going to have some very long years.




Scripture passages:

"Do not call me Naomi..."  Ruth 1:20-21
"Eloi, eloi, lama sabachthani?" Mark 15:34
Parable of the Lost Sheep, Parable of the Lost Coin - Luke 15:4-10
"Master, to whom shall we go?" John 6:68
"And behold, I am with you always, until the end of the age.”  Matthew 28:20





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9 comments:

  1. Heather aka Sarah's MomSeptember 17, 2013 at 10:35 PM

    Hugs Meg. You are doing a great job!

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  2. (((hugs)))) and prayers.

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  3. I don't know if misery loves company or not, but I'm right there with you. We adopted 2 children from China this summer. One of them is doing beautifully, and the other is severely disabled. I am struggling. I see ______ologists more than I see friends these days. We have feeding therapy and physical therapy every week, and OT every other week. We're fighting to get Speech Therapy. And I'm just worn.

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  4. Meg @ Adventures with JudeSeptember 22, 2013 at 11:28 AM

    Worn is a great way to put it. I say to Neal "I'm so tired," and he can't understand why I'm not sleepy-tired. I'm just brain-tired. Prayers you get the therapy you need - we've been blessed in that aspect where we haven't had too much fighting for therapies.



    I hear you on -ologists vs. friends. It's bad when the other day I went to google something from my phone, and the Google app assumed duPont was "work" - it tracked how often I was there (daily!!) and assumed based on frequency that that was my office. LOL

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  5. It isn't an easy road that you girls are traveling but God WILL be there the WHOLE way WITH you. I know God will be with you because He has been there with me the whole way although it has not been easy. If you allow God, you will find Him more real through the valleys than on the mountain tops where you don't think to look for Him. He is the God of the Valleys. Always remember that.

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  6. Praying for you! This post was the top viewed post at the Mommy Moments party last Monday so you will be featured this week! Your heart has touched many other moms. Thank you for sharing!

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  7. Meg @ Adventures with JudeSeptember 29, 2013 at 10:58 AM

    Thank you! Wow! I hope I've helped them. This was a hard one to hit "publish" on - it's not an easy subject.

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