Tuesday, May 16, 2006

Enough already

It's official. I have no neck. My head's other occupation as battering ram has resulted in it having sunk about level with my shoulders. My hair's still visible, but only just. What's that you say? Sounding a little looney, am I? Well, I confess that I'm fighting the urge to curl into a fetal position and pull the covers over my head and just never come out. Helphelphelp...

Q saw the neurologist this morning. The MRI was very helpful. It was not good.

As I understand it, one needs a great deal of variability in the surface of one's brain--all those squiggles and bumps (invaginations) represent a huge surface area which in turn represents the number of neurons in that brain. Q's brain is pretty smooth from about the middle of his head to the back.

Gulp.

Though he's showing progress with therapy and it is impossible to know for sure the extent of things until he actually does grow and gets a little older, an MRI result such as this tends to indicate "severe" mental retardation (MR). On the scale, measured using a standard test, there is mild, moderate, severe, and profound MR.

Quoting the University of Michigan Children's Hospital website...
"Severe (IQ range 25 to 39): Preschool-age children with severe MR have delays in motor development and little or no communication skills. With training, these children may be able to learn basic self-help skills, such as feeding themselves and bathing. As they grow older they can usually walk. They may have some understanding of speech and some response to it. As adults, they can get used to routines, but will need direction and supervision in a protective environment."

I find that I can't stop crying.

I was prepared for something more along the lines of mild to moderate, I guess. I mean, there's no denying that he's not quite up to other babies his age developmentally. But he continues to progress and that should continue in perpetuity, right? That's how it works, right? Apparently not.

He may never be able to function without a guardian. According to the neurologist, he will more than likely never be able to function without a guardian. Babies brains are very mobile and do often correct for all sorts of deficiencies, but this appears insurmountable. It sounds like sort of a black hole where his visual cortex should be...

I don't know how to wrap my head around this.

This, all by itself, is more hell than one little guy should be expected to tolerate in a lifetime. Poor choices shouldn't even rank. People with no self-control should just plain step off. This makes me so angry. So terribly, unspeakably angry. Back to that free will thing again. Gag.

I guess this would be the place to insert the ten-ton swear words. There just, truly, aren't any appropriate enough to bother uttering.

The neurologist's chart notes should be en route to me by next week, so I'll have more real info then. I wanted to, but was too thunderstruck to say, "Use the big words, please. They confuse me less." So there's a great deal I'm not as clear on as I'd like to be. What he was very clear on is that there's plenty to do which can maximize the building blocks Q has. It's just that those blocks are not enough to do the job, as it were.

Q will probably have the eye surgery sooner rather than later and that will help, but it will not fix this. Q will have a visual assessment to determine how best to stimulate him visually without overloading him, which happens more quickly for him than in other babies. Q will have a lot of therapy and the best of nutrition (a nursing mommy who is taking vitamins and supplements and could feed a small country with the extra milk). But it will more than likely not be nearly enough.

There's no name for this--I'm sure there is, but it's not a syndrome or anything. We'll trot off to a pediatric geneticist after awhile to rule things in/out on that front. It seems that something happens at the beginning of the second trimester of pregnancy to cause this, though we will probably never know what it was. Let's see, where was I at the beginning of the second trimester? Oh yeah, that's right. In an emotional free fall into Hades. Huh. I wonder...

Well. I'm not making much sense, and the little squirt just awoke from what I was sure would be an hour long nap, so we're heading off for groceries.

Thank you for lending your good thoughts, extra strength and prayers on all sides. I cannot tell you how much it means to me. To us.

16 comments:

Andie said...

((Carrie))

Myrtle said...

I'm speechless. I just don't know what to say.

Give him an extra goodnight kiss on the forehead for me.

Scooby (aka myfairladies) said...

Oh sweetheart. You and yours are in my prayers... please know that I think of you often.

HUGE HUGS

Old Dominion Heather said...

Oh Carrie...

We just prayed for little Q. tonight when I put the kids to bed. We will continue. Hugs from us.

Heather

Anonymous said...

Carrie, as Myrtle said, I am speechless as well. No platitudes here, just know that I am praying for you one day at a time. I do hope that you will find support from possibly other parents who have experienced similar situations.......Kim

Karen said...

{{{Carrie}}}
You and Q and all your children are in my prayers. I am sooo sorry honey. May God continue to grant you wisdom and strength.
Karen

Anonymous said...

I have been reading your blog and other posts. Your family (and especially Q) will be in my prayers.

Bless you
amelia

Miss Magic said...

I hope you can find some comfort in this poem frequently distributed in the Down syndrome community.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"Welcome to Holland" Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."



And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Carolyn said...

Where's the icon that sends you an apple pie, washed and folded laundry, and a cup of tea? I'd be clicking on it!

More huge hugs. That weight you may feel is you getting squished by us.

kelli said...

I would put your head on my shoulder and wrap my arms around you in an embrace of sisterhood and rock you. I have been praying for you and now I am crying for you. Sweetie, people you will never meet are storming the gates of heaven on your behalf.

Doran said...

Aw, Carrie. Though you don't want to wear the title just now, you are one amazing dura mater! I wish I could give you the time you need - to sleep, to ease your aching, to eat chocolate and make sand castles. I can't. But, you will still be dura mater.

Even when you'd rather find the EMERGENCY EXIT because you suddenly realize that you are terrified of flying, you will stay. You'll buckle your seatbelt. You'll follow instructions. You'll eat the peanuts. And, you'll move forward. Little by little. That's enough for now. Little by little. Flying comes later.

I'm with you in spirit. And, my arms are out for hugging...or for catching.

Kisses to your precious ones.

Under the Sky said...

"The news of a baby is reason for celebration of God's manifest grace, reason to hope for humanity, renewal, even if it's less "convenient" than one's original plans."

Remember those precious words of yours in your darkest moments. You wrote what is absolutely true.

Little Q will be no different because our God is a mighty God--able to do amazing things with our small faith.

"Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow." (James 1:17)

May you know His strength for today.

Praying for you all,
Kate

Anonymous said...

Carrie-

I read your blog from a link on Kate's blog....

My pray for you is that God will give you peace, His perfect peace which surpasses all our understanding.

I will be praying for you and your family....


Cat

Anonymous said...

Oh, Carrie, I have no words to say but that I will be praying for you.

Noelle

Yevrah said...

Deep Breath. And one after that. Lots of love. And more after that. You are embarking on a journey that will bless you with the ability to smell the roses. And the roses in your garden are more precious and unique than most others.

There will be peace. There will be a setting of wrongs to rights. In the meantime, tend those roses. Tend your heart. Tend your gifts from God...

I love you sister. cindy

Melora said...

No words of wisdom here, but I'm praying for you and your family.
Cordially,
Melora