"I'm Wishing..."

Andrew LOVES movies. He'll get on a movie kick and stay with the same movie for weeks. Lately it's been "Snow White." And while he still can't hold a conversation, he can memorize a song like it's nobody's business. Here's his latest musical triumph, accompanied by Kadee Joy and sometimes loud Mommy.

Failure to Thrive

So after being denied for Medicaid...again...We're going the Katy Beckett route. This route can provide Medicaid to people who make too much money, but who have children with severe enough disabilities. I think it's funny that the government thinks we make too much money with my lone teacher's salary.

Amid the mass of paperwork is the Physicians Evaluation. Today, Chris took the boys to our pediatrician, the wonderfully empathetic Dr. Copeland.

As I read through the long medical history of both my boys, my eyes caught the words "Failure to Thrive" on Jeffy's evaluation. Our rheumatologist was the first to use these words when referring us to the neurologist. Jeffy is in the 1st percentile for weight. I knew he was small...I just didn't realize he was that small. But then again, as I took him out of his evening shower (he loves them), I was able to carry him easily in my arms, just as I always have, just like a newborn baby. He is so tiny.

I also had the strange thought that I sometimes get that wonders how I would have reacted had I, before children, before marriage, looked into the future on this day-what would I have thought about the words that stuck out?

"Motor Delay"
"Expressive speech delay"
"Failure to Thrive"
"Metopic Craniosynostosis repair"
"Sensory Integration Disorder"
"Autism"

My beautiful boys.

What has invaded their bodies and minds, bringing these upon them? And what has my own part been in them?

I feel some days, like today, that Andrew was robbed of his mind, and Jeffy was robbed of his body. I see these words and scoff at my own naivete that assumed my children would be completely healthy, without flaw, without pain. That I could hold conversations with them...that I could make them understand me...that they would grow up, graduate from college, marry, have children...without even a thought about just how many thing have to come together for life to work like that. But this is foolish thinking, weak thinking, negative thinking...For the time being I would be excited for my dear Jeffy to walk without pain...or even just to WALK, for Andrew to tell me how he feels, or to care how I feel.

But in the meantime, I will seek all the help for them I can. And I will remember what I already know...that these labels come nowhere close to defining my sons. My Jeffy, with his beautiful big brown eyes, infectious giggle, and funny little gait. My Andrew, with his irrepressible joy at the unseen, his songs, his dances, his amazing strength, and his warm snuggles.

And so I look forward to the day when we will all be restored from our weak earthly vessels into our new heavenly bodies, and where we may all understand and be understood.

Bleh.

It's Thursday, the day before Good Friday, and I'll admit that I'm pretty nauseous.

Chris had class tonight and I had choir practice for the Good Friday service. Chris' 17 year old brother Charlie moved in with us yesterday, and so we worked it out that he would go with Chris' older brother Rich to his house for the evening while Chris went to class and I took the kids with me.

So Chris, Rich, and Charlie all left for their respective places, and I started to make a little dinner for the kids and I. And five minutes later, Jeffy puked all over himself, the kitchen floor, and some of the carpet in the living room. SICK.

He's acted pretty miserable since then, although the upchucking has ceased. You'd think I'd be used to the ill bodily functions by now...but gross churned milk vomit is still a point of weakness for me, and I've been on the edge since the aforementioned puking.

It's been another week of change. We're feeling very positive about Charlie coming to live with us. He, his parents, and Chris and I all reached the point at relatively the same time where this particular change in living quarters seemed to make sense. So we are hopeful that Charlie's prospects will come into clearer view, and that he will find strengths and opportunities that will help grow him into the man God so lovingly desires him to be.

Jeffy's playing the piano right now. I'm pretty sure he's going to be the artistic one in our family. We can set him down with a Magna Doodle or in front of a piano and he'll be content to create on either for much longer than any normal 1 year old.

Kadee Joy decided to increase her mother's overall amount of patience by testing it the other night. She had been begging me to be allowed to chew a large wad of that gross, cheap bubble gum that comes in the huge packs of candy. So, finally, I assented. She wanted to take a bath, and Andrew did as well, so I piled them into my jacuzzi tub, poured in the bubbles, and left them for two minutes.

Apparently, two minutes is all you need to get a wad of gum stuck in your brothers hair. Mind you, it was in her mouth. Still not quite sure what she was doing to get it into his hair. Andrew had quite the mane when this happened, and the gum was so big that it turned his scalp into quite the disaster. Needless to say, after working on it for a while, the decision was made to cut Andrew's hair. Chris was at class, so the task fell to me. Andrew did not appreciate it, and Kadee Joy was sent to bed.

I must say that I don't think I've ever seen a more pathetic hair cut. And now the poor boy has a cold sore. All in all, he looks like a very sad little fellow. Kadee Joy is still apologizing for it. I had to cut the hair around the gum shorter than the rest, so he has a little bald spot to add to the pathetic effect. Ugh.

So now I'm hoping that Chris will get done with class early and come relieve me of the baby boy and his puke. It doesn't seem to matter how much I clean him...the odor lingers.

I had another dizzy spell yesterday, right around the time my kindergartners were set to come in. My team of specialists (teachers, mind you :) once again came to the rescue and took my classes until a sub was able to come in. I came home and slept for five hours. Sleep really does seem to be the only way of abating the symptoms once a spell has started.

Alright, Andrew wants to shower, and let's be honest, he needs to. Off to the races again.

I don't want to play anymore

My adventure with the withdrawal of my anti-depressant took a sharp turn downward this morning. I think I was working on day 5 without it (remembering, of course, that the tapering off has been going on for several weeks) and felt like I was doing well.

Then Chris was late getting back from the store, making it so that I missed the hair appointment I had scheduled for this morning.

And friends, I cried, and I cried, and I fell asleep, and I cried, and I did the dishes while I cried, and I took another nap, and I cried.

Naturally...my crying had very little to do with my hair appointment having to be rescheduled. But I certainly created a fun morning for my husband and children. It got to the point where I started trying to come up reasons for why I was crying. And when I spoke them aloud, they sounded even stupider than they had sounded in my head.

So, I took my dose of anti-depressant. Apparently a week is still too long to go without. It was horrible, although luckily my poor husband was able to deal with it fairly cheerfully, and got a lot of outside work done while I sobbed over the household chores.

On a not all that less slightly irritating note, Jeffy went into to the pediatric neurologist on Thursday. After being in the office for an hour and a half, we were told that it didn't appear that there was really all that much wrong...at least from a neurological standpoint. He became the fourth doctor to suggest physical and occupational therapy, which we've been on several waiting lists for for a few months now. He had nothing to say about the high rate of inflammation in Jeffy's body, other than that area was not his area but rather in the area of the rheumatologist who had referred us. Oh bother.

My great grandmother also passed away this week, so instead of going to Women' s Retreat, I will be flying over to Oregon to attend her memorial. I'm bummed about missing Women's Retreat, but really there was no thinking about which was more important. My grandmother's house (at least, where she lived before being put in a wonderful home for seniors needing assistance) complete with a beautiful garden, waterfall, and forest as her backyard, has always been the closest thing to heaven I have found on this world.

Back to work was up and down as well. I had some fantastic days with my kids, but some classes that were simply out of control. I'm looking forward to summer now...In my heart and mind in can't come fast enough.