Our First Fight...

One of the things that's always scared me the most about parenting a special needs child is what it would do to me. I know that sounds a little selfish, but pretty much all of the special needs mothers I've met have an edgy defensive to them that has developed after years of fighting everyone from the govt., to the doctors, to their own family members to ensure their children get the best care. This past week Babies Can't Wait denied my request for Andrew to get speech therapy on the grounds that he is doing "too good." Here's the thing, I always try to paint my kid in the best possible light. I feel like if he is surrounded by hope, he will do better and I'm not going to stop doing that. However, lots of Cri Du Chat children turn over at 4 months. Lots of them start eating solids at around this time too, but it doesn't change the fact that they have a difficult time communicating when they are older that results in frustration and, ultimately, self-mutilating behavior. If any of these people at Babies Can't Wait were forced to imagine their own children banging their heads against walls or picking at their skin until it bleeds, you can bet they would demand speech therapy too. It's ridiculous for trained therapist to act like 4 months is too young, too. I can't tell you how many hours I've spent researching this topic and how many parents I have spoken to that say speech therapy should start as soon as possible. This isn't about how well Andrew is doing, it's about the almighty dollar. If my private insurance covered this type of therapy, I would avoid the argument altogether, but, to my chagrin, it doesn't. It's all about money no matter where you look.

I love U2, U2?

My husband sent me these lyrics this morning. He said they remind him of Andrew:

MIRACLE DRUG

I want to trip inside your head
Spend the day there…
To hear the things you haven’t said
And see what you might see
I want to hear you when you call
Do you feel anything at all?
I want to see your thoughts take shape
And walk right out
Freedom has a scent
Like the top of a new born baby’s head
The songs are in your eyes
I see them when you smile
I’ve had enough I’m not giving up
On a miracle drug
Of science and the human heart
There is no limit
There is no failure here sweetheart
Just when you quit…
I am you and you are mine
Love makes nonsense of space
And time… will disappear
Love and logic keep us clear
Reason is on our side, love…
The songs are in your eyes
I see them when you smile
I’ve had enough of romantic love
I’d give it up, yeah, I’d give it up
For a miracle, a miracle drug, a miracle drug
God I need your help tonight
Beneath the noise
Below the din
I hear a voice
It’s whispering
In science and in medicine
“I was a stranger
You took me in”
The songs are in your eyes
I see them when you smile
I’ve had enough of romantic love
I’d give it up, yeah, I’d give it up
For a miracle, miracle drug
Miracle, miracle drug

Ah! There's the rub...

One of the ladies on the Cri Du Chat website posted this scripture verse today: John 9:3-
Jesus answered, "It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him."

Mark has been saying lately that God is either in charge of everything or in charge of nothing. I think this scripture answers to that. It is the rub of Christianity. We serve a loving God who allows bad things to happen. To again quote C.S. Lewis, "Pain is the megaphone to a deaf world." So, is it so awful that God continuously shakes us awake with sickness, loss, disappointment, etc.? Or is it only awful because it happened to me? I can think of about a million ways I would have rather been shaken. In the meantime, though, I do hope that God can use Andrew. Otherwise, I will be highly pissed at the waste of it all.

Speaking of being pissed, I caught Andrew's thrush! At first I thought I had a canker sore in my mouth, but, um, no.

Sweet little Patrick missed his daddy so much yesterday he nearly broke my heart. He went into our room and tried on his daddy's ball cap and shoes and then picked up the phone and pretended to call him. When Mark finally got home, Patrick wouldn't let him out of his site. Fortunately, he is not so sad today. We went to Michael's where he had a great time standing up in the cart and pulling things off the shelves. He all but destroyed a bouquet of fake flowers-no great loss there! We also got to go outside and play a little. I picked some rosemary for the potatoes I still haven't put together. I think we will end up having frozen pizza. I have got to pull my self together and start keeping this house a little better. Lord have mercy!

Sickly in Smyrna

Well, I have a cold. However, having a cold isn't nearly as bad as my husband's reaction to me having a cold. This is when his mother really emerges in his personality. At the first sign of a sniffle he starts telling me to go to the doctor. Then, he goes to the drugstore to stock up on drugs and if I don't take the ones he wants me to when he wants me to he gets mad. Now, I'll admit, I'm often stubborn to the point of being stupid, but I've been getting colds for the past 34 years. I think I know by now how they're going to play out! Besides, nagging me only makes me dig my feet in more. (That's a mature attitude, eh?) Anyway, my biggest concern right now is keeping Andrew cold free. A large percentage of Cri Du Chat children die in the first year from respiratory infections and it is rare to find one who hasn't been hospitalized at least once because of one. No pressure there! It would help if my house wasn't a germ factory. I've heard that cleaning helps with that, but I would really need to see scientific data before I go that route. :)

Ups and Downs

Well, there is good news and bad news. The good news is that Andrew rolled over for the first time on Saturday! He had been working on it for a long time and finally succeeded. I'm sure it will be a while before that becomes a regular occurrence, though. I have also been feeding him a little bit of oatmeal cereal each day. He had been doing really well with it, until today when he gagged and threw up. I shouldn't get discouraged, but I do! Also, he has thrush which I assume he picked up in the church nursery. Ew! Maybe that's why he didn't do well with the oatmeal. I just don't know.

I went to a playgroup for the mom's club today. One of the reasons I joined this particular mom's club was because the website says that, " they understand that a family's decision for a mother to stay at home to raise the children often involves considerable financial sacrifice." Well, lets face it, there is no financial sacrifice going on with these ladies. God bless their hearts, they all have money. I'm supposed to have the playgroup at my house in a few weeks and I'm really not looking forward to it. I love my house, but my living room is the size of one of their bathrooms. Awesome.

October 5, 2007

4 months ago our second son, Andrew, was born- small and sweet. We found out about two weeks after he arrived that he has a chromosomal deletion called Cri Du Chat. It's a devastating diagnosis- kind of an unhappy mixture of autism and down syndrome. My sister, Peggy, has a child with spina bifida and has been in the special needs world for 14 years. Just watching her, I've always known it was a club I didn't want to join. However, I think I always thought that if I did have to deal with something like this, I would do ok. Now, I'm not so sure. People are always so sugary sweet about their roles as special needs parents. They never expose their darker feelings, probably because they're afraid of what people will think of them. However, I don't see a point in living some rosy lie. I love my kid, but I absolutely hate the fact that he has this. My very being rebels against the idea of what he may become as the years pass. I can't stand the idea of his sweet little face being twisted into a sharp abstract as he gets older. I don't want to think about him living in a group home because he is unable to care for himself. After his bath each night, I give him a massage and I pray over each part of him while I do it. "God, let his legs run and play. Let mind be able to think clearly. Let his tummy stay healthy and normal. Let his eyes close easily with sleep each night. Let his lungs stay clear of infection. Let his ears always hear. Let him be able to speak. Let his hands someday hold the hands of his wife and children." I know this makes me sound like a terribly spiritual person, but, truth be told, I am having a hard time believing that God will answer me. I just hope that the more I pray, the more I will believe. It's like C.S. Lewis said, " I don't pray because it changes God, I pray because it changes me." Of course, in this case, I hope to do both.

Today Andrew had an appointment with a new therapist who will see him in addition to his regular therapist, Jim. Whenever I see anyone new I always ask the same question, "How does he look to you?" Of course, most people have never seen or have rarely seen a child with Cri Du Chat. This therapist has seen a few in her career and, based on that, she was prepared for him to look a lot worse. She was actually pretty pleased with his muscle tone.

In addition to Cri Du Chat, Andrew has a hypoplastic corpus callosum, a thinning of the area of the brain that allows the hemispheres to communicate. This therapist, Stephanie, is going to come once a month to show me exercises that work that area of the brain. She feels if we can improve that communication, he should have no trouble walking. Also, she feels he has good cognitive abilities. He seems interested in what is going on around him and he brings his hands together at mid-line (at the center of his chest beneath his chin) and also puts them in his mouth.

I hold on tightly to whatever good reports I get, but it frustrates me that no one can give me an idea of what the future will hold or what we can expect for his development. I think that's the hardest part of all this. We are looking at years of unanswered questions and lots of therapy, praying for a payoff that might not ever happen. We just have to wait and see.