Tuesday, March 6, 2007

My Angel

I bet in your everyday life you don't often see angels -- but I have my own personal one.

This is my own angel -- my oldest son. He has Angelman Syndrome , always has and always will.

You've probably never heard of Angelman Syndrome before. I hadn't either until he was born 20 years ago. No, I take that back. I had never heard of it until he was diagnosed at the age of 5. I've lost count of the number of Doctors whom we have educated about it. Still, all these years later, we do the basic Angelman 101 when we come across someone new either at school, Doctors office, or out in the community. It's understandable, really. You see, my son is part of the first wave, if you will, of children diagnosed with AS. Only one year after he was born was the first official diagnosis made, and they trickled in after that. His is the generation that information and statistics are being gathered upon in order to better serve and inform the parents of children being born and diagnosed today. So, I guess we're breaking ground. Just the kind of job my angel is up for!

What is Angelman Syndrome, anyway? Technically, it is a deletion on a specific part of the 15th chromosome which causes an overall neural/developmental delay. Practically, it means that my son is a nearly 6 foot tall toddler. Seriously. He still thinks he can sit on my lap and he gives the best hug you've ever had in your life! He loves water, has no speech at all, is a couch-potato and a social butterfly. He's always in a good mood, except when mealtime is late.

It has certainly been a roller coaster ride these past 20 years, and it isn't over yet. Each stage has had it's challenge. When he learned to walk at five years - that was Wonderful!! He started school at 7, after little brother was born. Being naturally a great big people person, that was like a party for him. Getting older caused changes, as did another little brother followed by a little sister. We've gone through a few moves, puberty is past, and we had to deal with the heart-wrenching decision to place him in a care home when he became bigger and stronger than I am. But even then the LORD was faithful and gave me all that I asked for before I could consider making the placement. Our latest ride involves seeking Conservatorship over him. Not easy but not too difficult either. Just be sure you can write checks . . . . Lots of them.

I have a friend whose son is just a few months older than mine. Her son went through what is thought of as the typical rebellion and got into some trouble now and then because of it. She tells me often that I am lucky because my angel will never break my heart. Well, maybe not in that way, but there have been a few times when I thought my heart was broken regarding this sweet one who just goes through life with a smile on his face looking for his next hug. Doesn't a broken heart come with the job title of "Parent," at least every once in awhile?

When he was a toddler, we were part of a group that met once a week. The children, all developmentally delayed, would be in a little class like a therapy session - exposing them to all kinds of sensory experiences - and the moms would meet to share their angst on having a child who is delayed. Let me be right up front and tell you how much I hated those meetings (with the other moms) and felt even more of an outsider, which was strange because the whole point of the time together was to make us feel like we weren't alone and that there were others struggling, too.

Why did I dislike it so? Because essentially the whole time was spent lamenting the fact that they didn't have a normal child, how life was going to be different now than what they had planned, and how they hated the Down's or whatever Syndrome that had done this to their child. I absolutely could not relate to that. Call it bliss, call it delusion, call it faith in the absolute sovereignty of God, or whatever you will. From the second he was born, before we knew there was anything different about him, till today, my love and feelings for my son have been just the same. How could I hate this Syndrome for making my son this way when I felt there was nothing wrong with the way he was? He was happy and easy-going and a joy to be around. And he would stay that way his entire life. How can I be upset at that? Needless to say, it was a relief of sorts when he grew out of that particular program.

Just what is there to love about my angel? Well, I love the way he can sit / lay on the couch with me for hours and just snuggle. I love it when he is watching one of HIS movies and he just laughs and laughs and laughs! I love how he gets the picture frame with he and Dad on vacation years ago and will look at it and "kiss it". I love how his face lights up when he sees me. I even love how he can be so focused on an object, usually food, that he will avoid making eye contact with me. I love the way he plays with his brothers and the way they play with him. I love that he is the champion seeker in hide and seek. I love the way his little sister, half his size, can get him to sit down and stay there! I love how he is soooooo serious and focused -- and when you give him what he wants it's like you tickled him, he is so pleased. I love how he can sit in the tub for- just about -ever and splash and play as long as the shower head is dripping some water. I love how he never meets a stranger. I love the fact that, in his own silent way, he can get what he wants - like refusing to eat the hamburger and fries until he is given some of the milkshake first! (And the little light in his eyes when he knows he has won!) I love that when he has finished his food, he will stare and stare at mine until I give in and share. (it's a mother thing ;-) I love how he thinks he's so sly -- keeping eye contact with you and thinking that you can't see his hand reaching out like an elephant's trunk to grab some of your food! I love the fact that even though I may be done having babies, in a way, this angel will always be my baby. I love the thought in my head of a time years ahead of where we are now, when the other children are grown and gone with families of their own, and husband is retired, and it will once again be just the three of us like it was so many years ago. I love how just the thought of him puts a smile on my face.

My angel will turn 21 this year, which will mean that I've been a Mom longer than I've not been a Mom. Does that make sense? But with rewards like this . . . . . . . .

. . . . . who's keeping track?

(Originally published @ henandchicks.typepad.com)

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