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Friday, July 22, 2011

Big Brother Miles!

We made small talk with the doctor. He was funny. I thought I was relaxed, but when I started laughing a little too hard, I knew I was tense. Uncomfortable. Nervous. After all, the results from this test would tell us if this baby had Down syndrome too. Yet I was feeling positive. I've only heard of two cases where the parents had two or more children with Down syndrome. So we should be fine, right? Then again, our chances of having one child with Down syndrome were 1 in 8,021. Those are some huge odds. We were that one.

The test itself was quick and painless. It was similar to a pap with the clamps being the worst part. The best part was the prep before the procedure. They did a very thorough ultrasound, 3D and everything. They checked baby's length (almost 2 inches), both arms and legs, all the fingers and toes, right and left hemisphere of the brain, heart pumping at 163 beats per minute. Baby was asleep at first but suddenly woke and started dancing! What? Baby was moving it's arms and legs to the beat of a silent drum. Then turning and spinning, finally mooning us as if to say, "Leave me alone, I wanna sleep!" The ultrasound technician laughed. We all laughed. A little tear rolled down my cheek.

Miles was never this active on the ultrasounds. We saw him hiccup, cross and uncross his legs, suck his thumb....He was much less active, mostly just laying there when we visited him via ultrasound. When he was born, he was the same as most newborns. Sleepy. But he didn't just sleep, he barely moved. His skinny, hypotonic arms and legs didn't have the strength to lift on their own. He didn't cry. We didn't hear his cry until he was about four or five weeks old. He made little birdlike noises, we knew he had vocal chords. But no crying. And three months later, when most infants were starting to be quite active, lifting their heads, rolling onto their tummies, Miles was still just laying there. Unable to move without our help. But he was always watchful. From day one he had that laser eye focus. When he looked at me, he looked as if he could penetrate my soul. He'd stare at people, plants, things and in his head, something was computing. He can still do that to this day. Of course, now he's Mr. Curious and Mr. Active and Master Mischief. How far he's come along.

On our way out of the room I grabbed some crackers and juice they had in a basket. The procedure took just ten minutes, but the wait was nearly two hours. I was starving and ready for bed. Which is what I got. A delicious homemade chicken soup in bed as I now had bed rest for the next 24 hours. My guilt free staycation! I was looking forward to this part. I was not looking forward to the two and a half day wait for the results. That's exactly how long it took to get the results for Miles when he was born. I couldn't help but remember that horrible time in the hospital, taking care of my newborn, wanting to rejoice in his birth but feeling the overwhelming fear and anxiety that something might be wrong with him. Knowing in my heart that the result would be positive for Down syndrome, but wanting to believe that it was all just a big nightmare.

This time was different though. I was home, in my own comfortable bed. The food was good. I had a toddler cruising around and it didn't make me sad to look at him, it made me happy. He made me laugh with his energy and love. I was nervous waiting for the results, though in my heart I knew they would be negative for Ds. But still, the wait was killing me! I did everything possible to keep busy and not think about it. I read my book, did some writing, connected with friends, worked on the garden, played with Miles, zoned out on facebook, researched the news, but by Thursday morning I couldn't take it anymore. They should have called yesterday! I was starting to feel depressed, the anxiety was making me tense but I was told to do no exercise for a whole week. So now what? How do I cope with this? Then the call came at 9:11am. It was Kit, the genetic counselor we saw two weeks before the procedure. She was sweet and I heard elation in her voice.

"I have good news," she said.
Oh my God.....I exhale, "Please tell me!"
"The results came out negative for Trisomy 21 (Down syndrome), Trisomy 18 and 9. And the gender chromosomes are all normal."
"What does that mean," a hint of fear in my voice.
"It means there's no extra X or Y chromosomes either. It's all good."

Silence. I am silently thanking God and the Universe and just taking it all in.

"Do you want to know the sex of your baby?", she asks.
"Miles is going to have a little sister. You're having a girl!"
"Oh wow! That's awesome! Thank You Thank You Thank You sooooo much Kit! This is the best news ever!"

I went on and on about how happy I was for her phone call. I was doing my nervous laughter thing again, but this time it was out of relief. My whole body was trembling as the tension I'd been feeling the last few weeks finally passed out of my body and onto the earth. She laughed and said she was happy too. She wished me a great day and hung up. And I sobbed. I sobbed as hard as when I found out Miles had Down syndrome. And though I was sobbing out of happiness, there was a tinge of grief in there. Grief for any negative thoughts I'd had in the past few weeks? Grief for the fact that Miles has Ds and his sister doesn't? Grief because I needed to hear the results so bad and now the wait is over? I don't know. I just allowed myself to go through it, to let it out because I certainly didn't want to call my husband while I was sobbing and give him the wrong impression!

So when I was good and done, I called Zach and simply said, "It's a girl! And she's fine!"
"It's a girl!", he repeated.
"Yes....and so far, so good!"

So far....so good. There are still so many hurdles to pass in the next six and a half months that for now I rejoice! This new journey will pose an infinite amount of challenges, fears and anxieties. But it will also bring so much love, joy, laughter, and excitement. And as with everything, it's about taking it one day at a time. That's it, simple as pie.

Miles is gonna be a big brother!!!

Monday, July 18, 2011

Gotta Stay In Check


Preschool? Potty training? What's everyone talking about? I'm still hoping Miles will start walking in the next 6 months, those other things seem so far away for us. And they are. I mean, Miles will continue on his Early Intervention path for another year, unless the government cuts funding or Regional Center cuts us off. But if all stays the same, Miles will continue with PT and Infant Stimulation at home, and OT and Speech at a center. And we will continue to take him to daycare 2-3 times a week so he can play with typical kids and we can have a break from his lovely yelling. So when my friends start talking about preschool, I feel so lost. I mean, I'm not even totally sure what happens once he's 3 years old.

From what I gather, if we want to continue receiving any sort of government services, we have to stay in the public school system. But what does that mean for a 3 year old? Are there public pre-schools? Of course there are, not all parents can afford $12,000 in preschool tuition a year. But I don't know the first thing about that. Everyone around me is looking at private or church based preschools. I should take a meeting with our Regional Center coordinator to get some information, but I'm afraid of calling attention to us right now. Miles is receiving so many great therapies and I don't want to rock the boat, lest they decide to look at his file more closely and cut some of his therapy hours. (I've heard stories of it happening to other people, though we have a great coordinator who so far has really helped us out.)

Really, I need to do is my own research. Talk to other parents, use the Google machine and find out what is available to my child at all the different stages in his life. How else am I gonna be his best advocate if I don't even know what's available to him? But man, I am the worst at researching and calling people on the phone!! These are not my strengths people....but I will do it. I promise I will, for Miles. Because he deserves the best education possible and I will find it for him! I hope.

Oh yeah, and potty training? I can't even begin to contemplate that one. Miles has no problem hanging around with a soiled diaper all day, let alone a wet one. He is just beginning to discover his "winkie". Right now, our biggest hurdle is trying to get him to drink out of a sippy cup!! We are in a different place that our friends with typical kids. I knew this would happen, but sometimes it takes me for a loop. And honestly, that's okay. It keeps me in check. None of that stuff is really so important. Miles will walk and drink out of a glass and talk to us in sentences and wipe his own butt.....all in due time. What's important is that Miles is happy and healthy. That we are happy and healthy. And that we can look at these moments and situations and laugh rather than cry about them. This is where we're at. It's not where we thought we'd be and that's just fine by me.

I see you!

Monday, July 11, 2011

The Future

I don't like looking too far into the future because it usually scares me. I can see a few months ahead, maybe even a year, but beyond that, I start thinking about Miles and what he might or might not be doing. I get scared when I think about the challenges we'll face once he's in elementary school, middle school and high school. I remember how hard it was just to be a typical kid in school, I can't imagine what it's going to be like for Miles. And for me. How am I going to feel letting him go off into a world who doesn't love him as much as I do? I know I'll be happily surprised at times, there are some beautiful people out there. But the mean people can really scar us.

And what about after high school? Most people joke about how great it will be when their kids leave the house and go off to college. Or get a job and move out on their own. I want to envision those things for Miles and it is possible that he can achieve them. But I also have to think of the alternative; that he will be with us for the rest of his live. Honestly, for me it doesn't seem like a terrible thing to have my happy, loving son with me all the time. But what about for him? Will he want to live on his own and get married and do all those things other people get to do? Will he feel cheated in life? I hope not. But I don't know.

And what about later on? What happens when we get old? Who will take care of Miles if we can't? What if he gets early onset Alzheimer's and needs constant attention? You might not know this, but the incidence of Alzheimer's on people with Down syndrome is 3 to 5 times higher than that of the general population. And because people with Ds also exhibit signs of premature aging, they can start showing signs for Alzheimer's anywhere after 35 years of age. I saw my grandfather go through Alzheimer's and it's a slow and difficult disease.....the last thing I want to see my son go through!

Look, I get it, we all worry about our children, regardless of who they are. Maybe my worries are just a little different than most. I'm not worried about him becoming a drug addict or anorexic or a serial killer. I'm worried about him not having a full life. I'm worried about him being unhappy or excluded. I'm worried about his health. And I'm worried about how I'm going to deal with all these challenges emotionally. I'm worried about all the pain I will go through if I see my child suffering. Nobody wants to see their child suffer. So why think about the future and all the "what ifs"? Live in the present as much as possible! That's what I try to do. In fact, that's another one of the many gifts Miles has given me.

When I was in my twenties, I used to spend so much of my time living in the future. I'd freak myself out and have panic attacks just thinking about life after college. I wanted to tattoo my wrist with the words: Live Here Now, so I'd have that constant reminder. Somehow I got through my twenties without the tattoo. Besides yoga and meditation, I think diving into life with more courage than fear is what really helped! And every time I forget, Miles reminds to live in the moment. That's his M.O. and I love it!