Thursday, October 30, 2008

Genetics Follow Up

I am good at going to all of Justin's appointments. I even went the the first pre-op day of testing all by myself. But I have not been looking forward to this appointment. It's where it all began. The other parents with whom I have spoken remember day or the way that they found out about their child having Down syndrome. And I remember that too, very distinctly, but I remember this day too because it was the day that really wasn't supposed to be anything. We didn't tell any family because we didn't want to worry them for nothing, and in my mind, this was just one of the things that we had to check off our list. This was a nothing. If ever I wanted anyone to laugh at me, this was the day. I wanted the doctor to say that I was just a crazy over protective mother.

We took EVERYTHING with us to the appointment. We had the stroller, the baby carrier, 2 diaper bags, toys for Travis, and snacks for Travis. We hauled so much stuff in with us they probably thought we were moving in! And the side of the hospital that has the genetics clinic overlooks the new hospital they are building and at that time, it was not even a complete hole yet. Travis loved looking at all the equipment; it's his favorite to this day; and I prayed that we would never have any reason to see that building beyond that day as it was being constructed. The geneticist we saw is so wonderful. He is so personable and helpful and willing to listen. After his exam he said that he could see what we saw, and for the first time he actually pointed out the traits that Justin has that are Down's markers, but he also said that these things exist in the general population, so it's not definitive without a genetic test. He said that it could go either way. So we had the tests. There were actually two, one for Down specifically, and one was for some other genetic anomalies that he also considered to be possibilities. So we had to get blood drawn. I sat with Travis as he ate his snack as the nurses debated how much blood they could take from Justin given his weight. And then we were sent off to wait. At that point they said 50/50 he has Down syndrome. When we left there were some fish tanks that blew bubbles from the bottom and plastic fish floated in the bubbles. Travis didn't want to leave, and I said that we would come and see them another time. I wanted to take those words back as soon as I said them. I didn't want to go back EVER! But we were back, 2 weeks later, to hear about our son's diagnosis and to understand at least a little, what it meant for us.

So today, we were back where it all began. The hospital is coming along nicely (our room during Justin's surgery was actually facing the construction site, so Travis was able to watch the trucks whenever he visited) and the fish are still bobbing along, and we are a bit further down the road that God has put us on. We don't understand much more about what this all means, but we are more confident that God will carry us through. We figured out that the appointment today was more for us than for Justin. The doctor said that he felt like he kept dashing our hopes because first he said that he didn't know about the DS and then it was, and then that he didn't hear a heart murmur, and then it was and that it needed surgery. I think today was to end on a high note, and to ensure that we are doing the things that need doing to care for Justin. He just watches out to make sure that we know what's coming and what to consider for his future care. We have our appointment at the DS Clinic on Monday and he said that they kind of overlap purposes, so we don't have to see him anymore, which he is sad about, because Justin is so cute! Yeah, we know!

I know this is a bit random. Thoughts have been floating through my head about this for a while as I recalled that day and I just can't explain my feelings. Maybe they will become clearer as the years pass. Right now it's still raw. I just know that I love my baby and I love the one who sent him to us. I think that's enough for now.

1 comment:

Unknown said...

amen my friend! Love that baby love the maker!