Wednesday, July 28, 2010

The Waiting Game

Wow, I just don't know where to start. You are all amazing. Thank you for every comment on the blog, Facebook message, e-mail, and phone call. Thank you for every word of encouragement and support. Thank you. Life sucks right now, but I know that it will get easier. I know that we just have to take one day at a time. But I cannot tell you how much every little bit of support means to me.

So here's the latest news on Roo. We were supposed to have results from his last round of blood work early last week… then by last Friday… then by Monday… and today, we finally got the call. We got the results, but not a lot of answers. First of all, he definitely has Down syndrome, that much has been confirmed.

As for chromosome 15, it is definitely… different. I don't want to go into too much detail, primarily because I am completely non-medically-knowledgeable and don't want to say anything wrong. But basically, it looks like a piece of that chromosome is bigger than it should be. At this point there are three possibilities: 1-it could be perfectly normal, just a variance that can happen from person to person; 2-it could be extra genetic material, but in a segment of the chromosome that doesn't contain any active genes (in other words, no big deal); 3-it could be extra genetic material in a segment of the chromosome that DOES contain active genes that are associated with growth and development (in other words, a problem).

The good news is, there are 2 "big" conditions associated with chromosome 15, and he does NOT have either of those. This is a huge relief to me, because I have actually lost sleep worrying about those. If there is a problem, it is likely either a developmental delay and/or a gene that is associated with autism. If it is that "autism gene", it still does not necessarily mean that he will be autistic, but only that he will be more susceptible to it.

The bad news is, we have to have more blood drawn, and it will take another 3-4 weeks to get the results. It also has to be pre-authorized by our insurance, so it will probably be at least a week before we can even get the blood drawn.

So now we wait until we get the blood taken… and then we wait some more.

I can't say it feels good to wait, but I can say that I am learning a lesson. For the past several weeks, ever since Roo's initial diagnosis, I have been waiting for it to be done. Not "done" as in, it's all a bad dream and it's not true—that, of course, would be lovely, but it's not what I mean. I've been waiting for a final diagnosis, for someone to say, "Here is what is wrong, and here is what we need to do about it, and now you can move on and live your life." Here's the lesson: It's not gonna happen. The Down's has been confirmed, yes, but it is far from done. Even once we know what is happening with chromosome 15, it is far from done. We don't—and won't for a few years yet—know how the Down's will affect his cognitive ability. He has been diagnosed with a heart condition that is going to require follow-up and care over the next several years. If the problem with his tear duct persists, he may need a procedure done on his eye. And more things will pop up throughout his life.

It won't be done. And you know what? That's just life. But it will be OK. We will be OK. Roo will be OK. We will take it all one day at a time, one hit at a time, one happiness at a time. Because there will be happiness, too. (There is happiness, even now, truth be told.)

So… I guess we're not really waiting. We're just living. There will be good days and bad days—Monday was obviously a bad day, today was overall a good one, in spite of the frustrating call from the doctor's office. I have no idea what tomorrow will be. But I don't have to worry about tomorrow. Do you know why? Because "tomorrow will worry about itself. Each day has enough trouble of its own." (Matthew 6:34)


Penny said...

Continue to seek the positive and enjoy your family. You are an inspiration to me and I pray that the Lord will continue to guide and bless you!
Your friend, Penny

Tracy W said...

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
Jeremiah 29:11
I was looking up verses tonight and this one stood out. I thought I would share it with you.
You are an amazingly stong woman, I am proud to call you friend. :)
I am so glad you are sharing this with us through this blog.

Jennifer Godale said...

Katie, my prayer this morning is for you and your family is that you can have those moments of happiness (and of pain and anger, too) and experience them without guilt. You are often in my thoughts and prayers.