Wednesday, November 25, 2009

Roller Coaster...

Every morning I still wake thinking that the “no bubble” ultra sound happened…I lie in my bed thinking today is the day I wake up from this dream…I think that this is the day that Maddox will be “normal” with no health concerns…this is a TRUE life roller coaster I cannot seem to get off of…some days I feel good about Maddox…I feel I can be her mom…that down syndrome is the least interesting thing about her…and that is true some days we are rockstars! I seem to go in highs and then I check myself back to reality…yesterday Mrs. K Maddox’s OT said that she was doing AWESOME!! That she thinks she will be sitting up sooner then later…like in the next couple of weeks…that her trunk control is strong…I video tape there sessions so I can work with Maddie throughout the week … she picked up small blocks and took them out of a bowl…she is amazing…but really would I be that amazed if I had not labeled her…would I be amazed that she may be sitting up sooner then later…I cannot seem to let down my guard in fear that something will happen…that we will get another diagnosis that I do not want…this holiday season brings up memories that are unwelcome in my mind …I suppose it is time I rewrite this holiday season…

2 comments:

  1. I know how you are feeling. Down syndrome will be in our lives for ever. We are good moms and we want the best for our kids. It's natural to be worried for everything. But I always think that it is true my son is high risk for a lot health problems, but I focus in the words "it may be". There is also a change that he won't get them. I send you a big hug from my leaving room. Happy Thanksgiving!

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  2. Kimberly, you remind me a lot of myself. That first year or so of "life with Gabriel" was very difficult for me. Accepting that Gabriel has Down syndrome has become easier as I've gained more experience.

    I'm not saying that I don't have days when I feel hopeless -- this has more to do with society than it does with Gabriel having Ds -- but those days are few are far between and the feelings of despair are not as deep as they once were.

    I agree with you that you need to rewrite this holiday season -- and you will. You'll have no choice as your beautiful Maddox "becomes". Honestly, our children are not static -- they flourish so much that the idea of them having Down syndrome fades away and becomes one small part of who they are...Sounds cliched, but I see it in our lives. And many other families out there, too.

    Also, I wanted to say that your feelings are JUSTIFIED. I didn't allow myself to feel those darker feelings "out loud" and it still pisses me off this day, that I felt pressured by some people in our lives that I was doing alright when I wasn't. I really wasn't doing okay for about three years. Grief is a hard thing to deal with sometimes.

    Anyway, I hope I haven't overstepped my bounds -- but your post touched my heart. You're not alone. I just want you to know that.

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