Monday, November 15, 2010

scared option

When I was pregnant with Maddie and we knew she was going to be born with an extra chromosome…I searched and scoured the internet in regards to the amino synthesis being a false positive…I searched if there was different types of Down Syndrome…and if people that were born with Down Syndrome had different degrees of Down Syndrome…now I see that I was scared, pissed and very lonely…and did not understand a thing about Down Syndrome...this was before I found blogs and the network of friends on facebook…in my searching I just wanted Maddie only slightly to be born with Down Syndrome…I know this sounds silly…but when I first saw her I said she did not look like she was born with Down Syndrome…and I secretly loved it…I thought maybe she just did not “get it”…that something happened and the amino was wrong…then Maddie started doing things in the NICU and the nurses would say that it is good she is pissed and not happy about being poked….that it meant Maddie was a “higher” level of Down Syndrome…then we got her home and she was relatively healthy and she was on mark and on track with milestones for a short time…and again I thought she is so “high functioning”…then around 6 months I started noticing a lot of subtle delays…and more Down Syndrome features…again this scared me and I began to withdraw…and that is when I began staying at home a lot…I used the excuse I did not want Maddie to get sick…or I did not want people touching her and compromising her…so when Maddie turned about 1 year of age…I began to resent people that referred to Maddie as “high functioning”,  or that she seems to only have Down Syndrome a little…that is funny because Maddie has an extra chromosome and there is no getting around it…she is neither high functioning  or low functioning…she is simply Maddie…so the other day I read about the developmental chart for Down Syndrome…I have been having a hard time lately anyway…because of the little guy that is 6 months old that I take care of…he is showing me just how much Maddie is delayed…just how much Maddie is behind the “norm”…so again I am scared…I feel like there is a 2 ton weight of “I do not know what I am doing” on me…I cannot believe where some of her milestones are expected…independently walking down stairs holding a rail alternating feet…6 years old…I cannot wrap around the fact that I have Maddie…that she really was born with Down Syndrome and what that really means to me…Max has began asking why Maddie does not do some of the things that some of our baby friends do…and I do not know what to say…I just say --she will…Maddie will get there- we just have to help her…then my mind wonders…and again I am facing the huge responsibly that I have before me…being Maddie’s mom is not just loving her and being her cheerleader…because that is a given…but it is making sure she gets the best teachers, therapists, doctors and community…and holding myself accountable for her learning what ever it is she needs to be successful…it just seems really scary to me…when failure is just simply not an option…

5 comments:

  1. Right now I am thinking the things that you thought before. I keep saying, "He doesn't LOOK like he has it a lot. He only has a FEW characteristics of Down syndrome. That must mean he doesn't have it "bad"!"

    Also, my husband's cousin had a baby a week or two before j was born. Neither of us want to go to Thanksgiving this year because we don't want to be around a baby the same age as j and see all the things that j should be doing that he isn't...even though he's still young...there are things he isn't doing. One of which is smiling...I don't know for sure of the other things, but I kind of don't want to know. So I don't know how you deal with watching a baby and seeing that Maddie is delaying. You're stronger than I am, for sure.

    I'm thinking about you!

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  2. I really hate the "high functioning/low functioning" term...I feel like it makes our kids sound like they are some sort of machine or something instead of (like you said) that they are simply themselves. We don't go around labeling other people as "high or low functioning" (although I know some people that I would definately catergorize as low-functioning and they don't have Ds!) so why do we do that to our kiddos?? Grates me everytime I hear it...although I know it is pretty much a standard way of talking about people with Ds.

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  3. I've had a few play dates lately with kids a couple of months younger than Sutter and it has been a big eye opener for me. I know Sutter is doing great, but when I see a 7 month old doing the same things it knocks me down a bit. I also still get a little overwhelmed every now and then that I'm actually the mother of a child with Down syndrome....it wasn't part of my "plan" and it never even occurred to me that I would have a child that had special needs.

    Like you said failure is NOT an option...we will make sure our babies get the best possible chances in life because they deserve it! Maddie is Maddie and she is perfect just the way she is. :)

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  4. Oh man, can I ever relate to this!! For months after Russell was born I swore they had made a mistake...that he didnt have Ds and one day we would get a phone call saying how they screwed up our results and really he didnt have it...sigh...Needless to say I was in denial for a while, it just never sunk in all the way that I had a child with special needs...Hell it still hasnt sunk in all the way!
    I have to admit I have trouble looking at the babies in my family or my friends babies who were born around the time Russell was. It still stings my heart a tiny bit to hear all the things they are doing now, that I know Russell wont be doing for months yet!
    But I have to stop myself from thinking those things and realize Russell is doing great for Russell and thats all that matters :)
    Great post!

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  5. Hi! I saw your blog on Sarah's (class of 2008). You are definitely right, we can't put them in catergories of high/low functioning.. Don't let all of those predictions of milestones scare you. They are waaay off. My daughter just turned 5 a few days ago and has been RUNNING up and down stairs without a railing for a couple of years now. Just as any other child, they will hit their milestones when they're ready. Don't stress- you're on the right path. Get her every resource available.. Love her, be her cheerleader and tell her how beautiful she is every. single. day. She will do great!

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