Last night I went to Hunter's Boy Scout meeting because he was receiving a few awards. There were about 30-40 boys there and all of there families. I was pretty surprised to look in the row behind me and see a boy with Down syndrome, and then to look 2 rows behind me and see a girl with Down syndrome. So out of 30-40 families, 3 of us had a child with Down syndrome and were all sitting together. I could not keep my eyes forward ( I did watch Hunter of course but wow that was a long meeting...) and of course in my mind I am comparing Ella to these other two children. Both of these children were older than Ella, the boy (I asked) was 5 and the girl appeared to be about 8.
I don't know why I insist on driving myself crazy. My mind instantly goes into this mode. I try to imagine Ella at their age and it always crushes me a little. When I imagine Hunter as a 10 year old boy, I can, it's easy to make that leap. Then I think about Ella at 10 and I get images in my head. I imagine all her little behavior issues/quirks being done. I imagine her talking and everyone can understand her. I imagine her with a best friend. I imagine her being socially appropriate, being quiet when she is supposed to, not running away from me. I imagine us going out on Mommy/Daughter "dates" shopping, dinner and a movie. I guess my image is of Ella being pretty "typical." And then I see a child with Down syndrome at approximately that age and my heart breaks a little.
I seriously need to just get over it. I mean really. Had I stopped and thought about Ella being 4 when she was a newborn and known that she would just really be starting to talk, that she would still wear a diaper, that she would (God help me) still take a pacifier, that she would be the size of a 2 year old, that she would have pretty much no danger perception, that she would still NEED naps, that she would be a "runner", that I wouldn't be able to reason with her, that she would be so naughty some times I cry and question my parenting ability, that she would be wearing glasses.......you get the point......I would be devastated.
I really need to just live in the moment, take each day for what it is. TODAY I know that my 4 year old is awesome she IS starting to talk, she can poop in the potty and is well on her way to being potty trained, she is a tiny spitfire, she is fiercely independent, she takes naps and I get a break sometimes, she is social, she is smart, she has friends both with Down syndrome and without, she is so incredibly amazing sometimes that I think I must be doing something right, she wears glasses but is such a responsible big girl about it, she goes to school and totally keeps up with her "typical peers", she has a great sense of humor and says and does things to get a laugh, she can behave (she can sit through a totally boring 2 hour Boy scout award meeting), she can count objects, she can say her ABC's (and you can mostly understand what she is saying,) she can sing songs that come on the radio........again you get the point......today I KNOW Ella is amazing.
I guess I thought that by the time Ella was 4 I would be over it. Down syndrome. It wouldn't effect me so much. I would totally accept it and be happy about it. The truth is that I really do have my head wrapped around it most of the time. And truthfully I love everything about Ella, everything that makes her who she is, including Down syndrome. But the truth also is the future scares the crap out of me sometimes, and sometimes I am terrified and overwhelmed. And I hate that. The future of my son, Hunter, does not scare me, sure it makes me sad to know how fast it all has and is going by, but I am not frightened by his future. I feel guilty.
Things I need to remember.... Live in the moment. Stop comparing, every person is an individual and everyone is different. Enjoy today. Try not to worry so damn much, it won't change things. Ella's future will be great. Hunter's future will be great. And therefore my future will be great.
And I Wish I Could Read Even More!!
3 years ago
18 comments:
I get these same feelings when I let myself think too far into the future, I am trying not to do that but sometimes I can't help it. Ella is amazing, when I watch your videos I dream about my Emily being able to do the things that she can do. You are doing a great job!
I do this too. Can't help it.
So far, with both my kids, all my fears have been trumped by the reality of the people they are. like, I freak out about what might happen, based on other kids, but these are my kids and they're just awesome.
But yeah, I'd love to be able to take Abby on a date like that.
okay, don't know why my comment posted twice. sorry!
I do that too. It's hard not to.
Totally understand where you are coming from. The comparison things kills me every time. UNLESS (and this is SOO terrible!) I can find a kid close to Chase's age with Ds to compare him to...someone who has more issues than Chase does...and then I feel all better :)
Oh Kacey, we all do this and it always makes me feel better to know I am not the only one doing it. Thanks for sharing your thoughts...it is hard and amazing all at the same time! I love reading about Ella because she sounds so much like BRee,,,,,if only we lived closer to get them together!
Thanks for this post, Kacey! It really hit home (for me too)! I always tell myself to get over it and stop worrying......after all, IT WILL NOT CHANGE ANYTHING!! The bottom line is that our children ARE AMAZING!! And we must remember to take our kiddos lead.....they are teaching us to take things slow and enjoy the small stuff.....and so we MUST!!
Our kiddos lives will be as AMAZING as we let them=)
Wow, I feel like I could have written that post myself, Kacey. Thank you for that. You said it all perfectly, and echoed what probably ALL of us have felt or thought at some time (some more often than others, LOL).
Its hard not to worry and its hard not to compare as well, I guess we've gotten over comparing our kids with typically developing one but it's hard not to with other children with DS. But you have nothing to worry, Ella is doing so great. I will be so happy if my Saira can do all the things Ella is doing. She is a beautiful young child so full of life and we should be thankful for just that. I remind myself of that very often as well.
I think this stuff creeps up on us. Times like this meeting you went to are not events where we think we'll be challenged emotionally like this. And yet it seems to pop up and hit us over the head.
And we're in the boat with you. It often seems some people are SO adjusted that they never get ruffled, but I don't know that it's true. I am actually finding that I'm having more frustration now than I have in the previous years. Mostly because Braska's not a baby anymore. It seemed easier when she was just cute and smiley somehow.
Loved this one. Just yesterday Nate was asking me what we are going to do with Claire when she can't be in e-cap any more. Pre school or back to special ed next year and I don't like ether option. I try to imagine what she will be like in a year and get so flustered. Is she going to be able to be in Kindergarten? I don't know! Probably not, and I don't want to throw her into the deep end but I also don't want to underestimate her. We'll just have to wait and see and I with I could be more at peace with that conclusion.
ditto!!!!!
Other than the size difference....i would say she sounds pretty typical of a girl! Shaylin still needs naps (but doesnt take them), wears a pull up at night,Shay doesnt like reasoning, and she more than often makes me double think my parenting skills!!! Dont worry she is doing amazing...and so are you! Glad to hear about Hunters awards...and that she sat through it all! Love you guys!
Its a natural thing to do and people that say they don't do it LIE!! Everyone does it and don't feel bad for it. We just want the best for our kids.
Thank you for this post...THIS was exactly what I needed to read today because I am struggling with these very feelings and fears about the future. It is just nice to know I am not alone :)
My husband and I have started thinking about special needs adoption and have noticed how rare it is to find stories of adult people with Ds. Maybe because 20-30 years ago Ds just wasn't as "mainstream", so those kids didn't grow up with the same opportunities? If you find some parents with adult children or teens maybe it would help you have a better perspective. I love this blog http://sarahely8989.blogspot.com/. She is a really great adult with Ds who writes about her life. Have you read it?
Thanks for posting this. I struggle with these thoughts too and have to keep reminding myself to take things day by day. But I still worry about what will happen when Kaetlyn's 10, 15, 25, 50... Today, she's just my baby. And she's darned cute to boot! :) But it does help to know other Moms have the same worries and fears. Thank you!! :)
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