Lisa's last post struck a chord. And then I read Wendy's response.
I know how I feel, and I'm sure about it, but then I feel bad. Guilty, really. What is it that's not allowing me to let this go? I mean, I completely understand it from the mamas earlier in their journey. Just thinking about the first year brings back a whirlwind of emotions. But I'm supposed to be in that happy place now, right?
Crap.
Like Lisa, I've heard over and over and over again from other parents that they wouldn't take away Ds from their child if that were even possible. I've always responded with an incredulous "Really?!"
Because I would.
If I could.
I know it's a pipe dream and it's not something I focus on or pray for or really even think will ever happen. Ever. But I do visualize sometimes. I wonder what Playette would be like without Ds. In my mind, she's still the wonderful, fun, beautiful little girl we've come to know and love, but she walks. And talks. And her tongue doesn't protrude. And we have no therapy. And...well, she does the same things her typically developing peers do and she's so "normal" that she doesn't warrant a second glance for anything more that simply being a cute toddler.
People wouldn't ask how old she is and then get a confused look on their face after being told the whole truth.
And maybe I would tell them her age in months (even though I said I never would when I was childless) instead of years. I know saying "1" is a lie simply because I'm omitting the details that they're really after. I'm knowingly letting them think that she's closer to 12 months than 24 so that I don't have to deal with what comes next.
There would be no IFSPs.
There would be no trying to educate my family, friends, and co-workers about all things "special needs" and then opening myself up to ridicule and possible alienation.
I know there are good things that have come from being ushered into the Ds community. There are all of you that are a part of that community with me. The people that read about my life just as I read about yours on a regular basis.
There's an openness and a freedom that I didn't have before.
I probably wouldn't be so friendly with Arthur, the 30-something year old man who works for Hope Services at both my job and Playette's daycare. I seek him out. Ask him about his day. His life. And I really care about the response.
I'm real enough with myself not to think that I would have just up and decided one day to change my ways if not for Playette's diagnosis being a factor.
Yes, the blinders have been removed.
I notice instead of pretending that I don't.
But, I swear.
Today.
If I didn't have to think about Playette's peers climbing around playgrounds and building the muscles in their chubby little legs that they've been walking on for a year or more already? I wouldn't.
I realize that time does heal though. Last year this time, I would have broke into tears or at least had some sort of anxious moment when Playette's daycare director made such a big deal about her taking 12 steps 3 times today in front of another family whose son is almost exactly her age. (Back then, I was all about no one knowing that didn't need to know. I've never addressed her diagnosis with them, but if they haven't caught on in the last year +, then I'm 100% shocked, especially since the dad is a doctor.)
I read the other day about another of Playette's peers who has mastered jumping with two feet and I was all, "Wow," and then, "I've heard jumping is going to be difficult for my kid."
Jumping.
And we're not even getting into the future. I have done myself the favor of not thinking about that too much. (So, yeah, I do think about it a little.) School. Bad touches. Stranger Danger. Real friendships. The effects of constantly moving around as a military family...
So maybe tomorrow/next month/next year I won't feel this way.
Who knows.
And if you've made it this far and still wonder why I teared up tonight, and feel like being a little mushy yourself, check out the lyrics.
Because I would.
If I could.
Posts
19 comments:
I found you're blog from Wendy I think? I dunno.
Anyways, things will get easier as your girl (who is STUNNING by the way) get easier as she gets older. My daughter is now 4 1/2, and while I have days still where all I think about is DS, those days are getting fewer and farther between. I see my daughter for exactly who she is, and I love her for who she is. I'm not necessarily sure if I would take away the DS if I could (I always hate those thought-provoking questions), I think I would change society's perception of our kids first. If only everyone could see the awesome-ness that I do. THAT would be my wish.
Chrystal,
This post left me in tears. I hope Lacia is right and I look forward to the days when we don't worry so much about the future.
Your daughter is beautiful. I love your honesty and I love that we are all so different. We have one thing that ties us together- a child with DS. Our differences make it possible to help each other along. One thing that I try not to do is look too far into the future. That will kick your butt. You have to plan for the future but you can't dwell on it- you can't stay there. I can only deal with the immediate future- my daughter doesn't walk, she doesn't talk. She goes to preschool 4 days a week and does private speech and private PT each once a week. She was in the NICU for 7 weeks and had surgery for duodenal atresia on day 2. I can't focus on all of the things that she can't do or won't do. I have to keep my eyes on the next step- the next goal- and celebrate all of the small accomplishments along the way. On the other hand- it is extremely difficult to see other kids- that are at least 12 months younger than Lila- doing all of the things she can't. It's okay to notice those things and be sad for a little while. But I can't stay there. I will miss out on the beauty of things that are good that happen everyday. Just my thoughts. Hugs to you!
Chrystal. I would too.
Things do get easier as they get older. I do still have days when we are at the park and I notice other children around E that act uncomfortable about them playing with them, or look as if they are watching ghost, but E is so unaware of these moments.
The struggle for us, the biggest struggle, is communication. If I could change one thing about it, I wouldn't take away the Ds, because I don't know how we could separate that without taking away from who she is, but oh what I would give to have a talker.
Don't beat yourself up about these feelings now, but don't be surprised when the times that you do are much less.
hugs....
Beautiful, honest post. Thank you for writing it. I think, for me, it's just about "ok, here we are." I try not to think too much into the future.
It's just that changing the Ds still wouldn't guarantee anything about the future. It wouldn't guarantee that she'd go to college, get married, have kids, live to a ripe old age - it would probably make those things easier, but still not guaranteed.
Thinking about what might have been wastes so much energy - and Lord knows we moms have precious little of that to waste!
Sigh....ok. You got me. I'm crying. This song! This post!
Some days.
Chrystal, I don't have anything to add, except to say I'm right there with you. I am truly grateful for your beautiful honesty. ((hugs))
Chrystal, I loved your post and your honesty and I think others will too. I hope you didn't think I was judging you in my post, that wasn't my intention at all. There was a time, when Kennedy was younger, that I just may have taken that pill, if it were available. I think that God, in His infinite wisdom has not allowed a "cure" for Ds to be found. It's something else we may never understand this side of Heaven. Ds is such an interesting journey. There is good and bad to it. There are easy times and hard times. I know you're not the one who said this, I think it was Wendy, but NOW I am able to look at Kennedy and not automatically see, think, hear Down syndrome. It was a wonderful thing for me when I got to that point... where I could see Kennedy, my daughter, BEFORE the Ds. I'm not sure if that is something you struggle with, but if so, your time will come (even though Wendy said she hates hearing that, it will! :))
I have to say, if someone walked up to me right now and said they had a pill to take Kameron's Autism and Sensory Issues away, I would jump all over it. Seriously. Does that make me crazy? I'd change one kid but not the other? I don't know! Maybe!
Anyway, I think Malea is so precious and I think you're doing a fabulous job with her! Your posts show how much you love her and I don't think anyone will doubt that... if they do, you just send them to talk to me! :)
I agree with you Chrystal.I posted about it on my blog .I haven't mailed your book out yet.I'll try and get to the post office tomorrow.Blessings.
you know I'm totally a fan of yours - and I love that little girl of yours, too!!
I would never think you're whiny. I think you're honest.
Tghings do get easier (my daughter is 14 years old, but I would still change the DS if I could. I wrote a post about this about a years ago:
http://beneaththewings.blogspot.com/2008/03/i-wouldnt-change-her-if-i-could.html
I'm glad you shared your feelings and honesty. - I like what Lacia said changing society's perception would be a good wish.
Chrystal, I wanted to share this scripture with you. I hope you don't mind.
Matthew 6:27, "Who of you by worrying can add a single hour to his life?"
I thoroughly agree with you. It does not make us worse mommies!! :)
This is a great post. That Central education is really showing. I can't profess to know what you are feeling but you know I am always there with you.
Nothing to add, just hugs. You are a good mommy. The best Malea could ever have.
omg!i luv that song! I thank you for your honesty. you are brave enough to say what so many people are thinking!
I've always had a difficult time with this particular question. It's never been so simple for me to say a definitive "yes" or "no." I know there are some who are so steadfast in their absolute "no" answer that I feel guilty for even thinking "yes" sometimes. And yes, there are days where I do think, if I could I would. I hate to see Kayla struggle with things - fine motor, speech, abstract concepts etc. I hate knowing how hard things are going to be for her in the future. There are just a lot of things...of course I wouldn't want things to be so difficult for my daughter. And on the other side I feel if I think that way do people think I'm not accepting my daughter as she is? Of course not! No parent wants to see their child struggle though. I also wonder how different she would be w/out the extra chromosome - how much would her personality change. But since you can't go back and see what could have been I try not to think about it too much. I have my good days and bad days...I agree with a lot of what you wrote too.
Post a Comment