Some days when I look at sweet little Miss Hailey, I feel like I have the devil on one shoulder and an angel on the other. You know...like they portray a person talking with their conscious on cartoons. When I look at Hailey playing or when we are doing therapy, I don't "see" the same future I imagined the day we found out she has Down syndrome. I don't look at her and think she is going to live with my husband and I forever. I don't look at her and think she won't attend college if she wants to or that she won't be employable or she won't be able to communicate with us and the rest of the world. That and much worse are the thoughts that ran through my mind those first 48 hours after her diagnosis. When I truly see my baby girl, I see a little girl who is curious, active, chatty (wow...she fits in good in this family!), happy, loving, determined and incredibly strong and even loves her mom's singing (or at least tolerates it!). I truly believe there is no limit to what she can accomplish in her life. I don't place limits on my dreams for the boys....is it right for me to place limits on Hailey's? Yes, there are even times that I have a thought or two pop up that she might get married.
Yes, some would say that I'm living in the land of rainbows and unicorns. That I need to look at statistics and the world around me. I'm going to be honest....I can't. I have to do anything that I can to help Hailey achieve goals and dreams (yes, hers..not mine). I wouldn't look at the boys and say, "Oh, we aren't working on your spelling words because you are never going to write." That is absurd. Why would I put limits on Hailey?
Is it denial? I don't think so. I am firmly planted in reality. I know how hard some things are for Hailey already. I've never seen a baby sooooo close to crawling, working so hard but just not "getting" it yet. I've read the books. I know we have so many challenges and I know we have no way of knowing what the future holds for Hailey, nor do I know what the future holds for the boys. Who knows what medical advances will be uncovered that might help Hailey achieve more (I don't want to change her but I would consider help with cognition and preventing Alzheimer's.) Who knows what her determination will push her to accomplish!
Regardless of what she does or does not accomplish and no matter what the future holds....Hailey is a person who we love very much and she has carved herself quite the niche in our family (and our hearts).
I'm off to snuggle with my little girl and enjoy the quiet of our crazy house!
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| Waiting for Ian's Christmas program to start |
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| In matching pjs...that not so long ago belonged to Brayden and Ian :-( |
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| I'm beginning to think the eyes closed is a family trait....see Brayden below! |
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| She gets so excited with her brothers. |
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| Happy L??? I'm messing with the tree and nativity display! |
The sky's the limit!! The funny thing is, I'm at the stage now where I'd *love* for my sweet girl to live with me forever, but I know *that's* not realistic, and I'm certainly not going to hold her back. Alzheimer's is my biggest worry for her (I have it maternally on both sides of my family), and I'm heartened by the research that's currently being done, hoping answers are brought to fruition soon.
ReplyDeleteLove the pics!! Btw, she may grow out of the blinking at the camera flash - Sammi used to do that *all* the time as a baby, but not anymore.
I don't think you're unrealistic at all. I just watched Monica and David last night for the first time and realized that, even though I liked it, parts of it were sad because their families didn't really want them to do so many things. Things that I thought they'd be capable of doing and that they'd love. And it made me realize that providing opportunities and expectations is probably an enormous part of the battle. And like Megan said today about little Ellie, when they're 25 it won't matter if they crawled at 10 months or 18 months. And that's so true. Our girls have already accomplished so much. I like that we (as mamas) have one another to help keep the devils off our shoulders.
ReplyDeleteI LOVE reading your posts - you're right - none of us know what the future holds for our children. WHen Bret was a baby he had 2 open-heart surgeries - there was a time we were hoping just for life - we didn't know what limitations he'd have physically or socially. With the skilled hands of the surgeon & the great minds of his doctors/nurses he has grown into a young man with no physical limitations - he plays water polo for goodness sake!! BUt we still don't know what's ahead for him (or Meredith) - we do know we've loved & supported them every step of the way, we've read them, taken them to plays, had them in Scouts, took them to church, travelled the world, etc... all in hopes of them exploring this world we live in. You are on the right track with each of your children by loving them, supporting them & being their biggest cheer-leaders!!! There are no guarantees that hard times aren't ahead for any of us but we are promised love & comfort so keep on doing what you're doing & let God walk with you in the good times & the bad ---
ReplyDeleteMerry Christmas Arthur Family!!
She is BEAUTIFUL!
ReplyDeleteIf you don't impose limits on her, then her future is limitless. I thought when my son Casey was diagnosed with autism that there were so many things he wouldn't be able to do. He proves us wrong over and over and over again.
Now our daughter, Abby (Ds)is doing the same thing.
I think you are firmly planted in reality. I believe that the success is using your natural talents to best of your ability. I expect Ben to work hard and not waste his abilities, whatever they may be!
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