I feel like I have talked about Down syndrome A LOT in the last week, but the topics are out there right now... in my comment section, in blogland, on message boards, and so, I am addressing them. Why? Because this is my blog and I CAN! haha Actually because these are great topics with great points of view on both sides of the coin. As always, for those of you reading this, whether you have a child with special needs or not, feel free to chime in here. I would love to hear your thoughts.
Yesterday, Lisa talked about her son with Down syndrome and how she doesn't understand how parents would say that they wouldn't take Down syndrome away from their child if they had the opportunity. Her son, Finnian, is 8 months old. She's just starting out on this journey.
I remember, not long after Kennedy was born, I found a website that listed the physical characteristics of people with Down syndrome. Unlike the previous medically based sites though, this site was obviously written by a parent... one who had been on this Down syndrome journey much longer than I. The thing that stuck out to me was, in the list of characteristics it said, "beautiful almond shaped eyes". This made me cry. Hard. As a new mom with a child with Down syndrome, as a new mom who was terrified by this diagnosis, I couldn't understand how anyone would think ANY characteristic related to this syndrome was beautiful. I didn't get it.
Wendy replied to Lisa's post and said that she wouldn't change Kira. She also pointed out that she wished people would stop telling her she will eventually look at her daughter and not SEE Down syndrome. That she won't THINK Down syndrome every time she sees Kira. Right now she does. But she's ok with that. Chrystal made the point of how much easier her daughter's life would be without Down syndrome and all the challenges it entails. She said she tries not to think about the future for her little one... things like "School. Bad touches. Stranger Danger. Real friendships. Moving around as a military family..."
I think, when a child is born with Special Needs, any special need, most parents instantly fear for the future. Will they be able to take care of themselves? Drive? Live on their own? Become parents? Be teased in school? Will they be able to keep up with their peers? Will they be liked? Accepted? But really, these are things I think about with ALL my children. I know plenty of "adults" who can't take care of themselves. I have friends who have chosen NOT to get married, or become parents (and that's TOTALLY OK!). I know plenty of kids, typical kids, who are/were teased in school, I know plenty of kids who struggle to keep up with their peers... socially, physically, and academically. I worry about all my kids with issues like stranger danger, bad touches, real friendships, and yes even moving around as a Military family. Matthew 6:34 tells us not to worry about anything for tomorrow will worry about itself. Easier said than done, I know! I've been there. I AM there. Our human nature worries.
So now, I'm going to talk about Kennedy. We've been on this journey called Down syndrome a little longer than the families I mentioned above. This does not mean anything really, except that I've been living in the world of therapy, doctors, developmental delays, and worry a little longer than they have. I have had more time for Down syndrome to soak into every fiber of my being. So here's my take on Down syndrome, and more importantly, on my daughter.
Kennedy is amazing. She is strong willed. She is a fighter. She has endured more with a smile than I ever could. She is not afraid to tell you exactly what she thinks about things (even if we can't always understand her). She works HARD for every milestone she achieves. Yesterday, for the first time, she walked up the steps on our porch. She didn't hold my hand and she didn't put her hands to the ground to steady herself. There was no railing to hang on to. There are only 3 steps, and she took it slowly. When she got to the top she turned around, got a HUGE smile on her face and said, "MOMMY! I DID IT!" With tears in my eyes, I replied, "Yes, baby. You did it." She's almost 5. And while most parents would say "big deal", I know that it IS a BIG deal. It's HUGE, because she worked so hard for so long to be able to walk up those steps without assistance. Is it FAIR that she had to work so hard to do something that comes so easily to other kids at a much younger age? Nope. Not fair. But every milestone with Kennedy, no matter how delayed, has been a cause for celebration. Not one has been taken for granted. Every day with her is a gift.
Kennedy is 4 1/2. She walks and she talks and she goes to a typical pre-k where the other kids tower over her in height, but they love her. When she shows up to class they run to give her hugs and when she leaves, it's more hugs goodbye. And they rejoice in her accomplishments too. When I picked Kennedy up yesterday, one little girl came up to me and excitedly told me, "Kennedy kicked the ball with me on the playground and she did REALLY good!" They focus on what Kennedy CAN do, instead of what she can't. And slowly, I'm learning to do the same. Kennedy has a whole family full of her biggest fans; cheerleaders who keep her going, keep encouraging her, and the times when we get worn out, she turns around and encourages us. Kennedy has taught me how to love deeper than I had ever imagined. She's opened my eyes to worlds that I never realized existed. The world of Down syndrome, the world of childhood cancer, the world outside the United States where kids with special needs are treated horribly and basically thrown away at age 5...
SO if some scientist came up with a magic pill and said, "If you give this pill to your child, it would take away Down syndrome! It would take away the developmental delays! It would take away all your child's struggles and hardships!" Would you give it to your child? Would you?
Would I take Down syndrome away, if I could? At this point in my journey, I can honestly say no. Because Kennedy is Kennedy... Down syndrome and all. God wanted her to have that extra chromosome. I may never know why this side of Heaven, but it may have been just to teach our family some of His lessons. Will things in life be harder for her than for other kids her age? Yes. But we will be there, step by step to love her, guide her, help her (when she lets us) and cheer her on. That extra chromosome doesn't define her, but it's part of who she is; and to me, she is perfect. And I will spend the rest of my life making sure she believes that. I mean, really, just look at those beautiful almond shaped eyes.