Sunday, October 6, 2013

A Family Portrait

I think that people have this idea that a child with Down syndrome is so different that he or she won't fit into the family.  The idea that the child will look so different, act so different, be so different that his family will be ashamed and burdened.

It's time you learn the truth.  Someone in the family is going to be the one that is different.  When I was born I took that role by default; I was the only girl.  I was spoiled, still am, my folks still are too generous to me or through me to my kids; that's how lucky and Blessed I am.  But don't think that doesn't come with a price.  We have family photograph after family photograph where the whole family matches, except me.  One year, they were all in red while I was in yellow with a bow taped to my bald head.  Yeah, when I was the baby I was different because I had no hair, and now I have the most.  But despite the differences, we have some similarities too.  I may be the odd one out for the most part, but I share the same eye color as my Dad and one brother, I share a love of reading with my mom and another brother.  And if you take a few minutes to look between us, you'll see my parents mixed between all three of us kids.  But that's how genetics work.

Fast forward a couple years and we get Madison who has dad's build and narrow face with Mom's eyes and light hair.  Then Sydney comes along with mom's round face and strawberry curls with her dad's big blue eyes.  And then we got Bradley.  Bradley with mom's hair and chubby cheeks, dad's eyes and I would argue his nose as well... The smile might be mine, but at times I see us both.  Stand Bradley's baby picture beside Sydney's and you'll ask if they're twins.  Watch him smile at Madison, see the same smile coming back at him from her.  Twinkling blue eyes full of mischief?  Yeah, both of those between him and Sydney.

But what about that behavior?  Yeah, about that.  One girl cries and maybe they don't all cry, but Bradley will comfort the crier and voice his distress if someone's in trouble.   Don't be yelling at his girls!  But there are other things than those that his sisters teach him (good and bad!).  Things that come through them each that isn't so much taught as inherently part of who they are and how they are connected as a family.

For example, when Madison was a baby she would hold my hair while she nursed, and even when she was eating solids and starting school - my hair was her comfort.  To this day, if she gets close enough, she'll reach for a lock, without even thinking about it.  But if she can't have mine, she's perfectly happy with holding her own.  Bradley holds my hair when he's tired and falling asleep, he sings to it, but he does the same thing as his sister.  And then we have Sydney and her blanket.  The blanket that just might get turned into a quilt top so that she never truly gives up her comfort item.  Bradley was also a blanket baby.  He didn't need to be rocked to sleep he just needed a blanket (any blanket would do).  Post surgery, his mother's inability to put him to bed wrapped in his blanket while keeping that button in his tummy...well that got him cut off from his blanket.  Poor kid.  Fast forward to his favorite blanket lost in the ER before transport to the hospital for his Christmas pneumonia and a sweet tech provided him a lighthouse quilt that he LOVES!   When he came home from the hospital, Sydney felt bad that he 'd lost his blanket, so she gave him her backup blanket. An exact duplicate of her favorite.  Bradley has taken to this blanket; in fact, he enjoys the corners against his hand or just as his sister did, against his nose.  He prefers the soft satiny feel of this blanket, just like his sister...but, he is still pretty happy with the lighthouses too.  So he's back to being a blanket baby.  No night time feeds right now, and if I can keep his weight up, he might not go back to them.  So for now, he grabs my hair like Madison, then I give him the blanket like Sydney, because he can't sleep with my hair but he can hold the blanket.  At least he is willing to compromise.

Make no mistake, life with Bradley is different than we had anticipated.  But, Bradley fits this family perfectly.  Yeah he has a lot of therapies and a lot of work to help him keep moving forward, but he's worth it.  Bradley has an extra chromosome, which is handy for us, we know about his little extra something and what we have to do to help him be as awesome as he is going to be.  There is nothing hidden here, the door for his progress opened early because of his chromosome.  We didn't have to prove anything more than that or fight to get him help.  We'll have plenty to fight for him later, but we have plenty of fights for the girls too!  We are parents and they are our kids and together we make a family of five with differences that give us our individuality and similarities that make us a family!

I see my kids, separate or together, and an extra chromosome is just a part of who we are and who our family is.  It's good here, it's happy here.  We are so Blessed!  :-).

Happy Day Six, happy Sunday!  31 for 21:  be aware, be accepting, and find yourself blessed!




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