Tuesday, October 12, 2010

The BIG Down Syndrome Awareness Post for October

It's Down Syndrome Awareness Month in October. Little known fact. I have many bloggy friends who have dutifully devoted themselves to blogging every single day about Down Syndrome in the month of October. Please scroll down to the Blog List and check a few out. As for me, well, I confess that there is so much on my mind other than Down Syndrome this month (say, a new little family member who is getting ready to burst onto the scene). But, I did not want the month to slip by without a Down Syndrome post.

Charlie. One day old.

What shall I say about Down Syndrome. You know, we did not know Charlie had Down Syndrome until we had already enjoyed him for 2 months. Those two months had stress of their own: a difficult birth recovery (after a very easy birth, go figure), a difficult start to our breastfeeding journey (it is hard to learn, and more so when your baby doesn't seem too concerned with the fact that he should eat from time to time), a bunch of hearing specialist appointments (in which I was asked to nurse him to sleep for testing--yeah, no pressure there!), learning Charlie was hearing impaired, Ray returning to work the same week in which Charlie was born. It was a sweet time for us, but also a whirlwind of activity and stress, so you can imagine how my jaw hit the floor at our 8 week check-up when the doctor said to me he thought we should test Charlie for Down Syndrome. Oh boy. That was quite a day.

That is where we started out on this journey, and I have such a tender spot in my heart for new parents just hearing the news. Hearing the news, reading the books, and wondering what life is going to be like. Wondering what life would have been like.

Baby C and Mommy.

I'm not going to revisit every place along the path that we have been so far. There have been highs where I just felt like my heart would burst. There have also been lows where I really have struggled to just be okay with Down Syndrome and the ways it can complicate life.

Presently Down Syndrome and I are at place of peace. Charlie's sweet, round face that smiles so big at me in the morning. His low little voice greeting me with "Kim-ma!" as he wraps his chubby arms around my leg. I love this boy.

Daddy and Charlie playing some music together.

There are challenges to parenting Charlie, like attachment (on my part, not his. I think he feels good with things.). Charlie is a cuddly boy (the best cuddles ever!), but he certainly does not seek attachment like Calvin does--you know, in a typical way. He does not compete for attention with his brother, which may be part of the problem, and something I am still adjusting to after Calvin's birth. Also, Charlie does not call me Mommy, he calls me "Kim-ma", which is fine and sweet, but sometimes makes me feel more distant to him. So, I work on attachment and bonding deliberately with him now, and it is good... at least for me. I make sure to sit by him more often, be the one to hold his hand when we are out and about, have patience with him when he is having a sensitive day, spend one-on-one time with him whenever possible, remind him to call me "mama". These deliberate actions have helped me to feel more connected to him, which in turn helps me to enjoy him more for who he is. Quirks and all.

Other challenges are simply his slow development, which means we are giving him a higher level of care for longer, and that can be a very physical job when accounting for his size and hypotonia (at 40 pounds we still need to change his diapers, dress him, lift him into his car seat, help him up and down stairs, etc.). It is also difficult to communicate at times, though within our household we do pretty good getting our points across, however that is accomplished, both us and him. We worry about him running off, and have to be VERY diligent to make sure he does not wander away.

Big C and Little C. An awesome big brother.

I've spent a great deal of time lately studying sensory issues in hopes to understand some of Charlie's quirks--like why he chews on everything. He is driven to chew, and we have a multitude of "chewies" about the house for him to satisfy his need without ruining toys or blistering his hands. He just needs that oral stimulation--he also loves crunchy and spicy foods for the same reason. He gets overwhelmed by certain noises, and some days are better than others with this, but often Calvin will have to put off playing with certain noisy instruments until times Charlie is away.

Then, there are parts to raising Charlie that have caused many permanent smile lines to form on our faces. You should see Charlie dance! Yesterday he put on his groove in front of the entire church, pulling some amazing, gymnastic dance moves to the song "Great Big God." Charlie tells a pretty mean knock-knock joke, which most often ends in an impressive dragon roar. I wish everyone had the chance to enjoy his imagination as he involves you in one of his games. You may not understand just what is going on because of the language barrier, but you know it must be fantastic, and you feel so special to have been included.

Posing with Grandpa after the 2009 Buddy Walk.

Charlie is a tender boy, so gentle and giving to those who are smaller than he. If you want your baby looked after and doted on, call on Charlie to sit with her. He will offer toys and soft pats and kisses.

Our life is so amazing with our boys. I love to watch Charlie and Calvin pal around in the yard at dusk, wondering at times who is who. Charlie is generous to his brother, and will share a toy when first asked. He loves to climb into Calvin's crib in the morning to share a game or a cuddle (or a tackle... ahem). They have dance parties together, and put on imaginative music shows using various props as their guitars, banjo's, basses, and drums. Charlie will often tell me he is playing "bass guitar." Truth be told, he excels most at keeping a steady rhythm, and I am excited to see him bud as a percussionist in time. He is developing an on-key singing voice as well. My favorite song to hear him sing is "Happy Birthday" as he performs it with such abandon.

My boy is getting so big!

With mommy and daddy he can be very stubborn, but we are learning he understands so much, and if you look at him with a stern face and sign "obey" he will get that you mean business. We have learned that he is capable of understanding discipline (a new development), and we are able to hold him accountable for his actions in ways we never were really able to get across to him before this summer and fall. Not only does he understand his actions and consequences, he also understands forgiveness. He seeks and gives forgiveness with an ease that I only wish I had (and wish Calvin had too! Sheesh.). He has become very good at his evening clean-up job of putting all the vehicles in their "garage" (the bottom toy shelf). He is working on memorizing some Bible verses, and will recite portions of them, but has not yet mastered the entire verse alone. He loves to draw with us, and pretends to write words, spelling them out loud as he scribbles.

All of these things are part of our family life. Ray and I look at each other sometimes and think, "Can you believe we have a boy with Down Syndrome?" I mean, we are under-the-radar kind of people to whom significant things don't seem to happen. It is just kind of wild, and shocking, and wonderful all at once. And, gosh, it is a challenging journey we are on, and I think it is fine to be at the mountain top and in the valley at different places along the way. Point is, we love our boy so deeply, no matter whether Down Syndrome is stumping us or blessing us at the moment (though we count our trials as blessings, to be honest... or at least we try).

Brothers!

So, there is some Awareness for you. Don't forget to check out what others have written this month to bring Awareness to Down Syndrome. And also, check out the Reece's Rainbow blog and organization, and considering sponsoring one of the beautiful children during their upcoming "Christmas Angel Tree Project".

1 comment:

Laurie said...

As always, thanks for making me more aware!

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