Tuesday, March 22, 2011

Yesterday

Yesterday was World Down Syndrome Day. Celebrated on March 21st to resemble 3 copies of the 21st chromosome.

I have been off the computer lately in order to accomplish the many to-do's around here. One of them is to organize pictures in iPhoto and get back-up discs made. Then I organize the disks into their own books. I love being organized; when I have the time.

Well, as you know, one organizing/cleaning job just leads to another and I found myself in the spare room organizing the boys' "memory boxes". Evan and Nolan have old diaper boxes and Calvin finally (8 months later) has his own paper ream box (or whatever you call it). Calvin's is the largest.

I find myself getting teary eyed thinking about this.

When I first learned Calvin has Down syndrome I thought about photos. I didn't think, or maybe I didn't want, pictures of him taken when he was born. I don't quite understand it completely because that was such a "before". "Now" is so different.

The day I came home from St Paul when Calvin's heart defect was diagnosed and the label of Down syndrome was dropped in my lap I called my friend Amanda. Grandma Jo Jo and Grandpa Wayne had the older boys because A) Joe was in California on a business trip - yes, he was not with me that day and B) my Grandpa Sykora's visitation was that night. So, I felt alone and very worn out and deeply hurt and scared. Amanda works for Birth to Three Early Intervention, so I wanted to let her know. Anyways, to try and make a long story short, I confided in Amanda some of my fears. What was behind those fears was this complete lack of knowledge. I literally thought that my child would not have pictures or picture books because "who will look at them?"

I imagine my boys growing old and having children and someone somewhere down the line picking up the photo-books and looking at "grandpa" or "dad". Calvin will most likely not be a dad, or a grandpa. But that hurts a lot less today. The day before he turns 8 months old.

Other things hurt a lot less as well. I can now have a doctor tell me "people with Down syndrome have ears that do not work the way we would like" and it does not feel like a personal sucker punch. I no longer have to leave quickly to get some privacy so I can cry.

I can now read about Down syndrome and not literally get sick to my stomach and feel like I have emotional whiplash for the next few days. I can look at pictures and not cry about the features my child has that resemble Down syndrome. I can hope for a long life for Calvin where I was once fearful of a too-soon-funeral.

There is much more to World Down Syndrome Day. There is the topic I have not addressed here yet: language. Language when referring to someone with a disability: it is Down syndrome, not Down's syndrome, it is "Calvin has Down syndrome" not "Calvin is a Down syndrome child". "Retarded". We'll talk about all this another time. For now, I want to say that the world has nothing to fear except fear itself. We are so afraid to be hurt, yet the joy Calvin brings surpasses any pain I have ever felt.

Thank you for all your support and all your love. Because of that, the world is a better place.

6 comments:

  1. You are soooo right about the fear. I remember those first few days after we learned of Calvin's diagnosis - my stomach hurt so bad. But Doop was right - it is not really a big deal. Man I love Sweet Baby Calvin with all my heart!!

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  2. I teared up reading your post. Even though I thought I wasn't someone with a bunch of stereotypes or bothered by disability b/c of my long history with it, those first few pictures that we took of Abby pained me. All I could see was the differences in her pictures from the newborn ones of her sister Maddie. It makes me wish I could go back and talk to that new mom- and help her help herself through it. To not focus on the fear and look for the differences. I guess we all have to find our own way. And the fact that there is guild over how I felt then- just shows how far I've come now I think.

    Hugs to you-

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  3. I love your pictures, I love seeing your boys and seeing what beautiful surroundings they are growing up around...so lucky!
    That Calvin simply melts my heart...he is simply perfect...and we know you already knew that:)
    take care!
    Kristin

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  4. I had such fun holding Calvin, while our other boys played. He has such a sweet and gentle spirit and a smile that will melt hearts. He is a joy already. God has a plan for him just like he has a plan for your other boys I love that God is bigger than all of the other stuff in life and he has a plan for every life and loves everyone of us no matter what our imperfections are. You are doing a great job dealing with all that has come into your life over these last months!

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  5. Your initial feelings were real, and truly, what we all went through. I remember not wanting to send out a birth announcement. I did it, and it was hard at the time. Looking back, I am glad I did it. Your blog was beautiful and made me tear up because it reminded me of my feelings too. Remember, you are never alone. Love to you...celebrate Calvin because he is and will continue to be amazing!!!!!! Thanks for all your comments and support too..:)

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  6. Great post, Lissa. It makes me look inside myself to seek the person having a child w/ Down syndrome would help me become, because I see the person Cal has helped you become. He has brought out your true potential in so many ways. I admire you so much for what a great mommy you are to your boys!

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