Happy First Birthday

One year ago my planned course in life took a detour.  I wasn’t expecting this change in course, but life has a way of reminding us that we don’t know what the future holds.

Today is my youngest child’s first birthday. He was a little peanut when he was born—6 lbs, 4 oz. Now he’s a whopping 21 lbs. And he’s been pretty healthy, other than a bout of RSV and pneumonia. Neither illness lasted long or resulted in hospitalization.

He wakes up in the morning by cooing and chatting in his crib, brining an instant smile to my face. When he sees me, his brother, or his dad he gives us his ear-to-ear smile. It’s a smile that radiates happiness to everyone around him.

He loves to look into my eyes and study my face. Sometimes it seems like he is looking into my soul.

He loves to chew on Sophie the Giraffe. (An excellent toy, even if it is over-priced and ridiculously trendy.) And he loves to play with his elephant busy ball popper and superstar sing-along stage.

He loves to eat spinach-mango-pear puree and yogurt. Like his brother, he seems to enjoy Sunday morning pancakes.

He loves to swing and go for bouncy rides.

He’s learning and absorbing so much his first year of life. But I’ve learned more.

I’ve learned that the timing of developmental milestones matters more to me than to him. He isn’t crawling yet. His hypotonia makes it more difficult. He works hard on building his core strength and gives it his all in physical therapy. He keeps trying. He doesn’t give up. I don’t think he looks around and thinks “I can’t crawl yet, but that other one-year old can walk.” I do, however. But if he’s happy and doing his best, then why should it matter to me. I know he will do those things too. In his time.  So I’ve learned to enjoy each moment. I don’t spend time so much time concentrating on the big picture that I lose sight of the little details that make it complete.

I’ve learned Down syndrome isn’t something to be scared of. The past twenty years have been full of research in ways to help children with DS. Early Intervention starts in infancy. Sure, there are lots of appointments for physical therapy, speech therapy, and occupational therapy, but it advances a child’s development. Every day I read about people with DS who do more than thought possible: owning a restaurant, acting, writing, and drawing.

Unfortunately, I’ve learned that words can hurt more than I thought. Using the word “retard” as a punch line demeans my son, and thousands of others with disabilities. Making fun of people’s appearance, particularly those with Down syndrome is like a punch to my stomach. It hurts. That being said, I have learned I’m also much tougher than I thought. Words can hurt, but nothing will stop me from protecting my son and advocating for him and others.

I’ve learned that I have wonderful friends and family. (OK, so I knew my family was pretty cool and my friends too, but I didn’t know how great.) The first few weeks were tough for me. I didn’t know what having Down syndrome meant for my child, or for me. I just needed someone to listen to me. I just needed people to congratulate me on the birth of my child and not treat us any differently. And every one of my friends and family did just that. Thank you.

But most important, I’ve learned that my education has just begun. I look forward to what he will teach me and what we will learn together.

I’ve learned to look forward to our future.

Happy First Birthday To My Little Buddy!

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9 thoughts on “Happy First Birthday

  1. Aww, Happy Birthday to your little guy! My son will be one on Sept 8th and he is also 21 lbs. Not walking yet, but I’m secretly glad because once they start WHOA! life changes!! Anyway, great blog, and the thing is, whether your child has DS or not, each child is different and so very special. 😀

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  2. His smile encourages me as well. I can’t help but remember back to that day. We’ve all come a long way since then and I can’t imagine life without our little Lukey. Even if I am the mom, I have to say this. You and Steve are two of the most remarkable people I know.
    Love you both.

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  3. Well….after reading that what can one say?…not much. I have often heard that being in the family of a special needs child is quite often a blessing, as the youngster becomes the tie that pulls a family closer. I know when I look at Lucas, I watch him, almost studying him, as he is a wonderful teacher. Thursday (with your permission) your blog entry will be at the heart of my Professional Deveopment with my teaching staff as we learn together about the real meaning of education. It’s time we talk. You don’t need to teach kids…your skill is teaching teachers. I’ve got a plan. People to put you in touch with etc.
    love
    —your brother

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