It’s Not What I Thought it Would Be-It’s Better

This time last year I announced that our family would be adopting a child with Down syndrome.

I think back to that time and realize just how much I’ve learned since then. In preparation for such a huge transition, I did as much research as I could, connected with moms in the community, and became part of a few local and national groups. Becoming a parent of a child with special needs is daunting to be sure, especially if you have little experience being around individuals with special needs. So, I had no idea what to expect when we brought her home.

From what I remember of my years in school, anyone who was not typical was tucked away in a different part of the school. There was a family in my neighborhood growing up who had a son with Down syndrome. I was taught to feel pity for that family and for him because it was believed back then that he was a burden. I was, frankly, afraid of any interaction with him because of his differences. I do not think my experience was unique.

Fortunately, SO much has changed in the last forty years (although we still have a ways to go). Our girl started 4K this fall and she is rocking it! I am amazed and humbled by the staff at our school that makes every single effort to be sure she is included. I believe they go beyond what is required to help her reach her best potential. And while the kids in her class have noticed that she’s different, they want to play with her all the same. I can only hope that this will continue as she grows.

The learning curve for me has been steep and very little has gone the way I thought it would. So far, this is what I’ve learned:

I forget every single day that she has any special needs and I think it is because a disability does not define who you are. My daughter has Down syndrome, she isn’t a “downs kid.” I know it seems like a small thing, but it is really important to remember that every human being should be seen as just that: a human being. And, every person is so much more than their diagnosis. 

She is smart. She can read a situation and totally know what is going on. Even though English is not her first language she knows when when one brother is not being nice to another and if someone is upset. She remembers if I told her not to do something and will continue to try to test me days later. She keeps us on our toes because she knows WAY more than we give her credit for. 

Having a new child with Down syndrome has come with some family schedule challenges. We’ve had her heart, ears, and thyroid checked. She’s had OT, PT, Speech and Language evaluations and will have her vision checked this month. I’m thankful that nothing scary has come with these evaluations.  but balancing a schedule like this with other kids in the house is challenging. 

I want you to know that she is affectionate and happy but she isn’t always that way. It’s a misconception to think that “they are always happy.” Instead, I have noticed that she lives all of her emotions amplified. When she’s happy everyone knows, when she’s sad there are huge crocodile tears and when she’s mad there is no mistaking it. I actually love this about her. What if all of us didn’t hide our feelings and just showed them as they came. Maybe if we showed and acknowledged our feelings, we’d have less misunderstandings in this world.

NO ONE enjoys their dinner more than this girl.

I am not worried about the future. I know people wonder what we will do when she gets to be an adult but I’m not going to worry about that yet because she’s four. Smart phones didn’t exist when my oldest son was born so who knows what any of us will be doing by the time she’s twenty. Maybe she’ll live with us, maybe she’ll live nearby in assisted living, maybe she will live with one of her older brothers because they all adore her. 

She has fit beautifully into our family and I cannot imagine life without her. I’m thankful every day that I did not let her diagnosis get in the way of us bringing her home. 

Want to know more? It’s Down syndrome Awareness Month!

Start with the National Down Syndrome Society website for more information.

The Waisman Center Down Syndrome Clinic here in Madison is available to children who were born with Down syndrome.

This month the Madison Area Buddy Walk will raise awareness and money for the Madison chapter of the National Down Syndrome Society.

Gigi’s Playhouse here in Madison- is a place to explore as they have many opportunities to connect with other families here in town.

My favorite blog: Enjoying the Small Things by Kelle Hampton who has also written a book, Bloom: Finding Beauty in the Unexpected-A Memoir

An amazing book about adoption and having children with special needs: The Lucky Few , I also follow them on Instagram @macymakesmyday 

Favorite TV show: Born This Way

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