I have found so many, many sources covering topics related to Down syndrome to be skewed. Many address topics of difficulty along with corresponding solutions, while others scream “Hey, everyone! Look at us! Our family is perfect and normal even with a child who has Down syndrome. No problems over here — whatsoever.”
And, they are both wrong. Because raising a child with Down syndrome is both of these things at once.
Growing up I had (and still have) a cousin who was (is) severely handicapped. I remember when he and I were around eight I became insanely curious about him. He was not potty trained, had very little muscle tone and could hardly move on his own, and was non-verbal.
He would lie on my Grandma’s fluffy white living room carpet and watch all of us kids running around and respond by grunting and screaming. I am only assuming this was his way of interacting with us.
Looking back, I wish I had the courage to ask about him. I wanted to know what was going on with him and how we could possibly include him, but I was scared. No one ever talked about Brett’s condition, so I thought it was rude to ask.
We all just tiptoed around him, pretending he wasn’t there like a huge, yet incredibly tiny, elephant in the room.
After a couple-few decades of life, I have learned that it is impossible to love someone without first understanding them. I regret not interacting with Brett and learning to understand him. I wonder if our understanding of each other would have resulted in love, enriching both of our lives.
And now, as a special-needs mom, I want more for Daniel. I don’t want people to shy away from him. I want him (and others like him) to be loved, so I over-share.
I share the things that are hard and frustrating so they are familiar and not-so shocking. But, I also share the things that are impossibly incredibly, beautiful, wonderful, and only ours — because we are a special-needs family.
I share too much (sometimes to the dismay of my family and myself), not because I like to, but because I feel it is important to paint an accurate picture.
I share so that special-needs children (like Daniel) will be understood, and in turn loved.
A few years ago, as I scrolled through Facebook I found myself stopping on an article written by a mom who had just learned her baby would be born with Down syndrome. She reached out to parents asking what to expect.
I remember doing this same exact thing after learning Daniel’s diagnosis. Through Google I found BabyCenter Community’s Down syndrome group, and thus began my BabyCenter obsession. I asked dozens of questions. I wanted to know about NICU stays, therapies, potty training (I was a bit premature with that), and having babies after having a child with Down syndrome. The list was endless.
Hopefully sharing some of our lives will put another family at ease after a difficult diagnosis. While some days I hate Down syndrome, most days are painfully normal. Being the mother of a child with Down syndrome can be summed up in about five words: rewarding, challenging, time consuming, humbling, and AWESOME.
Here is some of what it’s really like to raise a child with Down syndrome:
I was born into this crazy world, just like everybody.
I have a mom and a dad who love me more than ANYTHING in the whole world.
I like to take selfies with Mom and nap with Dad.
And pretend to nap with Dad.
I had a first time at the pool, a first haircut, and a first love.
I go to school and have LOTS of friends.
I can do chores…
And pick out my own Christmas presents.
And while I may not say much and get feisty at times, I can still understand and learn, and, perhaps most importantly — can love and be loved.
Photos by Whitney Barthel, check out some of my other posts related to Down syndrome here.
This post was originally published October 24, 2014.
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