What I Forgot When Focusing on My Child With Down Syndrome Reaching Her Milestones


My daughter Adele is 22 months old and a fiery, spicy little girl.

Recently, Adele has really found herself. She is coming into her own. She is figuring out who she is, what works for her and how she fits in with our family. This is all within the past couple of months. Before this, I was focusing on the delays (although I claimed I was just taking it day by day) and how we could get Adele caught up, get her to where she needs to be. What I’ve recently realized is she is where she needs to be.

Up until this point, I’ve focused so much of my attention on Down syndrome and all it entails, that I’ve forgotten she is just a little girl.

unnamed-1

She is content. She is still not crawling and she is not ready to start running around the house, but she is one verbal kid. She is able to express herself, sign what she needs and uses lots of “words” with her sister. She is not frustrated, nor are we. She is energetic and full of spirit, life and joy.

In these past two months, I’ve seen Adele transition from a baby to a little girl. Brinley and Adele play together, wrestle together and laugh together. They are playmates and I can see a beautiful friendship and bond forming between the two girls. I didn’t see this before because I was so focused on what we needed to get done, where we needed to be and how we would get there.

I’ve read the saying “I Am Not Down Syndrome” many times over and to be honest, it kind of bothered me. I didn’t think it was something we needed to shout from the rooftops. Why would we, as parents, put our child on display and tell others Down syndrome does not define them?

But alas, some of us need the reminder and it’s obvious I needed it. I think sometimes we shout all of these things to others, start up Facebook pages and write blogs because it’s us who feel the insecurities. I believe often we fear the diagnosis and feel if we yell at the world enough times it will make us feel better and more secure and comfortable with Down syndrome.

When we join the Facebook groups, we brag, ask questions and reassure others our world is how it should be, a beautiful and wonderful journey. We put on a happy face for others and tell them we are OK and everything is how it should be. Yet, behind closed doors, we cry and confide in our partner that we are scared.

As a specials needs parent, I am not looking to be put on a pedestal or given a hug each time you see me, but I want you to know it’s sometimes really hard. It’s sometimes overwhelming and you can fear the worst.

I don’t always need to be the strong parent, the one who shouts from the rooftops that I have it all together, that I am confident with all of my decisions and I feel OK when I think about Adele’s future.

I am not always sure.

I am not always OK with the diagnosis.

I am not always the best advocate for our children.

But I am trying and I feel blessed to be surrounded by an amazing group of moms who are going through a similar journey.

As I move forward, as Adele gets bigger and stronger and smarter, I am learning to face the day with love and patience. I am learning to accept things as they are and to allow my children to be who they need to be. I am confident Adele will be OK, but I also have moments where the worry takes over and I feel almost breathless and unable to cope with the thoughts about the future. It’s such a whirlwind of emotions, with amazing and beautiful moments combined with fear and worry.

This journey is about working together and supporting one another. We will celebrate together and offer words of encouragement and support along the way, but we will also cry on each other’s shoulders and share our fears and worries. I don’t want these moments to fly by. I don’t want my days to be focused on when we will hit our next milestone. I want to love the time I have with my two girls and feel reassured that this was the journey was given to me.

We will climb this mountain and when we reach the top, I’m going to sit down with the biggest rum and coke and celebrate. We’ve got this… most of the time.

It will all be OK.

A version of this post originally appeared on A Perfect Extra Chromosome

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

TOPICS
JOIN THE CONVERSATION

Related to Down Syndrome

She Thought Her Sick Dad Had to Miss Her Wedding. She Thought Wrong.

It looked like Andre Pearson was going to have to watch his daughter get married on a computer screen from halfway across the country. The 61-year-old from Omaha, Nebraska, had been at the Mayo Clinic in Rochester, Minnesota, since March due to heart and kidney failure, the clinic reported in a press release. Too sick [...]

The 5 Stages of Reactions to Babies With Developmental Delays and Their Milestones

It’s no secret how a child grows. Everyone knows the sequence of development, give or take a few months, and people get excited about the achievement of each new ability. Parents track milestones in baby books. Strangers in the grocery store ask, “How old?” following up with related questions about the age-appropriate milestone. Even kids want to know [...]

The Blood Test Sent a Shiver Down My Spine, but This Made Me Smile

I had to have blood drawn today. By all accounts, it was a routine blood draw, due six weeks after the most recent change in my daily dosage of the medication that substitutes for my cancerous thyroid that was removed more than seven years ago. But because I’m also due to see my endocrinologist next week [...]

When a Woman on the Pier Compared Me to a Movie Character

While it’s lovely to see so many diseases gaining awareness in the movies and television lately, there’s a downside to all this attention for the people who actually have serious illnesses. Fans of these movies and TV shows appear to be glamorizing this lifestyle, yearning for an existence they truly know nothing about. You’ll see [...]