The Road less Traveled; Things I Wish I’d Known About Having a Child with Down Syndrome

I remember my first World Down Syndrome Day like it was yesterday. I remember scrolling through my Facebook page wondering how all these families were so happy to have children with Down syndrome. I wasn’t there yet. I put on the silly socks. I faked my smile. I posted on social media. I went home and cried. I cried for the joy that I couldn’t find in this road less traveled. Today, is our third WDSD, and I want to tell the families out there that aren’t celebrating, that it’s okay. These are the things I wish I had known.

I wish I had realized that the doctor who delivered your diagnosis did not understand the beauty of raising a child with Down syndrome. I wish I wouldn’t have let the harshness of his words affect me in such a profound way. I wish I had known that the picture he was painting was with his brush, not ours. Where he saw different, I see wonderment. Where he saw delays, I see triumphs. Where he saw pain, I see love. Where he saw hardship, I see fulfillment. When he saw only your diagnosis and not the person you are, I saw a need for change.

I wish I had realized that sometimes a happy ending isn’t the way you pictured it, but that doesn’t mean you can’t find inspiration in what’s different. Sometimes the happy ending is even better than the one you dreamt up in your head. Sometimes the storms in our lives make us better people, and they give us an appreciation for all the things that other people take for granted. That kind of perspective is a rare gift.

Before you arrived, our life was chaotic and fast. You have forced us to slow down, and appreciate the beauty that comes from the road less traveled. I will never forget the pain I felt when you were born, but overcoming that hardship and celebrating the person you are, has added color to our world and fulfillment to our souls. The proverbial fork in the road doesn’t always have two choices. Sometimes, you build your own path.

I wish I had realized the meaning you would add to my life. Advocating for you has been one of our greatest blessings. Teaching others about how wonderful our lives are with you in it, fulfills me in a way I never imagined possible, in a way only other mothers on this journey can understand. I didn’t know that I would feel more at home in this community than I ever have. The friendships, the compassion, and understanding that live in this world are gifts that I treasure.

The girls and me teaching a first grade class about Down syndrome
Our friends at this year’s Buddy Walk

 

 

 

 

 

 

 

 

 

 

Your presence in your sister’s life is a blessing, not a curse. I wish I had known that having you as her sibling would make her even more kind and empathetic. I wish I had known that she would gravitate towards protecting you, all on her own, without me pushing. I wish I would have realized that sharing the spotlight with you would make her happy, not resentful. I wish I had been given a crystal ball saw that I could picture the smiles, the laughter, and the love that exists between the two of you. I wish I had realized that adults that have siblings with Down syndrome are grateful.

I wish I had realized the battles that still need to be fought for you and your peers. Before you arrived, I thought that every child in this country was provided with the therapies and assistance they needed to thrive. I didn’t realize that families had to fight for services, education, and assistance. I didn’t realize that adults with Down syndrome were lobbying for their rights. You have opened my eyes to the work that needs to be done to help others.

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We Walk the Line

There is a line that exists, and all mothers of children with special needs walk it. It is not my favorite part of this journey. Advocacy versus inclusion. It’s a push and pull, an ever going battle in my mind. It’s the uncertainty that is parenthood. We never know if we are doing the right thing, but we forge ahead.

The push is the piece that wills me to discuss advocacy, to prove to society that Sienna has worth and that Down syndrome has a place in this world. I want people to know that Down syndrome is nothing like I thought. It’s a gift, a blessing, it’s Sienna.

Then, there’s the pull, constantly telling me to treat her the same as her typically developing peers. Place no limitations on her, and treat her as you would treat any other child. If you baby her, she will not succeed. If you draw attention to her diagnosis, you are doing her a disservice.

So, which is it?

When you write a blog and post as often as I do on social media, one thing is certain. Opinions are abundant.

“If you want Sienna to be treated like everyone else, why do you constantly draw attention to Down syndrome?”

“You don’t have to defend her, you know. She’s just a baby.”

“Don’t you think advocacy has taken over your life? Is that really what’s best for Sienna? For Haley? For your marriage?”

These are actual quotes from people in my life whom I love. They all want what’s best for me, for my family, and my children. If they question it, do you know how many times a day I question it? Constantly.

I am in the midst of a WDSD school tour teaching children about Down syndrome, carting Sienna along with me to show children that God creates beauty in all of us, that we all have unique talents and challenges. I am drawing attention to her.

The reality is this. Down syndrome is here to stay. I am not ashamed of it. Yes, it is a big part of our lives. I have a tattoo on my arm that signifies how proud I am of my daughter and our family, so obviously, I am in it for life. Sienna’s diagnosis is written on her face, and it will be for the rest of her life. Sometimes, I am relieved that her face reveals her challenges. I see mothers with children on the spectrum. How do they explain that their child is not misbehaving, without pointing out their diagnosis? It’s a constant battle.

Motherhood is insecurity at all times. You make decisions on behalf of these tiny, incapable, humans. You hope that you are doing the right thing, but you don’t get to see the future. If you screw up, their happiness and place in this world are at risk, and all of that lands on you. It’s pressure. It’s stress. It’s hardship. It’s also beauty, fulfillment, and reward. All of these feelings coexist in my world, at this moment in time.

The truth is, I have no idea if I am doing the right thing. Does anyone? Aren’t we all just faking it? All I know is that it feels right. It feels right to visit schools and share Sienna. It feels right to use my voice to tell society how much color Sienna brings to our world. It feels right to talk about Down syndrome and her challenges, because they are my challenges too. I might change my mind some day. I reserve that right. For now, this is where we are.

If you don’t use your voice to tell your story, will anyone ever hear it? Will anyone ever learn from it? Your story is who you are, and our story is Down syndrome. Our story is girl power. Our story is miscarriages and infertility. Our story is heartbreak, adventure, and redemption. Thank you for reading about this life we got. You make this mom feel like she is doing something worthwhile.

 

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Pregnancy and Newborn Amnesia

My husband and I made a proclamation prior to having our second daughter that this was it for us. We went through so much with our miscarriage journey, and we wanted to put that behind us. After all, kids are expensive and time consuming, AND also rewarding and amazing. I agreed with my husband. I still agree, I think.

Is any woman ever really ready to make that final commitment? I know pregnancy is painful, tiring, and body altering, AND life changing, beautiful, and empowering.

The butterflies in my belly, the baby flips while doing yoga, the feelings that came with growing a life inside of me…..who wants to say goodbye to that? Then, there’s the baby stage….the sweet smells, the endless snuggling, and the bond that comes with nursing. I look at pictures of my sweet girls as newborns and all I want to do is go back in time.

And for us, there’s more to consider. I worry that not giving Haley a typical sibling will put too much pressure on her as she grows up. Will she feel obligated to stay closer to home? Will she make decisions for her family instead of herself? Will we hold her back?

Now, logically, I am aware that this is not a reason to have another child. I also have learned that there are no guarantees. Pregnancy does not always end with a baby. Labor and delivery do not always end with a ‘typical’ baby. After all, you get what you get and you don’t get upset.

I go back and forth about this all the time. Our plan before Sienna was two kids, and we should stick to that plan. Then, I see a pregnant mom or a newborn and my oxytocin memories come flooding back, and I forget all that. I call it pregnancy and newborn amnesia.

Here’s the thing though. Why do we not remember how draining that stage of life can be? How quickly I forget the fact that Sienna didn’t sleep more than 3 hours at a time until she was 11 months old. I was so sleep deprived that I thought I might have a brain tumor. I forget how hard it is being dictated by a baby’s feeding schedule, their helpless cries, and their sleeping (or not sleeping) demands.

We are finally starting to get some freedom. Haley and Sienna can play together now. I can leave them alone for a few minutes and not worry. We are getting out of the house more. My husband and I are dating again. I can have a glass of wine (or four) and not worry about having to breastfeed or pump. My kitchen and living room feel bigger without the swing, the pack n play, and the exersaucer.

I’d be lying if I said I didn’t daydream about those tender moments. Childhood goes way too fast, so for now, I’m going to cling to every stage and enjoy the ride. Each stage brings a new challenge, but so many new rewards. Motherhood is the hardest job out there, but it’s also the most gratifying.

I may not have those newborn snuggles anymore, but they’ve been replaced with hilarious banter between sisters, dance parties to music I never thought I’d tolerate, and nights spent going over homework. I also get 7-8 hours of sleep a night, and I love every second of it.

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