The Other Mothers

“No one ever tells you that one of the greatest joys of motherhood is the other mothers.

I wish I could take credit for writing that, but I cannot. I saw it on a meme, and I will probably never be able to credit the original writer, because that’s how the internets work these days. I will try my best to echo this sentiment.

Yesterday, I had the privilege of speaking to a group of moms at a local preschool about how to teach their children about disabilities. I was thrilled when they asked me to lead this parent workshop, but as the days got closer, my anxiety grew. I love the presentations I have been doing with children. It’s gratifying in every way….their questions, their faces, their love for Sienna. It’s a connection that’s immediate. Kids are a wonderful audience.

I was ready to try something different, and what better way to make an impact than to talk to the soldiers at the front lines…..moms. They are the ones initiating dialogue and carving the path to kindness. Would moms of typically developing children want to hear our story and share that information at home? My insecurities nibbled in my ear. It’s easy to hide behind my keyboard and pour my heart out, but to do it in front of people? That was a new challenge, but in the end I decided that the message was worth my fear. That was a great decision.

Sharing Sienna’s birth and diagnosis story in front of strangers is the most vulnerable, raw thing I have ever done in a public setting. I have shared it with family, friends, and of course, all of you but through my carefully chosen, edited words.

My fears were unwarranted. As I looked around the room, I was met with empathy, tears, and overwhelming support. These moms took time out of their personal lives to willingly seek out information about how to approach the subject of disabilities with their kids. It’s not an easy topic to dive into with your kids. So many people fear that they will say the wrong thing, so they choose to say nothing at all. I firmly believe that this needs to change.

One out of every five Americans has a disability, so your child will meet someone different than them at some point in their life. We all have books in our children’s libraries about the ABCs, shapes, colors, potty training, becoming an older sibling, etc. Books open the door to meaningful dialogue. Add a children’s book about disabilities to their library. Better yet, add several. Introduce the topic to them first. You’ll be amazed at their ability to understand and empathize.  

I will have more blog posts coming up with exercises you can introduce at home to help your children understand. I will share the books recommended by my fellow rockin’ moms and myself below. 

If you are one of the other mothers, thank you. From the bottom of my heart, thank you for valuing kindness. Thank you for teaching your children about the distinction between empathy and pity, because it is an important one. Thank you for filling this mom’s heart with hope about the future.

Our Recommended Children’s Books: 

Meet Will and Jake, Best Buds Forever
Charlie’s Way, by Lindsay Robertson
You’re All Kinds of Wonderful by Nancy Tillman
What’s Inside Me is Inside You Too, My Chromosomes Make Me Unique by Deslie Quinby & Jeannie Visootsak (Our personal favorite book about Down syndrome)
47 Strings; Tessa’s Special Code
Faith has Freckles and Walter has Wheels. Bud did you know…..
Don’t Call Me Special, A First Look At Disability (my favorite all encompassing book) by Pat Thomas
My personal favorite book about Autism (plus it’s FREE): https://autism.sesamestreet.org/storybook/we-are-amazing/

 

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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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