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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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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