Wear Your Damn Mask

My phone rings. I immediately run to check caller ID. It’s spam again. Frustrated, I put it down and dive right back into the land of Polly Pockets. 

“Where were we?” I say. 

“Mommy, you look disappointed again. What’s wrong?

That’s the thing about living in quarantine with your neurotypical seven year-old since March. Nothing gets by her. She can tell just by looking at me how tense I am.

“Nothing Haley baby. I’m just waiting on an important call.”

“About Sienna’s test?” she asks inquisitively.

Just then, the phone rings and my caller ID shows our pediatrician. I answer. 

“Hi Mrs. Striner. We have your test results. All of you tested negative for the antibodies.”

Haley looks up at me in anticipation. I have to hide the fear enveloping me. I smile at her. 

“Okay. Thank you for letting us know.”

I tell Haley I have to go to the bathroom. The tears and emotions take over. I know I shouldn’t be taking it this hard. Haley’s 3 year-old sister with Down syndrome, Sienna, didn’t have it. She didn’t have the coronavirus. I was so sure she had. I hadn’t thought about how scared I’d be knowing the virus that sent her onto an ambulance that fateful night in February was just another virus. 

“Mommy, are you coming out? I found more furniture to fit inside the arcade and Polly’s house. Let’s play.”

This is life in quarantine. I don’t get to wallow. I have to pull it together. If she sees my fear, she’ll be scared too. I splash water on my face and emerge from the bathroom ready to play some more. 

Later while the three of us are outside, Sienna approaches me and lifts her arms towards me. I pick her up and we sit together. I squeeze her little body against my skin. I smell her sweet hair. I rub her back. I live in this moment knowing she’s safe. The tears fill my eyes and instinctually the flashbacks of that night come crashing down on me.

I’m back on our front porch slamming her back so she’ll start breathing again. I can hear her throwing up. I see Haley in the street screaming for help. I picture Sienna’s helpless face staring at me because she can’t breathe. I’ll never forget the 3 firefighters’ faces that ran to us. I watch as the EMTs put oxygen on her face. This nightmare plays out in my mind constantly. It’s trauma. It doesn’t leave me. 

Now, I have the perspective of knowing that this could have just been a random virus. This random virus made it nearly impossible for her to breathe. If that virus pummeled her, what could covid do to her? 

The first year of Sienna’s life was full of respiratory illnesses. I spent many nights just staring at her listening to her breathe. I think I blocked it out honestly – the breathing treatments, the fevers, the nights spent alone with her while my husband traveled for work. I felt so alone. I didn’t know if her heart could handle it. She didn’t gain weight. The anxiety never fully leaves you. 

Every winter, we face more illnesses and every winter we inevitably end up at the hospital. A simple cold can escalate to an ER visit. Her narrow nasal passages and airways, her compromised immune system, and her heart defects are a perfect storm for escalation. 

As we face the uncertainty of this next year, my sleep lessens. My worries grow. The gravity of the decisions we are facing is not lost on me. 

Haley has had moments during quarantine, moments of resentment towards her sister as her friends began to venture out into the world of play dates and excursions. The outside world has moved on since March. We haven’t. 

The risks are far too great. Yes, both girls are missing out on trips with their family. They’re missing days spent down the shore playing in the waves. They’re missing amusement parks, zoo trips, playgrounds, and sprinkler parks. They’re missing friends, grandparents, aunts, uncles, and cousins. 

But they’re safe. They’re at home and they will probably remain home until things change. Given the current state of selfishness in this country, I don’t see an end in sight. People can’t even be bothered to wear a mask to protect kids like Sienna. 

I always looked at Sienna’s diagnosis as a gift to the outside world, a way to see the inherent good in people. I’ve always said the smiles and attention outweigh the stares and negativity. Unfortunately, given the optics in our country, it’s hard to hold onto that optimism. Our own leader cares more about how he looks in a mask then the purpose of the actual mask. 

I’m begging you to wear a mask for Sienna, and for kids like her. Wear a mask for Sienna’s friends who are battling leukemia. Wear a mask for your grandparents. Wear a mask so we can end this. We want normalcy back too, but nothing is worth my child’s life. That’s not fearmongering. That’s wisdom that’s come from experience. When you’ve been to the hospital with your child as many times as I have, you never want to go there again. 

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No Limits

When you were in my belly, I wanted so many things for you.
I dreamt you’d be loved. You are.
I dreamt you’d have friends. You do.
I dreamt you’d be your sister’s best friend. You are.
I dreamt you’d be happy. You are. 
It took me a long time to realize that those were the most important dreams I had for you.
Not when you’d walk, talk, or hit your milestones.
Life is not a race. You enjoy each moment. You slow us down and teach us that beauty is all around us in life’s most ordinary places.
You have brought us on an adventure. You have given me purpose.
You have forced me out of my comfort zone and into a community I never knew I needed.

Today, I will attend the National Down Syndrome Congress convention and I will learn about ways I can help you achieve whatever you dream up for yourself, because if there’s one thing I’ve learned on this journey, it’s not to limit you.

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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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