The Realization of a Greater Life

The night of Sienna’s birth, I remember watching Jason sleep and staring into space, a million thoughts rushing through my head. No one knew yet. It was our family’s information to process and digest. I am ashamed of the worries that raced through my mind. I look back on those anxious thoughts and realize just how far we have come.

What thoughts raced through my mind?

Can I do this? Will we still be able to go out for weekly Friday dinners? Will we be able to travel? Can I do this? Will we have to leave the city for a different school district? Can we afford to raise a child with Down syndrome? Can we do this? Will Haley’s life be affected negatively? Will she be pushed out of the spotlight? How will this affect our marriage? Can I do this? Is this my fault? I don’t think I can do this.

Five years later, I not only know I can do this, I am grateful for the ride and our tour guide. Sienna has taken me on a journey of self discovery. Sharing my truth and our story has given me a greater purpose. Sometimes, I question if I share too much. Then I remember reading blogs that same night those questions raced through my mind. I remember the reassurance that came from reading other mother’s stories.

I laugh at those questions now. We do everything we did before Sienna came into our lives. That doesn’t mean things haven’t changed. The changes have made our family better. They have brought us closer. We have slowed down. We place more value on our precious time together. Life isn’t a race and there is no competition. Our society places too much value on being perfect and doing things a certain way. Sienna does things her own way. We have found that we like her way. We love seeing the world from her viewpoint, and as she steers our course, we continue to see things in a beautiful light.

During this journey of self discovery, I have become an advocate. I have learned that life’s greatest joy comes from helping others. I have learned there are people willing to help us, and it’s okay to accept that help. Unfortunately, until something directly affects you, you don’t know what you don’t know.

I didn’t know I needed to become more brave. Sienna has made me push myself out of my comfort zone. I am so grateful for that push, because I don’t think I would have gotten there on my own. If she weren’t in our lives, I would have missed out on so much life has to offer. I would still be seeing things through my self centered lens. Sharing my truth has connected me to some of the greatest human truths – patience, hope, connection, wonder, and finally self discovery.

I have grown. I spend time helping others in the community. I advocate for her rights. I don’t take health care for granted. I take things as they come. I celebrate everything. I laugh more. She makes us all laugh more. I have learned the value of what’s really important. This October, I wanted to express my gratitude for our path. I am grateful to Sienna for giving me a new lens. She has enriched our lives in countless ways. Her presence in my life has liberated me in a way only love can.

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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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