For the New Families Entering this Extraordinary Journey

I stood in your shoes. I stood at the precipice of this life, my emotions engulfed in fear, grief, and uncertainty. I remember the congratulations and the welcomes from our community. I still felt uncertain and then I felt guilt for my uncertainty. I want you to know that everyone entering this unexpected path has felt what you are feeling. We were not sure we could do it, yet here we all are saying congratulations and welcome to you. There is a reason for that. We have the gift of perspective. I promise that you will have that gift someday. You will process this and when you do, you will come out the other side. Someday, you will be dancing alongside us with your silly socks at a World Down Syndrome Day dance. I promise this life is something you will want to celebrate.

​Emotions are fleeting. Love is permanent. This child you have been gifted with is your baby and you will love him or her with a fierceness that will move mountains. You will become an advocate. As you settle into this role, you will learn about adults with Down syndrome living meaningful lives. Adults competing in Ironman triathlons, lobbying in Washington DC, acting in movies and television shows, and being celebrated for the people they are and the gifts they bring into this world. You will learn that emotional intelligence can take you far in life. You will see parents throwing parties when their children walk, talk, sit up, and everything in between, celebrating every milestone in agonizing detail because it warrants that reaction. You will have deeper friendships with other parents in this community. When you take away the pretense of perfect parenting, you connect with people on a more meaningful level. When you let your guard down and are given the opportunity to be truly vulnerable, the reward is a supportive lifelong community.

I would be lying if I said this path was easy. It’s full of mountains to climb and roads less traveled, but there is wonderment in this life. Hard work gives us an appreciation for things others take for granted. This journey turns life’s most ordinary moments into the extraordinary. My daughter, Sienna age 4, is sunshine, rainbows, and laughter. She has made us slow down and enjoy each day. When she was born, I found myself focusing too much energy on the future and unknowns. But Sienna in her wisdom, taught me that it was wasted energy. The truth is that none of us knows where ANY child’s life will take them. So now, we take it slow, enjoying each stage. We experience more everyday magic. I am so grateful to her for that welcome change in pace.

Sienna has forced me out of my comfort zone. She has made me take risks. Because of her, I started a blog that has been published by the TODAY show and ScaryMommy. Because of her, her 7 year-old sister and I advocated and fought for her rights in front of a US Senator. Because of her, he read my words on the floor of the United States Senate. Because of her, I have taken trips to Chicago, Phoenix, Nashville, and several trips to Harrisburg to connect with other parents in this community, each trip more meaningful than the next. Because of her, her sister has a front row seat to empathy and compassion. I can honestly say that Sienna has enriched our lives. She has made us better people.

Your child will do the same for you and your family. One day, you will stand in my shoes with a four year-old with Down syndrome, and you will be the one telling new parents that this life is worth celebrating. Until then, know that we have all felt what you are feeling and we are here to help you navigate it all.

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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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Living in Fear

Powerless. That’s how I feel. I watch as she avoids saying one word to her speech therapist the entire session. She’s so stubborn. She isn’t making progress. Her peers try to communicate with her and her responses are unintelligible. I know it will come. It will come in her own time.

Sienna doesn’t see the giant clock counting down over her head. She doesn’t know it’s there. How much time do we have left? Her outpatient therapists are her biggest cheerleaders. Yet, they could be ripped away from us in the blink of an eye.

 

How? Medicaid. A controversial topic today. This post isn’t meant to be politically divisive. It’s meant to explain why this government program is so important to our family and families like ours. If you’re anything like I was before I entered this world, you might not know.

When Sienna was born, one of the nurses said to me, “You won’t have to worry about the overwhelming costs associated with raising a child with a disability – all the therapies and medical equipment. You live in one of the best states (Pennsylvania) in the country for services.” At the time, in the fog of Sienna’s diagnosis, I didn’t realize the significance of that conversation.

Pennsylvania is one of the few states that provide Medicaid to families raising a child with a disability, regardless of their income. You might think that’s unfair. If we have a decent income, we should pay for our child, right? What you might not know is Sienna’s primary insurance covers 20 therapy sessions per year. This is typical of most insurance companies. Sienna receives 8 therapies per week. We’d burn through what our insurance covers in 2 1/2 weeks. After that, we’d be paying out of pocket. How much? $3,400 per week or roughly $163,000 per year. I have the EOB statements to prove it. Someone in my life once said to me, “So what? You can afford it. Sell your boat.” If only it were that simple. I’d give up the boat in a heartbeat. I’m not even talking about the dozens of extra doctor visits and medical equipment like her walker, adaptive stroller, and orthotics. Sienna’s needs are minimal compared to other kids in the different abilities community.

Another Mom and I spoke with a government official a few weeks back over a conference call asking if the proposed Medicaid cuts could affect our families here in Pennsylvania. He informed us that the possibility of Sienna losing her access to these services is real. Medicaid operates with funding from states and the federal government. For each dollar a state spends on Medicaid, it receives a matching amount of federal funds—without limit—making Medicaid a statutory entitlement for states participating in the program. The Trump administration wants to convert Medicaid to a block grant system. The least complicated way to explain it is to say this….it would put caps on everything. They wouldn’t be obligated to match that funding, and because Pennsylvania spends so much, they don’t have any extra to cover the gap that would be left by the federal government. Families like mine would be first on the chopping block. We have a decent income and no complex medical needs. When and if this happens, we will be forced to cut therapies. I will have to decide if using a utensil to eat or talking to her peers is more important. We would never be able to provide her with everything she needs. She would suffer in the long run.

Study after study has shown the importance of early intervention. Childhood therapies are linked to positive outcomes in the following areas; cognition and academic achievement, behavioral and emotional competencies, educational progression and attainment, child maltreatment, health, delinquency and crime, social welfare program use, and labor market success. It benefits ALL of us to give children the proper supports they need to succeed.

Last week, Sienna and her speech therapist had a groundbreaking session. After months of presenting Sienna with options, asking her to verbally acknowledge her choice, she finally gave in and spoke her preference. Elsa or Elmo, Sienna? Elsa! It was magical. It’s crossed over at home, at school, in other therapies, and in her behavior. She was starting to develop some concerning behaviors because she couldn’t communicate her needs. Because of speech therapy, hell BECAUSE OF MEDICAID, she was able to mitigate those behavior issues. She has developed a sense of independence. She deserves that. She deserves to gain those skills in her own time, not the government’s time.

If you want to know how you can help, share. Share this blog piece. Call your lawmakers and tell them you do not support the proposed changes to Medicaid. If you want to get even more involved, reach out to me. I can help. Thanks for reading.

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