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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Inaccurate Sibling Perceptions

Something happened recently. There’s been a shift in pity. Lately, it’s directed at Haley, and it’s not always welcome. People assume that Haley is missing out on childhood because of her sister. They make comments. They always hit me with them when I am in the middle of parenting my children, which makes it hard to address. I am not always the best at advocating in person. That might be why I choose to blog. I am not quick with reactions. It takes me time to digest things. So, I’d like to share these incidents in the hopes that they change perceptions.

The girls take a gymnastics class at the same time on a weekly basis. Haley goes in the big gym with the 4-6 year olds. Sienna and me go to the little gym with the 1-3 year olds. Admittedly, I haven’t had much time to interact with Haley’s coaches.

This week was parent visitation week and I split time by visiting both of their classes with both children. It was a nightmare. There were so many obstacles that Sienna couldn’t navigate. I spent the majority of time chasing her. I didn’t observe Haley in the way I wished I could. One of her coaches came up to me in the midst of this and asked if Haley was moving up to the older class next semester. Haley is ready for it, but we can’t fit it in. It doesn’t work for our schedule. We aren’t alone in this. This is not a special needs thing. This is a balancing all my kids’ actvities survival thing. When I informed her of this, she said, “I’m sure Haley has to make lots of sacrifices for Sienna. She’ll be fine in the younger class next session, but she is ready to move up.” It was at this moment that Sienna ran away and I had to chase her.

We had a similar interaction while Haley tagged along to an orthotics fitting. Haley was not doing a great job listening and I scolded her. The salesperson witnessed this and I noticed a judgmental glare. She began to measure Sienna’s feet, and Haley asked the salesperson how orthotics were made. She complemented Haley and said that was a great question and explained. Before we left, she came back in the room with a lollipop for Haley, not Sienna. She said, “You deserve special attention too, you know. It’s great that you’re so patient when you have to go on so many appointments for your sister.” Pardon my french, but what in the actual eff?

If I’d have had the time and energy, here is what I would say to them. ALL siblings make sacrifices for each other. In fact, Sienna sacrifices quite a bit of time when I take Haley to her dance classes for two hours a week. She certainly doesn’t get pity in the waiting room. She doesn’t get a lollipop. Don’t assume that because my kid has special needs that her sister is missing out.

In fact, she’s gaining something. She is exposed to something very few children get to witness. She has learned about empathy, love, and hard work, because of Sienna. Yes, sometimes she has to give up an activity. Sometimes, Sienna has to make a sacrifice for Haley too. That is what families do for each other.

When we were on our way home from gymnastics, Haley told me that every kid in her school, even the older ones know her. I laughed. I am glad she isn’t lacking in confidence. I said, “That’s because you’re such a nice girl and you talk to everyone.” She said, “No, Mom. It’s because of Sienna. It’s because you came into school and taught about her. Everyone thinks it’s cool that I have a sister with Down syndrome. She had a huge smile on her face.” So, don’t feel sorry for her. She’s got this.

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