Chaos Continued

For the past 11 or so months, I’ve missed the busyness of our lives. I am not going to lie. The first few months of the pandemic were the reprieve I have long desired. I enjoyed the stillness of time spent in the backyard, scavenger hunts on walks, and the hum of virtual school background as our days stretched into months. Then those days became more stressful. I watched Sienna’s development fall behind and Haley’s anxiety escalate. We were all ready to resume our lives.

After Jason and I were fully vaccinated, we decided it was time to do just that. Sienna’s preschool opened. We chose to send Haley back to in person learning. We resumed in person activities and therapies. I immediately saw a difference in both girls. Sienna is talking more. She is playing appropriately with toys rather than stimming. Haley, for the most part, has a lightness in her step I haven’t seen in over a year. Jason began traveling again and is gone during the week. And here I am, holding down the fort. While in quarantine, I started some volunteer work which has almost become a part time job now. I am enjoying it, but it’s advocacy and it’s time consuming. I forgot about the chaos of our days, and how sometimes those days have the power to break me. The story I am about to share is about a day I recently did break.

I was in the midst of picking up Sienna from school. I had to rush to get her lunch, so that we could make the mad dash to the pediatrician for an eye infection, then it was off to get Haley from school, and get to PT as quickly as possible. I also had a zoom meeting scheduled that evening, and Jason was out of town. My phone rang. It was a neighbor calling to ask a simple question, The conversation was friendly enough and my neighbor asked how I was doing. Truthfully, this was a really rough week and I wasn’t doing well. I didn’t say that, but I said that I was struggling to come to grips with the continued chaos of our lives.

He then said to me, “You know what, though? That’s all on your terms. It could be a lot worse. You could have a job and have to be at a desk all day.”

I was so taken aback. I said, “Well, I consider what I do work.” He then said, “Oh that’s fun work. What you do everyday is fun.”

I cannot explain how angry this made me. I quickly made an excuse to get off the phone. Tears filled my eyes as I raced to get to school on time. It stuck with me though. All day it stuck with me. Fun work.

At the pediatrician as I restrained Sienna so they could examine her eye, I thought, is this fun? Racing to pick up Haley from school and get to Sienna’s therapy appointment, as my blood pressure rose, I again thought…is this fun? While there and watching Sienna struggle to do things that come so naturally to other kids, I thought…is this fun? Is this life on my terms? As we got home and I rushed to do the laundry, cook them dinner, do their bedtime routines, and get them in bed so I could moderate a zoom meeting for the DS community, I thought…is this fun? Anyone who has small children knows that very few things are on your terms at this stage.

I want to make something very clear. I respect working women with all my heart. I really do. I wish the world respected stay at home moms. When I worked, I had time to schedule doctor’s appointments for myself. I could enjoy a cup of coffee at my desk while working in peace. I could chit chat with other adults and not worry about a child injuring themselves. I could do things for me. I enjoyed it. I ultimately made the best decision for our family. Jason’s career led him to traveling during the week and my heart led me to being home with Haley full time. Those first couple years of her life were some of the best of mine. I endured four miscarriages, but I had my girl to pick me up. The miscarriages also weren’t on my terms.

I reflected on that call, and thought there was no point in dwelling on it, but I am sharing it today, so that maybe you can learn from my neighbor’s mistake. Never assume you know what a person is going through. We all have burdens and some carry them more gracefully than others.

There is an “extra” in this life. Things can be extra hard. Emotions can take over, and that can take a toll. During those still days, I wasn’t watching Sienna next to other kids her age. I wasn’t comparing her with others. There was peace in that, and readjusting to that has not come easily to me. I am not proud to say that, but it’s the way it is.

But that same day, something miraculous happened during Sienna’s therapy session. Haley participated in the session and rode a scooter down the halls. Sienna was trying fervently to do the same thing watching her in awe. I watched her cry as we pushed her, and made her forge on. It broke my heart to challenge her and watch her struggle, but her therapist knew she could do it, and I knew I could trust her therapist. I was certain this was going to be a a failed mission, but then Sienna did what she always does. She proved that she was capable. Her sister being there motivated her. I got to witness a small miracle. Tears filled my eyes for the second time that day on the way home from therapy. That moment right there makes the extra worth it. There is so much beauty in this journey. I would not change my life for anything. I am grateful for the perspective I have been given and the small celebrations and miracles I get to witness every day.

Sienna’s therapist assists her trying to ride a scooter, while Haley rides one to the right of her.

I am happy to say that I am now adjusting to the continued chaos of our lives. The muscle memory was there. I just needed to find it. Our days are flying by, but watching my girls soar as we race from place to place is a gift. I wouldn’t have it any other way. I guess some days it is actually fun.

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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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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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