By Ashley Schafluetzel | @ashleydawn519
When people think of topics or causes that we bring awareness to in October, the first thing they think of is breast cancer. We see social media, accessories, and even sports gear turn pink in support. My daughter’s cheer team even wears pink bows and uses pink poms! But there’s one day in October my family will always wear green, and that’s October 6 – World Cerebral Palsy Awareness Day.
Nine years ago, I would have had no idea what you were talking about if you said “Cerebral Palsy” to me. But today, those two words have changed my world for the better.
My daughter, Ella, was born nine years ago. We knew prior to Ella’s birth that she would likely have some kind of disability. We received the first crushing diagnosis during the second month of her Neonatal Intensive Care Unit (NICU) stay – Ella had Periventricular Leukomalacia. I immediately started Googling and trying to figure out what we could do to support her. A nurse told me, “Don’t Google it. Google isn’t kind. It’s Ella, she will do what she needs to do.” Truer words have never been spoken, and I often repeat them to myself. I’ve even turned them into a mantra that Ella will often repeat: “I am brave. I am strong. I can do anything. I am Ella, and I cannot be defeated!”
When Ella was two, we visited a neurosurgeon who gave us another diagnosis – Spastic Cerebral Palsy. Google it if you want, but Google isn’t kind. Cerebral Palsy (CP) is a brain injury that occurs in the womb, at birth, or shortly after, due to a loss of oxygen. It is a non-progressive disorder, which means the injury won’t get worse unless its exacerbated. People who have CP struggle with motor abilities. They may or may not walk. They may use a wheelchair, walker, cane, or nothing. They can be affected so minimally you might just think they are a little clumsy, or they may need full support and require a wheelchair, in addition to feeding tubes or oxygen. The muscle conditions, whether tight or weak, can become greater problems as one gets older. Ella has Spastic CP, which means her muscles are tight. Her muscles can pull on her bones and joints, causing them to develop improperly or out of place. It also generally causes pain. Physical therapy, lots of stretching, and (at last resort) surgery, all are preventative measures.
Google won’t tell you about the strength you will see from your child when they power through another therapy or a surgery. It won’t tell you how much joy you will feel with every new skill or small milestone achieved. We’ve met many people, some from online support groups, who give us encouragement and guidance that keeps us going.
There are sad and hard days, too. I can’t tell you how many heartbroken tears we have cried, but we work through those moments and move forward as best we can.
I often have people reach out to me because they have a friend whose child was born early or has received a new diagnosis. They want to know how to support their friend, and I love that they’re reaching out and want my advice! Here’s what I tell them:
Treat Them Like Any Other Family
Treat their family like you would any other family. Be willing and open to make accommodations, if needed, but treat them the same.
Know That Grief Will Come And Go
A diagnosis is very similar to grief – the pain can come and go. As our girl gets older, it can feel easier because we know more about her, and because she is verbal, we can figure out her needs more quickly. Also, she is amazing and so loveable! But there are days I feel terribly sad for her because she can’t keep up in many ways. I find myself caught up in the what-ifs.
Continue To Invite Them Along
Continue to invite their family and child along. If they decline, even repeatedly, continue to include them. They may be figuring out their new normal.
Ask How They’re Doing In Their Activities
I used to feel sad hearing others talk about their child’s accomplishments, knowing it may be something Ella may never achieve. Once, someone asked how Ella was doing in physical therapy, and it made my day. I had something to share, and I got the chance to brag about my girl!
Show Your Support
I see many of my social media friends posting things similar to “It’s ____ day! Wear (this color) to show your support!” DO IT!!! Absolutely do it! Send them a picture, and/or post it on social media. Those things make my heart so happy! It reminds me that we may feel alone, but we are not. We love when our friends and family wear green to show their support on World CP Day because it lets us know they are thinking of us.
Our family spends World Cerebral Palsy day celebrating our girl. She shares about Cerebral Palsy with her class, she tells them about her day-to-day life, and how she is just like them even though she appears different. This October 6, or any day, I encourage you to learn something new by starting a conversation or making a new friend, and maybe you’ll make someone’s day.
Ashley Schafluetzel | @ashleydawn519
Ashley and her husband live with their two kids, Ella and Jake, in Wentzville, Missouri. Both Ella and Jake were preemies (Jake was born three weeks early, and Ella was born three months early). Ella has Cerebral Palsy, along with some other conditions, and being her mom has taught Ashley so much. Ashley has been a kindergarten teacher for 11 years and it is her absolute favorite thing to do, even on the tough days. She loves the color pink, sparkles, her weekly sand volleyball games with friends, the St. Louis Cardinals, St. Louis Blues and Mizzou!