Advocating for Ashlynn and Cerebral Palsy Awareness
Nicole Zwiercan sat at a café with her mom when she was unmarried and 22. She watched a young family at a table across the way, assisting their child with a disability. She remembers looking at the mother and smiling.
"I turned to my mom and said, 'that must be so hard.' But then I thought about it for a moment, and said, 'but you know, I think I could handle something like that. I hope that family is blessed."
Years later, when Nicole’s water broke at 29 weeks during her second pregnancy with daughter Ashlynn, she remembers thinking back to that moment in the café.
“It's not how we thought life would be, but then again, when does life ever go as planned?”
A Baby with Cerebral Palsy
"I was put on immediate bed rest after my water broke. At nine-weeks pregnant, I had surgery on a fibroid that was pushing into my cervix and causing bleeding. Due to complications with the surgery, an infection had developed, unbeknownst to my doctors or me. The pregnancy was already difficult and high risk."
Ashlynn was born at 31 ½ weeks. She was in the NICU. When she was just 14 days old, the doctors let Nicole and her husband know that Ashlynn had suffered a traumatic brain injury due to the infection.
"It was so difficult. We were both at peace with her special needs being an act of God, but knowing that it could possibly have been prevented was hard. I had to come to terms with everything. I remember wanting to understand WHY this happened and what it meant. Our doctors told us we would likely receive a diagnosis of Cerebral Palsy."
Nicole is committed to being open and candid about her feelings and the very real struggles that many parents face when navigating a challenging diagnosis for their child.
"I'd love to say I didn't struggle with everything, but the truth is, I had a really hard time. For a long time, I envied parents who were leaving the NICU with their babies. I wondered if I'd somehow willed this into happening. I kept thinking back to that moment in the café. I thought back to decisions I’d made and things that had happened. I remember some days I had to fight just to breathe.”
"Eventually, I sat down with my pastor, and he told me, 'you have to embrace the pain.' I remember wondering what that even meant. I even Googled it," Nicole says, laughing. "One day, I realized that everything in my life up to this point had prepared me to be Ashlynn’s mother. All those teachers who told me I talked too much and all those times when I felt like I was outspoken were preparing me to be Ashlynn’s mother.”
“Once I had the realization, it got easier. It’s certainly not easy, but I had more peace.”
At six months, Ashlynn was given an official diagnosis of cerebral palsy. But even before her diagnosis, Nicole had become a strong advocate for her daughter.
“Ashlynn started therapy when she was just two weeks old. Once I found out how well therapy served her needs, I was like, “bring it on.” We can’t fix Cerebral Palsy, but we can change her outcomes a little bit and make it easier for her to be successful and live the fullest life.”
“Every time they come, they deposit motivation and positivity in our house.”
Learning to Grow as a Mom and as a Family
As Nicole points out, life is often an unpredictable journey. As the mom of a child with special needs, she has learned many valuable lessons about navigating the twists, turns, and potholes.
“I want to be honest with everything. There’s so much that goes into raising a child with special needs. You’re concerned about your child and figuring out what’s best, but you’re also working through the feelings and fears yourself. You’re letting go of what you imagined life would be like and figuring out how to adjust, but it’s really beautiful. My biggest lesson with Ashlynn is that in no way does this need to be a tragedy. It's beautiful. It's not how we thought life would be, but then again, when does life ever go as planned? Instead, we get to experience a different life, and I'm so grateful for that."
“There are good days and bad days. There are good parts and bad parts, just like any situation. Every new parent goes through ups and downs as they figure out life with their baby. It’s okay if you feel down sometimes, but you just can’t stay there.”
When Ashlynn went home from the NICU, Nicole had already worked with the hospital to set her up with Early Intervention and therapy. Working with Ashlynn’s therapists has become a significant part of their family’s life.
"At first, we were worried she wasn't going to walk. In fact, I became a bit obsessed with that question. One day when I was on the phone, I mentioned something about planning a wheelchair for Ashlynn, and my five-year-old son started yelling, ‘No! She’s not going to be in a wheelchair! She can walk! She can jump!’ I realized how much he was concerned for his sister as well. He was worried about what was best for her too.”
“After working with Ashlynn’s therapists, we’ve realized that no matter what Ashlynn’s journey looks like, we’re going to support her and do what’s right for her, wherever she is. Yes, it may be challenging for her if she doesn’t walk, but you know what? We’ll adjust and keep going.”
“We love taking her out in the world. It isn’t always ready for families like ours, but I don’t want to keep her in the house. She meets with her M Street therapists in our home. They often take her in the yard, we go to a park, or we find ways to get her out and about.”
“Ashlynn often is a bit more focused when therapy is just one-on-one, but they also let her brother participate from time to time. I think it's easy to overlook the feelings of your other children when you're focused on helping a child with different needs. So, we always make an effort to ensure that my son feels included. The M Street therapists are really great about it."
“My biggest lesson with Ashlynn is that in no way does this need to be a tragedy. It's beautiful.”
Working with M Street Therapists In the Home
Nicole tells us that Ashlynn loves working with her M Street Therapists.
“Whenever Miss Sarah or Miss Jessica come over, Ashlynn lights up. She loves having a relationship with people other than just her family. I see so many benefits to doing therapy in our home setting. They’ve had a very positive impact on our family. They believe in Ashlynn, and they know she can do what they're asking her to do. Every time they come, they deposit motivation and positivity in our house.”
“Ashlynn’s a feisty little thing, and she's not shy to tell them, 'no more,' or 'not today.' She's developed such a cute personality, and she knows what she wants. Her therapists always find ways to meet her where she's at and follow her energy. They come in with positivity and leave Ashlynn even happier than before.”
Nicole tells us that she's extremely proactive about therapy time, taking notes, and asking questions. It helps her remember what to work on throughout the week and absorb the input from her M Street therapists.
"Our therapists always give me helpful suggestions, like what toys we should use or what activities we could adjust to make them therapeutic. I make sure she's getting a lot of therapy incorporated into her regular playtime. For example, she enjoys putting things in a bin and taking them back out. Her therapists recommended this to build her motor skills, and so we do it often, and she loves it."
"I'm constantly asking questions during her therapy. I think it's so important to ask as much as you need to during the therapy sessions. Sometimes I joke that they're also my mental health therapists. Often they're the only adults that I see during the day, and I'm just so grateful to have them come to my house."
"After they explain an activity to me, I'm always like, 'oh, that's brilliant!' Everything has a purpose and every activity is essential. I'm so impressed with their knowledge and their desire to make things easier and better for Ashlynn. They’ve really become part of our family.”
Nicole has embraced her role as an advocate for her daughter. She encourages other parents to seek support and to learn as much as they can to help their children.
"I always tell other moms to trust their intuition. When a mother notices something, she's often closer to her child and will pick up on it much sooner than other people. If your child isn't sitting up correctly or is exhibiting signs of autism, ask! Don't feel intimidated."
“I also tell parents to keep asking questions until you’re satisfied with the answers. You know if something is a little bit off. You know if you are uneasy about something. I encourage parents to find their voice. Writing helps too. You can get out your feelings and emotions, and process everything by writing it down.”
Nicole has taken her writing seriously and created the blog, It’s Simple, Be Kind, where she shares her thoughts and feelings about be a mom and advocate for Ashlynn.
"I want to tell parents that Cerebral Palsy isn't a tragedy. You don't need to be afraid to talk about it. The words Cerebral Palsy used to have a lot of power over me, but now I'm not afraid to talk about it. In fact, the more we talk about it, it's less scary to other parents, kids, and even teachers. There's so much confusion about Cerebral Palsy and it's important to share and break the stigmas."
As a mom and advocate, Nicole encourages other parents to share their stories and to get the support they need for themselves and their children.
“I want to tell parents that Cerebral Palsy isn’t a tragedy”
