This post is authored by Leah Berkland, mother of a Gillette patient and a member of the Gillette Family Council.
Most parents would tell you that having a child changes your life in ways you never could have imagined. That certainly was the case for my husband, Mike and me. Our daughter, Peyton, is now 6 years old, and it’s been a journey of hope, faith and love.
Let me start by telling you a little bit about our daughter, Miss P, as she’s more commonly known. Peyton is a hug enthusiast and a sharer of joy. She is tender, loving, and oh man, does she have a lot of jokes. She’s great at working a crowd and if she could talk, she’d make for a great politician.
Peyton hasn’t had a typical childhood. From the moment she was born, she has been full of surprises! She was born prematurely and has had many complications in her short life. She has many unique characteristics; most of which are not typical, stump doctors or just seem to be unexplained.
At 6 years old, Peyton’s had 15 surgeries, sees 21 specialist doctors and has spent more time in hospitals than anyone should. When I have a tough day, I think about what this child has endured, the smile that she always carries and I know I can venture forward. She is my inspiration.
For much of Peyton’s early life, we visited many different hospitals and clinics without really getting the care we needed. We bounced around looking for answers and lacked a comprehensive care plan for Peyton. We now feel so blessed to have found Gillette Children’s Specialty Healthcare. Gillette is a one stop shop for us (it’s our Target of hospitals), providing comprehensive care, a staff that cares about our family, and a community where Peyton is seen as the remarkable, fun-loving child that she is.
In communities beyond Gillette, it isn’t always as easy. There’s the staring. The un-empathetic comments or the parents that let an important “teachable” moment pass. When you have a physically visible disability, it is all too often, the first and only thing people see. People don’t always know how to respond, are nervous to say the wrong thing or just feel stifled and do nothing.
In these moments, I want to encourage parents to have grace, compassion and curiosity. It’s OK to ask! It’s OK to not know the perfect thing to say. If a conversation comes from a place of genuine interest, it will be received with positive intent.
I will always choose a conversation over awkward silence or staring. My personal resolution is to show courage in these moments. To help parents have a conversation and be more comfortable talking with other children about who Peyton is. I want to be the best advocate for her and others; this is my journey.
Before Peyton started kindergarten, we advocated for her to be part of her community school and to be integrated with her peers. She thrives in this environment and we wanted this setting for her. Not just for her benefit, but for the benefit of the other children as well. If we isolate our children now, how understanding do you think they will be as adults?
Many things in life are complicated, but being inclusive and compassionate doesn’t have to be one of them.
The first week of kindergarten for Peyton was exciting, but we knew there would be education and awareness needed. There was a day that everything changed for her. I went into Peyton’s classroom and read the book “Moo!” by David LaRochelle. It’s an adorable story about a journey that a cow takes. Surprisingly, he only uses one word, “moo,” to describe his adventure. I love this story because you can understand the cow’s journey and feel his emotions.
This resonates for us, because Peyton only says a few words. If you pay attention to her though, it’s easy to see how much she can express with the words she has.
Sharing this book with Peyton’s classmates allowed them to understand Peyton at a different level. It allowed them to ask me many questions about her and for me to answer. I was also able to share the ways that she is just like them. The other students became more accepting, and from this day on, the kids have gone out of their way to interact and play with Peyton. They have since embraced her and have learned her language. It is a truly remarkable gift.
We know that not every change will come so quickly and that we will need to continually advocate for our daughter. After our son Whitten was born, we know better than ever that having a child—whether they have a disability or not—can be challenging, but also immensely rewarding.
If there’s one thing I want other people to know, it’s that while every child’s journey is different, every parent wants their child to feel loved, supported and included in their community.
My New Year’s resolution, my promise, is to be more courageous in moments of adversity as I help my daughter navigate the world. All we ask in return is that others try to meet us halfway. If each one of us brings grace, compassion and curiosity with us, we can create a world where each child has the chance to fulfill their potential.