Parenting a child with a neurological disorder can be lonely, worrisome and isolating. From the moment your child receives a diagnosis, life instantly changes in ways you can’t even begin to comprehend. Your world is filled with appointments, meetings, researching, questioning and advocating. As you lie awake at night worrying and thinking about what the next day will bring, you think to yourself: “if only someone could understand what I am going through.”
For the first 2 years of Maclain’s life, I felt like I was the only person in the world parenting a child with a disability. I didn’t have any friends in a similar situation, and I didn’t even know any friends of friends who walked in my shoes. I was so desperate at times for another parent who could understand what it was like raising a child with a neurological disorder. Someone who had been down the road already, or was just starting the journey. Someone who could listen to me cry and vent, help me find some answers and help me celebrate the milestones. I was so very fortunate to have loving and supportive parents, family and friends, but I longed for the friendship of another special needs parent. I kept thinking how powerful it would be if there were a way for parents like me to find each other, either in person or online, and how much we would all benefit from a community where we could share and learn and know that there was always someone there to listen. A community of parents from different cities, and backgrounds, with children of different ages and genders, yet all alike in their desire to do the best for their children.
Maclain is now 9 years old and for the last 6 years, I have been part of such a community, and we affectionately call it PAL. When THREE TO BE was first formed, one of the earliest discussions we had about our vision for the future, was how to create a way for parents, families and caregivers to connect with one another. We didn’t know how it would work exactly, or how successful it would be, but we knew how much it was needed, and we knew nothing like it existed.
Today, I honestly do not know where I would be without PAL. It has become my lifeline. It is a powerhouse of parents who are sharing and caring every day. We laugh and cry with each other. We celebrate and we mourn. We have lighthearted discussions around bodily functions, embarrassing situations in public and creative Halloween costumes. We have serious, heart-wrenching discussions about surgeries and hospital stays, depression and the uphill climb over endless obstacles.
How do I get my child more help at school? Where can I go for therapy? How do I find a good camp? Where can I get feeding tube supplies? How can I get extra funding? Who can make a weighted blanket? Who else is going to be at the hospital next time I am there? These questions and so many more are why PAL is so powerful. For each question, there is an answer, and often more than one answer. Then suddenly, we are not alone. Someone always knows the best place to get that hard to find piece of equipment, or that difficult to track down doctor. Someone always knows the best boots to go over leg braces, or the best kind of car seat to use on a plane.
Sometimes we agree, sometimes we don’t, but we always support, and we always listen and we always ‘get’ it. We are friends online, and we are friends in life. We welcome new members with open arms and open minds.
Together, we are PALs!