by Jennifer Matson
Sometimes in life things happen in a way that we least expect it. Plans don’t turn out the way we had hoped, people let us down, we lose someone we loved, or we are faced with challenges so trying that we fear they might break us. As the parent of a 21 year old adult with disabilities I have been in the trenches of some of the most difficult challenges I have ever had to face.
Felicity is our first born. She was the baby I had dreamed of after undergoing five years of infertility treatment. Being a first time mom, I had no idea what to expect from motherhood. Developmental stages, milestones, and growth charts were a foreign language. What I did know is that I had a baby who was inconsolable, low toned, floppy, difficult to feed and impossible to get to sleep. She was the oldest in her playgroup but the farthest behind in skills. At her eighteen month check-up she still wasn’t walking. Our pediatrician showed very little concern, so I thought I was overreacting. There were no referrals made to therapy or further specialists, rather we received family encouragement to pursue our own evaluations. Not only did the physical therapist suggest services, but so did the occupational therapist, and the speech pathologist. This would mark the beginning of years of research, questioning, and pursuing any and every service we could to increase the quality of life for our daughter.
There are years of stories of Felicity being excluded, misunderstood and pushed aside. Each of those instances created a deeper strength in our family to advocate and speak on her behalf. We lost friendships, family relationships were severed, and feelings of isolation were all part of our process of raising a child who is disabled. There were years of avoiding events we were invited to for fear of Felicity melting down and people not understanding. The umbrella of behaviors and skills for those on the autism spectrum, paired with an intellectual disability and an ADHD diagnosis makes each individual impacted just that - an individual with their own unique needs.
At this phase of life, Felicity has completed the educational system. She is connected to every organization and service we can enroll her in as we try to fill her daily schedule. When her health needs rose to a level of needing regular and intense medical intervention almost two years ago I left not only my career, but my identity. I have been an educator since I was twenty-two. I always knew I would eventually leave my job to be her care provider, but I didn’t expect that this in-between stage would feel like I lost my footing in life entirely.
As I reflect upon where we have been and where we are now, there is one thing that remains clear. The people in your life, whether that be friends, family, teachers, doctors, SOAR or WWVDN staff, are the one who will ride the storm with you. They are the cheerleaders on your sidelines, the ones to pick you up when you break, and the ones to check in when you’ve gone quiet. Find your people and hold them close. This journey was not meant to be faced alone.
One thing I’ve learned -
Life has a way of working itself out.
Even the moments that broke you.
Even the endings you never wanted...somehow, they lead you exactly where you were
meant to be.
It doesn’t always happen on your timeline.
It doesn’t always look the way you pictured.
But one day, you’ll look back and realize the detours were the path.
The losses were the lessons.
The delays were protection.
Keep going. Life has a way of surprising you in ways you couldn't even dream.
Divine Female Empire
