"We were built to fall apart, then fall back together." -Taylor Swift

Have you ever been triggered by something so strongly that it stops you in your tracks and makes it seem as if the world stops, even just for a brief moment?

Triggers – many of us have them. These emotional reactions that we have to things in our environment can sometimes hit us unexpectedly, out of the blue. They can be small reminders of events in the past and/or things that leave us feeling anxious and uncomfortable. For me, sometimes these triggers are less about the past and more about projecting into the future – Graham’s future.

If you have looked into Recessive Dystrophic Epidermolysis Bullosa (RDEB) at all, chances are you’ve come across some startling information, read some depressing statistics, and viewed some graphic photographs of blistered/scarred skin and chronic open wounds. Without delving too far into the nitty-gritty details, the prognosis of someone with RDEB can be quite dismal. If you have talked to me or read either of my previous blog posts, you also know that my family and I hold SO MUCH HOPE in our hearts that we will see progressive treatments and one day a cure for EB – a cure that Graham so desperately needs. However, sometimes I let the floodgates of worry open. Sometimes I see something or read something, and it will send me spiraling. Sometimes I cannot help but go down the rabbit hole of worry, consuming myself with the fear of the unknown - the fear of what could happen, given our circumstances and this diagnosis. All of this emotion seems to unleash at once, like lava erupting from a dormant volcano.

This week the trigger for me was a pediatric wheelchair.

I adjunct at Utica College in the Occupational Therapy Master’s Program, and I walked into the room to teach on Wednesday, and there it was. It’s so interesting to me that seeing this chair could take me on such an emotional roller coaster ride. I have seen these wheelchairs countless times throughout my schooling and my career working as a pediatric occupational therapist. Yet, at this moment, I realized I had not seen one since Graham was born.

I looked at the tiny seat with the small armrests, and elevating leg rests. I gazed at the headrest and the mini footplates. Seeing this chair made my mind press the fast forward button. I immediately started thinking about Graham’s future and what his mobility would look like. Will Graham have challenges with mobility? Will he need a chair just like this one? Will he be able to effectively maneuver throughout his environment to play with his friends and peers? I pictured a little older Graham, sitting in that very chair.

Once this delicate floodgate is open, the questions and doubt keep rolling in. They come in strong waves that wash right over me, temporarily leaving me feeling like I’m drowning in a sea of defeat, powerless to stop the force that threatens to affect my precious and sweet baby’s quality of life. Although Graham’s mobility is a concern of ours, it’s not really at the root of my fears. As both a mom and an occupational therapist, I appreciate and know that our mobility does not define us. I know that even if Graham needed to use a wheelchair, there are many ways to adapt and change the environment to make it accessible for him to engage in desired activities. What I mostly worry about is that his future will involve pain and suffering. No parent wants to envision their child’s future in this way. It’s both devastating and heartbreaking to even think about. The wheelchair is just what happened to send me down the path this time.

Last week it was a pediatric wheelchair. In the summer, I remember going on a walk with Graham and Carl and seeing an adorable young boy running with his dog. We just stopped and watched him running - fast, careless, and free. Then, Carl and I looked at each other, and we already knew what the other was thinking. Will Graham ever get the opportunity to do this? Albeit a simple task and one that some might take for granted, we wonder if our baby will ever get to experience it. As parents, I think it’s only natural to hope and wish and pray that your children get to experience all the adventures that life has to offer. It comes with the territory.

When you are the parent of a child with special needs, the speculation about your child’s future can be overwhelming. But, the reality is that it’s just that - speculation. None of us have a crystal ball that can give us clear answers about the future. None of us know exactly what lies ahead because nothing in this life is a guarantee.

When I experience these triggers, I allow myself a moment to go down that rabbit hole of worry. But not for too long. You can go down the rabbit hole. You just can’t stay there. I know that at the end of the day, it’s in God’s hands. I can stress, and I can question things. I can be sad, and I can theorize and hypothesize all I want, I’m only human after all. But all I want is for Graham to be happy, and this is what matters most. When I come back to this realization, I start to feel calm. I begin to feel better and more optimistic. I begin to feel full of hope once again. Why, do you ask? Well, that’s an easy answer - because we will do absolutely EVERYTHING in our power to make this happen. Graham has innumerable support in his corner, and I know that his life will be so full of love, light, joy, and laughter despite the challenges that lie ahead. There is no scenario that I can think of in which Graham does not feel this love to his core. This very complex equation then becomes very simple: NO MATTER WHAT, Graham will feel loved. He will feel supported. He will feel included. He will feel like the sky is the limit - because it is. I know he will break barriers and exceed people’s expectations. I know that he will be happy because we won’t have it any other way.

In the meantime, we will march on. We will march on one moment, one hour, and one day at a time, doing our best to live in the present. We will march on with hope and love. We will march on spreading awareness and advocating for a cure. And we will count all of our many blessings and hug Graham tight - for he is our very biggest one.

This is EB.