I’ve admittedly been a little frazzled lately trying to get Nicky’s dilatation approved. I kept finding all these stumbling blocks. He’s over 18. His Doctor has retired. The new Doctor is not contracted with the Medical Group. The list goes on, but I realized yesterday that perhaps the biggest thing my son has taught me is that persistence pays off. Never give up. Ever. And it helps to MAKE people 
understand, clarify the situations to those who, frankly, NEED to understand.
Sometimes my struggles in getting Nicky what he needs is akin to being in the water, trying very hard to swim, and lo and behold, there is a bunch of people standing at the shore wanting to help, but not knowing how. Some may get their feet wet and ask us what we need, but they are rare. Most stand at a distance judge us and assume what we need instead of asking, but I refuse to drown.
I used to have meltdowns. Now I just stand firm. No need to look and sound like a lunatic, all I need to do is not take “NO” for an answer, stand strong and briefly and clearly explain why. Most of the time I find myself holding the hand of Doctors and Nurses who have no idea what EB is and what it entails. Funny thing is that, over the years, I learned to not expect them to. I know that I am not alone in this, parents of children with rare diseases are in my shoes every day, and although living this reality can be extremely lonely, I know I’m not alone.
When I feel grief wash over me, when I am tired of fighting, when I feel isolated or exhausted, I can almost hear another mom telling me “you got this.” They know of every dream for my child that I had to let go & every amazing moment these children bring. They know it’s a scary feeling to need to think outside the box every single day, yet we all somehow move forward, pushed by our love for our precious children.
I’m not scared anymore. Meltdowns are a thing of the past. This does not mean I don’t feel weak every now and again, but I am mostly strong, I’m happy and I’m whole.
I’m a special needs parent. I got this.
Love & Light
