No More Hiding
I had a good friend of mine tell me that they had no idea our family had the NF diagnoses...she felt bad because she thought she was living in some bubble, or just not paying attention. Neither are true...She didn't know because I was doing my job in hiding it. I felt I was succeeding, because those around me, couldn't see it.
Even Drs. couldn't see it, or recognize it. I had gone through countless physicals, and 5 pregnancies before NF would ever be brought up. I had the bumps, but somehow, the NF got overlooked, and I was really happy about that. It was like I'd hold my breath and just wait, then let out a sigh of relief, when I'd make through yet another appointment.
I hated “hiding” my NF, but I felt that if I was fooling others, especially doctors, maybe I could fool myself. It turns out, that's the only person, I was really truly fooling.
But it caught up with me...In a huge way. One doctor would recognize Neurofibromatosis on my body, then shame me for bringing children into the world. I laid there exposed as the doctor ran the doppler over my 38 wk pregnant belly. “This looks like Neurofibromatosis” she said. When she saw the bumps. I closed my eyes, not wanting to hear that word, directed at me, but I had no where to run. No covers to hide under. The doctors next words would crush me. “Well, it's too late to do anything about this now...You're 38 wks pregnant.” I knew exactly where she was going with this. I just closed my eyes, and told her about my 5 happy and healthy children at home, and that I expected no different outcome from this pregnancy.
But as I left the doctors office that day, a crushing realization hit me so hard, I could barely drive home. Shaking and crying, I began realizing that I had hid for 33 yrs. In some way or another, part of me died during that ride home....but another part of me became alive.
I was scared to accept my reality, but this was the time to do it. No more running, no more hiding. I had brought real people into this world, who needed a voice. Two of my children already had the earmarkings for a diagnoses (cafe au laits and freckling under the arms and around the neck) but I didn't take them into be “officially” diagnosed by a geneticist.
After Brooklyn was born, I examined her immediately. I know that with my other children, NF wouldn't show itself until a few weeks after their birth, but each day, I would get my baby undressed and scan every inch of her.
She doesn't have NF, and I thank God everyday for that. But two, now possibly 3 of my children do. And I have to work hard, so that THEY never feel like they have to run and hide and feel ashamed. I teach them to love who they are, and not to be defined but what they have.
In truth, I was hiding NF from me more than anyone else. If nobody could see it, if it wasn't showing up on the outside, maybe it didn't really exist on the inside. Even after 'outing' myself, my friend is still my friend, and I've found many, many more friends since accepting, embracing, and choosing to Thrive with NF. I've also reconnected with my best friend, one who I spent years never trusting with the truth: Myself.