We were at a simple check up with the paediatrician, just for a flat spot on his head. And it turned into…I think Oakley has a terrible disease. He was diagnosed at 10 months old, and I spent many months missing out on his babyhood, because I was struggling with the grief.
Fifty percent of NF1 cases are genetically passed on and fifty percent are spontaneous mutations, which is what my son Oakley has, since my husband and I are not carriers.
When I first found out I felt like someone had punched me in the stomach. My perfect boy now has an uncertain future, filled with “what ifs” and “no one knows”. You see, with this disease no one can tell you how bad or how mild it will be, until it happens. Most days I try not to think about it because as of right now he really is doing great, and I’m thankful everyday.
I couldn’t imagine life without him. He is my little charmer.
We have been to the children’s hospital more than I have ever imagined having to go. You really never think about these things when you are pregnant. At least I didn’t. I never wanted to know which section of the hospital you go to for an MRI or which floor Genetics is on. When we go to the hospital, I’m always hoping for a different out come, but we always leave with the same result.
I have come a long way although I’m not there yet. I melt into a puddle at the very thought of his future.
But with each day comes new hope.
As for my journey with him, I feel confused and lonely, especially since I don’t have any friends who have a child with special needs. My family and friends are wonderful but no one truly understands like another mother, who is going through struggles like this as well. I am fearful for his future.
Will he find someone to love him? Will he get married? Be able to have children?
He will now have a 50% chance of passing this on to his kids.
Will he be angry at the world for being dealt this card? Most of all, will he be…happy?
I take each day at a time, and try to be positive but every once in awhile those negative fears and worries rear their ugly heads and it feels so hopeless. Then I tell myself that God wouldn’t give me anything I couldn’t handle and I’m his mommy for a reason.
Yes, you and I, we do have a different road, a tougher one, a bumpier one, but some times I think maybe…a more rewarding one.
In a different kind of way.
-edited by Michaela.