It all began with “coffee” marks on my precious new baby’s otherwise perfect skin.
When the doctor said Neurofibromatosis, we entered a new world.
We didn’t ask to go to this new place. We didn’t buy plane tickets or Mapquest it.
But we got there nonetheless.
...In this new world there were things we’d never heard before.
There were bone abnormalities called dysplasias, bowing, pseudoarthrosis, scoliosis…
There were tumors called plexiforms, neurofibromas, gliomas, astrocytomas…
Learning disabilities and developmental delays opened us up to things we knew existed, but never thought we’d experience.
Things like special ed, speech therapy, occupational therapy, physical therapy, social skills groups, CSE, IEP...
And there were tests.
Many kinds of tests: MRI, EKG, EEG, Neuropsychological, CT scans, x-rays, and the dreaded pathology reports.
Our lives hung on the news from those tests every three to six months, if we were lucky, every year.
It was a scary new world because you never could know what to expect.
The doctors all said, “Wait and see”.
It was all they could say. They didn’t know what the future would hold.
We learned to study statistics and pin all of our hopes on them.
Numbers and percentage signs, such powerful things in this world.
Prognosis was not a word in the vocabulary of NF doctors.
The doctors…
They were scarce and we had to search them out.
They weren’t always in our neighborhoods.
Often we traveled distances to find them.
They were specialists who we revered and respected.
There were Neurologists, Orthopods, Neuro Opthamologists, Radiologists, Anesthesiologists, Neuropsychologists, Oncologists, Cardiologists…
We hung on their every word in hopes that this time it would be good news.
We set up websites to share this news because telling the stories again and again became exhausting.
In this world we learned so many lessons.
We learned to look at our children in a different light.
We learned to cherish every moment even the impossible ones.
We learned to hug them and kiss them until they couldn’t stand it anymore.
We learned that they wouldn’t always be given the opportunities we used to take for granted.
We learned not to take anything for granted.
We learned how powerful a child’s smile could be.
And some of us learned how to say goodbye long before we were ready to.
Others learned how to console and many of us learned the power of prayer.
We learned to have faith because we couldn’t cope without God, an almighty power capable of such enormous things.
We learned to advocate, educate ourselves and others, raise money and awareness.
Our lives were changed forever.
But that wasn’t what we couldn’t handle.
Our children’s lives were altered to a degree of which we could not be certain.
Not knowing.
That was the part of this new world that consumed us with fear, got us on our knees to pray and that clung to every fiber of our being from the day we entered the world of NF to the day they will find a cure.
By Jesse's Mom
This site is a compilation of my thoughts, fears, experiences and efforts related to my son's diagnosis of neurofibromatosis and how I choose to acknowledge it. I also write occasionally about my oldest son's struggles with depression and addiction and his death as a result. I am a mother and I write to cope with the very difficult realities of life.
