Wednesday, July 15, 2009
Bad afternoon...
.......my husband told me not to look up any pictures or the video clips for Neurofibromatosis. That was like dangling a carrot in front of a rabbit.....he knows I don't like surprises. I'm now in my office trying to stop crying......as I can't do this at home...........I can't let Tony know how that I am worried. God help me be strong for my family.
Subscribe to:
Post Comments (Atom)
2 comments:
hi Stephanie I am sorry you have been touched by NF1 too.
My 3yr son,Sam (also a twin) has NF1 , so do I , and several other family members ( my grandfather lived to 75 with few problems).
His twin brother Joel they aren't sure about.
They had their 3rd birthday two weeks ago.
We have eye appointments most importantly regularly and general paed neurologist every year now.
My cousins 2yr old (almost 3 with NF1) has severe speech delay too ...my son Sam doesn't speak as well as his twin brother but he is improving all the time so I don't know for sure.Will find out in a week.
I didn't find out I had NF till 22yrs old either.I have lots of CAL SPOTS. No one knew as far as I know or 'joined the spots [dots] in our family.'
It is so variable and even I hate to read all the google alerts and symptoms.It is scary sometimes though most of us have manageable symptoms...pray to God.
Please know it isn't so bad and you can help Brady get through anything he encounters.
Steph, right after I read on your blog about Brady, the first song I heard on the radio was Natalie Grant's "Held":
"This is what it means to be held,
How it feels when the sacred is torn from your life and you survive.
This is what it is to be loved
And to know that the promise was, when everything fell, we'd be held..."
I know it was no coincidence that this was the song I heard at this particular time..and..I know in my heart I was supposed to share this with you. Keep your faith. In your deepest, darkest moments, let the One who loves us more than we can even imagine hold YOU. NO MATTER WHAT....WHATEVER happens, it will be OK. Nothing ever given over to God turns out wrong--NO MATTER WHAT!!!!!!!!!
I love you,
Ms. Joyce
Post a Comment