The Hoover family, The Darsey Family and Michelle and her daughter and Cindy Hahn from Texas NF Foundation

I know a Fighter. His name is Jonathan, and he is a super hero in my book.  He has  Neurofibromatosis type 1.  Go Here for  more info on NF.

But Even Super Heroes keep their pain concealed.  Yesterday, I went to have lunch with him as a special treat for him.  I just came out and asked him if he was in pain.  He said yes.  I asked him when this started hurting he said that it was all the time and especially at school when his class is playing kickball, soccer  and the kids are way beyond his ability in the way they play.

Now, this year he has a card that says Need a break.  He can use this at any time, although he hasn't because he felt that he was going to be punished for using it too much, and that he felt that would open himself up to bullies.  By punished he meant he was going to be sent to the office, and suspended and sent to the alternative school kind of punished.  I encouraged him to use his cards so his body can not hurt so much.  

I will now be getting him seen back at the NF Clinic because of this revelation. Don't know and can't promise that the pain will go away.  There currently is no treatment for NF and definitely no cure.  That's why research done by The Children's Tumor Foundation is so vitally important.  So is getting support and advocacy while we learn of what Jonathan's NF is morphing into, and what his current needs are.  There are a lot school issues with learning disabilities and attention issues that we are battling with associated with his NF.  This is very common for NF.

This weekend we went to Texas NF Family Camp in Burton, Texas at Camp For all.  This was a crazy great opportunity for our family to learn more about NF, meet other families with this, and get support and make some friends with some of the biggest Warrior moms, who quite frankly have been to hell and back many times dragging the devil back behind their cars on the freeway, home from the schools, hospitals and clinic appointments.

4 Things  Jonathan and I  learned.

1.We are  now not ever alone in living with his NF.  This had me crying on the way back home from camp.  it was crazy bittersweet.  We had never met anyone with NF... so we had a lot of questions.  Thank you to those who  put up with our questions.  I didn't know NF can be progressive.

2. He met a bunch of adults that have NF and they aren't afraid to talk about NF.  In fact he met a few that go and advocate for NF and talk to a lot of people.  Reggie Bibbs is definitely in his top 3 for heroes.... and top 2 for me.  This also did take our fears and put them to rest.  

3. Friends are easier to make when the fear of being judged for what his abilities are or aren't , are removed.  He made several friends and we are going to make sure  he has every opportunity  to grow these friendships. I also can't wait for the next event to get to know more of the local families.

4. Fears are better faced as a family and as a group.  This was never so obvious to me  as when we went to the Giant swing.... The first picture there is a rope attached to  the harness which is attached to the swing.  It's safe.  But when they want to get pulled back other people go and hold it like they're playing tug o war.... this was also very obvious at the zip line tower and at horse back riding.  And if anyone wants to know EVERYONE in my group including me  rode a horse. I may have had a couple of panic attacks trying to get on the horse but eventually it was awesome. Kudos to the guy who led me on the trail. and let Sarah ride backwards on a horse.

Be very Blessed, Trina