Connor's Crew

We walked in the second annual Children's Tumor Foundation NF Walk a couple of weeks ago.  There was a great turnout for Connor's Crew and I really had a great time!  Although I didn't fund-raise as much as the others - it makes me feel good to see so much support and awareness for the NF community.

Connor is in Maryland as we speak recovering from a 10 hour surgery - and when I talked to him the other night on the phone, he sounded really good.  He was a little skeptical that removing the staples wouldn't hurt like the Dr. said, and he had been out on a walk early in the day and saw some white tailed deer.  He wanted to talk to Joseph and just like always has such an affinity for the younger kids in our family.  He's a pretty cool little dude and I KNOW there are great things in store for him...not only in spite of this disease but maybe even because of it. Sometimes you have a life event that changes you so much or shapes who you are to the point that without it you may have been on a "normal" path, doing "normal" things and like Connor now, you evolve to surpass normal and become extraordinary.  The cool thing is that he gets to start practicing this while he is still young and has his whole dang life ahead of him to shine.

For anyone who needs to be caught up, Connor has a very rare disease called Neurofibromatosis II.  Non-malignant brain tumors grow on the auditory-vestibular nerve and the main treatment is surgical removal of them.  For those with NFII there are often visual problems.  There is no cure yet, but that is why we walk.  Connor has a team of doctors here in Dallas and is also a part of a study through the NIH in Maryland - where he is right now.  I know Connor's participation in the study is not in vain.

Cousin Jelena and her family came out to walk too!  I love this shot of us!

I made us some pennants for the walk and for Connor to hang on his wall afterward.  I wanted to make tons but after three my hand was seriously cramping.  So three it is!

I thought about taking a wagon for Joseph and next year I think I will.  He hung in there but out of hundreds of people, Josh, Joseph and Connor were dead last!

The event had face painting, snacks and food galore, a dj, raffle, a huge awesome playground, and so much good company.

Connor designed the shirts for our team and we all rallied around "Never Give Up!"...we can end NF together!

 

The forecast showed rain, but it held out and it was a wonderful day for a walk.  The park was really pretty and although it was supposed to be a 5k...the path wasn't marked clearly and I think we ended up only going 1.5 miles.  Ooops.  I gotta tell ya though, with ALLLL the kiddos there that day I'm not sure how many could have hung in for another 1.5.   

There was a huge turnout!

My sweetie!

Connor's poster in the pavilion. 

So in the meantime, we pray and hope and wait and love and play and hug each other up.  I know my family has never been one for taking health and happiness for granted and our little Connor is no exception.  Although we are all aware of the dark side, you can't dwell in the dark.  That's no place to live and it will make you crazy.  So instead we let the light shine on us and bathe in the rays of Connor's bright smile.

I never saw him smile so much as I have lately.

I think it's because everything is going to be ok.