Wednesday, June 3, 2015

IRONMAN Florida and Denver

CLICK HERE TO HELP #ENDNF

I've started this blog several times. I mean, I can't quite wrap my mind around training for and participating in ANOTHER IRONMAN. My entire thought process last year was one and done. Then, for some reason the ocean was quite angry on November 1st last year and they cancelled the swim. Although Jason and I continued and finished the 112 mile bike and 26.2 run, we still felt slightly incomplete. Then we got the crazy idea that going and doing IRONMAN Cozumel 30 days later was a good idea. Overall, we did get our swim in (and it was AMAZING!) but I was 6 miles short of the finish line. It wasn't even 24 hours before I texted Emily (our bold NF Endurance leader) and told her to hold me a spot on the IRONMAN Florida team. I wasn't 100% I was in, but I wasn't far off. 

It wasn't until a few days after we returned home that Denver said to me (out of the blue) 
"Mom, why did you stop in the ironman? I thought you were doing it for me?"
(Insert tears here)

THAT in itself wiped out any doubt I had about doing it again. 

I don't think I need a huge event in order to raise money for CTF. I don't even think I need any event. But doing this IRONMAN with CTF has not only already raised $12000, it is showing my kids that giving up is not an option. I want them both to know that I will fight for both of them. I want Denver to know that I will work my booty off and fight until my last day to find a cure for NF  I want Brita to know that as a woman, you can go far, be strong and reach beyond the stars in life. 

Yesterday was Denver's check up appointment with his geneticist. It's usually a fairly easy in and out appointment. Yesterday was a little different. I had a few things to discuss with his doctor. The first and most crucial thing was Denver's reoccurring headaches. Headaches that come on quickly and harshly and about once or twice a week. As a mama, I instantly think 'tumor'.  He was almost up for his routine MRI so we are just going to have it done a little early. 
What came as a surprise is when the doctor was examining his body, looking for new birth marks, abnormalities and such. She immediately found 'something' in his chest. She is not 100% sure if it is a neurofibroma tumor or just extra tissue, but there is something there that isn't supposed to be, so we will visit the endocrinologist for testing as well as a MRI on his chest. She also discovered that he has slight scoliosis. I had never noticed this before. It's nothing to worry about right now, but something else that is now and could be a problem in the future. 

We discussed his troubles in school, his anxiety, his somewhat weak bones in his legs and ankles, his short stature.... All caused by NF. 

Denver instantly started to get upset when he heard "testing"  No matter how many times we do this he is always nervous, scared and anxious. He begged and pleaded not to have to go to the hospital. Although we try our best to educate him about NF and keep him informed on what it is...he doesn't quite grasp that these test are for his wellness. He doesn't get it 100% that if there is something growing inside of his body, it could cause problems...and the only way to find out - is test and test and test. 

Nothing a 9 year old should have to endure. And nothing a 9 year old should HAVE to understand. 



I don't need an event to raise money and awareness for NF. (Ironman makes it a little more fun...now)
 I have Denver and he has NF. That's the only reason I need to raise money. I will not give up the fight to END NF -