#1 - (tears) received an email today from my friend, Leigh:
Hi Melissa and Andy, I just wanted to share this personal blog posting with you. I thought you might like to hear how your son still inspires me every single day. Love,Leighp
Big Bear and Max Mikulak At Big Bear, I skied!!! The last time I skied I was 13 years old. I had gone on a youth group ski trip with my best friend from church, Chip. He thought he would be funny and take me up to the highest slope---we were in Vail, CO. I think it was a black diamond, but I don't know my way around the codes and colors, so it could have been purple stars. Seriously though, I was terrified of the chairlift, so he said we would ride to the top to overcome my fear. Hmmm....no one said anything about not being able to ride back down. So there I was, never a ski lesson and barely a pair of gloves---freezing my butt off and absolutely terrified. I started pizzas and french fries (that much I remember him teaching me), but when I couldn't see the slope in front of me because it was so friggin' steep, I panicked. Well, panic led to more panic, which led to tears, which turned into me not being able to see because my goth eyeliner was on so thick that I was now blinded, and before you knew it, I was rolling downhill rather than skiing downhill. The biggest problem was that my ski didn't pop off, so I rolled and rolled and rolled and my leg twisted and twisted and twisted. Finally, the thing that stopped me was another skier going at the speed of light crashed on top of me. I got my my wish that day though... I had really wanted to ride a snowmobile. Lucky duck that I am, I got that ride. So I broke my ankle, wore a cast for 5 months, and the only thing that kept me from killing Chip was that I had to ride home on the bus for 11 hours, but I got to ride in the front seat while the other possessed demonic heathen youth rode in the back.
So I tell you this story to show you the power of Max Mikulak and that little orange bracelet. Chip died when I was 21, and I vowed I would never ski again since he wouldn't be there to watch me fall and laugh like a silly school girl. But then there is that bracelet that says Live Life to the Max that I wear every single day. And I thought about how forever 7 Max wouldn't be able to ski down that slope. I wanted to overcome that fear of the chairlift, the fear of putting on those ski boots after that stupid Achilles surgery, the fear of not having my kids succeed at skiing because their fearful, overweight mom couldn't get past the embarrassment of not fitting into a pair of cute southern California girl ski overalls. Well....I skied, and it all fit just fine. I rode that chairlift... alone!!! I rode and smiled, with tears falling down my cheeks. I sang and sang the whole time (maybe as a distraction---I did that when I was 3 years old and my family thought it would be funny to strap water skis on my chicken legs and pull me going 35ph behind a motorboat.) But what stands out the most was how close I felt to Heaven on that ski lift. Then, getting off was even better. I convinced myself that I would not fall because if I did, I had no idea of how I was going to get back up. So, I hopped off the lift, and moved my feet back and forth until before you know it, I was out of the way and the lift hadn't thumped me upside the head after all! Better than that, I skied! Down the hill...all the way...on two legs!!!!! I went up and down, up and down, up and down. I couldn't get enough. It was the biggest adrenalin rush I had experienced since childbirth. And while I can't honestly say that I felt Max with me the whole time (that kind of spiritual presence I think is reserved for the closest friends and family members), I will say that his story inspired me to get over my fear, get on that lift, and get my butt down that hill.
#2 - (tears) a writing by Erik Ludwinski in 2006 after relapse #2, perhaps an insight to what our children with NB have going through their heads, but can't voice it because they're simply too young.
Donna, Erik's mom, wrote today: I have been thinking so much about the hardships and tragedies that dot this NB landscape. My perspective is limited to the parent perspective, of course. I can't ever imagine what these kids really go through. We ran into Erik's BMT doc during our last visit to the hospital... and a flood of memories hit me since we haven't seen this doctor since he told us Erik had relapsed again, a year after his experimental second BMT. This was just a few months after Erik's short marriage collapsed, and Erik was severely heartbroken. The doctor hugged each one of us. Everything looked so grim. Fast forward 2.5 years: I wish so much every NB child could enjoy the same quality of life Erik lives today. I wanted to share with you what Erik wrote about a month after that news:
Friday, December 22, 2006 5:36 AM
Last night in the hospital. Transfusions are all over. Two down, eight to go. Now I just have to wait to feel better. Before that happens, it's just one more sleepless night in the hospital... what is this doing to my brain?
I've been called a lot of things since I started treatment. "Hero" "Awesome" "an
Inspiration" "Impressive". Everyone knows I have a huge pain tolerance. I just don't like to complain. I'm not going to lie though--it's hard being sick all the time. All I want to do is go back to work, go to school, have a normal life. That seems so distant now. So why didn't I get a normal life? Why did I have to be a "hero"? Always wonder just what it is that I'm doing that makes me a hero anyway. Just because I'm bearing all the pain? Or is it because I keep surviving? I don't think anyone enters the battlefield assuming they are going to be the one still standing at the end of the day.
And what about all my fallen comrades? Does anyone know how guilty it can make you feel? Cancer doesn't just mess with your health--it changes your whole mindset.
Suddenly all the goals and ambitions of everyone living out the "American Dream" seem so pointless because this close to the edge, you know exactly how much good it's going to do you once you are gone. You can't help but want them, like everyone else does--that's what society trains you to think. But what I really want is something that will not go away no matter what. I can't describe how much it helps me to know that so many people care about me and pray for me. It's something I think about all the time. Human relations are so much more valuable than anything material.
Cancer can do two things to you: make you stronger or make you insane. I believe I've tasted both. But if God did this for a purpose, it's going to be pointless if I don't figure out a way to make the experience useful. I can tell you it has already made me a more compassionate person. It means so much to be able to help someone out--to give back for everything that's been given to me. Even the little things that mean so much... like having a good friend to talk to late at night when you really needed it. It's not that hard to completely brighten someone's day. Thanks for reading this, and pray that I get more chances to help others, because that's what I really want.
#3 - (cry) Cody Johnson
This is so much like what we went through with Max. My heart is aching and breaking for this family. Let them know they are loved.