Wednesday, June 16, 2010
Day +441: Learning to Live
It's day +441 for Max and he is doing great! He looks great, feels great and had a blast this afternoon playing with Alex and a good friend from school that he hasn't had over in probably almost 2 years, Cam. We went down to see the ENT at Children's this morning and Max's ears are great, finally. They have cleared up and look "normal", in the ENTs words. You can tell by looking at Max. I realize now how much he has been sufferring with the pain in those ears the last 10 days or so. We were both so happy that things are finally healing that we stopped and picked up donuts on the way home to celebrate!
Unfortunately, we got some very sad news on Monday evening of this week. One of our dear friends, Ethan, who was in the room next to us in the BMT unit, lost his battle on Sunday and earned his angel wings. You may recall that I have spoken of Ethan Alfred and his wonderful family many times before this. They have weathered unimaginable hardships, as Kathy, Ethan's mom, was separated from her family in Minnesota while she was here with Ethan for over a year. They were finally able to get closer to home a few months ago in a Minnesota hospital but, sadly, Ethan never made it home. He was only 21 months old and spent his entire life fighting to live. Nothing about this situation is understandable or even comprehensible.
As I tucked Max and Alex into bed last night, I told them about Ethan's passing. They were both very upset and troubled, of course. I tried to console them by saying that it is very hard to understand that these kids fight so hard for so long and don't win their battles. Alex said, "But, mom, we're winning...Max is winning." To which Max said, "That's right, Alex but, we ALL want to win...every one of us kids on that floor want to win!" Wow...once again, he impresses me! He has so understood things that I didn't know he would. It's one of the huge blessings that has come out of this journey for him, especially.
We ended the conversation by talking about heaven and saying that we have many kids who's families we met and grew to love through this process that are up there now - Ethan, Matthew, Andrew, Natalie, Jerrid and Troy. It's hard to believe that this many of the kids that we shared our time with during Max's BMT stay have not made it. It's incredibly saddening and sobering to think about all of them and to realize, once more, how amazingly blessed Max and all of us have been throughout this process. Matt and I say it all the time to each other - there is just no way to explain how blessed we are. I ended my talk with the boys by saying that in everything we do moving forward with our lives, we need to honor all of these kids and their heroic fights. The boys whole-heartedly agreed.
To that end, I am moving forward with a passion around Max's Meals. I have met with a lawyer (a family member that is helping me out) about pursuing the official 501c3 non-profit designation. I am pulling together some business plans and a Board of Trustees. In addition, we are going to expand the mission of Max's Meals - we are also going to have a piece that Max will "run" by deciding what kind of entertainment items (ie game systems, toys, etc) to donate to the patients of the Cancer and Blood Diseases Institute at Children's and we are going to have another piece dedicated to raising funds for the valuable research done by the doctors at Children's. We are getting very excited about this whole venture. I'll keep you posted as things move forward. Unfortunately, it doesn't look like the Pepsi Refresh project is going to work out for us. We haven't gotten any movement in our standing in some time and, as I looked around at the other ideas, I realized that it is largely a popularity contest. There isn't a whole lot of merit to what wins, not that there aren't some great ideas in there...but, there are some not so great ones leading the packs at some grant levels. Please continue voting, if you can but, I think we can pursue more merit based grants in the future.
Things have calmed down once again around the Meyer homestead and we continue to feel incredibly grateful and blessed. While this journey has been long and difficult, and we are sure that there will be more bumps in the future, it is one miraculous and beautiful story. We will never forget all of the sweet kids that we grew to love through this process, especially those that have passed. As one of my friends at the hospital likes to say, "it's through every one of these kids and their experiences that I truly learn how to live."
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)