Day +81

Last night we took the family, Claire included, to a great event sponsored by an amazing charity. It was probably too soon to try something like that, but it seems like her doctors are encouraging her to do a few things to move back into normal life, so we went. Well, it turned out that Claire's feet, which still can't fully flatten to the ground when she walks, were causing her a lot of pain. And the event was much more crowded than I had anticipated, which made me very uncomfortable. So we ended up leaving shortly after we arrived. Then Claire almost fell going into our house, and she ended her day with a good cry in her room. In some ways it seems like the closer we get to this 100 day milestone the harder it gets. I lose sleep because I am so afraid of what might happen. My mind is often spinning because I don't know what things will look like next week, next month, in six months. I've said it before, but this is such a hard age to battle cancer. I know there is never a good age, but these young adults are in such a unique situation. My husband and I have six children, and when they were little we were pretty strict parents. I never had the primary goal of being a friend to my children. I always acted as their mother first, and the friendship came after that. And we have worked very hard as our children have grown to give them independence. I mean, six kids. We don't need any forty year olds living in our basement, right? But seriously, we make very conscious choices to try and support without meddling and guide without telling our adult children what to do. It's not always easy, but we went into this whole parenting thing wanting to help our kids become happy, contributing adults with their own lives. Then there is Claire. Independence is almost impossible. Encouraging it is sometimes painful. And the thought of her possibly living on her own later this year seems incomprehensible. I know four other kids Claire's same age who have or are battling cancer. Of course, there are more, but these are the ones that I know. I know their families. I watch their journey. I talk to their moms. Two of these young adults are, like Claire, still fighting. And two of them are, hopefully, done with their battle. One of those is a dancer and a college student, and I love quietly watching her life. The other  is serving as a missionary for the LDS church, which is so amazing. I want this for all of them. I want them all to start college, live in an apartment, find their passion, fall in love. Remember how exciting that was? But in this moment it is hard to see how that will happen. I have faith, it is just hard to have vision. The mom of one of these beautiful young adults who recently reached her 100 day post transplant milestone put it this way.
 " Unless you’ve lived in this world, you may not understand why we did not immediately jump up and down and shout with joy.  This has been our world for so long.  We’ve learned that with the Savior's enabling power, we can do hard, really hard.  We’ve taken up residence in a place we feared.  And we’ve found a home of sorts, here. We know how to do long hospital stays, multiple IV lines, beeping monitors, space age procedures, and a host of other things.  We’ve met people on this side of the door who have become lifelong friends.  We pray for those standing vigil each night beside a child’s bed and for “sisters” who are continuing the battle in their worlds of cancer.  Now, there is trepidation of a different kind.  Can we move outside this world somewhat and claim another? "
Beautifully said, don't you think? But for now we will just focus on this next goal. Try to live in the moment. Breathe deeply, love fiercely, and trust that we are in God's hands.

In parting, I leave you with a picture of some brand new hair starting to grow. Just in the back. Not on the top. I mean, come on! Seriously? Geez!