Medical Message & Family Update - All rolled into one!

As we were winding down tonight, Sophie was much more cuddly than normal after a busy day. She leaned over and said, "Mom, do you think He knows? I mean, I think God knew that I was gonna get stuck a bunch of times and that's why he made these two veins on my arm pop out. Cuz he knows I'm hard to stick"... She does have two little veins on her arm that are more visible than others. But before I could interrupt her with reassurance, she continued, "And you know what else? I think He gave me such thick hair because He knew I'd have a big spot missing for awhile." As I sucked back tears I replied, "I don't know about that, but what I do know is that he loves us, and we're all in this together!"

Sophie wanted to show off her new sunglasses

Tonight as "scan time" looms over us, the overriding question in my mind is WHY? Why does Histiocytosis affect primarily children? Why haven't the doctors and scientists found a cure? Why Sophie? Why now? Why does this have to happen? I know God's grace is amazing and will see us through, but these questions are hard to ignore. I don't want to doubt God. My faith is stronger now than it's ever been, but it's hard not to wonder when it's YOUR KIDS.... It's hard not to be mad at someone or something as I grieve the loss of my daughter's childhood. I did the best to help her capture some of that childhood today at the school carnival. She didn't last too long 'till her little cheeks got beet red and we had to venture inside. I understand it was much hotter outside than usual today, with temps in the 90's, but the other kids were running around like crazy. Sophie said that she wanted to, but she just couldn't keep up and kept asking to go inside.

We got a drink, cooled off, and left to get Aiden's haircut. It was time... I loved the red curls, but it's so hot here in our area, that it was time for the locks to get trimmed down, at least for a few months.

After we had lunch, we rested. Sophie watched a movie and Aiden slept for over two and a half hours again. It gave me the opportunity to take a little siesta too, which was nice. Sophie woke me up saying, "Mom, you're snoring, and I can't hear my movie." I can take a hint... so I went into my room and laid down for a little while while Aiden slept. I felt so much better after that rest. I hope that I will get some of the things done that I didn't do today tomorrow. The photographer for that local news publication is coming over tomorrow to take pictures and help us put something together to help raise awareness for Histiocytosis. Hopefully that will go well.

Last night, I was talking to my boyfriend about how I dread going to the cancer center because there are some very sick kids there. It scares Sophie and I both so much that she may have to go through that and I want to go over and just hug on each one of them and comfort them some how. Right now, Sophie is on the low end of the sick spectrum as far as we know so far, thank God. And, I said I just want to go to a place where the kids aren't that sick so Sophie doesn't get so scared, even know I know that this is where she needs to be and I am SOOOO THANKFUL that we live as close as we do to the doctors that treat her. I told him I want her to be around kids that are on the same level of sick as she is. He said I want her to be as well as the well kids. I thought that was so sweet to say... because I do too! I have just lived my life for almost two years now dictating everything I do by how well or sick my kids are and it's hard to have the foresight to see both of my kids as well. Maybe because we've still got some bridges to cross...

I know it's hard to read about the medical side and the emotional side of what we're going through, and I don't want to depress anyone. I just need this time with you to express myself and hopefully give you hope. Hope is what keeps me going. EVERY day! The hope that one day, this will be much easier. I just know it will...

Thanks for reading, and for all of the kind words and notes of encouragement you've given us along the way.

Goodnight friends,

J