Tuesday, May 24, 2011


When we travel to the doctors we see only twice a year, it causes me to focus on where William was last time we saw this particular physician. Last year, when we saw Dr. G in Toledo, William was receiving normal saline once a week and I had just started accessing his port. Here we are a year later, and he is receiving dextrose in his IV along with supplements to help the mito function more efficiently and he is receiving 3-7 IV's per week.

Dealing with the progression on a daily basis, you don't always see it. It is sort of like getting to the end of the summer and realizing that your teenage son grew six inches, but because you live with him, you don't recognize the full extent of his growth until he tries to put on a pair of jeans that fit him at the end of the school year.

Last night, one of our pilots who lives nearby was playing chess with William and ended up going out to dinner with us. But while they were occupied, I pulled out a box full of IV supplies and started sorting. Charlie took a look at the piles of stuff and asked if that was a month's worth of supplies. I laughed, and thought, "Why would I bring a month's worth of supplies?" when I realized that he really had no idea. I explained that it was nine days of supplies, and his eyes got huge. "No wonder you have so much stuff when you fly." He really hadn't realized that 90% of what he sees when we fly IS medical supplies and we really do ship a 40lb box of clothes and school books every time we take an Angel Flight. I had told him, but he hadn't really understood.

But that whole conversation and the reflections of what was a year ago, once again made me realize how far William has progressed and caused me to ponder the summer. Where will he be in three months? I just submitted possible dates for our Make-A-Wish trip, but in the back of my mind I wonder how he is going to handle it. Will he be able to snorkel without ending up in the hospital? Will the energy required for that trip cause him to have yet another lower baseline? How do we give him that week and not lose ground?

I know this is progressive. I know that the future is uncertain. But the grief of today can be overwhelming, knowing that there is more to come. I came across a quote this morning by Kalil Gibran that said, "When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight." So true.

1 comment:

Janice said...

Oh Nancy. My heart once again goes out to you. I know what you mean about not realizing how much a child has changed as you are with him every day. I just pray that the change in Will would be for the better. I and my friends on our internet group, are praying for your entire family, but especially that God will continue to give you the strength to deal with everything. As we all know, "I can do anything thru God". Charles and I are hoping to be able to stop and see y'all on our way to NY (IF we make it) at the end of the summer.
We love you so much and ADMIRE you even more.
Aunt Janice Sue
BTW: Did you get the book I sent? What did you think about it?