as we head off to the "house of mercy"
Very early tomorrow morning, long before the summer sun shines through our kitchen blinds, Steven and I will be heading back to Bethesda and the NIH. I'm so very, very relieved that we're heading up at a time when Steven is feeling amazing!
He is so strong and well at the moment, it is hard to believe that he was feeling so horrible for the first six months of this year. Unfortunately, I was pretty much unaware of how many symptoms he was showing from January until May...napping on the weekends, complaining of constant headaches, holding his head while moving, a vague but constant discontent. I had grown so accustomed to witnessing these behaviors, that I didn't really have a clue as to how badly Steven felt. My perspective was definitely skewed.
But now he is feeling happy and strong, totally belying the fact that seven more tumors are invading his central nervous system.
So, we are not expecting bad news this Friday morning, but we are also not hiding our heads to the fact that the other tumors exist and the many rotten things that they can do.
We're leaving town at a time when we are so, so busy with this fundraiser. I really was stressing about the "Cure Steven" t-shirts, as I really wanted to give back to the many who will be up very, very early on a Saturday morning to serve my son. And the t-shirt options were so limited. I couldn't ask people to wear the shirts that we made...NEVER! Nor could I afford the $16 or more per shirt that we were being quoted. Today, however, we went to a really cool place that can produce the shirts that Steven and I designed together for just over $6 a shirt! And if you think that is amazing, just ask me about the man who worked with us to design the shirts!
And other than a few more odds and ends, the breakfast seems to be coming along nicely...and if you are interested in selling some of the raffle tickets that we have in our house, please email me and I will meet you on Saturday! We are feeling wonderful with the way this fundraiser is coming along!
We're also heading out of town at a time when the summer is starting to wind down. This has been such an odd summer for us...surgery and planning our first fundraiser ever...that I wonder if we had enough moments to relax and create those "lazy days of summer" memories that fortify us for years to come. I hope so!
So as we leave this house in the morning,
I'm traveling with
Three wishes for today.
Three wishes that are tugging at my heart.
1. I wish for no surprises this time at the NIH.
None. No more tumors popping up. No cysts. No surprises at all! None!
2. I wish for a cure for VHL.
As I've said before, nothing less than a pure and simple cure.
Six months of treatment ending with a medically induced remission and an 85% chance Steven will never develop another VHL tumor.
No more tumors, ever.
We're claiming a pure and simple cure.
3. I wish that my children will remember this summer as a time of happy memories.
I know these children will remember the laughs during vacation, the great plays at the baseball tournaments, and the lazy Sundays spent in Nana's pool.
But I also hope that they remember the strength and grace that Steven showed this summer. Absolute and amazing courage in the face and the aftermath of brain surgery.
And I hope that they remember the wonderful ways that friends have gathered round us, not only during times of need, but also in the joyful times of planning this amazing breakfast.
I hope they keep hold of those memories too!