Monday, December 1, 2008

Strange Existence

We had a lovely Thanksgiving with lots of wonderful visitors and terrific food and just a generally relaxing time. This is the time of year when I usually begin to wonder what I was doing the year prior at the same time, this year has been particularly easy to remember as were in the hospital for a good part of the last three months of the year and generally coming to grips with our new reality.

Our lives right now are not easily explained. We often look at each other wonder if the situation which weighs on us is real. Neither Tara nor I can recall a time when Henry felt better than this, perhaps but for the time immediately after his treatment ended. His mood, energy and outward health is so comforting it easily lulls into a dreamlike state of being - heightened awareness of the specter of what is to come and deeply appreciative of the ease and joy of life right now. I would never have been able to imagine coping with this state of things as well as we seem to be able to right now. I feel at times like I'm crossing a lake of thin ice, steady for now, but very high risk of slipping and crashing through.

Henry's days now are filled with playing video games, Christmas projects, painting, TV and, yes, eating. His weight seems to have stabilized at just under 50 pounds. Lately he's particularly enjoyed scrambled eggs, cashews and biscuits ("I really like that bread Daddy!") as well as Hershey Kissses. We have been slowly decreasing his steroids on doctors orders and he's been fine for it. He's taking his chemotherapy like a champ - only one more day of round two to go. We had some slight anxiety over the weekend as he complained of a headache most of the day, but it was light and did not renew itself the following day.

Another disarming change with Henry has been his willingness to participate in household chores and with the family. He independently set the table the other night with no prompting from Tara or me. He's enjoying playing with his sisters again and doesn't require me immediately at his side. It's really like he's playing catch up for all the developmental and behavioral delays that he experienced over the last year - end enjoying it. It's such a truly wonderful thing to be able to observe in him.


Anonymous said...

So glad you all had a nice Thanksgiving. I was in Florida with the family and we talked about you all. I updated everyone on how good Henry was doing right now. Thanks for always keeping us updated! We love you guys!

Cousin Susan H.

Anonymous said...

Thanks for the update. It is always good to hear how things are going with your family. Your "little man" is growing up right before our eyes. What a precious family. Tell Henry I have some extra chores if he gets bored!
Love and prayers,Terra S.

Anonymous said...

It is so wonderful to hear that you had a wonderful Thanksgiving. I am glad that Henry is feeling better. He is truly an amazing child.

Tanya & Family

Anonymous said...

Always read your posts but have never commented...please know that you and your family are in my thoughts and go give all the kids a hug from me,
Bill Zellman

Anonymous said...

It is so good to hear yall had a great Thanksgiving! Thanks for keeping us up to date.
Susan V.

Anonymous said...

HI Schecks, glad your thanksgiving was enjoyable.....sometimes holidays can be so stressful and we lose track of what the true meaning is.
Glad to hear that Henry is feeling, and even doing chores without prompting.
You go Henry, you remain my hero.

Anonymous said...

Dear Schecks,
I've been quietly reading this blog for a few months. I learned of Henry's illness through friends -- I went to school with Jason. I have a son just a bit younger than Henry -- I don't pretend to remotely imagine what you're feeling these days or what you've been through. What I can tell you is that my family is praying for you each day and that your experiences so beautifully expressed here have absolutely inspired us to love each other better and stronger each day. You'll continue to be in our prayers and thoughts, but I wanted to say thank you for sharing and being such an amazing example for my family to try and emulate. Your kids are just beautiful--gifts that you so obviously cherish beyond words, and you've been and continue to be amazing parents -- and I think that's the best that we can really do. Wishing you peace this Christmas. LB.

Ami Czorapinski said...

Hi Henry and family. Just wanted to let you know that we are thinking and praying for you!