Tuesday, January 6, 2009


The last few days have been really nice. We had a very normal New Year's Eve with friends and the beginning of the year has been low stress and uneventful. Tara has begun work again after a nice break and we're beginning to get excited for a trip to Kansas soon to visit relatives. It all seems very normal and for that we're incredibly grateful.

Ignoring the blog, (almost) forgetting to administer Henry's steroids, hosting the Hospice folks - but only occasionally discussing anything material - all allow us to thankfully deny the inevitability of things and maintain a 'normal' life. We've been so busy and Henry so full of energy that I unexpectedly found myself with a few moments in the house by myself recently. I sighed in relief to have a couple of minutes to think, but was wishing it away moments later. It seems the bustle keeps my mind off things.

There's a sort of guilt I have for how easy things are now and how I cannot seem to gather it all up completely enough. Henry's enjoying life, pain free, oblivious to the pending crisis. The girls are too, happy to be taking trips, enjoying their mother being at home more. I read with great difficulty, how other children with cancer are coping. In a moment I feel like its worlds away, empathy, then quickly realize that one or more of those scenarios will be ours. How to feel?

As for Henry, I can't say enough how spectacularly he's doing. He's sleeping relatively well and has an abundance of energy. He's maturing and gets excited about things. He's been actively recalling memories of times past, almost as if he previously lacked words to describe the events, but now recalls them with great detail. Today we ran around in the gym at the YMCA with friends. He asked me after feeling my forehead, "How can I get sweaty?" He raced back and forth to the water fountain in his attempts. The effect of seeing him run and laugh is so soothing to me. He gets lost in play and it is so so good, so 'child', so pure.

When he goes to bed at night now, I can't help but think in a very discreet way, that we've slowly slipped beyond another day. It's that way for us all, but I guess the sheer quantity that we think we have blinds us to the value of each and every one. I cry sometimes to think of how soon I may wish for the day I have with him at this very moment. I try to soak it all up but I get this overwhelming feeling of trying to absorb the ocean, of trying to hold back a flood, or trying to keep the sun from rising. Time quietly slips away and is gone and that's all there is to it. We only have this moment. And memories.

Tonight as I read my email before bed, I checked on another child we watch that has the same disease as Henry's. He's recently had a downturn. It was painful for him and I'm not sure I've let myself imagine what it was like for his parents. Tonight's post from his mother was to let everyone know that he'd passed on late last night. As inevitable as it seems it doesn't make it any easier to know.

I'm off to bed now and, having written, anticipate that my mind will finally let me sleep. I hope to wake up and slip into the din of normalcy again tomorrow. But hopefully, I can carry enough perspective with me appreciate the preciousness each and every moment.


Steph said...

I know how it felt to read about Coleman, earlier tonight, but I don't know how it felt to read it from your point-of-view.

I understand some of what you're talking about....trying to absorb the ocean....as we watch our kids be kids....and I wish I could make what you talk about, the inevitability of things, not so, for you, for Henry. I'm sorry.

I'm glad Henry is having some painless days. Pure, innocent childhood days. And, I'm glad you get to witness it and share it with me (us).

I think about you all often.

Granya said...

Have a SPECIAL birthday today Bryan - fill it with moments to remember.

This post is beautiful, fills me with conflicting emotions just as any time that I have with Henry does.

Thank you for writing, sharing, opening your heart and spilling your tears, and mine.

I love you,


rlbates said...

Happy Birthday, Bryan. I wish you many more days that "slip by" filled with peace.

Anonymous said...

We are happy to know that Henry is feeling well and that you all have had a peaceful beginning to the year. Prayers and thoughts are with you always..
Val and Linda

Susan said...

Birthdays fall into the category of "normal". Enjoy your normal day, blow out candles and eat cake. Hang the pictures the kids made you on the refrig. This is YOUR day and you can do whatever you want.
So Happy Birthday and may you live long and prosper.
love and kisses,
Miss Susan (a grandfriend)

Anonymous said...

Happy Birthday Bryan!

Nancy in NC

Anonymous said...

Happy Birthday, Bryan! Thank you for helping me to "appreciate the preciousness each and every moment" with my own family.

Sareen Hebb

Anonymous said...

Bryan, you have a wonderful family! I am lost at word to say especially after reading you email but would like to only say our prayers are with you and your family.I pray for Henry's grandparents so God may give them the grace it takes for them to live happily each day. love Tom from ita.

Dani said...

Dear Bryan,
I hope you have a very "normal" but also very special birthday. Thank you for sharing your heart and soul so much here. I don't write much, but I do keep up when I can, and think of you all often. Thank you for reminding me how very previous life is. Lots of love to you, Tara, Henry, Sophie and Anna.

Anonymous said...


Eat all the cake n ice cream u want!

Thank you for letting us share in your holidays.

Hugs & Kisses to all

Tina & Bill HO HO HO!!!

Anonymous said...

Bryan and family,
Thank you so much for finding the time to blog for us.....I am so glad to hear that Henry my Hero is doing "spectacularly".

I cannot phathom how difficult it is as you read other families' blogs,, I am saddened by your friend's death.


Anonymous said...

I hope you had a wonderful birthday! Thank you again for updating us on Henry and sharing your thoughts. We love you all and love to hear that Henry is enjoying life!

Cousin Susan H.

Anonymous said...

It is so much better to bustle than dwell, and better to enjoy than to anticipate.

Keeping our Henry and your family in my thoughts,
K. Barron

Anonymous said...

Bryan and Tara, You and your family are an inspiration to us at Hospice. We love Henry dearly.

Beth Johns, Chaplain, Hospice of Washington County