Monday, February 18, 2008


Henry is still doing well, although tired today. He's been lethargic this afternoon, atypically wanting to stay in bed with only token rides around the floor. He tires quickly and seems moments from dropping off to sleep at all times. He is such a good boy. After all, this is his life and his struggle. He's being forged into such a champion each day.

Somehow, perhaps for the better, the time leading up to this round of chemotherapy kept me blissfully ignorant of what was to come. I fell very easily into the rhythm of our new home life and had put behind me the first phase of chemotherapy as difficult but over. Since October, I've spent the entire time beginning to absorb what Henry's diagnosis meant to some facets of Henry's life, our lives, and those of his sisters. This reflection was tossed among the daily rituals that have become normalized in our new view of reality. I felt like I'd come to a calm acceptance of day to day living within our new situation and withheld looking too far into the future for fear of becoming too attached to a positive outcome or too overwhelmed by a negative one.

The several days immediately preceding Henry's most recent admission, began to weigh heavier and heavier upon me, a sense of dread mounting with each out patient visit to have him tested for his current functions so we could recognize what the chemotherapy had done to him. At some point during this time, I began to see the chemotherapy, not as medicine, but poison. We were planning to poison my son, because nothing else had any chance of preserving his life. The effects of this poison were to leave him, and those around him for that matter, scarred for life. Hopefully these scars would be minimal - small crosses to bear, the likes of which affect some at random anyhow - infertility or hearing loss for example. This knowledge and the pause before commencing the treatment, left me to stew on the possible outcomes, no longer able to preserve my shelter of ignorance.

For the first time since Henry's diagnosis, I found myself angry at this situation. It wasn't a 'why us' kind of anger, but a frustrated, having-been-backed-into-a-corner kind of anger. There was nothing to do but accept it. Nothing could make me feel better about it. No pleasure to be taken that would alleviate it. With full knowledge of it's effects, we would administer this poison to our son, hoping that it killed it's target before it ravaged him. I withdrew into myself, not really understanding my feelings well enough to talk about them to anyone.

Several days passed while I attempted to work this out in my head. I exercised, meditated, ate better food, tried to relax; all attempts to calm myself about it. Nothing helped. Nothing would change what was about to happen. It wasn't until I had my first turn in the hospital with him, seeing him doing well - laughing, playing and entertaining - that I was able to better accept our path. I woke up to a new level of realization and with it, a new wave of grief.

Momentarily lifting my head out of my anxiety for our future, I found the effects of Henry's diagnosis rippling out to so many people, some very close and some at a distance. I realized that I've not been as attentive to those immediately around me - my daughters, what is this doing to them? I picture their sweet faces looking up at me with a sad, innocent and inquiring look, eyes welled with tears. I look at my wife and imagine us on our wedding day, never guessing what could lie ahead, wishing to avoid things like this. I see our parents being supportive but looking behind their eyes - I see their empathy for us and their own plight of having a grandchild with cancer, wanting so desperately to help or fix things and not being able to; our relatives, watching and being supportive where possible, going about their normal days only to be reminded suddenly of what's going on at odd moments throughout the day; circles of friends feeling helpless but offering such wonderful support despite it all; parents of our children's friends trying to give answers to their kids - knowing that no kid should have to worry about such things; barely beginning to appreciate the years and years of treatments those families we see in the clinic have endured and are to yet endure; watching kids during chemotherapy and seeing them colorful and playful one minute and ashen and sickly the next.

There are days I feel completely inadequate to handle what's been handed us. Other days I feel capable, but wary because I know it's simply a function of time before that changes. In lieu of describing this whirlwind of emotions, my answers are brief and guarded when others ask how we're doing. I'm not sure I could describe it anyway, my emotions change at such blinding speed. When people marvel at how we're 'doing it all', I have to think, 'if you only knew'.

Yes, there are opportunities for growth in all of this. Adversity does that. But it's difficult to take solace in that. It's a difficult pill to swallow that one's growth is coming at such an expense. But what are we to do? In the face of such a crisis, we pick ourselves up, arming ourselves with the comfort and support of family and friends and make the effort to take one step, one day, one moment at a time.


Granya said...

That's beautiful Bryan - so comprehensive, so true, so full of sensitivity, honesty, fear, self - awareness and desperation.

Just beautifully written.

Rob said...

I see this a lot too - as both a doctor and a fellow-sufferer. The fact that pain is often the source of much fruit, does not make it any less painful. The silver lining does not eliminate the fact of the dark cloud. Many want to point out some good and feel like that should cancel out all of the bad. That is not life, that is the denial you are no longer able to live in because of your circumstance. In some ways that is a blessing - as you savor the moments you do have, but it does not take away the pain. All we can do as your friends (Tara knows who I am and she wrote encouraging things to me at one point) is to sympathize. We can stand along side of you during your hard times and feel some of your pain with you. It doesn't make the pain of your situation less except that it means you are not doing it alone.

The noble thing you are doing is not that you stand by your son during his life and death struggle, it is that you are letting us share it with you. Thanks so much for your honesty and for giving others a chance to really share your pain with you.


Anonymous said...

Emotional pain cannot be discounted. Fear, non-understanding, questioning, anger, discontent, worry . . . it's all far to real to discount. There is truly catharsis in letting it out tho'. I believe the old saying, 'thanks, it helps just to be able to say it (to give it voice)' -- or in this case, to write it.
Many, many times people have said to me, "I don't know how you do/did it, how you got through that." Did I question why? You bet! Whoever says 'ours is not to question why' is only offering a pat statement. Who says I can't question? Doesn't necessarily mean that I'm going to get an answer, but I can question! Did I rant & rave with anger at why was my family allowed to endure this trial? Oh yeah, all the time. Did I wake with fear of what each particular day would bring? Daily! Did I vent with indignation, 'What kind of loving God are you anyway if you would allow this?' You bet! I never got 'answers'. But, I learned nonetheless. #1 time & time & time again, I took it back to God. In doing that, I realize that He was there for me every time, He met me there! Didn't make my problem go away, but it definitely gave me the strength to deal with it for THAT day. In short, my answer to those peoples' statement of how I got through it . . . by the grace of God. I couldn't even begin to tell anyone how I got through it. I just did. And that's when it hit me. You get up each day, and just DO what you have to do for that day. It just happens, you just do it. Don't think ahead to the next day, or weeks ahead, just get through each day. Which leads me to lesson #2 I learned. God never said he'd take us around the valley, He promised to walk us through the valley. Our constant companion. And just as I realized that no matter how mad my kids get at me, they know I am there for them always. I can't necessarily fix their problems, but I'm there to help them through it. God is there for me that way too. In realizing that, lesson #3 emerged . . . ALLOW yourself to feel the emotions you feel. It's okay to feel them! And it does indeed make you stronger in the end.
I love the Kenny Chesney song, "Don't Blink" when it say, "Cause when your hourglass runs out of sand, You can't flip it over and start again, Take every breathe God gives you for what it's worth."
Now, having said all of this . . . yes, I would gladly wish I'd never endured those trials in my life. I certainly would wish them on nobody! I won't even pretend to understand why any of it happened. But, for some reason, God allowed them to make me who I am today. Who knows, perhaps to offer you the encouragement I do here today!
Continue to walk precious Henry through his valley & know the Lord is with you as you do so. And He's placed angels all around you to help you along this journey.
Prayers of love, and strength, and peace always ~ Laura

Anonymous said...

Thank you for sharing with us so much of your inner feelings.

I know God will continue to give you comfort and strength as you continue to head into the unknown.
Kisses and Hugs to ALL your children!

We love you all.
Cousin Susan H.

Anonymous said...

I don't know what to say. I was just surfing for something trivial and i stumbled upon this blog.

The situations in the life of people like me are trivial compared to those that you face.

very inspiring.