Wednesday, January 7, 2009

His Face

Despite our Christmas scare, Henry is again thriving. It's so much fun to talk to him, play with him, learn from him, be amazed by him. I remain incredibly grateful for this time, and somehow able to put my sorrow away most of the time.

But I miss his face.

He's taking daily steroids now, for over 2 months. They've been tapered down to a relatively low level, but since he's feeling so incredibly good we're cautious about decreasing further. Regular steroid use causes a number of changes, one of which is a characteristic "moon facies", or more colloquially "chipmunk cheeks".

In the same way that two children with Down's syndrome look similar, any two four year old boys on steroids look like they could be brothers. Their cheeks are infinitely pinchable, kissable, lovable....but it's a real distortion of the natural face.

I've realized that I won't ever see his natural face again, as he'll most likely be on the steroids till the end. It saddens me. Of course, I'd never trade his current perplexing health, and I eat up all the grins, scowls, and looks that I'm getting these days. But after 15 months of baldness, anemia, extreme weight loss, extreme weight gain, and an episode of massive edema, I have a scant number of pictures of my boy, as he would have been, untouched by cancer.

Isn't he gorgeous?

19 comments:

Anonymous said...

Yes he is!

RRNC

MrsMiranda said...

Dear Dr. Smak,

My thoughts are always with you. I myself have been touched by cancer as my mother passed away with it when i was 21, its only been 7 yrs and i will never forget her loving face. I also have a 3yr old daughter and it rips me up inside to even think that something like this could happen to someone so loving and young. I cry with joy and sorrow when i read your blog and cant even think of the diff. emotions that you may have. May god bless you everyday that you have your little one with you and may you imprint his memory as im sure you have already done, in your heart.

with best wishes...
Sandra

Anonymous said...

My heart aches for you and your family.

Hanna said...

I wish I could give you and Henry a big hug. That picture is irresistible.

Anonymous said...

He is so beautiful.

Steph said...

He's gorgeous!!

...tom... said...

...

I _almost_ hate you Dr. Smak..!!

For putting a face to your story, a face 'on' your son, a 'face' to your 'journey'.


But I love it just the same.

Thank you so much . . .and, as MrsMiranda said you are in my thoughts every time I open my blog and see your blog link.


...tom...

P.S. He will always be 'untouched' in your heart.

rlbates said...

Yes, he is gorgeous!

Anonymous said...

He is gorgeous.
Henry, my hero.
K3P3

JeanMac said...

What a dear! You folks are always in my thoughts.

pelican said...

Both he and your daughter are gorgeous! I am very happy for your family that Henry is feeling good right now and I hope he keeps feeling that way for a very long time.

Dragonfly said...

He is beautiful.

Claire Mason said...

He's beautiful, and you can see that he's happy too. That's an infectious smile if I ever saw one. Best wishes.

Anonymous said...

His face is so handsome,and with the proudest grin that will in some way last forever. This is worth every memory you can savor.

Lurker said...

Wow.

Just wow.

Anonymous said...

He is beautiful.

God bless you & your family

Anonymous said...

He is absolutely adorable! I am in love with his eyes! You are constantly in my thoughts.

Jen said...

He is absolutely beautiful.

Dan said...

He's wonderful.

I am always more caring and understanding with my son after reading your words. Thanks for that.