Monday, October 12, 2009


I think one of my commentors put it nicely: I am starting to understand that I've begun a new iteration of the grieving / mourning process. The combined facts of The Boy's hearing loss, the continuing difficulty of the chemotherapy process, the retardation of his growth and physical development, the utter lack of normalcy, and the rising spectre of lifelong difficulties have begun wearing on me. Factor in the difficulty we've had with Younger Bro's excessive amounts of crying... Let's just say that I've been in better places.

I'm pretty darn good at handling difficult life situations. While I've struggled with depression most of my life, I've also developed some reasonably healthy coping mechanisms. But, I'm rapidly approaching a tipping point. How many times can we get punched in the gut before we don't get up again? How many setbacks can we suffer? When will the worm turn, and let us catch a few good breaks?

We went to the playground at the Watchung Reservation today. The Boy did his usual thing at these playgrounds:

He's way more interested in the numbers and letters than in the climbing stuff. He did climb: up an easy-sloped climbing wall, and he did cross the bridges a couple of times (applauding for himself when he finished, naturally), and he went down a big twisty slide a couple of times, which is big for him. I'm happy that he made those steps forward today, but I also wish that so many younger kids weren't bigger and stronger and doing more stuff than The Boy is.

Again, don't misread: I'm not disappointed in him but am proud of his accomplishments. I'm frustrated at the disease and the treatments that have stolen so much from what he might have been. I know I shouldn't dwell on what-if's, but any kid as smart, as focused, and as sweet as The Boy just deserves better.

Deafness frightens me. I can't imagine it. A child that can't hear is a child that will never truly understand what I do and how I have chosen to live my life. I know that - health permitting - he will have a fulfilling life; he's too intelligent not to. I am just torn apart by what he has gone through and what he will continue to go through. So, this weekend has not been a very good one for me.

I look ahead, almost obsessively: at the culmination of treatment, we begin the countdown towards a kidney replacement surgery that will have lifelong complications for him and for me (I'm assuming I'm the match). Then we have 18 months of incredibly important language development time with damaged, non-corrected hearing. Then, we have the increased possibility of Leukemia as he progresses through childhood, meaning having to go through the whole G-d mess again, with interest. And, let's not forget the nerve damage from vincristine in his extremities and the possibility of sterility and conception difficulty.

Any wonder why I occasionally want to shake some parents that I meet? Okay, your kid runs around all the time and never stops moving. Wanna trade? I'll take the bratty, healthy behavior, and you can have my life.

Best part of the whole thing? There's no let-up. No chance to slow down. No vacation from this. No time off. No way to tag-team and catch our breath as we're going along. This is 100% of my life, for the next umpteen years.

The REAL best part? He's worth it. Doggone it, every moment that I spend with him is precious. Boy Therapy isn't just a cute name: it's an important, necessary part of my day. When I hear "Dah-DEE!" in his sweet little voice, my life is better, and the whole thing - the struggle, the heartache, the dreadful agony of it all - is worth it.

- Posted using BlogPress from my iPhone


Elana Kahn said...

I think you should take an afternoon and watch "Mr. Holland's Opus". :-)

JC said...

Hang in there!

Sarah R said...

He is still perfect. ♥ He is incredibly lucky to have two of the best parents I have ever "known".

We cannot take life for granted and anyone who does needs to read your story.

The Reluctant Crunchy Mama said...

My heart breaks for you guys. As I am sure I have said before, I wish I could do something to make it all go away. My thoughts and best wishes are always with The Boy and your family. Lots of hugs. I wish I could do more.

the mol said...

We don't want to watch Mr. Holland's Opus--he loses his job at the end...

Musical Daddy said...

Ironically enough, just like real life...