Saturday, July 30, 2011

Deja Vu all over again

Daniel was a small baby. He finally reached the ten pound mark at one year of age, and that first year I put most of my energy into getting him there. I pumped milk, added powders to make it heftier calorie-wise, and supplemented with formula--the kind that was easily digestible (which, if you're familiar with special formulas, you'll know was not pleasing to the nostrils).

Turns out, Daniel was just programmed to be on the tiny side. At almost thirteen years of age he's only quadrupled that 12 month weight. He's 42 pounds and a few ounces. He still drinks most of his meals. He will eat well for the school staff, but not for mom. I don't sweat it. Every now and then I offer him food, and sometimes he takes it. Most of the time he smiles and raspberries it back at me.

The early days of trying to plump Daniel up came back to me as Rich started treatment for cancer two weeks ago. He had all of his teeth pulled, so he can't chew. Radiation is going to cause weight loss, and he'll need to consume about 2100 calories a day just to maintain his current weight. He may have to resort to a feeding tube before it's all over, but knowing my strong man, there's a good chance we'll avoid that step.

Back to my deja vu. I'm measuring and counting and coaxing Rich to drink the shakes and eat the chicken noodle soup I make for him. I'm using supplemental whey protein in the shakes to prevent muscle wasting. It's going well so far, but realistically, we're only into week one. We've got six more to go.

I'm starting to hum 'Circle of Life' in curiosity at how my life does just that. It circles. That isn't necessarily a bad thing. I know that we'll manage this, just like Daniel and I did twelve years ago when we were hitting the scales every other day at the peds office, in between therapies and other specialist visits.

I guess that's one of the silver linings of living with disability. You develop a tenaciousness that serves you pretty well when things go south. Then again, maybe I just haven't hit the wall yet. I'll let you know.


Elizabeth said...


Sending strength and courage -- I can't imagine how difficult this is for all of you. Thank you for keeping us informed, and I hope you are taking care of yourself , too (although that's a terrible cliche when one is the mother of a disabled child).

Carolyn said...

Yesterday when I wrote that post, things were going well. Today it was all in the shitter. I know it's going to be a roller coaster from here on out....Not sure how secure my seatbelt is, but it'll have to do. Thanks for thinking of us, Elizabeth!

Phil Dzialo said...

My thoughts and energies are for you and hopes that the roller coaster ride smooths out...tighten the seatbelt, you are a survivor and I applaud you stamina and attitude. It's a rare commodity in this world.