genell said...

I just got back from visiting our Hope, and she was deciding not to breathe, instead letting the ventilator do the breathing for her. It's a tiny step backward, if that. I guess it just seems like a step back, as I want nothing more than for her to fight off the machines. Take life into her own little bitty hands.

"Not to worry. It's the pain medicine. That's why she's on the ventilator. It's probably even better this way." the nurse says. Her name is Kim and she's the sweetest nurse. Or maybe she's just the most compassionate. They all take the time to explain the score to me, but I see the concern in Kim's eyes and know why she does what she does.

She explains to me how to read the monitor, and how to tell when Alex is taking a breath. How to tell when the machine is taking one: Machine. Alex. Alex. Machine. Alex. Alex. Alex. -That's my girl.

Then: Machine. Machine. Machine. No Alex. "Not to worry." But I can't help but worry. It's my daughter. I decide to leave the NICU & come back to our room. I'm tired. It's hard being strong all the time.

I don't cry much...almost never actually. But as I sat down & methodically trolled the comments from every post on this site (again) - I came across this one (click here to view her comment) from my "Aunt Genell" which brought me to tears. Genell is a wonderful woman, and the 1st person I ever knew that was in a wheelchair. My grandmother has been her caregiver and best friend for as long as I can remember. I never told her this, but I've always admired Genell's strength and will to overcome. Guess I've taken it for granted. Supposed it just came with the territory.

But her words helped put it all into perspective. It truly is about the people around you. Not just in terms of the love we, as parents, will give Alex. But the love you, as friends and family, are giving us right now by supporting us. The understanding George so honestly shared in this post. The sympathy Brad expressed emailing his experiences w/SB. The consistent prayers of Josh & Claire, our "Prayer Warrior" friends. I could go on & on.

My beautiful mother has made me everything I am today: a heart overflowing with love. Love that constantly gives itself to others, pausing only to recharge by acknowledging and accepting the love presented by those around me.

And I guess tonight I just needed a little recharging. So thank you all.