the ebb and flow of frustration
i'm not sure what the hagiographic work-up looks like on saint valentine, but i'm guessing it involves lots of patience, maybe a confirmed miracle or two, and something to do with love. my stores of patience are wearing a little thin here in chicago, as we continue the dual struggles of breathing and eating with isaiah. we are still trying to feed him, with mixed results. he has been really tired the last couple of days, and one thought is that he needs the support that the ventilator gives him- so we've scaled back the time that he's off. yesterday i asked him if he wanted to go
back on it, and he said yes.
we've discussed the pitfalls of prolonged stays in the ICU a bunch since we've been online- and it is one of the most obvious and frustrating catch-22s i've ever known. take the sickest kids to the sickest place, and if they're there long enough, they get sicker. i'm not sure isaiah is sicker than he was a week ago, but i'm damn sure he's sicker than he was when we walked in here three weeks ago- to the hour. i was complaining to one of our doctor friends this morning- he stops by just to let me vent i think- and he acknowledged all of these things. he then reminded me of some of the things that have affected jen and i so much over the past several years- he reminded me of the kids that have to add loneliness and isolation to their list of afflictions. the families that can't afford to have someone at the bedside 24/7.... the families that don't have the support of an extended network, and don't have the energy to fully participate in the care of their most fragile members..... so that perspective helps a bit- and reminds me of how thankful i am that we have the support that we have.
posted by joe @ 11:24 AM
3 Comments:
What the doc said is true, of course, and blessings on him for stopping in.
BUT
I think I write for many others with children who've not faced the challenges Zaya (and you and Jen and Joey) have: the stresses and uncertainties you've ALL experienced over and over again are enormous, and I can't imagine feeling anything other than frustrated and exhausted (regardless of the support system, the issues others face, etc.). Some perspective, yes. Some relief, not really.
I so appreciate and admire you all for your honesty and the perspective you've encouraged ME to have (indirectly, of course, because you guys never preach).
Prayers, thoughts, love to all of you.
Maura (Kathleen's mom)
As a parent I echo the sympathy expressed by Maura. We too were in the hospital with Truman recently and one of the nurses commented to me toward the end of my short three day vigil, "Not many parents want to stay". To be honest I think she mis-understands the issue, sometimes people can't be everywhere and although they love their kids with every breathe in their bodies, they also have to work to provide insurance and financial stability...in its own way this is love of a child too, whether it be easier or not I can not say, but I do know that hearing you mention perspective gives me more of it...I keep thinking that at some point the four of you have to reach the end of your capacity to keep perspective...again (as always) I stand amazed. Blessings- a
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