Yeah, I wrote this near his 6 month birthday, but I wrote it in my word processing application, and then kind of forgot about it. sorry.
Six months into it, I feel like I have a better handle on things. Our routine has been established, and that’s a big part of it for me. Meds, dressing changes, clinic visits, labs, pump feeds, gravity feeds, feeds feeds feeds, barfing, always having a towel handy, pumping pumping pumping. It’s all become normal. That helps.
It’s not so overwhelming. It’s become our new normal. The kids are adjusting. “Mom’s pumping,” “Teddy throw up,” and “mask or leave” are part of their vocabulary now. (wear a mask if you’re going to stay in the room during dressing changes, or leave the room.)
I’ve even learned to live with the constant “is this it?” anxiety, to the point that it doesn’t feel like anxiety any more. I know it still is, but it’s not that soul-crushing, heart palpitations, difficult to concentrate anxiety.
I still feel pretty self-conscious about bottle feeding, and even more so about tube feeding, but the bitchy part of myself that I cultivated while breastfeeding, babywearing, and cloth diapering the other two (um, back before “everyone” was doing those things) has helped quite a bit. I just put on my Keep Walking face, and mentally dare anyone to comment. (You know how they tell phone customer service agents that people can sense when they are smiling even if they can’t see them? I think people can sense my Back Off aura, too.)
I still resent the time commitment – and I acknowledge fully that the time commitment is going to go up once he starts dialysis.
I’m comfortable enough with the stats of what we’re facing that I’ve started to let myself research kidney transplant issues, and post-transplant life. Slowly, because the little I know so far is overwhelming. I’m learning that I have a limit right now of what I can handle. I don’t need to know everything all at once. I need to take it slow, as long as there’s no hurry.
I can read Facebook entries from parents of regular kids that read “oh no! My 3 year old has a fever of 99!! What do I do?!?!?” without FIRST jumping to a reply of “Get down on your knees and thank God that your big worry is that she might have a virus that will make her feel bad for a few days, not that maybe she’s got a line infection or peritonitis that will require at least one surgery, hospitalization, and perhaps alter her life forever, because when MY kid gets a fever, that’s what we worry about.” (Um, I still do go there. I just don’t go there immediately. And that’s a win in my book.)
I can listen to other parents freak out over the newborn heel stick (the one for genetic diseases) because it’s so “invasive” without resenting them TOO much for their comfortable existence – the same one I used to enjoy.
I feel like I’m coping better. I’m not so angry, I’m not so overwhelmed, I’m not so resentful.
I still hate it. I hate it. I still, in moments alone with Teddy, apologize because his life is so hard and it’s not fair. I still hold him close and weep. I still hate what this is doing to my older kids. Though other people tell me that they’re learning compassion and patience and to roll with the punches, I don’t see it. I see anxiety, frustration, and the unfairness of it all. I see disruption. I see a tired mommy who is just. worn. out. And they deserve more, so much more.
But at this point, I’m able to see how far we’ve come as a family, and that gives me hope that we’ll be even better off in another six months.