And so it goes...

A conversation via text the other day between myself and a CMV-mom friend: 

Me: I’m depressed. I can’t help but think it’s Keira-related. I guess you’re ALWAYS on guard with these kids, huh? I mean, she’s in relatively good shape, but not so good that we can schlep her along on a good summer vacation. It seems like the family is always divided in two- one of us with K and the other with the boys. Will I ever stop wondering how long this will last? I mean, I should probably accept that this is life from here on out, but part of me can’t help anticipating that she might not make it through the next couple of years. I hate this. I’m drained. Spending all of my energy trying to look alive when the boys are home. How do you do this?
 Her: <3 I don’t know that I do.
 Me: <3
 Her: It’s hard not to be depressed. I think I’ve always been high functioning depressed and it manifests in ways that aren’t helpful.
 Me: I feel like the older K gets, the harder it is to shake.
 Her: Why do you have to shake it? You’ll never NOT be depressed to some degree. I mean, maybe you will, but high five if you do!
 Me: Because I don’t want to get out of bed. I don’t want to take K to therapy. I’d rather tube feed her than give her something by mouth that tastes good because it’s easier for me…
 Her: Ok. Those are three different things. Getting out of bed—you will eventually have to do this. Take K to therapy—at some point won’t it be at her school? And oral feeding? Really? Is she nourished? ;)
 Me: Crappy therapy will be at her school. 
 Her: Better than nothing
 Me: My depression manifests as everything feeling too hard.
 Her: I know and that’s perfectly normal for depression. It’s protective. Mine manifests as “not worth it.” What are your goals for her, ultimately? For however long she is here? 8 years, 18, 80…
 Me: I don’t know. That she stays happy. That she can participate in family life as much as possible.
 Her: And family participation totally changes. I’m not taking my kid to the pool, but I’ll suit her up and splash her next to it. She can’t vacation with us, but I’ll work like hell to find anyone who can take her for a couple of days.
 Me: What are your goals for her?
 Her: God. At the end of the day, it’s always the same, regardless of achievement: healthy, happy, loved, safe. Period.
 Me: The achievement part is the problem. It’s so. Much. Work.  All. The. Time.
 Her: So then what are the goals for you? And F--- the therapists. It DOES get easier when they are out of your house and life. It depressed me and made me feel like a failure. It still comes up during IEP season because we shine the light on all the sh—that isn’t fixed that I guess I was supposed to fix. Sorry, f-----s. You see, my theory was always that I WILL NEVER KNOW. I will never know how much output will result from a busted body. I will always know how happy she is and how loved she is in our family and the rest is science and largely out of my hands. I’m more interested in her smiling all day than achieving sh--.   I’m a horrible mom. :)
 Me: No. You aren’t. And that’s important to me, too, but there’s a reason you still feel like sh—when the IEP time comes. We always think that maybe we could have done better.
 Her: Yep. But moot point.
 Me: Tell that to my depression.
 Her: I honestly think there’s hypocricy in the special needs community.  That my child is perfect and nothing is wrong with them and God loves them blah blah but sh—we gotta fix all this over here LOL. Or, if only they were better…Feed them, give them their meds, keep them safe and alive and loved. Done. You’d already be doing better than a large chunk of parents in the country.
 Me: Right? I mean, honestly her smile lights up a room. I want her to be happy But isn’t that what special needs parents all say, “As long as she’s happy.” Yah, right. If only it were that simple.
 Her: Is she okay? Where is she at developmentally?
 Me: She’s ok. Developmentally? Approximately the same place she was 2 years ago. She could be much worse health-wise. Good hearing so far. No seizures so far.
 Her: Good, good. Those are huge wins.
 Me: Wins for what? Longer life? Higher functioning? Fewer appointments? I’m not sure Maybe having a Joe (who is in hospice) would be easier. Is that terribly offensive?
 Her: No not offensive at all. When is therapy out of your house? Or during school hours, so you interface less?
 Me: In a few months…
 Her: Do you get respite? SSI?
 Me: Yes. I have tons of help. So much that I wonder if I’m just avoiding her.
 Her: I’d argue that help there doesn’t mean you’re avoiding her. You’re diversifying her world.
 Me: Good one. I’m totally a downer right now. Thank you for being real and not getting offended. I appreciate you.
 Her: I’m always here. We’ve all been somewhere around there. Or at least us cool ones will admit it. Those other b----s can f--- off.
 Me: :)

This exchange coincided with the onset of a stomach flu which kept me in bed for two days. I was not  unhappy to be in bed for two days. This afternoon, Mom reported to me that Keira wasn't taking her bottles well. She didn't want to participate in therapy today, was acting sleepy, and was quiet. 

"Does she miss me?" I wonder. I get out of bed. It's raining outside. A leak in the basement ceiling is dripping onto the carpet. I check the mail. A new summer dress that I ordered weeks ago has arrived. I try it on in front of Keira. I dance around and she laughs. Then I use my hand to warm up her mouth muscles and feed her some oatmeal, which she eats like a boss.

And so it goes...