It's been a rough past few months, and other than a mentioning of it in passing or when I call or text to cancel plans (once again), I haven't really felt able to talk about it.
You see, I've had to cancel plans a lot.
A LOT.
We've had to stay home and away from the "real" world a lot.
A LOT.
For a family that's usually on the go and active, it's been really hard on all of us. Staying inside instead of going snowshoeing. Canceling a field trip and staying home. Delaying plans for a big science experiment or kitchen experiment because once again, I'm sitting on the couch, cuddling a child who doesn't feel well.
Mr Theo gets sick. A lot.
A LOT.
And it's been hard on all of us. Funnily enough, I don't think it bothers *him* too much - obviously he doesn't feel well, but I think he's so used to being sick that he knows right what to do and has come to terms with it. That in itself makes me feel so sad for him. Our little guy has gone through so very much in his short lifetime, and that's just not fair.
We went from a family who had one sick visit to the doctor in over 4 years to a family who is hardly able to leave the house because of a fever or snot or coughing. And, to tell you the truth, it's been a struggle. Tempers flare. The big kids are disappointed, once again, that we can't go do what was originally planned. We're tired from not sleeping at night (that's when his fevers flare up and when he's most miserable and wants Mommy and/or Daddy the most), and bored during the day.
The big boys turn into zombies and then monsters with screen time, even educational shows, so I have to ration out movie time and computer activities. Honestly, it's usually more work for me to RECOVER from screen time ("I'm bored...." "He's looking at me..." "I don't know what to doooooo...") than it is to just try to entertain them without a screen.....but I'm running out of ideas and ways to motivate. And my stash of art supplies is running low.....but I can't go shopping for more because of fevers, coughs, and snot. I can't leave him with a babysitter, and can't take him with me, so going to the store is out. My brain is mush, so ordering things online doesn't always happen because I just plain forget by the time I sit down. (Mental note: place order once you finish blogging).
We're tired, we're grumpy, and we're all feeling stir crazy. Oh, and I'm covered in snot. ALL.OF.THE.TIME.
But yet, I feel like it's not okay to talk about it, or if I'm going to talk about it, I have to be all "matter of fact" about it and not complain, at least not more than a quick comment. ("Yep, Theo's sick again, so we can't go anywhere. Stupid chemo wiping out his immune system!").
Why?
Because we've been reminded in the past that we "chose" this road. Yes, I guess we did - we did answer the call to adopt and yes, I guess we DID go into this with full knowledge of his medical history and knowing that this first winter, especially, was going to be hard as his little body and non-existent immune system meets new viruses for the first time.
And, as we're slowly surrounded by a whooping cough outbreak that could kill him as we try to get his vaccines up to date with the CDC's schedule, and as I spend every illness sitting by his bed, obsessively taking his temperature (104.7 at one point last night) and calling the doctor and trying to will him better and healthy and wondering if this one might be the one that's more than the common cold that's going around (hello, influenza epidemic. Oh, hi, norovirus outbreak.), I worry.
I worry about him and his health. When do I call the doctor? The on-call doctor doesn't know his health history as well as our regular doctor....do I wait until morning? When do I go to the emergency room? Is that more dangerous for him there, with MORE germs sitting on every surface? How can I ease his suffering enough that he can sleep through the night for the first time in days?
I worry about his big brothers. Will they resent him because, once again, they're going to wake up to the news that he's still sick and we have to cancel our playdate or field trip again? Will they hold it against him that Mommy can't go with them on an adventure, but they have to go with friends alone while she sits at home, cuddling their sick little brother?
I worry about his little sister. She's so young, and we're no longer breastfeeding. Is she at danger of getting whatever he has? How can I keep them apart and keep her toys clean from germs?
I worry about his father. It's been such a busy couple of months with hard on-call shifts. Is it better to bring Theo into our bed and take the chance that his coughing and fidgeting (he doesn't relax when he's feverish) will keep Mike awake, or should I sleep out on the couch with him and hope that his coughing doesn't keep his siblings awake, just around the corner?
I worry about my own stamina. Can I make it one more night of not sleeping, with one more day of being covered in snot and being touched ALL.OF.THE.TIME (I'm not a cuddly person), and push through one more day of trying to do school and not disappoint the big kids, while keeping the house full of food and everyone at least in semi-clean clothing? Can I ignore the dust bunnies on the floor and keep the now crawling baby away from them, since she puts everything in her mouth?
And then the fever breaks and he seems to get better, and we chance leaving the house. With every bathroom break (it's unavoidable with 5 kids and freezing temperatures - you just can't let kids pee on the tree and/or change the baby in the car when it's this cold!), I wash wash wash his hands and then slather on hand sanitizer as we leave the bathroom. I read articles about the vaccination rates in Maine and the spread of previously eliminated diseases that could kill him if he is exposed and becomes sick (and that admonish me, as the parent of an immune-compromised child, for even thinking that I could leave the house and live a normal life), and I stress. About what might be in the air around him. About telling friends (and trying not to offend them when I tell them this) that we need to stay away for now, until I can get him up to date and healthy again. About his non-existent immune system already on overload and struggling to fight off what appears as sniffles in his big brother or his classroom friends. About the effect this will have on his siblings and their adjustment to our "new normal." About the inevitable "Well, you knew this was coming..."comments because, yes, we did know it was coming, but we didn't realize how stressful and scary everyday life would become.
My little boy is throwing all of my conventional parenting wisdom and previous experience into the trashcan, and it's a stress that overwhelms me at times.
We did *choose* this when we fell in love with a little boy from halfway around the world who needed a family.
And we'd *choose* it again, without hesitation.
But, sometimes, it overwhelms and crushes and sucks out your soul with every thermometer reading and box of kleenex and bottle of Purell. And you just want to cry, because no matter what you do.....nothing works.
His body may never be able to fight off the germs in the world around us....we just don't know. This may get better with time and exposure....or this may be our true new normal.
And I don't know how I feel about that.
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