He will wipe away every tear

Oof.

This post has been waiting under the previous few for a chance for me to sit down and write and think.

Reuben's seizures have been a moving target since they started going on ten years ago. We'll settle into a normal semi-predictable routine and stay there, usually for a few months at a time, and then...it will change! And we'll figure out the new normal. Sometimes these changes are minimal (seizures hit in big clusters every 4-5 days instead of every 6-7 days) and sometimes, like the fall after the girls came home, it's a much bigger shift, where we went from most of his seizures being weekly clusters of tonic/clonic seizures that usually started during the night time hours to a new pattern where the seizures were hitting at all hours of the day, and were hitting every single day. He regressed in so many areas during those months, and it was really hard to see the boy we knew slipping away between our fingers.

Late that fall we started medical cannabis and another pharmaceutical, and ended up with a beautiful month long reprieve (no seizures!!! Ca-razy!!) and then for the last two years have been more or less predictable.

Until a week or so before Christmas. We'd seen two or three days in the month leading up to it, but then, like a switch, he's been having more or less continuous partial seizures all day and most of the night. Sometimes they're punctuated by the bigger tonic/clonic seizures, but mostly he's just walking or sitting around all day having short little seizures. It's tough for him to even eat or drink because he often can't make it through the bite-chew-swallow without a seizure hitting, and some nights we catch as much of his chocolate milk drooling back onto his plate as he gets into his belly. Most of his seizures have been partial enough and he's got enough awareness of them coming that he can grab onto someone or something until it passes to keep himself upright, but some of them have impacted a broader part of his brain and he tumbles all the way down. He's wearing his helmet a lot more often, but despite that, has had three really good wonks to his chin since Sunday. The first we thought initially was going to need stitches, but it ended up being wider than it was deep, so we made it at home.

We've gone through so many thousands of seizures with this boy that most of the time we just cover them in stride like we do for runny noses and poopy bottoms. And then there are times when holding him through one of those seizures just cuts through me and brings me to tears. That dear, dear boy - so sweet, so isolated because of his limited communication, so isolated because of his differences - all the things he'll never have in this life because of his medical challenges - and so fragile. Living with a child with intractable epilepsy is a daily reminder that we can't take for granted any of the days that we have with any of those whom we love.

The night I started this post, with simply a title to help me remember, was one of those nights that I cried as I held him until the post-ictal stage of the seizure had passed enough that he could go back to sleep and I could head back downstairs. And as I lay there holding him, I thought of the truth of what John records in Revelation that "He will wipe away every tear from their eyes..." and recognized that in order for him to wipe away every tear, there have to be tears there to wipe away. As this (temporary) life makes me yearn for the life yet to come I find great comfort in this little tidbit of knowing that in the new creation there IS a place for tears over the heartache we have experienced in this life. We are not going to be emotionless creatures who don't care about the things that have happened. There WILL be tears. And then those tears will be wiped away "...and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away. And he who was seated on the throne said, “Behold, I am making all things new."

Nine months and counting without a pneumonia-related hospital stay

Mira still hasn't been hospitalized for pneumonia since last May! Yay! Earlier this week she went in for a short out-patient procedure to have her ears cleaned (TONS of wax!) and to have new tubes put in her ears. She handles being put under so well, and came home without any complications, good girl, AND with a new blanket!

 Yes. There really is a little girl under there! And, yes, she really has all the access she needs for breathing (see the photo below) but since it's been plenty cold up here in Minnesota and she doesn't wear a coat, lots of blankets and warm rice socks is her way to go.

The weird world of the digital era

Shutterfly sends these "lovely" memories periodically. This is what I got today:

Yes, I do remember that EEG, and no, I don't really need to relive it, but here we are...that was either Reuben's third or fourth EEG (electroencephalogram), and was done because we were still, over a year into it, nowhere near figuring out why he was having so many seizures AND  why his seizures were changing. It was right after this test, from which we learned nothing useful, that his neurologist suggested we do genetic testing and we learned that Reuben had ring (20) chromosome syndrome. So, yes, I do remember that time from eight years ago!

The other two that regularly come up over the course of the year are the ones from the week Matt's dad died and the ones from Reuben's initial hospitalization/epilepsy diagnosis. You realize that a computer is no substitute for the mind of a real, caring human being! 😀

Tsvetomira

Mira got some beautiful hair things for Christmas gifts this year. There's so little that she wants (nothing!), but gifts like this make me smile as I think back to a conversation I had with our Bulgarian adoption lawyer the week that we picked up the girls. Toni told me that night that she was glad that Mira finally had a family (after having a few other families commit to her and then decide not to follow through), and almost in tears she said that for Mira she didn't care if she ever learned to walk or talk or sit or anything - she just wanted me to make her hair pretty. Every time I brush Mira's hair, or put it up in braids, or even just throw a quick hair band in before we race out the door, I think of Toni. Toni passed away somewhat unexpectedly (but not entirely unexpectedly - she had a number of health complications due to a car accident earlier in life) a little over a year ago, and along with the smile, there's also a sadness that I don't get to send this photo to Toni! So all of you get to enjoy it for her with me.

I think I've written briefly in the past about what a great place Minnesota is to live if you have a disability. It is. We are self-employed, so have no employer through which we can get health insurance, so for years have independently purchased a high-deductible plan for our family (as in, we pay 100% of our health care costs up to the high deductible and then the insurance company pays 100% after that). That in itself always kind of feels like we're cheating since the plans come for one or two adults, and then one, two or three-or-more children. We have three-or-more. So that means we pay the highest possible premium, but it also means that for the last ten years we haven't had to jump into a higher bracket even though our family has more than doubled in size! Additionally, our four children with disabilities all qualify for Medical Assistance as a secondary form of insurance, so anything that our primary doesn't cover for them is covered through MA. This means that if those four kids have enough medical bills to meet the deductible before any of the rest of us need to see the doctor each calendar year, we don't have to pay a cent (beyond our premiums). Because it usually takes an average of four weeks for our four to reach the deductible, all the rest of us have eleven months of the year to go for free. (Broken arms, weird foot spots, ear infections, eye surgery - done.)

But that wasn't really what I wanted to mull over today, but rather something related. All four of the kids with disabilities, in addition to secondary insurance, also get some additional funding via a grant that we can use for disability-related items that insurance will not cover. This summer we learned that Mira, because of the highly medical nature and degree of her needs, qualifies for some extra funds that will cover the cost of paid nursing staff here in our home! Well, qualifying was a great first step, but it wasn't until almost a month ago that the agency we were paired with was able to find a nurse to match up with Mira. But we have one now, and she's been great. "J" comes three mornings a week to help with Mira's morning routine to free Matt up to get to his work sooner, and she's been able to add so much to Mira's life! Mira's cares don't take four hours of solid work, so J has time to do stretching, to get her more frequent baths, and to fix her hair (J's only child is a little boy who's not into having his hair braided, so now she has a creative outlet!!) Her son goes to school about a mile from our house, so she's able to drop him off before coming here, and we have the flexibility in our needs that when the kids in our district have off school, we just give her the day off, or have her switch to another day that week, so she doesn't have to arrange child care. It works well.

She's only been working with Mira for about a month, and only three mornings a week, but it has been so sweet watching the way she interacts with Mira. She will sing to her while bathing her, and even when she's filling Mira's med syringes and mixing up her feed solution for the next 24 hours, she'll bring Mira into the kitchen with her and talk to her while doing so. Yes, she knows that Mira can't hear her, but it's the overall attitude that Mira is a real person worth treating as such that matters to me. On the days when we're not really sure where Mira's at, it's so helpful to have someone who can listen intelligently to Mira's lungs and that that person knows Mira in particular and isn't just listening once every four months like a doctor does! J has also learned how to do some range of motion exercises with Mira (we arranged a single therapy session with Lori, Bobbi's PT who also sees Mira occasionally, so J could learn the specifics), and Matt has taught her how she likes her hands rubbed. Mira is one happy girl on the days that J has been here!

But it's been tough for me, too. *I* want to be the one who can devote hours of time to Mira. *I* want to be able to hold her and rock her and massage her tight muscles, and because she's my ninth child out of ten, I simply can't. I struggled with a similar thing when Reuben was three years old and we were considering sending him to a special ed preschool. I was a mom who home schooled her kids! I didn't want to send any of my kids off to someone else. I wanted to give them the best of me all by myself! It took realizing that even as a mother of *just* three kids, I couldn't match the student-teacher ratio that they were offering Reuben for me to be okay with having Reuben spend three mornings a week at school.

All of those things put together (and more) have put me in a place where I am realizing that although I've poured the last fifteen years of my life into this thing called "mothering" I'm not sure I really know what I'm doing! What IS my role as a mother? As with anything that I do in life, if I'm going to do it, I want to do it well ("Whatever you do, work at it with all your heart, as working for the Lord") but I'm not sure right now that I know what doing it well looks like, so I don't know how to tell if I'm doing well! What does it mean to do a good job at being Mira's mother? And not just for Mira, but for each one of these children that I have been given, because I realize (and this is nothing new), that what each one of them needs from me is different.

This isn't so much something particular to adoption as it is to being a mother in general, but I do think that being mother to children we adopted brings some of these things to the forefront of my mind. Mothering children with significant disabilities brings some of these things to the forefront as well. The whole goal of raising "independent, responsible, compassionate human beings who know and love Jesus" is a tidy package that just doesn't translate nicely to nearly half of our children! And the questions that our four bring to me make me look at the other six differently, too. My slogging through this over the last few months is likely in part why posts have been brief and only skimming the surface, and I think it's important that those of you who read, and have been reading know that life around here is more than just a series of happy snapshots. :) (Though a steady stream of those happy snapshots are definitely also part of our reality, too - don't get me wrong there!) But I'm definitely looking ahead to this new year as an opportunity for a revitalized vision and direction. It's been a goal of mine since September to find a day and a half or two day stretch where Matt and I can get away and have some focused time to talk about some of these things together, and it hasn't happened yet, but I'm still hoping! It takes a lot of coordination to get the two of us out of the house at the same time. 😊

Before and After

Well, the sprinkler systems behaved themselves, so surgery happened this morning!

Once more, here's Ebby before:

And this morning, all dressed up in his surgical gown:

Even though we're no stranger to it, there's still something tough about watching them put your little ones to sleep, and when they're so tiny, laying that limp little body on that big bed in that big room full of equipment and walking away is just hard to do.

He woke up screaming heartily, but fell right back to sleep on my shoulder for another good 40 minutes I'd say.

That gave me enough time to finish what I'd been working on in the waiting room...you see, we typically have our kids look in their stockings on St. Nicolas' Day, which is December 6th. When Owen and Leah were little we called it Little Christmas. I've cross stitched a stocking for myself back in high school, then one for Matt, then Owen and Leah. My mom had done one from the same series for herself and one for my dad, but since she's learned to knit, she let me have those two for Reuben and Rinnah (pick out the old name, add the new!) I managed to get one done for Krassi and Evania, and then I picked the name out of mine for Bobbi. I'm still working on Gloria's. Maybe next Christmas! But for Ebby I just took Dad's and picked out the name (but kept the "E") and was able to finish up during surgery this morning! Because of the surgery, we'll have the kids dig into the stockings tomorrow instead of today.

So now, all the stockings are hung by the gas fireplace with care...

As you can see, Gloria's using a blank one again this year, and Mira's still using a blank one (which we put some candy for me and Matt, since Mira's not much into candy, and neither of us have our own anymore!) By next year maybe I'll have Gloria's real one done, and then I can start in on something for Mira. I'm not quite sure what I'm going to do for her, though, because I've now used all nine that come in that series!! But seriously, that's pretty low on my Challenging Decisions list. I've got bigger fish to fry, and we'll cross that bridge when we get there!

All in all, Eben is doing quite well. He spent most of the afternoon sleeping on my shoulder, but perked up a bit around supper time and before bed. The eye looks pretty rough. But that's to be expected. There's a 20% chance that he'll need to repeat the surgery to get it just right (that seems high to me!), but we're hoping that we hit the 80% that are just right the first time.

Eben's surgery...as far as we know

Well, here we go again. Barring the unforseen (like last time, when we got a call the night before saying the surgery center's sprinkler system went off so everything was canceled), Eben will have his corrective surgery for his strabismus tomorrow morning.

It only took 14 months...

...but Bobbi's back up on the treadmill again!!! The recovery from this surgery is still progressing steadily, but it's been a MUCH slower process than I think any of us were prepared for. She's not very fast, but she's finally fast enough to be able to go at .6mph, which is the slowest speed that Grandma's treadmill will go. She managed five minutes yesterday, and today went for ten minutes total, though took a few breaks along the way. Her goal is to get back up to walking for an hour.

Because she still has issues with her legs crossing, and she's not fast enough to be able to correct as she goes (which she can do when she's just walking on the ground), Dad created a fantastic device that puts a board between her feet held in place by the uprights on the treadmill.

Bobbi doesn't like the sound of Daddy's favorite tool, the impact driver. 😁 Thus her goofy face! I tried taking a video, but made a joke, and she laughed and lost her stride and I had to rescue her, so no videos yet.