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. 😊