Our family has been doing the #LightTheWorld Challenge, with guided ideas for service in preparation for the Christmas holiday. It’s been good for us, given a new way for us to experience service as a family, and been a way for us to share online – not in a show-off kind of way, but in a testify kind of way, for our friends who don’t always understand (or agree with) our faith tradition as mormons.
Today’s challenge is about “healing the sick”, and that seems a little funny when I spend my days at the hospital already. It could mean all kinds of things, but it will for me mean being more present in my work, and more focused on the needs of others in my work rather than only what is easier for me. It’s a tricksy thing to be a chaplain, when hundreds of patients could use all the time you have, and wanting to give so much but also being taught to pace yourself. These are lessons I need at home as much as at work, so I am sure that is part of why I have been assigned this role.
It’s a fine line to care well for six little ones who could use up all your time and energy easily, when you are also supposed to be caring for a husband and a house and yourself.
Our house is hilarious.
For those who don’t know, here is the house story: we have a five bedroom home in Bartlesville that we are trying to sell. We loved it, and it was close to Nathan’s parents, and it was near half of our children’s bio-families, and the school was excellent.
But we did not have work.
For some reason, in Bartlesville, no one would come to Nathan’s events. Or any community events. It’s weird. They, as a community, complain about there not being anything to do, but no one comes to events. They don’t go to the symphony, they don’t go to community center events, and not to fundraiser events. Nathan is a theater man, and it’s hard to do theater without an audience. It was heartbreaking, because we had big plans for Bartlesville. Really big plans. Theater big plans.
Besides this, I was working for a counseling agency through which we had brought a satellite office to bring better quality care to the Bartlesville area. I loved that company. I missed a lot of work when Kyrie would be hospitalized out of state, and they were very patient with me, in part because I was with them from the beginning, and in part because that’s the kind of company they want to be. But for me to be off work also means being away from active patients, which is a tricksy thing because I want my patients to have good care, so I was keeping a low profile and not adding new patients until Kyrie was more stable. As these patients got better, I did not replace them with new patients. The agency told me to take my time, because they understood Kyrie was more important than work hours. In the meantime, the governor slashed budgets for mental health care, limiting the number of hours I could work and how long I could see my patients and all kinds of things, and it was really gross. Then I got a text from HR that I had been deleted from the files because I was too expensive to keep on books without me seeing more patients (even though I was not being paid and had already lost insurance benefits, obviously). They said I could come back when I was ready, but who wants to go back after getting a breakup text? I had worked there almost eight years, so I am glad it was a smooth transition, anyway, and it coincided with my having to go back to chaplaincy residency, anyway.
That left us in need of work, and an hour away from the hospital where my chaplaincy residency was. We also needed to get Kyrie closer to the children’s hospital for emergencies, and specifically felt prompted that a time would come that we would not have 45 minutes to get her to the hospital in time to help her breathe (which has since come to pass, so I am glad we were close). The final kicker was that we struggled to get Mary a certified interpreter for school, but did not want to send her to the Deaf school where she would be gone from us all week. They had not let her read her scriptures, or journal, or keep any books with her, and she had been exposed to some rough stuff on the bus – not to mention trying to build attachment with a child adopted from foster care while sending them away for most of the week. It just wasn’t right for our family.
All of this meant that we had almost two weeks to move, with no warning at all. There was a sign language immersion elementary school in Tulsa near the hospital where my residency would be, and we had two weeks to find a house in that district so all three second graders could go to school together. The down side was that it was clear across town (by the river) from the deaf and communication disorders preschool where the younger three need to go (Happy Hands, which is in Broken Arrow). But we could drive the preschoolers, while the second graders had to live in the district to get them all in there together.
That gave us two weeks to find a house and move.
And so we did.
There were three homes: one was for sale and over three hundred thousand dollars, one was for rent and not finished or safe for the children, and this house that we moved into just in time for school to start.
It’s so tiny!
We had to move the children into triple bunks and put most of our furniture in storage so that we could fit into this little house.
Now, when you walk into our home, you almost don’t have room to get in the front door. Our dining table fills the entire front room, squeezed in between the piano and the china cabinet. The buffet separates it from the kitchen, which is full of food storage shelves. The third bedroom has been transformed into a “play room” to be sure the children have enough play space, but it’s small with a dresser for the children to each have a drawer for underwear and sock, plus two shelves of board games and books and papers that have been barely unpacked but not exactly put away yet.
Because life happens.
We have squeezed as many of the baby’s medical supplies into the tiny laundry room as we can, between the backdoor and the dryer that doesn’t work, and her oxygen concentrator is wedged between the piano and the pew next to the dining table. That pew seems covered in clothes all the time, because there is no place for winter hats and gloves except the window sill, and we have the children lay our their next day’s clothes before supper each night so that we are ready when morning hits so quickly for so many of us sharing one bathroom!
The buffet has our tiny Christmas tree that Nathan made on it, plus a trashy tray of plastic silverware and paper plates and cups since our dishwasher doesn’t work, either. There is a box of whole grain goldfish and the last of a bag of skittles, left from Alex’s baptism, and loose papers that look messy but include their daily chore chart and sticker chart for good behavior because there is no where to hang them up. There is a mattress box between the cello and china cabinet because we are waiting on one more piece to put that one away, and the floor is covered with toys and books because Kyrie is at that two year old stage where she likes to pull everything out and carry it around but can’t quite put it back exactly yet.
There is also always, always food on the floor under our table because Kyrie can’t always swallow, so she often sucks the flavor out of her food and then just drops it. We are training her to put it back on her plate or give it to us instead, but she’s not quite there yet. She also just starts throwing food when she is done, if you aren’t fast enough moving her plate when she says she’s finished. So we sweep, and the second graders sweep, but we can’t always keep up with her every second.
So this house? Not my favorite season of living, and we all feel a little crowded. But we are safe, and warm, and in the right school district. I am close enough to my work that I can run to the school when I need to, or meet Nathan at the hospital if the baby has an emergency, or be home quickly when work is over and it’s my turn to pick up children from wherever. The rest will work itself out over time.
Moving unexpectedly, not having work for six months, and all the extra medical expenses took it’s toll. I can’t imagine how hard the last two years would have been if we did not have the counsel we do to be prepared, to have food storage, and to use our resources to provide for our family.
And the community? So many have been so kind and helped since first being flown to Cincinnati with Kyrie, and our battle to keep her breathing ever since. Last night, friends from Owasso just randomly showed up at our house with a box of meat, and two sacks of clothes to pass on to our children. Someone left money on my desk at work before Thanksgiving, and I used it to buy the extra supplies we needed for Kyrie’s tubes and things for their school. We raised two-thirds of our goal for our medical fundraiser! Yesterday someone gave money to the bishop to give to us, and it was exactly what we had prayed for that morning for the next doctor appointment. Another friend brought us dinner last night, and it was so good! Kirk has glasses again, and Mary has new batteries for her cochlear implant, and we are almost on our feet again.
We have won other battles, too, through prayer. We won an appeal with home health, and got more tubes and tapes covered by Medicaid, and that’s approved for the whole next year! We also won the appeal for Kyrie to get her RSV shots all winter and Medicaid pay for that. Home health also finally won the appeal to adjust how many tubes and feeding bags we get each month, so that we aren’t having to re-use supplies and can keep things sterile for Kyrie so she isn’t re-infecting herself. These are huge things! Life-saving things!
None of this is just about being in crisis today. It’s about long-term plans for caring for six children with special needs, including one in ongoing medical crisis. That’s why Nathan and I focus on “seed” projects that keep earning money while we work on new projects, like the book we wrote. It will keep selling, even though we aren’t writing it anymore, and we will work on new things in the meantime. Then those things will also keep earning money on their own, while we are working on new things still. It’s always going to take extra projects to pay for all the services and things they need.
But we do regular work, too, because the every day needs are real! Nathan got lots of copy to write from the catalogue he used to write for all the time, to help them during their busy holiday season, and he provided for us in that way. He had a reading for a new musical, sent in some new plays, and has a musical being produced in Philadelphia next year. He also gets royalties from songs he has written ages ago that are often used in choir competitions, so it’s fun to see them all over YouTube. Besides that, his violin album on iTunes is still selling, and that helps a lot. He’s working so hard!
My chaplaincy residency goes until the end of May, which is perfect timing for the children getting out of school.
But I also start a second job today with a second hospital near our home. It is also very close, and actually just down the street from my residency, so that makes getting there from one job to the next super easy. This job is a counseling job, doing what I used to do at the ER on weekends in Bartlesville. It will be most every evening, plus a weekend rotation, so even when my residency finishes in the Spring, I can still be home with the children during the day when they get out of school. It’s perfect, and Nathan and I will finally have insurance again. This is a huge relief.
It will also give us access to a gym again, for the first time in three years! That’s exciting! I don’t know yet how to make time for that to happen while both of us are working so many jobs and taking turns with the children, but it’s a start. It’s perfect timing, especially since I almost have my hair all grown back out since the last round of chemo, even if it’s not as thick as before and much more relaxed and a whole lot more grey.
That’s our life here, and how we found ourselves in what the children call “The Little House in the City”.
I like being by the river, and I like being close to work so I’m not away from home just because of being in the car, and I like having my children in the school that is right for them.
We are a little crowded in this house, but it’s been like camping, and an excellent experience for attachment. That maybe has been the best thing, and maybe why it was our season in this little blue house. I will forever be grateful for this place for that, no doubt.
But regardless, the point is that I feel that in some ways it is me who has been healed. I mean to say, our family has been healed. By our friends, by people from church, by so many in the community who have supported us and helped us in so many ways. I am grateful, and have felt lifted up in these darkest hours of our life together. There have been angels amongst us, and I will never forget it.
I will try, today, to find some way to bring “healing” in some tiny way to someone else, because that’s the challenge for today.
But I will know it’s possible because you have done it for me.
That’s how we are angels for each other, maybe, in this season as we herald the Savior’s birth.
“Hark!” the herald angels sing
“Glory to the newborn king!”
Peace on earth, and mercy mild –
God and sinners reconciled.
Joyful, all ye nations rise!
Join the triumph of the skies!
With angelic host proclaim,
“Christ is born in Bethlehem!”
“Hark!” the herald angels sing,
“Glory to the newborn king”.