We just signed adoption placement paperwork for Kirk and Barrett!
Now we just wait on a court date to finalize!
My primary responsibility on an overnight shift, of course, is responding to pager alerts that let me know there has been a request for a chaplain. These are usually simple things like asking for a Bible or other kind of scriptures, to special moments when patients ask to be taught or to discuss something spiritual. There are lots and lots of requests for prayer, and I am often asked to provide a song or some kind of music as well. I attend all the extubations, when people are removed from life support, and all the code blues.
But this code blue isn’t for my baby, not today.
It’s my first time back in the hospital as a chaplain since spending seven weeks with the chaplains in Ohio, as we prayed for that baby’s life.
I have worked an ER shift since getting home, but that’s a whole different kind of busy.
But the chaplain shift is a long one of empty hallways, families with empty arms, and patients with hungry hearts.
When I am not getting paged to a crisis or a request, I do “random” visits that never turn out to be very random. While it is scary, at first, to just visit random rooms, the Spirit always reveals why I am there and what needs to be said and done.
I try also to use my time well, being a good steward of my family while away. When there is time I am not being paged, I work on homework. Last night I finished my evals, and wrote some articles, and practiced my next talk (which is already giving me hives). This frees me up so much so that I can really be home when I get there.
Being back tonight floods me with memories. I remember dramatic stories that landed patients in the burn unit, and dramatic farewells in the ICU. I remember faces of courage from the heart center, and the struggle for hope on the oncology floor. I think of people I referred to inpatient psych from the ER back home, and I think of those fighters on the physical rehab building who just want their lives back.
I look across the way from my office and see the women’s center, and think of the babies I held as they died, and the day our Baby Girl was born and expected to die but didn’t.
I will never forget that day, or the prayers I whispered with my hand on her tiny head, or the promises still to keep, or the helicopter I watched her fly away in, not knowing if I would ever see her again alive, not knowing I would bring her home in a car seat bed 51 days later, not knowing she would then only be home three weeks before I was taking the next flight with her.
She’s so big now! She’s doing so much! She’s as crazy as me!
Again, she’s been home for three glorious weeks, and today turns five months old.
Again, she is starting to struggle for air and fight to breathe.
And for some reason this morning, the music playing in the cafeteria happens to be the Beaches soundtrack, which I am not sure is entirely helpful.
I grieved my parents in this place, where I watched other families go through what my family went through when my father died, where I spent nights across the street from where I was told my mother expired, and in long, dark nights helping families as we eased their loved ones into death through the labor pains of releasing their spirits to the other side.
I will never forget this place, or what I learned here, or how I healed here.
I think I am more me, the me my parents knew long ago, and more prepared for work I will continue later in my church ministry.
I am more whole, more quiet, more soft-ish somehow.
I am grateful, so grateful, but I am also quietened.
I know the power that comes from seeking sacred spaces, from praying and caring with one’s whole soul, from witnessing the miracles of a body and spirit be stitched back together in resurrection – or the threads pulled loose like the strings of a crocheted sweater.
Oh, and my hair grew back!
A lot can happen in a night, or in a moment.
Every moment matters.
Each of us matters.
… it may be true that man is nothing in comparison to the greatness of the universe.
At times we may even feel insignificant, invisible, alone, or forgotten.
But always remember—you matter to Him!
… He has chosen “the weak things of the world [to] come forth and break down the mighty and strong ones” and to put to shame “the things which are mighty.”
… no matter where you live, no matter how humble your circumstances, how meager your employment, how limited your abilities, how ordinary your appearance, or how little your calling in the Church may appear to you, you are not invisible to your Heavenly Father. He loves you. He knows your humble heart and your acts of love and kindness. Together, they form a lasting testimony of your fidelity and faith.
… please understand that what you see and experience now is not what forever will be. You will not feel loneliness, sorrow, pain, or discouragement forever. We have the faithful promise of God that He will neither forget nor forsake those who incline their hearts to Him. Have hope and faith in that promise. Learn to love your Heavenly Father and become His disciple in word and in deed.
Be assured that if you but hold on, believe in Him, and remain faithful in keeping the commandments, one day you will experience for yourselves the promises revealed to the Apostle Paul: “Eye hath not seen, nor ear heard, neither have entered into the heart of man, the things which God hath prepared for them that love him.”
Brothers and sisters, the most powerful Being in the universe is the Father of your spirit. He knows you. He loves you with a perfect love.
God sees you not only as a mortal being on a small planet who lives for a brief season—He sees you as His child. He sees you as the being you are capable and designed to become. He wants you to know that you matter to Him.
May we ever believe, trust, and align our lives so that we will understand our true eternal worth and potential. May we be worthy of the precious blessings our Heavenly Father has in store for us is my prayer in the name of His Son, even Jesus Christ, amen.
Tonight I am doing my last overnight shift as chaplain at Hillcrest, officially completing my training I was asked by the church to do. I will have to write essays for evaluations (like finals) for both the VA and Hillcrest, and then I am finished…
Just in time for orientation in Salt Lake in October!
That was close!
I also took and passed finals for my summer classes, without getting to study or having any materials, and so got approved to do my comps in November. Then I will be done with my Master of Divinity degree, which is required for chaplains. I did in only two semesters by attending three schools at once and taking 12 graduate hours at each.
That was insane.
It seemed impossible when the church talked to us about it all a year ago, but now it is very nearly done! I can’t believe it! And we did it in a year like they asked!
Kudos to Nathan and the many family and friends who supported us, gave rides to our children, and generally tried to keep us sane during a very intense season in our lives.
I will continue my post-doc Jewish studies, but am very glad this extra piece is finished!
Well, finished if I can pass comps this fall…
But no more preaching for now… because talks at church don’t count, right?!
My brain is full of what I am trying to process: the new cerebral palsy happening in the baby is from a consistently low oxygen level in her brain. The heart issues come from the oxygen level changing all the time, so it can’t really adjust to how it’s supposed to be working. Oxygen, as it turns out, is just really, really important.
Also, my friend sent me this about shunts, which I am sharing here because I think it’s important for our loved ones to know… specifically for Kirk, we were told any severe headache with vomiting is an automatic ER trip to check the shunt:
Kirk, of course, also has cerebral palsy, and loves being a big brother to the baby and helping her do her physical therapy exercises. It’s made him work harder at his, and we are really proud of him. He works so hard, and has such courage, and he has a very kind and tender heart. We are very excited to be signing trial adoption papers for him and Barrett on Thursday, and can’t wait for their adoption to be final.
Tonight the kids worked so hard! I went through the clothes in the garage, sorting out clothes that won’t fit anyone here, now that we are done fostering, and pulled out the buckets of winter clothes that will fit the kids that we have now – our kids now. Then I got it in piles with the clean laundry they were putting away tonight anyway (pulling shorts out of the laundry to pack up for next summer as we went), and they got all their winter clothes hung up for me! Besides everyone needing a bigger size underwear, and with what we had already gathered last year and what friends got us at the weecycle sale last weekend, I think we are pretty close to set for awhile! That’s always a relief, and always such work. It was an amazing blessing to me to have the kids working hard on their own clothes, instead of me doing it all by myself. I really bragged on them, and told them how proud I was and how grateful I was for such helpers!
After dinner, we had an unexpected breakthrough with one of those helpers. I had said evening prayers with all the kids, and everyone was tucked in, and I sat down to rock the baby to sleep. I sang to her, loudly enough for all the kids, because I know they like it. I sang some primary songs, and songs my mother sang, and songs my father sang. I want them to know my mother and father, and singing those songs is one way to pass on their memory and give them their love. The baby went down easily, for which I was grateful because she was fussy today from not feeling well, and I slipped quietly out with all the kids sleeping.
Except Anber, who ran after me, and then sweetly whispered to me with tiny little hands signing while she spoke, Can I please rock, too, in the chair with you, please?
I almost cried! I have, of course, rocked her, and she was so very sweet to ask. But you guys, this is my little reactive attachment baby, who only screamed when she was the size of her baby sister, who arched her back away from us when we picked her up, who fed herself and burped herself before she was even one. She often lets us hold her, and often hides behind us or in our arms when strangers are around, and loves to cuddle now that she has been here two years.
But that’s the first time, do you realize, that’s the first time she has ever asked.
And I cried.
I scooped her up, and I cried like a baby.
And we rocked and I sang and we rocked and I sang.
I rocked and cried hot tears, and rocked some more.
Maybe, just maybe, this family really is working, and maybe, just maybe, we really are all healing each other, and maybe, just maybe, we are all learning a little something about what it means to love and to be loved.
Despite what reputation I may or may not have due to the nature of my work and my calling, sometimes I can really bomb a speech or a talk or a lesson. I know that part of the reason giving talks has been part of my patriarchal blessing and assignments since getting baptized has to do with it being a way for me to testify, to speak truth, to boldly declare hard things people do not always want to hear. It’s a heavy responsibility to say hard things or only speak truth when we are in culture of easy things that comfort quickly and support our lifestyle of sleeping through mortality. But I always pray, and fast, and read, and study, and memorize, and prepare, and then let the Spirit say whatever Heavenly Father knows needs delivered for that talk or lesson.
I’m still so very human, though, and very new at this, so sometimes botch it up pretty good. There was the time I thought I was supposed to talk for 15 minutes instead of 50 minutes. Another time I went over my time because at the very end suddenly it all got tied into the temple and my mind pretty much exploded in front of an entire ward. This last Sunday, in Relief Society, was one of those fails.
The topic was the Sabbath, and in my head my lesson made sense. It wasn’t a talk because it was Relief Society, so I had a discussion outlined. I was super excited because it was such a big topic at General Conference, and at Stake Conference, and the recent letter from the First Presidency, and we have talked about it during Sacrament meetings, and in Sunday School, and so everyone has been preparing and pondering and praying and thinking and making changes at home and with their families. I was so excited to bookend the year with another conversation about it, and see what was transformed and what happened in people’s lives because of this great experiment.
But nerd world was only in my head, and it was not a discussion kind of day, and my lesson fell flat.
It was really terrible.
Further, just as third hour was starting, one of my six year olds was brought in to me with a headache. Kirk has a shunt in his head to drain fluid off his brain, and so we have to take headaches really seriously – especially when it’s so bad he is crying. He is not much of a crier, and has endured a lot, so when something is hurting him, it must really be hurting. I got him in the primary room where Nathan was leading music, so Nathan could sit with him between times, and begrudgingly left him to go back and teach my lesson. That threw me off, for sure.
Then I had sweet volunteers to hold the baby while I taught, but she stopped breathing just as we got back, and was having some desats just as I started teaching. I couldn’t let go of her, then! I just started my lesson with her in my arms still, wondering what I would do if she stopped breathing in the middle of my lesson. But she kept breathing again, though her color was still off, and so I was able to hand her off to Sister Hood. Sister Hood and Sister Hansen are my backups lots of time because they are nurses, and so ready to do chest compressions or something if they had to, and know how to position her for breathing best and have experience with it. I am grateful they are in our ward. Marama has been trained by us, too, but she already had another commitment. I thought how very true it really takes so many of us to raise these kids well, or keep them alive at all!
Anyway, it all happened at once, and so while my lesson was prepared, my brain had very little recovery left in it, and I felt badly that the lesson went so poorly. I will try to do better next month, and have a better backup plan ready. Those who did share really brought the Spirit with their testimonies and encouragements, and it was a tender and humbling moment for me, to feel my own testimony grow of why we need each other so much and why we are organized the way that we are.
Kirk and his head seem okay for now, though he is grown enough and is old enough that we may have to replace the shunt soon, so we will just keep an eye on him as he keeps growing.
Baby Girl is doing well, despite her desats. Home health showed up finally, and we got a good company who can do everything, which Cincinnati and OKC had said we wouldn’t be able to find. They can even do her feeding tubes if she regresses that far, and I am so relieved we can just work with one company on all our supplies. She is now on a monitor 24/7 that transmits all her stats, both for her low oxygen and for her high heart rate (a sign her heart is working too hard again to help her breathe, so much that she is frequently in vtach and now her cardiologist is being moved up to her primary team from her secondary team). It’s an example of needing the fundraising for supplies, as she goes through about six “light stickers” a day, even with washing with alcohol to bring the sticky back like they said, but medicaid pays for four a month (because they are $50 each). It also means she is getting sicker, and we will have to go back to Ohio soon, and so are trying to raise funds for that as well.
Mostly, though, we are glad to get this monitor because once the apnea monitor goes off that she has stopped breathing, it’s already too late. We need to know before that. We want to keep her alive, but also want to prevent the cerebral palsy from getting worse due to lack of oxygen.
So thanks, home health guy!
She’s averaging 86 right now, which is what keeps the doctors all squirmy while different ones argue over how low is too low for too long before we have to do something else. I don’t know the answer. I’m just the mom of the baby with oxygen so low she is getting cerebral palsy, which tells me it would be time to do something else. But I’m not the doctor. I’m just a feelings doctor, and my feelings are overwhelmed and anxious.
Hers goes on her big toe or her foot, and under her sock (because otherwise she would go through twelve to fifteen a day):
When she is in bed, we run the cord back under her blanket and a small pillow so that she can’t get to it there, either, because she is fast and hates that thing!
Then it comes out the bottom of her crib and the monitor sits on the dresser, where it can charge and stay plugged in while she is sleeping, but is portable during the day while she is awake or if we have to go somewhere.
She doesn’t mind too much, as long as it is out of her way and doesn’t slow her down, but she does not like it at all. She knows it is there, and I am convinced she is frustrated because she enjoyed those three weeks without it as much as we did. I wonder if it reminds her of the hospital, or if she knows it means she might have to go back soon. We fight for as normal as possible, though, so during her time she is supposed to be at her incline position, we make sure she has her favorite toys and can play, even though obviously she doesn’t always get so much fun stuff in her bed!
Nathan had his first experience today, feeding her the extra cord in the way. I told him to add two or three more cords, plus a handful of IVs, and then try feeding her! It’s really hard! But he was sweet to be a helper – he got all the laundry done, and the kids helped me get it sorted, so they can put it away after school. I am proud of them! They are growing up so fast! They have a good example in a father who helps and works so hard, even when he knows it’s going to end with a baby sneezing out sweet potatoes all over him. He’s not a fan of fluids.
It works the same in her swing: we run the cord behind her, where she can’t get to it, and then she is fine to just play and swing and do her normal things without it being in the way… except we can’t undo the annoying feeling of it wrapped around her foot, and it makes her crazy! She is so patient and brave, though, and Nathan gave her another blessing, because what else can we do?
She is a joy, for sure, and her smile is full of hope and light, even if her skin is starting to just be lacy again.
When I was taking those pictures, I managed to catch this one, right before sneezed again. There are two things I want to point out: one is that one of her eyes isn’t moving right, which can happen with what she has, and we are watching that closely as well. The developmental specialist and the eye doctor are looking at it again next week, to be sure it is even working.
The other thing I wanted to point out was her tongue, which I almost got a picture of if you look closely. You can see the tongue lip adhesion here, where the tongue graft (which is completely tied in her case, so that’s another surgery later) is stitched to the inside of the bottom of her lip. That’s called a tongue-lip adhesion, and part of how she can eat with the cleft palate valve bottle.
Or eat keys, which she sometimes prefers.
While all that is going on, Nathan got his pulse ox as well, from a different company:
This guy is having oxygen issues, too. He is already on a cpap at night for not breathing at night, but it’s not solving the actual oxygen issue. His lung function is okay, but we can’t quite figure out why his brain and heart aren’t getting enough oxygen or why his readings drop so very scary low. We are trying to rule out other things as well, like they changed his allergy medicine, and he’s trying out the same food regimen as I got for the cancer stuff, and doing what the nutritionist says. Hopefully we will get better answers and more information soon. It’s hard sometimes, because some people don’t understand at all why oxygen is such a big deal at our house, others don’t understand but are supportive, others are supportive and helpful, and some try so hard to be helpful it’s just overwhelming and not actually helpful. Monitors, though? They are helpful, but only in tracking the scary numbers, not in fixing them. There are monitors everywhere now!
Because of who their father is, our kids end up caroling A LOT, at all times of the year. Usually I schedule it as part of Family Home Evening, but they are always working on something with him. I love it so much, excepting the part about it taking a good half hour just for seat belts at each stop. The toddlers are finally old enough to “mostly” be able to do their car seats themselves, but with the new booster seat law, we have three seats across now and it is a tangled mess trying to get kids in and out. That’s where we have too much helping, too, with kids who all want to do each other’s car seats but not their own.
Focus on yourself! We remind them.
Focus on yourself! They shout to each other.
Work together, we say.
We did it! they shout.
That’s when it’s worth it, when they are proud of their own problem solving.
Because we are a family who can do hard things.
It’s pure madness, this chaos, and the level of noise that six kids under age seven can produce.
How to monitor what is loud and what is just numbers, what is chaos and what is just kids, what is being overstimulated and what is actually too much sound for any human child to produce… it’s all sometimes tricky to figure out.
The one thing I do know, though? That there’s nothing like sticking a light to a baby’s foot to make her start kicking it when they said she couldn’t. Kick, baby, kick!
Anber and Barrett had their first homework due this morning!
That’s some crazy preschool.
But it was super fun to do with them!
Barrett’s favorite color was blue, favorite food was carrots, favorite place was outside, favorite hobby was trains, and he wants to be a “cooker chef” when he grows up!
Anber said purple was her favorite color, “salmon chicken” is her favorite food, water is her favorite place, reading stories was her favorite hobby, and she told me “Heavenly Father said I am a doctor when I grow up, after I am a missionary and a mother.”
There is only one thing that will get me out of bed at 4am On a Saturday to get dinner in the crockpot and pack a picnic:
It’s the only Saturday we both have off this whole month and for many more weeks, so it meant we needed to go while we could, even if we had other ideas of what might be fun or resting-ish or even important. This is most important, and Heavenly Father provided a gas card for us (for giving my colleague a ride to the lecture the other day), so we are set for a free outing day to our very favorite place.