Miracles of Blessings

Today was our big meeting with the palliative care doctor and developmental pediatrician.

We were a little anxious about it, and I felt like I was going to die getting there and back in such pain.  I still hurt so bad!  I can stand and breathe, and sometimes walk and breathe, but not much at a time.  And certainly not while carrying a toddler.

We got lots of good news today!

First and foremost, she finally hit the growth chart!  She is 21 pounds at 21 months, and we are thrilled.  This is huge!  It’s largely in part due to the ng tube, but if we can keep her drinking then maybe she can maintain the weight and avoid the gtube all together.  We are so grateful for the speech paths that have worked so hard with her these two years!

Secondly, her heart looks better, which is great news, and an answer to prayer.  She is on oxygen less and less, and even at school seems to manage her airway behaviorally – taking breaks and rests when she needs to do so.  She is still very easily fatigued, but they think it is muscle weakness from not having been able to do all her gross motor stuff all this time.  They think she could catch that up with more time and practice, and get stronger!  

How amazing is that?

We also got confirmation clearance to dismiss all the specialists now that we are focusing on her as a whole, and just let her have the time she needs to keep healing and keep getting stronger.  This is huge for us, in the context of the last two years, and means we don’t have to fight the ones who won’t listen to us or be confused by those only treating parts of her.  We could not be more thrilled!

Naturally, we took her to the temple to say thank you!

Barrett and Anber were at school, but the second graders also got a temple visit, so that was lovely.


It was also a special day because it was Kirk’s birthday.  He got new scriptures as part of getting baptized next week:


He also got a new bike, which he knew was coming because the second graders have figured out everyone gets the same birthday present all year long, and James Mission donated new bikes for all the kids’ birthdays this year.  We teased him about it all day, and finally just told him there are no new bikes in the house.  We obviously keep all the bikes in the back yard, and he knows that.  He ran outside, and there it was waiting for him!  


It’s a special bike for cerebral palsy, with a training wheel only one on the left side and a special grip that wraps his left hand to the handle bar.  He is so excited!
We love this little guy so much!


These children, all six of them, are miracles, and we are so grateful for them and for so many who have helped us gather our family safely in.  We love them!

Slip and Slide

Well, today was a disaster, if you haven’t already heard.

The illusive ice storm finally arrived.  I looked out the front door and saw puddles, so threw on my jacket to go clean the ice off my car for work since the road looked fine.  Except it wasn’t.

Everything was pure ice, and the moment I set even a toe down – I was even holding on, just in case – my whole body flew into the air, and I landed in the driveway.

My back hit the steps all the way across just under my shoulder blades, and my head slammed so hard on the top step that my glasses and cochlear implants flew off and I cut open the back of my head.

Centimeters higher and I would have hit the soft spots where the actual implants were, and could have spent the day in surgery having bone picked out of my brain.  Or I could have broken my back or been hurt far worse.  So while I am in great pain, I am grateful for the protection I did have and that it wasn’t worse.

I do have three cracked ribs.

I crawled hyperventilating to get my ears and glasses, and Alex and Kyrie who saw me fall went to get Nathan.  I made it to the bed where Nathan and Alex got me laid down and Kirk tucked me in while Mary held my hand as I fought for air and cried.  It was horrible pain.

I could not walk or breathe, and tonight it still knocks the wind out of me to try and stand all the way up, but I was able to move to my recliner to reposition and snuggle with my two kids who have finally outgrown naptime.


We watched Les Mis, which was their first PG-13 movie, but I convienently sent them out for snacks and drinks during the two not-age-appropriate-even-for-me songs.  They know the soundtrack already, except for those two same songs, so they loved learning the story and now love the songs even more!  That makes me happy.

I obviously couldn’t work tonight, so loved being home with my family, but obviously missed enjoying it much – other than the snuggle time with the children today, as they all got turns, but maybe that was the most important thing? I think yes.  I love them so much!

Nathan was amazing, as he always is, caring for me and the children on what was supposed to be his resting day.  I am so grateful for him!  Prayers for him, too, as he has such a burden of all of us!

Working to Rest

This morning was a hard morning to wake up, those long days that build into a long week.  The end of the week is always hardest, it seems.  I work every night this weekend, too, mostly so that I can meet my brother in Kansas City next weekend.  But I have the days off, and I am excited to spend some time with the children.

We had an interesting experience today, where Home Health showed up unexpectedly to pick up all of Kyrie’s oxygen equipment – based on orders from the pulm.  She has never had a pulmonologist problem, as her lungs are fine, but Medicaid made us go for him to regulate the oxygen.  We are glad to have an ENT now and the palliative care team, so we will manage the oxygen with our own equipment when we need to do so.  That means we don’t have to go to the pulmonologist anymore, which is very exciting.  It is so good to see her tube free more and more, ever so slowly, and we are so grateful!

I really, really hope we can figure out the swallowing and she can keep working at that, and maybe we can get rid of the feeding tube as well, instead of having to get the gtube.  She is working on it very hard at school, and we will see what the ENT says about her latest swallow study.  She can do it on chocolate milk pretty consistently, and thicker liquids, but I know she can’t live on chocolate milk!  Not yet!

Mary, on the other hand, could just live on chocolate if I let her.  That girl is ALL GIRL.  She is prissy, and starting to like boys already, and preparing for puberty faster than I can let her grow up!  She is so sweet, working on being less bossy (as am I), and doing well in school.  I am really proud of her!

Kirk is my other easy one, and for the first time the age gap between him and the older two is really showing.  He is still my little boy, while Alex is turning quickly into a grown-up kid.  Who knew there was such a big different between 7 and 9?   It’s a world of difference!  Kirk will be 8 in a few days, and baptized next weekend (not tomorrow).  He is super excited.

Alex is doing well, except more and more autism moments are showing up.  The gap between others and him guessing at what others want or need is growing, and that’s hard for him.  He tries so hard, but guess wrong, and then guesses instead of listening, and so it all escalates when he just needs to follow directions.  Except the directions have to be very literal and very specific and very concrete, or he misses it and goes back into guessing.

Anber is rocking it.  She’s a little punk at school sometimes, being loud and bossy and thinking she can be the Mary of her class, but she is so clever to figure all of that out.  Her tantrum days that were so awful are long behind her, and most of her crying fits now are the normal kind that any girl has from time to time.  I love seeing her smile and skip around and hearing her sing.  We fought hard to get to that space, and I am thrilled that she is happy!

Barrett is about two years behind emotionally, and about a year ahead cognitively.  That makes interacting with him tricky, because his head understands more than his little spirit can yet process.  He has come a long way from all he has come through, and he is working very hard on some specific behaviors related to expressing and regulating his emotions.  His biological mother told me he gets his temper from her, and now I see it in his face when he gets upset.

Late last night Nathan and I held council and discussed our next book, officially.  We knew what we had been prompted to write about next, and knew we wanted to use a similar structure as we did in Keeping Kyrie, even though it won’t be the same kind of book at all.  Then we identified the narrative arc of what story we will be telling (marriage), and then developed the outline of what we wanted included in that story and how it would fit into the (temple) pattern we wanted to use.  I am super excited, and today I was able to get the outline set up into the app that I use for writing the books.  Now we are ready to begin!  I am so excited!

Mostly, and more than anything, I am grateful for children who are healthy and happy, despite whatever challenges any of us still have or must always endure.

I am also grateful for little things that get us through those challenges and hard days, even like these shiny shoes given to me to help my feet feel better working at the hospitals!

New Hearing Aid

Today we finally got to go pick up Kyrie’s new hearing aid!

She even got a little stuffed bear who also has hearing aids!

We were prepared for her to be upset by the noise or the volume, but she was so excited!  She immediately started dancing, and it was so adorable!  She asked for Doc McStuffins to play on my phone, and so I turned it on for her.  She held it up to the hearing aid and said, “It’s working!”  And then held it up to the other ear and said, “Not working!”  Over and over she did this all through lunch even:  “Working!  Not working!  Working!  Not working!”   She really loves it!

She also loved the equipment case that it came in, full of the things we need to keep it repaired, working, and clean.  We also have batteries, which is weird after Mary and I are spoiled by rechargeable batteries on our ears.  But she thought the case was a purse, and she carried it out herself, all the way to the car!

It did not take her long to figure out how to pull it out and throw it, so it does have a clip that keeps it on her shirt, at least.  But I am glad it is her teachers at school tomorrow that will get to fight with her about it… except if the ice really comes, we will all be home together, and it will be me wrestling with her.  Natural consequences, I guess.  She will learn quickly; we just need a little practice at leaving it alone as she gets used to it.  It was naptime by the time her appointment was over, so only wearing it a short time and then waking up and being in the car to pick up siblings meant not having it again until back home, so that wasn’t very long at having any practice for a long time of just leaving it be.

That’s true for any of us, I guess, trying to leave things be so we can just feel better already.

I survived dead mom day just fine, without any dramatic incidents to share.  I was aware, and open about it, but maintained functioning and didn’t even cry very much except a little.  My heart was heavy, and I checked on my baby brother (who is two years younger and eighteen feet taller than me), but otherwise it was just a day.  I miss her everyday, so why worry about this one?  I’d rather remember some of the days on which we had so many adventures.

The children visited me briefly at the hospital tonight, not getting out of the van, but driving by for a moment out front just for me to tell them good night.  I was so glad!  We thought I was going to be stuck here all weekend, and that may yet happen.  But my supervisor here said the storm maybe won’t be so bad in our area, and that I can go home tonight instead of staying with “essential staff” as we had first planned.  That was a relief!  If we are all going to be cold, I would rather be frozen with Nathan and the children.

Well, frozen, as long as we don’t have to sing that awful Frozen song.

Almost a Holiday

So it may or may not be true that the kids tricked Nathan into thinking last Monday was Martin Luther King Day, and that they were out of school.  He decided to use the day to take the children for an outing.  They dressed up in their favorite minion outfits and drove to Bartlesville to sing at Musical Research Society.  They had a blast!





Wednesdays

I slowed down writing after the intensive effort of the book, even in my own personal journals, as if the effort of actually getting a book all the way to publication was so exhaustive that there was nothing left to write.

I was glad when chaplaincy training started, and writing assignments were given as prompts to my spirit.

Still, it was hard to write, and this morning I realized why.

I was walking from my car in the parking garage to my office at the opposite end of the hospital, feeling the unusually warm air blow through my hair.  This was significant, mostly because I actually have hair now.  I realized this yesterday when the office secretary found my old chaplain badge from my first unit of study, back when I got life flighted with Kyrie to Cincinnati.  There was almost no hair in that picture, as it was right after the second round of chemo.

Realizing that, and the hair I have now, helped me understand my hair really has grown back, albeit much thinner and finer.

Anyway, with my hair worn down today, I was enjoying the outside walk instead of going through the tunnels, and soaking in the sensory input of the warm winter morning before the ice-calypse arrives this weekend.

That’s how, right as I arrived at the hospital building itself, I realized that part of why I had struggled to write was because I wasn’t sure what the story was anymore.

I had so focused on writing the book, which is different than the discipline of writing such as I post here, and so considered the outlines of the next books, and our older children are getting old enough that I can’t just write anything I want about them, so our story has shifted.

It has also shifted because it’s not just about fostering anymore, and back to just my journaling rather than so many exciting adventures.

Nathan and I are okay with a little break from some adventures.

Realizing this was simply a shift, rather than a block, in writing, made it easier to come back without any pressure and just start writing.  I am grateful, even if the meta-narrative on writing isn’t as exciting to read.  I’m okay with that for now.

Starting fresh, then, would be about this very day, as I settle back into a journaling routine and just let words flow without all the formal writing.  Who know it was such a separate process?  Maybe Nathan and I have book-PTSD as much as we did medical-PTSD!

Today is Wednesday.

Wednesday is my class day in the chaplaincy residency program.  Instead of doing rounds and visits in the hospital, we all gather in a classroom near the chapel and spend the day together.  We take turns sharing verbatims from visitations we have done, or reflections on particular ministry experiences.  These aren’t just about learning the mechanics of how to be a chaplain, but rather is a very intensive group therapy session about our own sense of self.   Because it is our own selves that become the tool we have to use in our ministry, we work to increase self-awareness beyond just our own theology or background from our faith tradition.  It’s very raw, very difficult, very emotional work, and often unpleasant, except for the healing that comes.

Today was my turn for a reflection, and I wrote about Kyrie and our experiences with her palliative care team.  I wrote it before Christmas, but today was my turn to process my assignment with the class.  It took two hours to get through it, and I cried, and shared about my faith tradition’s theology of suffering: how we see purpose in suffering, not that we want it, but our understanding that we cannot fully experience joy without also experiencing sorrow.  It was very good for me, and very healing, and helped me process these personal issues so that when I am working in the hospital with families in similar circumstances, I will be able to offer compassion that is authentic but without interfering because of my own trauma with that experience.

Every day when I get off work, I rush to my car and race down the street to a different hospital, where I work until after midnight.  I always call Nathan on the way if I can, to touch base with him and FaceTime with the children, but these are stolen moments that go far too quickly.  It’s worth it, though, and holds us together if only in remembering we are priority to each other, no matter life circumstances.

My evening job is as a clinician, not a chaplain.  My job is to assess people who come in to the ER for suicidal or homicidal ideation, or because of drug or alcohol use.  I help them connect with community resources for outpatient followup somewhere, or do the work (which takes hours) of getting them in an inpatient facility for treatment.  If they need that but do not want it, I have to put them on a psych hold for the court, which is even more paperwork.  If they used so much that it is an overdose and they are not medically stable, or if they actually attempt suicide and so need to be hospitalized (gunshot wound, overdose, etc.), then I follow them in the hospital tower and monitor for safety while they are here.  There are also other in-hospital things I can do, like if someone reports to a nurse that they are feeling anxious or depressed, then I can visit them and assess if they are safe or just need support; or if someone wants to refuse treatment then I may assess for capacity to see if they really are capable of refusing treatment or not; or other cases cause changes in mental status, like urinary tract infections can cause psychosis in the elderly, that sort of thing.

It is very busy, and very fast-paced, and my time on these shifts flies like anything, and I am grateful.  I hate being away from home, but I love the work, and so I really appreciate being able to enjoy my work if I have to be away from home.

My chaplaincy work is Monday through Friday, plus one overnight a week (a twenty-four hour shift), plus a Sunday rotation (right now there are six of us chaplains, so I work every sixth Sunday).   My clinician work is five nights a week, but I can pick which nights as long as I take every other weekend.  That gives me date nights with Nathan, more Sundays I can be at church, and having afternoon church this year means I get to catch up on sleep after a week of working twenty hour days.  Well, as much as a girl can sleep in with six children at home!

My chaplaincy work will finish soon.  We are trying to decide when that is, but either in a few weeks or in May, we think.  I want to be home with Kyrie as much as possible, even though Nathan takes her to preschool three mornings a week.   But either way, I will finish chaplaincy about the same time the second graders get out of school for the summer, so that will be perfect.  I will be able to be at home with them during the day, do our homeschool and other routines that we do during the summer, take them on field trips and all of that, but then go to work when it is time for supper and bed and not miss too much.  That’s about as close to ideal as we are going to get, at least until more people buy books or someone will produce one of Nathan’s amazing musicals.

Then, in the fall, the house will be quiet in the daytime, and Nathan and I can write in the day while the children are at school, and then I can work in the evenings still.

I pretend as if our life has ever been that stable, as if we could ever predict even what tomorrow will bring.

We know nothing, that’s what we know.

Oh, and that I have hair again.

 

Schooling an Intelligence

Last night was a shocker, my second night off work in a row!  I am finally off orientation at my new job, and on a regular-ish schedule.  That means now I only have one Sunday as chaplain at Hillcrest every six Sundays or so, and only every other weekend at St. John as the ER counselor.  This is very exciting!   Not only did I get to hand out with the children all weekend, but Nathan and I actually got a date night!

I am loving this month in chaplaincy.  The Presbyterians have a nerdy thing called “January Series”, with a different speaker every day and lunch every day in January!  We get to go!  How crazy intensely fun is that?  Today was my favorite so far, with Reshma Seajuni, who wrote the book Girls Who Code.  She spoke about gender gaps and financial independence and doing what you are passionate about in life, rather than only what you think you are stuck with or don’t enjoy.  It was about technology, and about poverty, and about choices, and about teaching ourselves and our daughters how to progress through our full potential and enjoy life because of that.  I really loved it!

I also read an article, by Eugene Peterson, who wrote The Message – a modern translation of the Bible – and really loved it.  He wrote about poet John Keats, who wrote in reference to Shakepeare:

He believed that the only way that real creative will matured was in a person who was not hell-bent on imposing his or her will on another person or thing, but was “capable of being in uncertainties, mysteries, doubts, without any irritable searching after fact and reason.”  In this way, Shakespeare, the poet from whom we know the most about other people, is the poet about whom we know next to nothing.

This I loved, and it has sent my pondering about some of the lessons Nathan and I have learned in the last year about parenting, which, of course, teaches us more about our Heavenly Parents.

I got off work early today, and was to have a date with the children, but they were still in Bartlesville.  They went up to sing at an event there, and hung out with the grandparents after.

Finding myself with some rare alone time, I had a lovely study time while treating myself to my favorite salad in Tulsa:

Our computer has been in the shop for several weeks, and I am working from 7am to 1am, so I have missed writing, but needed to put these pieces down on digital paper because I am coming back to them.  The quote, I mean, and the patterns I am pondering, not the salad.  I will get a new salad next time.  Tonight I had a board meeting, but got that sacred time in between work and heading out again, and I really treasured it.

My most recent bloodwork labs came back really good, and I am off all cancer medicine except for estrogen because of the hysterectomy.  I am working out at the gym again, finally, and eating really well (even if I don’t get expensive salads very often!), and feeling stronger than I have in years.  I am so grateful!  My pain is even diminishing right now, and I am even off Alleve!  That’s how well I am feeling, finally, and I am trying hard to take care of myself so that I can continue to heal and get stronger.  My body is responding well, able to do more than I could in the last few years and even dropped fourteen pounds already.  Part of this self-care is going right to sleep on long days after two jobs, rather than staying up writing.  I miss writing more, but it’s good timing as the next book begins to unfold, and so it will all balance out.  It helps, though, to have the computer back, so I can write when I am able!

Oh!  One more thing!  On Sunday, I actually got to go to Relief Society!  It’s been ages!  I have either been at work, or assigned to nursery, or called out of Relief Society because Kyrie wasn’t breathing.  But it wasn’t my turn in nursery, and Kyrie was doing great on Sunday (until evening, and we had to put the tube back in), and I was off work.  I loved being in Relief Society, and I was so glad I was there the day they passed out the new books for this year!  I am studying mine, and especially excited because it feels significant to me that President Hinckley became the prophet right as I was leaving home in high school, and right as I left my family the Family Proclamation came out, and when he passed and President Monson was called is when I came back to Tulsa and then met the missionaries.  It’s like he’s the first one where I can see myself in the timeline, even though I didn’t get baptized in time for him, but I can still feel it and have a testimony of his calling during those years.  That’s powerful to me!

I also really love meeting the ladies in Relief Society, even though I have no doily skills.  They are all so kind to me, and encouraging, even when I get all snappity.  The other day all the activity days moms, many of whom don’t have to work, were all texting in group texts about their excitement about plans for Mary’s class, and my phone was going crazy.  It was rough for me because when I am at work and my phone goes off, it means someone has died or is near dying, and it was an extra chaotic night at work, and I just couldn’t keep up with both.  I felt terrible, and I grieve that I am not in a place to be participating the way they can, and it’s hard sometimes not to murmur about it.  But our family is doing our best, I know that, and this double job thing is only for a season.  My chaplaincy training will finish just in time for me to be home with the children during the day when summer comes, and then I can work in evenings after they have gone to bed.  We are all doing our best, but I do appreciate the Relief Society ladies making such an effort with me and being so kind even though I am not even there enough to know there names yet since we moved.

It’s also dead mom week, so I think I am a little bit heavy-hearted from that, as well.

My word of the year is Grace, though, and I am learning more and more about it, and love feeling it applied to myself, and love seeing it applied to the children, and Nathan teaches me more about it than anyone.  It’s such a journey we are on, and I am glad we all have each other, for sure.

Do you not see how necessary
a world of pains and troubles is
to school an intelligence
and make it a soul?
~ John Keats

Growing Boys

So, it’s happened.

Well, in a week it happens.

When Kirk has his birthday, I will have two eight year old boys.

And for most LDS families, that’s when they start Boy Scouts.


Yes, indeed, they turned eight just in time for the annual pinewood derby.

I am working twenty hours a day, and Nathan writes musicals in between wiping noses, so these boys will soon be visiting Grandad, no doubt!

In the meantime, I endured the first of many related trials:


Yes. The sewing of the patches.


Sewing on Cub Scout patches may be the most anxiety producing motherhood experience yet, other than that whole keep-the-blue-baby-alive thing we endured the last two years.


But, we got it done, three second graders and me, and my growing up boys are so excited to be starting scouts!


I will forever remember that the first day they wore uniforms, Kirk was still wearing penguin footies.