The App is Back!

Did you know we have an app?!

It’s been down for a few months while we changed sponsors and waited for upgrades to speed up the more than FOUR THOUSAND posts!

If you have an iPhone, you can search the iTunes Store for “Housewife Class” and find us there – and this hilarious screenshot of Kirk from our last song video:


Then click the download cloud like on other apps:


Here are the device compatibilities:


Welcome back!  We missed you!  It was quiet while I was in residency and writing all these books that are now getting published, but it’s good to be back – and the updated app is super exciting!

Thank you for all the support!

(Turn off app notifications in your phone settings if you don’t want updated when I get off work at midnight!!!)

Barrett’s Book

Barrett has two books, actually, but the first one was published today!

 

 

It’s a book for siblings of medically fragile or other disability children.  We worked so hard on it, and wrote it so carefully, and he is very proud of himself!  We are so excited!

 

 

It will be on sale until it drops on Amazon in about six weeks, so grab it now!

We also have a new package deal for all five of the books the children have published so far!

CLICK HERE to get the books!

 

So Many Surprises

My first surprise today was a toddler crawling up into my lap in the middle of my scripture study.  It seems it was her turn to show me how to make “K’s for Kyrie”.

She also drew this, and said “it is Grandma and Grandad, and Papa and Mama, and Mary and Alex and Kirk and Barrett and Kyrie and Tuffy and Neitzsche”.

Our next surprise was as we got ready to leave for school, and a giant crow flew into our van!  It scared them to death!  I have never laughed so hard!   I’m thinking Birds for the next family night movie?!

After drop off, Mary and Kyrie went with me to some meetings for them… Kyrie was still writing, and put the pencil in her mouth just to wave.  She is such a funny little duck!

We also got another picture of one of our books helping another child going through what we endure, and we are so glad the books are helping so many!  You can see all of our books HERE, and you can also donate there to have books donated to special families who need them!

Mary and Kyrie played house at the doctor’s office while we got paperwork signed.  They are so sweet together!  I love their relationship and watching it evolve as they grow.  It’s pretty special.

We got to say goodbye to the fish at our pediatirician’s office, crossing one more thing off our palliative care bucket list before we head to Cincinnati Children’s this weekend.

Mary finished her homework, and Kyrie took a breathing break on the scale.  We got her weighed in at 22 pounds today (with her clothes on), at almost 30 months old.

I wish I could take a nap with her!  But we have to get the paperwork to the attorneys, and get her to her bed, and me to work for the swing shift after a full day of appointments.  We were all worn out!

Except Barrett, who was hungry and waiting for lunch!

The other three are almost ready to come home from school as I say goodbye to these three before leaving for work.   Me working evenings doesn’t go as smoothly now that half of them are in school all day, and I miss them.  When you have a little medically fragile one like Kyrie, you learn not to take a moment for granted and that sacrifices to be together mean everything – one battle at a time.

Miracle Delights

This morning the children got doughnuts before school, mostly because they were ready on time and we had a coupon for free doughnuts.  Also, because I am a pushover.


The children in school got their school breakfast, too, so I hope they could still function in class!

It made the “home-children” a little crazy!


But we had another food surprise, too!

It was another miracle for us, at least in our little world. 

 We have been paying for Kyrie’s feeding tube formula for two and a half years at $200 a week. 

 It has been so hard, and one of the examples of medical hardship that people don’t even realize. 

(Yes, we know about TEFRA.  No, we don’t qualify.  Crazy, right?)

But today the doorbell rang, and it was a box of her food with a letter from Medicaid that we won our appeal!  They are going to cover it for her from now on!  This is a huge help – like a mortgage payment every month – and we are so grateful! 


I totally cried! 

Many thanks to those who helped us keep her fed thus far! 

We will not forget such kindness. 

And a billion trillion gazabillion thanks not only to our pediatrician, but to all those who work in that office documenting and faxing an inordinate amount of paperwork to make this happen.


The other miracle to this was that the doorbell didn’t wake Kyrie from her nap.

Which is good, since I didn’t have any extra doughnuts!

It was disappointing only in that we expect our copy of Kyrie’s new book any day now, and so we jump anytime the doorbell rings.

But Mary and Alex kept working, and we plugged through the rest of our day.


Nathan worked on a new musical all morning, so I surprised him with some homemade pizza (since he and I didn’t eat doughnuts, of course).


We were glad to have a morning at home before another busy week.  Tomorrow it’s attorneys again.  Wednesday is IEP’s for Alex and Kirk (still no update on Mary), and Thursday is therapy morning for everyone.

We did get our new video edited, so that was super fun, and a friend fixed our van!  This is a relief, and means at least our van is good to go for Cincinnati.  Everything counts as we prepare, and we are grateful things are falling into place.

And by that, I mostly mean our courage.

And a little hope for a girl sleeping with oxygen in the other room.

New Video: “Work To Do”

School has started!  That means having a handful of little ones with reading logs everyday plus homework sheets, all while real life like chores and learning to pick up after themselves and work together nicely is still an ongoing lesson.  It’s so much work everyday, just to keep things running, us functioning as a family, and the children progressing as individuals.  Here’s a song about the after school routine we do to help make it happen!   They sing “Work to Do” as a parody to the song “You Make My Dreams Come True!”

Sabbath Sweetness

These boys are now able to fill out their tithing slips all by themselves these days, thanks for book sales and autographs, and I am in awe of how fast they grow up!

This girl could go to Sacrament meeting with us this morning, but not stay for nursery since surgery is next week:

These girls were pretty in pink today, and I love how they always want to match but also express their individuality.

The big kids play legos while the little ones nap, and they love this time so much that they don’t play legos on other days so that playing on Sunday is okay.  They are so funny!  I’m glad they worked out on their own how to navigate the Sabbath, and I love their solution.

They are good at being super quiet, because Miss Thang already wakes up cranky enough from her naps.


Tonight at dinner was extra fun when Papa taught them how to play “bones” like in Mary Poppins!


Nathan can play anything!  I knew he would be excited for the rare treat of having ribs for dinner.  I didn’t know he would turn them in to instruments!

I’m kidding.  His “bones” were carved wooden instrument ones.  But it was a fun way to teach some anatomy!

We also filmed a new music video tonight, so that will be fun to edit and release tomorrow.   

Everyone was so tired tonight after our big week, which made date night with Nathan easy since they all fell asleep so early.  

I love that they are so excited about school and look forward to Monday mornings when they can go back.  This is such a good thing!  I am relieved we are back home and in such a good school.

Today was a good resting day, which all of us needed.  There is much to do before we leave for Cincinnati, but we were able to play yesterday and rest today.  Tomorrow will care for itself, and we will get through one piece at a time.

But today was a sweet time together, and I am grateful.

Operation Barrett

Operation Barrett is working.

For the first time ever, at least since we got him at age 2-almost-3, Barrett has gone five days without a screaming baby fit – in which he usually screams obscenities and threatens our lives and beats on at least one of us or the walls or furniture, often quoting domestic violence things he heard screamed between his parents when he was a preverbal infant smaller than Kyrie.  It takes so long to heal!  

But we are seeing progress!  There is hope!

This is huge.

No tantrums.  No threats.  No screaming.

For five whole days.  Go Barrett!

I know it will happen again, but I can’t tell you the miracle it is to us to have our first days in two years with no screaming.

We are so proud of him!

He has come so far.  We thought he would be starting Kindergarten with Anber, and even delivered his school supplies on Meet the Teacher night.  But the next morning was one of the worst episodes in a long time, and we decided to pull him instead of setting him up to fail – or to be labeled as that kid.

Instead, we have kept him home for another year of homeschool.  That gives us more time to work on attachment, and daily opportunities for one on one time and positive reinforcement of positive interactions.  It has already been so good for him.

In context, fetal alcohol syndrome makes it really hard to regulate emotions besides any trauma he experienced or witnessed.  That, plus multiple foster placements before we ever got him, makes it hard to develop simple skills like self-soothing, much less more complex ones like self-expression.  It has challenged us in parenting, as the screaming fits are so exhausting, and because the consistency of limit setting is sometimes painful.  He has missed activities, sat through parties, and missed meals – not because we wouldn’t let him eat, but because he literally wouldn’t stop screaming long enough to eat the meal prepared for him.

But in doing all those things the therapist promises will provide structure strong enough to prove to him that he is safe, we are finally to a new phase of nurturing.

With attachment issues, the normal things you would do to nurture a child often have the opposite effect.  The intuitive, gentle, and affectionate things you would normally do may actually be perceived as threatening or dangerous to these children. It has taken him two years just to realize he is safe, and that we really are going to keep him.

It took Anber two years, too.

It probably took all of them two years, but starting that two years with toddlers is rough.

Really rough.

And, what made it even worse for Barrett, is that right after he was placed with us…. Kyrie was born… and lifeflighted with me to Cincinnati… and left with Nathan, the two of them strangers and the both of them overwhelmed and me as the disappearing mom right when our attachment was most important.

So while we take attachment very seriously with all the children, Barrett had some unique struggles that have needed immediate attention as our hospital crises days are fewer (until next week again, anyway).

And he was finally responding enough by Spring that we spent the whole summer swaddling him.  

For realz.

Every time that little mouth opened to scream threats and nastiness, and every time those feet kicked us or walls or the other children, and every time he threw things instead of doing what we asked, we stayed calm and scooped him up and swaddled him like an infant.  We carried him to the rocking chair, rocked him like a little one, and sang him lullabyes until he calmed down.

Sometimes that took hours.

He spent some of the summer on a cot right by our bed, so that we could tuck him at night and scoop him up in the morning just like we would if he were an infant (which is where his behaviors showed he was stuck developmentally).

We slowly grew him up this summer, so that he made it back to his bunk bed but we still swaddled him, and then him swaddling himself in his own bed, and now he just sleeps with the blanket like a baby blanket.

He feels pretty special about it.  I told him the blanket was my mother’s.  He is awfully proud of that, and recognizes the gift that it is.

During the day, we put him all the way back to Kyrie’s schedule, until he knew (like an infant) that his needs for food and sleep and playtime and baths and toileting would be met.  As behaviors diminished over the summer, and so told us he felt safer in one particular area, we grew that up to more developmentally appropriate-ness all the way to even being done with afternoon naps but able to maintain his behavior.  Now we are swimming in these positive interactions, and are in a better place – him and us – to better deal with those more challenging moments.

We have worked so hard, just with Barrett on these attachment pieces, and he has come so far!  He uses feeling words now, and communicates what he wants to express without just talking incessantly or giving up and screaming.   He takes turns, and asks for what he wants or needs, and is the most gentle and protective brother of Kyrie.  I’m so proud of him!

We have loved him for so long, and it is lovely to also enjoy him more now.

We have even been able to process with him more directly about what it has been like for him to be “the other brother” while his sisters and brothers have all these medical crises and special needs.  He wants to write a book about it, and I think that’s a great idea.  He’s not the only sibling out there of special kids!  He has always been very smart and very verbal, and so it is delightful to watch him express himself successfully and be so much happier as he navigates relationships with those around him.

I am grateful for so many who have loved him well, both before he came to our family and those who have helped welcome him home.  He is amazing, and having people care for him and the other children is such a huge blessing to all of us.  I am especially grateful to therapists and teachers who support him so much individually!

We all need therapists, really.

That’s what my friends at work were reminding them.  I don’t know if I was extra crazy at work, or if my blogs have been too depressing, or if the vicarious trauma of knowing our family is just still that acute.  But they did an intervention, all of them cornering me to “encourage” me to see someone because of all we have been through.

That’s when I knew they had read the book, or part of it, anyway.

I assured them I have the best counselors, and that I am a fan of therapy, and that writing is part of my coping skill.  

Hence the book and the blog.

Additional support for our family is another good thing about palliative care for Kyrie: we get extra support from counselors and chaplains, plus all the good doctors and parent groups and sibling groups.  I am so grateful!

And good support for my marriage, which is not in crisis, and I know our relationship is strong because we serve each other and pray and read our scriptures and keep our covenants.

I can’t imagine enduring the last five years with anyone other than Nathan, and I am so glad it is him that I married.

Anyway, Nathan and I were talking about all these things when I got home from work at midnight last night.  I got ready for bed and was thinking of all the therapists I had: the ones that were terrible, the times I was forced to go, and the ones that were dangerous and destructive.  I thought about the amazing ones, the ones that helped, and how much better a girl feels after doing that kind of intense work.

Also, ladies, I did CPE, which was totally therapeutic, as any chaplain will tell you.  It’s super intense group therapy for a year, eight hours a day for five days a week, with serious and in-depth individual work daily.  I specifically did that after my parents died because I knew that I needed help.  It was amazing, and I am grateful for my church calling me to that program so that I had such an opportunity just when I needed it.  That was so good for me!

I also thought of Israel, going the first time after my father died, and then after my mother was killed, and throwing stones into the Sea of Galilee.

I will do it again, when Kyrie dies.

Someday.

Not today.

That’s not today, and nothing I am worried about today – not because I am evading such discussion or avoiding the topic, but because it is not this season. If anything, Kyrie has taught us how to be present in the moment.  I don’t want to miss out on anything, and these days are for singing and giggling and chattering and wearing mismatched shoes.  They are for celebrating the healing hearts of big brothers, waiting everyday like Ruby Bridges until big sister gets to go to school, and playing in the cooling autumn wind after homework is done.

Tears are always a river that take you somewhere, but I promise I am not drowning.

Except in sticky faces and muddy handprints, which is good and right and as it should be.

So when I laid down last night thinking about all the therapy I have done, and all the things we are enduring now, and how it will all someday mean something… I slipped into a sleep filled with dreams about therapy.

Therapy with Jesus.

I mean to say, the real deal, with angels and the Savior, and all kinds of dirt being dug out of me.  I was stripped raw, and talked for weeks of time in one night, and all my stories threaded into stars, and all the pieces of me were reunited in public for a sweet blissful moment.  Such peace flooded me, poured into me and around me, the way it feels when you slip down into warm water on a late night.  I imagine it’s how fish feel.

I slept unusually late this morning, which makes sense after two weeks without a day off and getting home at midnight-thirty and having to be up at six in the morning everyday for as many appointments as we had this week.

But when I woke, I was refreshed and healed and strengthened and nourished as if I had been in vacation for years.

Therapy vacation, like a cruise line for the weak and exhausted and worn out.

And like Barrett, I was okay for another day.

But they that wait upon the Lord shall renew their strength; 

they shall mount up with wings as eagles; 

they shall run, and not be weary; 

and they shall walk, and not faint.

          ~ Isaiah 40:31

Changing of the Tube

This week has been insanely full of appointments.  The school needed Alex to have a new autism note from the doctor, and Kyrie had her pre-op checkup, the girls needed well-child visits that had been rescheduled from when Kyrie was in the hospital last time, and there were IEP advocates and attorneys and group home meetings and today was Kyrie’s GI surgery follow-up for her first g-tube change. 

A gazabillion thanks to Nathan’s parents, for whom we are so grateful especially this week.  Because of their help, we somehow managed to accomplish all the extra appointments while maintaining the regular appointments of all things therapy.

So much therapy.


I think the only meeting we missed was Mary’s IEP meeting, which we got notice of last night after I was already at work and which was scheduled for today – at the school in Tulsa.  That didn’t make any sense, and there was nothing we could do about it for Kyrie’s surgery appointment.  I emailed them back this morning to say we could not meet them today and would not meet them in Tulsa, but would be glad to reschedule for Owasso.

It’s been a week since school started, and they still haven’t let Mary in class.  They have posted notice for an interpreter job in Owasso, so that gave us some hope.  We even suggested they use TSHA right away for substitute interpreters while they try to find one to hire – but they have not responded to us on that, though everyone else who talked to us said that was good Owasso was working it out.  But I guess they haven’t, and Mary still waits.

Today, though, she got to play chess with Grandad after her homeschool work was finished!  This is a special memory for her, as it was a huge part of her biological grandfather’s life and something passed on to her.  She has been learning and studying chess for about a year, and slowly realizing there is some strategy involved.  Grandad is an excellent tutor!


In the meantime, today was the first day for Kyrie to have her g-tube changed.

Or, in Kyrie world, another day to play at the “doctor playground”.


We got to wait in the same room, so she knew where all her favorite toys were and read to us the same books we read to her last time.


We chanted:

Who gets a new tube?

You get a new tube!

We talked about taking her tube out and putting a new one in, and prepared her as best we could.  

It doesn’t hurt her, so much as it is one more time she is having to lay there while other people do things to her body.  She protests that, and I am respect that – am even glad, maybe.  It means she still has fight left, even when she is so good as to lay very still while we get it done as quickly as possible.

Here is how we do that (skip the rest of this blog if you are too squeamish)…

First, the tube has to come out.  We do that by using a syringe on the side of her tube, which is a different hole than where we put her food in, to draw out the water from the balloon that holds the tube in place.  This makes it easy peasy to slip right out.


Except when it slips out, that means there is an open hole from her stomach.  Her orange juice from breakfast went everywhere!  We had to catch it with some gauze!


Next, they put in a special tube just long enough to measure if she has grown and to determine what size tube she needs now that she is all healed up.


This also gave us a good look at her stoma without the tube in the way.  It looks great!  The circle around the hole is where granulation tissue has healed and doesn’t need medicine anymore, and the tiny bit of granulation right by the hole got new silver nitrate today.  Some say it burns, but it doesn’t seem to bother her at all.  I am relieved about that!


Next, we check the new tube before putting it in her.  We want to be sure the balloon works and isn’t defective.  Here’s a great picture we got of it, so you can see the top part that is on the outside of her belly, and the tube that goes through her stoma, and the balloon that holds it in place against her abdominal wall.


Then we use the syringe to pull the water back out of the balloon, so that the tube will slip right into her stoma easily.


Then we hold it in place while using the syringe to put the water back in the balloon so the tube stays in place.


Once the new tube is in, we plug in her extension set (same one we use to feed her) to make sure it is working.


We were so nervous going in, but it was super easy!  We both did it in the office with the doctor, so now we both can do it if there is an emergency or something goes wrong and it ever comes out.  She was very proud of her new tube!


Yes, I know she was only wearing one shoe.

I have no good explanation for that.

But she was also wearing two pairs of sunglasses, if that makes up for it, because she thought she deserved one for taking the old tube out and one for putting the new tube in.   Smart girl!


Many thanks again to Nathan’s parents, who shuffled children for us, and got three kids though therapies this morning and half of them back to school while we played g-tube.  Not only that, but the parents stayed long enough for Nathan and I to go on a date!  We got to use a gift card to go out to lunch, and enjoyed a hot meal without children.  It’s been ages!  We are so grateful!  We really appreciate the support and help of his parents.

I left for work while Nathan was passing out popsicles to the gathering crowd of children, but not before Nathan laid a blessing on my head promising help and rest and comfort.  

I drove to work singing along to hymns he has recorded for me without instrumentation (easier for my cochlear implants to understand the words so I can learn them).

When I arrived, one of the security officers I work with often brought me money from their office to help for Kyrie.  Then we got news someone has arranged to fix our cars (our van is overheating easily and the car I drive to work has no air conditioning).  Then a physician I work with ran into me in the hallway (literally) and said our book (I am assuming Keeping Kyrie) was amazing, and here are some gift cards for lunch on the road for our trip.  By the time I got up to my office, I had an email on my phone that Medicaid approved the contract for Cincinnati so her hospitalization will be covered, and we had enough from fundraising to pay the difference.  I also had an email on my work computer that my FMLA had been approved for the entire month since documentation showed she would be in recovery and then back for more procedures.  I couldn’t believe it!  I won’t be paid for all that time off, but they will pay me for two of the weeks through the leave sharing program.  All of this was such good news and such relief to me!  I was so grateful!

We have used the last of the fundraising money to get Kyrie’s immediate supplies, so that is done. We will be staying with a ward family once we get to Cincinnati (the Ronald McDonald House only can house families of four, not eight), so we have a safe place to be.  Our van will be safe to drive to get there.  The two weeks I will be paid for being gone is just enough to cover the mortgage.  These are huge blessings, and much relief.  Miracles to us!

Now we just need gas and hotel money to get there and back.  We are so close!  We leave a week from tomorrow.

Kyrie needs her hearing aid fixed, and I need to pack the children, and we need to exchange oxygen canisters.  But other than that, we are almost ready!

At least, as far as the physical piece of getting us there and back again.

Emotionally, that’s different.

Except we have hope for an easy peasy visit, getting in and out of there quickly.

She’s as healthy as she’s ever been, right?

And as fiesty as ever, for sure.

So we’re golden.

We have to be.

Instead of being afraid, what I think about is how the atonement is like my spiritual g-tube.  

And how the Holy Spirit is like the water filled balloon that keeps me in place.

And how the love of my Heavenly Father is the water carried inside.

And how sacred ordinances in holy temples are like that extension set that connects me to the nourishment of covenants.

And how prayer and scripture study are like the tube formula that keeps her strong and full of life.

I teach her this, and hope that it means something someday, somehow sinking in like a flood of truth through one more hard thing.

And maybe hoping there is time enough for the layers to sink in as she grows in wisdom and in stature (Luke 2:52).

Smiles to Go Before I Weep

I was fuzzy when Nathan tried waking me this morning. I got six whole hours of sleep, but felt like I could have slept for weeks more.  Working evening shift is a lot harder when your children start school and have to be ready by the clock and you don’t get to see them later in the day.  

That with working every other weekend begs the question of when am I ever going to see my babies?

I got to today!  Well, some of them.

While Kirk went to school and Barrett had an entire one on one day with Nathan, I took the other four with me to Bartlesville.

I dropped off Alex and Kyrie at Nathan’s parents while I took Mary and Anber to their well child appointments.  Having birthdays within a week of each other means they always go together, and their appointment had been rescheduled from when Kyrie’s g-tube surgery happened unexpectedly six weeks ago.  I was glad to finally have them declared perfectly healthy and wonderful!


They also got their homework done while we waited, so that helped things along.

Then I dropped them off to have lunch with the others while I had more group home meetings.  We have been working on this for almost a year!  I can’t believe it!

I also got to take Kirk’s CP and Me book to his caseworker at DHS and the workers who helped us with the adoption.  That was pretty special.  I wished the boys were with me, but it was good they were where they needed to be… part of the normal and settling that comes after foster care, I guess.  But we sure do love those ladies who have cared for so many children.

Then I picked up Alex and Kyrie, to take them to the pediatrician.  Owasso says that our nurse practitioner notes, and the assessments by the psychologist, and the assessments by the therapists, are not enough for him to have an IEP for autism.  He also had to have a physician note.   Frustrating he had to miss a whole day of school for that, but we got it done and he was so well behaved and I was glad for some special time with just him.  We had a good day together, and he made some special Grandad memories today with the dog walking and eclipse models of the morning.

(I did take his picture, but he was moving so fast that it was blurry.)

Kyrie, however, was not impressed with being awakened for a doctor visit.  She even took her clothes off to have a showdown with me, but I told her she was welcome to be naked if that was her choice.   She called my bluff, and marched into the clinic with only her shoes on!  

I managed to get her gtube pad changed and get her in a clean diaper before our name was called, but in we went with me carrying her clothes behind her.

She was cranky about taking her shoes off to be weighed, and then wouldn’t pick them up to carry them to the room, and then wanted to get measured on the wall like at the GI doctor instead of on the table “like babies”.  I normally could have redirected all that a little more, but Alex was with me and already wandering off so I had to keep up with both of them – which is almost harder than when I have all six together!

Once we got past all those demands on her compliance, however, she settled down.  Alex did a great job distracting her with some block games while we waited, and I squeezed some gtube formula in her to help cheer her up.  The best thing about a g-tube is how easy a snack is on the go!

But she isn’t gaining weight.

In fact, she is losing weight.

And it’s super frustrating.

But when we went to her GI follow-up a few weeks ago, they increased her g-tube volume because she had lost weight then.   And since that, she has stopped eating as much by mouth, and consistently stopped eating dinner all together.  We have to pump in those additional calories, but it adds even more volume which means continuous feeds overnight.  

She also has a runny nose, which started the night after the children had their first day at school.  That’s how fast she gets sick. And she has never eaten well when she was sick, because she has no room in her airway for congestion, which makes eating ever harder.  So everything is a battle quickly.

Except it seems to be a normal kind of cold that isn’t actually getting worse – which is huge for her, and the second time she got a cold and didn’t have to be hospitalized.  That’s great!  She needs some good germs to help her build a good immune system that’s stronger.

But it has to be gone by Cincinnati.

That’s what we talked about with the doctor today, over all the noise of Kyrie and additional comments by Alex.

(That’s the hardest part of being a Deaf with cochlear implants mom.  I can’t hear over their shrill little voices.  It makes appointments like these hard, and causes all kinds of in-law confusion when it’s family dinner night.  It’s exhausting.)

Here’s what I posted on social media:

Sometimes you just need a heart to heart chat with your doctor about more surgeries, and fighting for your life, and trying not to die. Sometimes you just need someone to take a minute to listen, and to care, and to tell it to you straight. Sometimes what makes you strong is having a say in the few choices you can make about your own body, even if you are only two. Sometimes all you need is a little hope to have a whole lot of courage.


I wrote that because it’s true.

It’s true whether you are two and chatting with your doctor, or forty and chatting with your friend.

I cried today.

Most of the time, I can focus on my mom jobs and do whatever is next on the list so that I don’t have to worry about how sick Kyrie is (because it’s a good day, right?) or how much there is to do or how impossible it all is.

But moments like in that picture, or a quiet moment with a friend, and suddenly the whole house of cards falls inside me and tears pour out of my eyes even though my stoic face is still determined.

Sometimes I am afraid, too.

I am not afraid about Kyrie dying.  Maybe I should be.  But I have promises, and I believe in those.  And if there is anything I have ever done right in my life, it was doing right by her.  I haven’t missed a moment, even when that meant huge sacrifices for me or our family.  I don’t mean I want her to die, or that I wouldn’t be destroyed by it.  I just mean it does not scare me.  

I have looked that in the face for two years.

And it has scarred me, but not scared me.

I haven’t taken a moment for granted, not one moment.

What I am afraid of, and maybe self-centeredly, is the same thing I have always been afraid of: that I’m not good enough.

You’re such an amazing mom, they say.

Why, then, I argue, is my Deaf daughter still waiting to get into school?  I am Deaf!  Why can’t I fix it for her?  How can it be 2017 and we have to fight this hard for an interpreter?

You hold so much together, they say.

Then why are we five days into the new school year and Kirk still doesn’t have new glasses?  I counter, discounting that I followed up on the referral earlier this morning.  Why have those six sets of intake paperwork been in the floorboard of my car since April?

I couldn’t do what you do, they say.

Like spend every evening working away from my children and still not have any idea how we are going to make a thousand mile trip next week?  Or get home again?  I don’t think I can do what I am doing, either. 

You are doing so much, they say.

Not housekeeping, I think, as I look across at my little ones’ mostly-adorable efforts at their chores.  And I don’t even know why the Bartlesville house hasn’t been mowed.  How did that happen?  I need to call them.

You take such good care of them, I am told while people pat me on the head like a puppy.

Yes, like the days we finally eat lunch around two o’clock, or last week when Kyrie grew out of her last pair of shoes, or this week when Barrett managed to cut his bangs three times.  Three times!  With scissors!  Where did the child get scissors?  What kind of lack of supervision is that?

I’m glad you finally settled down, they say, as if my family isn’t a cloud of chaos that could stand against any Oklahoma wind.

How do you do it?  I get asked.  Every day.

I do it by getting up in the morning.

I do it by trying again.

I do it by forgiving, by letting go, by consciously increasing my love for them.

I do it by stepping up into whatever is next instead of sitting down.

(I do it by not having television in my house.)

I do it because I understand that even on the hardest days, even when it feels like I am not enough, on those days I still know the atonement was enough.

And if the atonement was enough, then that means I am exactly right.

Not finished.  Not without mistakes and failures and weakness.  But exactly right.

It’s kind of mind-blowing, actually, if you think about that for a while.

And understanding this perspective of myself, through the lens of a how a Heavenly Father sees me, helps me see the children like that, too – exactly right.

It’s kind of a bold way to live, a bold way to love, and it kind of makes you gutsy, and it sort of changes everything.

Because then everything – especially the impossible – becomes an act of faith.

Because it’s not about big things.

It’s about small and simple things that add up to become great things.

(That’s progression, do you see?)

And it’s about building some mad skills for delegating and discerning where you can use help – like having the grandparents take the girls to use our salon gift while you take the other two to the doctor, so that your back and fingers are saved at the same time as you knock out two other appointments.

And look!  They are lovely!

Here’s Mary’s fancy hair:


And here is Anber’s fancy hair:


Kudos to the grandparents, who helped so much today.

I tried to arrange a visit with Mary’s mom while we were in town, but she never responded.

I missed Kirk and Barrett’s grandmother’s funeral because our new phones weren’t set up with notifications.  I was mortified.  I felt terrible.  We thought it was going to be last week, but never heard, and then got the message today when I went to post school pictures just before leaving town – but Kirk and Barrett were at home with Nathan.

Fail.  Big fail.  Their biological families were gracious about understanding, but I cannot undo that.  And I will never forget it, that day we missed a grandmother’s funeral.

On the opposite end of the spectrum, I scored three play sets of different figurine type dollhouse things today when a friend was selling stuff.  This totally adds to our Christmas stash, and I am excited to find the perfect surprises for the girls.  We already have a similar thing for Barrett, and know what we are watching for to give the two older boys.  We have almost finished Christmas!

And the coolest piece?  When Nathan went to pick it up, they also gave him a trumpet!  That’s what Kirk wants to play because it’s the only thing he could do one handed!  I don’t know if that family knew what a big deal it was to give us that, but it was huge.

What a relief to have Christmas presents almost done!  First world problems.  Relief from full blown Mama panic.

Also, the best thing for Mama panic is hugs, and I got plenty of those when we got back home.

Mostly from Kyrie, who was suddenly nice to me now that other children had my attention.

And because exhaustion.  

You know the toddler is tired when she crawls up and falls asleep on your shoulder like she used to do when she was only a half-pint. 

And I am tired, too, with miles to go before I sleep, and smiles to go before I weep.