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.

About Emily

I am a member of The Church of Jesus Christ of Latter-day Saints since 2009. I serve as a Chaplain, and work as a counselor. I got bilateral cochlear implants in 2010, but will always love sign language. I choose books over television, and organics over processed. Nothing is as close to flying as ballroom dancing - except maybe running, when in the solo mood. I would rather be outside than anywhere else, especially at the river riding my bike or kayaking. PhD in Marriage and Family Therapy, and currently doing a post-doc in Jewish Studies and an MDiv in Pastoral Counseling. The best thing about Emily World is that it's always an adventure, even if (not so) grammatically precise. The only thing better than writing is being married to a writer. Nathan Christensen and I were married in the Oklahoma City temple on 13 October 2012, and have since fostered more than eighty-five children. We have adopted the six who stayed, and are totally and completely and helplessly in love with our family. Nathan writes musical theater, including "Broadcast" (a musical history of the radio) and an adaption of Lois Lowry's "The Giver". He served his mission in South Korea, has taught song-writing in New York City public schools, and worked as a theater critic for a Tucson newspaper. This is not an official Web site of The Church of Jesus Christ of Latter-day Saints.


Smiles to Go Before I Weep — 1 Comment

  1. wow..I had to comment because THIS touched me so much.. but I literally have only damp eyes and prayers.