Invincible Summer

Here’s laundry my favorite peoples dropped off tonight:

They pretty much kidnapped our laundry one day this week, which was very kind, because they so want to help us get ready for Cincinnati and we don’t know how to ask for help.

What can anyone do, besides pray for our safe travel and the life of this little girl?

This week has been very extra hard, after some very hard months, after some very hard years.

I mean to say, we are doing our best, the kids are happy, and we are all surviving, but goodness.

The baby, the one in isolation so that she doesn’t get sick before surgery, got sick first.  We don’t know how or why, other than being in doctors’ offices.  We did have permission to go to sacrament if no one else held her or petted on her.  Otherwise, she has been in isolation.

We have been in isolation, except for permission for the kids to go to church, but they change clothes and get sanitized straight from the front door before even coming in the house.

Nathan and I have had to work because we have to work, but we follow the protocol upon arriving home, and we change and sanitize and do our best.

The other kids took turns at the grandparents one afternoon a week, to give them a break from being stuck in the house, but only there and sanitized again upon coming home.

Even that, which really is so little, is still so much isolation.

We have a gazabillion therapists coming in and out, but they sanitize or don’t have contact with the baby, and the baby stays out of that room.

It’s been tricky, and we are on the phone with teams of doctors every day.

The kids all have colds and ear infections, and the baby has been very sick – scary sick twice – and I have been fighting pain, and now Nathan has whatever the kids had.

We are exhausted, as is any family when everyone gets sick, and being sick always means more work somehow.  That’s how laundry got piled up, with everyone dragging out extra blankets, plus me trying to disinfect everything, and so when our friends tried to kidnap the laundry we made sure to send the non-sick laundry.  In the meantime, we did twelve loads three days in a row, just trying to get everyone well again.  All the bedding has been washed, all the stuffed animals washed, all the bathroom towels washed, and everything the baby touches – either in the washing machine (toys and clothes and blankets) or dishwasher (all her toys plus legos and blocks).

If that was not enough excitement, Nathan caught a big black spider which he was concerned might be a black widow, and with which the kids have been obsessing, and so we had to pay the pest control people to come out just to be sure – and be sure there were not more of them.  They did not find more, for which we were grateful, and said it is probably good we called because the neighbors next door had a problem but moved out so we should have our house treated before whatever is there comes in because of the cold.  Classy, spiders, classy.  No children were eaten by spiders, despite whatever adventures they may or may not imagine and share in Sunday school tomorrow.

It means that by the time everyone felt better, there was all this laundry to do, and all the dishes to do, and kids who needed extra snuggles and serious playtime after continuing their homework through the holiday break, while being sick, and while Nathan and I were not well.

They have been so good!  We have gone half a week now, with no screaming in our house!  It’s so exciting!  Everyone is so happy!  I mean, we have had squabbles and head bumps and other sad things or frustrating things or bossypants happening, but they are working on it, and even when sad or mad or not feeling well, everyone stayed calm and used their words!  We are so proud of them!  This is unbelievably huge, and has led to a release of tension and a relaxing that has helped tremendously.  They are starting to settle in as siblings in a new way, at a new level somehow, and it’s an amazing thing to watch as we all begin to feel like family.  It’s a very slow, very gentle process, and we are being careful to protect it and nurture it.  Time for this bonding has been an unexpected blessing of homeschooling.

We had more time to rest, though, as so many of Nathan’s students cancelled over the holidays, as did many of my clients.  It’s a rough time of year for budgeting when work doesn’t actually happen, especially to make a big trip, and especially when the real Spider-Man comes to take all your money.

I have fought with Medicaid over the upcoming trip.

In case anyone else wants to take a foster baby out of state for medical care, but without being life-flighted, you need to know that you must do the following:

  • obtain a judge’s signature from a county an hour and a half from where you live, twice, which means catching the judge on one of the two days a month they are actually at that rural courthouse;
  • reserve a room at Ronald McDonald House, just in case, but this cannot be confirmed until you get there because they require foster paperwork be delivered in person;
  • call the hospital to cancel the appointments that central scheduling made because the plastics wants to schedule their own appointments;
  • call central scheduling back to also schedule the other procedures, which may or may not be happening;
  • work on finding out who your child’s nursing case manager is for foster-medicaid, which turns out isn’t real medicaid, to get permission for the baby to leave the state as authorized by the hospital, and then call again to request the contract number for the pre-approved hospitalization, and then call again to request travel reimbursement only to find out that the pre-approved contract requires one parent to stay in the room, which means the state does not need to reimburse anything for travel even though it will take you two days to get there and two days to get back (regardless of the other parent staying with the other children);
  • call back again to complete the mileage reimbursement request in order to obtain your trip number, which you cannot get without your lodging number, which you cannot get because it requires lodging, which you cannot have because you are required (and would anyway) stay with the baby in the hospital;
  • contact Sooner Ride for foster transport support to get reimbursed for gas that way, only to be told you must call back three weeks ahead of the scheduled surgery date exactly, and not three days before that or after that;
  • learn that you have a $21 a day per diem food allowance for the trip for one parent, but not the baby because she will only be ten months old and not twelve months, so neither the hospital or medicaid will pay for her food, and since she is under one then the hospital must provide you with one meal, which means medicaid cannot reimburse you for any meals, not even the $21 per diem, which has now been cancelled since you told them you will be at the hospital with the baby rather than only transporting, because you forgot you are not really her biological parent and do not yet actually exist as a parent;
  • take the sick baby back to the hospital for more final xrays to see her airway placement progress since last summer’s jaw distraction;
  • take the sick baby to another hospital in another city for one more heart echo and chest xray which the first hospital did not know how to do;
  • schedule the baby’s monthly RSV shot which has to be done every 28 days exactly, which is today, but the medicine doesn’t come until tomorrow, even though it can’t mess up the next 28 days, which will happen in hospital where they can’t give the RSV shot even though that’s where and why she needs it;
  • one more round of bloodwork to check oxygen and carbon dioxide levels in the blood;
  • call home health to order four more tanks in each size;
  • explain to medicaid why your baby needs more than one cannula ever six months;and
  • check online for pulse-ox cord sales ($50 a piece), and then go back to the official gathering of supplies needed for five surgeries (one for Mary, four for the baby):  snuggle wrap arm restraints, tender care feeders, side tie gowns, extra blankets and burp rags for bloody drool (cleft palate repair and tongue-lip adhesion release), light and noise toys she can do without bending her arms or while she is restrained, enough tubing and stickers for oxygen there and back, etc.

Oh, and your pediatrician moved, just in case that’s helpful three weeks before surgery while the judge is waiting on the letter saying the baby needs to go in the first place.

In the meantime, there is a big meeting about how the baby will die without these next four surgeries, but that she is likely to die during the surgeries or won’t survive extubation if they take her off life support.

She’s not on life support!  I want to scream at them.  She might be, but she’s not today.

Today she is trying hard to crawl, from me to Nathan and back again, with whichever of us is behind her supporting her knees under her hips because she doesn’t have enough oxygen to breathe and crawl at the same time.

She can breathe and pull-up, though, and I think prefers it because of the positioning of her airway.

It’s better for her to crawl first, though, so we keep trying to prompt her because that’s what parents are supposed to do, when babies are doing normal things like trying to crawl and trying to pull up to stand.

I don’t understand, though, how these people can be so ready for this baby to die, and yet it be such a battle to keep her on the oxygen that improves her so dramatically?

We are pushed by the waves of the courts and the state while we wait for the adoption to finalize.

That’s our other stress: the week after next is termination pre-trial, and court will begin as it did for Alex.  If the parents win, they get more time to try, though they have no evidence of having participated in anything.  If the parents lose, termination happens immediately and an adoption date is set.  It’s not about us versus them, or about how we have fought to keep her alive, or about what kind of home we can offer.  Trial is only about whether the parents win more time or not, and it will be decided by a jury.  There is nothing about it we can do, besides pray.  We do that.

In the meantime, there is already a timeline in my head, more in the background that last year, and not as blinding as the year before that, but it’s still there:

This is the day Kirk’s family came for Christmas, the day she said it was perfect, and that she had waited her whole life for a perfect Christmas, and now she had it.

This is the day that Nathan and I went over to mom’s house to take down her Christmas tree for her.

This is the day that Nathan and Jessica beat her at trivial pursuit, and we ate those awful cookies she made up and forgot ingredients.

This is the day that Nathan and I walked the dogs over to her house, and she made chili to warm us up.

I know what comes next: the day Nathan and I felt super-prompted to go to the temple, and enjoy a walk, and spend a whole day together without work.

That’s the day we were charged up with strength and energy for what was going to become the next three years.

I remember what I was wearing, and what the air smelled like, and which clouds were in the sky.

Then comes the day after that when I texted mom to tell her that I wasn’t going with her to Joplin, that for some reason I didn’t want to go, that for some reason at the last minute I wouldn’t be in the car that day… the day the rain began to fall, and then turn to ice, and then slick down the roads for a jeep playing chicken with a semi until the whole mess of them piled up right in front of my mother.

That’s what’s coming next, that day, that cold day when the rain began.

I am functioning. I am going to work.  I am teaching the children.  We are playing together, even laughing.  I did a thousand load of laundry even when I could barely stand up from bone pain, and managed to think of asking for help with laundry when someone offered help in some way.  The boys have new church suits, and the girls have their hair braided, and everyone is clean and tucked in.  We are reading our scriptures, and praying, and had our family meeting.

But I know I’m going to drop the basket.

I know it’s going to knock the wind out of me.

I won’t fall apart, not like before, because you don’t do that with kids.

Or when it’s three years later, and you are supposed to be over it already.

I know I have slipped away from my friends, and I know I am okay with falling into sleep but cannot, and I know that I will be glad to be driving to Ohio – far away from that day, from that bridge, from that hospital.

I know that my words have gone because they are simmering in a pot that I don’t want to taste.

So I keep posting pictures, until words come back, and keep reading scriptures until songs come back, and keep laughing with the children until my breath comes back.

And when my friend brings my laundry, and gives me a hug, I fight back tears because it’s too soon and I might not be able to stop.

And when fighting back tears makes me need to write, I start with a long rant of all the surface things until I know my heart is safe enough to find words, until I know that I can write without drowning, and then ease into it like the first swimming pool of summer, until the cold shock is upon me and I just stand there waist-deep and raw, glad I jumped in but not going in any further.

Because what I can’t write about yet is how the day my mother was killed still replays in my head.

What I can’t write about is cancer, or how much it hurts my bones, or how we cannot sustain a nutrition program even though we are choosing wisely and have good food storage, or about how my body shuts down, or about how it sometimes stays alive to keep the baby alive, so neither one of us can die because we need each other to stay alive, or how ironic that is when my own body couldn’t keep any of my babies alive, so why should that be any pressure on this baby?  That’s healthy: she’s been with us her whole life, so I need to make sure she has some good issues to go to therapy with like the others, right?

What I can’t write about is this little girl, or how exhausting medical crises are, or what it’s like to live in and out of a hospital for nine months to keep your baby alive, especially when she isn’t yours, and what it’s like to sit in a meeting with people telling you she probably will die, or what it means to treasure every single second with her, just in case, just because, but all while fighting to make them “normal” seconds so that her life is about living and not about being sick.

Every single second I am looking into that baby’s eyes and pulling the other children close to me.  We are a miracle, this family, and I don’t want to miss any of it.  I won’t miss any of it.

But I don’t know how to talk about it, not yet.

I can only say what I know: that our family is well, even while we are sick; that we are happy, even while we learn, and that we smile, even while we cry.

I can say that I am glad it’s Nathan’s hand I hold through the night.

I can say that we still have hope, even when we know what despair feels like, the same way we know summer will come again even though it’s been three years since we felt the sun on our skin.

There may be times when we must make a courageous decision to hope even when everything around us contradicts this hope. Like Father Abraham, we will “against hope [believe] in hope.”  Or, as one writer expressed, “in the depth of winter, [we find] within [us] an invincible summer.”

Dieter F. Uchtdorf

Posted in Life permalink

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.


Invincible Summer — 2 Comments

  1. Someone in my ward linked to your blog over a year ago and I have been reading regularly since then. I check every day now because I want so much for you and that baby girl of yours to be ok. I wish I had lots of money I could give to help with the surgeries etc, and I hope you can adopt her soon! Just know that lots of us are thinking of you and your family and praying for you even if you don’t know who we are. Your faith is amazing to me. Both you and your baby girl have been through so much that I just want a happy ever after for all of you.

    • That’s so kind of you! I am glad it has been helpful. No worries – Heavenly Father is always faithful to provide sufficient for our needs!