Sorrow and Joy

We could never learn to be brave and patient , if there were only joy in the world- Helen Keller

I’m sitting in the kitchen on a hot June night.  It’s a typical evening.  Marvin is yelling at his video games.  Cary Lynn is snoozing.  She’s been on sleep strike for 5 days and it finally has caught up with her.  She sounds like a big bumblebee.

I’m hoping that I can finally write everything that has happened since December.  Every time I sat down to write a post I either started to cry or have such vivid flashbacks I get physically ill.  But I can’t pretend away the last six months.  They stare at me in the face every time I look at my daughter

It started in December.  She was more lethargic.  She started to swell.  We went to doctors, pulmonology, and our palliative care team.  I was getting worried.  She was coughing up blood and had unending nose bleeds.  The doctors would say the same things over and over.  “She’s fine.  She has pneumonia.  See, the X-rays show atelectasis. Have her take this, she will be fine.”

Finally one of our palliative care nurses came over after I begged him to just look at her.  She was so swollen and sick.  On a cold winter day he told us to take her to the ER.  So we went.

She was sick and weak.  Her oxygen setting went higher instead of lower.  The floor doctor sat outside our room and put his face in his hands and just stared at the keyboard.  Our palliative care team came in somber and grim.
“You’re not a bad parent if you choose not to intubate her.”  They said this gently to me and looked with sympathetic eyes.  But she was fighting.  Fighting to breathe, fighting to live.  I couldn’t walk away.

So we intubated her and found out that it wasn’t mucus in her lungs.  My baby girl had a pulmonary hemorrhage and her lungs were saturated with blood.  Her platelets and hemoglobin were at record lows.  She was intubated and got her first of five platelet and six blood transfusions.

During this time genetics, infectious disease, hematology, nephrology, and cardiology joined the party.  Cary Lynn’s heart and kidneys had taken a huge beating and she needed support.  These were dark and scary days.  I would ask why and no one could tell me.  I don’t know was the answer over and over again.

But she started to mend and fight back.  Hard.  The team though for sure she could be extubated and we could go home.  We tried.  Twice.  Cary Lynn’s body was just worn out from being so sick for so long.  So we made another really hard choice.

Cary Lynn got a tracheostomy tube and a ventilator in March.  We spent Valentine’s Day, St. Patrick’s Day and Easter, over two months in the hospital.  It was scary long and hard.  But Cary Lynn was better right?
Wellll, I didn’t quite think so.  There was something still off.  I asked hematology why she wasn’t rebounding in her numbers.  I got a lame butt song and dance.  The brush off.  They told us to go home, she would recover.

Annnnddd one month later……

So that was about the time Children’s specialties decided that Cary Lynn wasn’t going to get magically well with a trach.  Gee, go figure…..
Anyway, we spent another two weeks and in that time she got a port, bone marrow biopsy, more transfusions, and lots of labs.  This time we got some answers.  But not great ones.
Cary Lynn has Mitochondrial disease.  She has a depletion, which means her body simply can’t keep up with her energy needs as she grows and develops.  She has honeycomb patterns in her body.   Genetics is working to figure out exactly what mito she has, but we may never know.
Here is what we do know.  Cary Lynn gets sick and then her body doesn’t have the energy to keep up.  So it simply refuses to make platelets and red blood cells.  It focuses on trying to fight off invaders, which causes a dip in her numbers.  We also know she’s much weaker and more frail than she was a year ago.  Mito is a progressive disease that is killing my child.  I can’t fix it and it breaks my heart daily.
She can’t physically keep up.  Having a trach and vent take some pressure off her body and allow her focus her limited energy on healing from another round of pneumonia.  Her other labs fluctuate and we make changes in her diet, meds, and routines almost daily.  She can no longer do many of the things that would be helpful to her.  Finding out that intensive physical therapy sessions have been shelved indefinitely was another hard pill to swallow.

But I also know this.  Even if our time is short she’s still Cary Lynn.  She still loves driving her brother crazy.  Playing with her bunny.  Eating cotton candy.  Watching Daniel Tiger and being read to every night.  Unicorns.

Shannon and I are just taking it day by day.  Sometimes we just take it hour by hour or minute by minute.  I’m spending time making all the memories I can right now.  Because we are never promised tomorrow.  So we are making the most of every day and finding the joy and blessings in the midst of these uncertain days.

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