Chapter 1
Chapter 2
Chapter 3
Chapter 4
Chapter 5

9. Thankful

If I am being honest, I wasn’t soaking in gratitude when we first received Little Lion’s diagnosis.
It was overwhelming: the emergency injections and the long list of symptoms to look for in case of adrenal crisis or low blood sugar, circumstances that warranted an emergency room visit.
All the new information was scary.

I wondered if he would be able to live a normal life because of his medical needs. Summer camp? School trips without a school nurse? Could we go camping as a family?
I didn’t think I would ever have a handle on his steroids schedule (sometimes every 8 hours, sometimes every 6 hours, an increase based on x y and z, with an added 4 am dose), not to mention his temporary liver medicine and all added vitamins.

And, I missed our family in Tanzania. I struggled with the necessary wait for Little Lion to be stable before we returned home.

I also wanted to sit down and ask God why our little boy was not born absolutely healthy.
I took all the vitamins and avoided anything even remotely suggested to be dangerous during pregnancy.
Why did he have a health condition, when I was so very careful?
What more could I have done for Little Lion to be okay?
I didn’t blame myself, but I certainly wanted some sort of answer from God.

And then, some months after we had returned home to Arusha, I was alone in the car, driving home in the early evening and it hit me: Little Lion could have died.
I had considered this every day in the hospital, yes. But it was in a terrified way, never in a grateful awareness.
Little Lion could have died. But he didn’t.

And my questions to God, my struggle with his health condition are valid and permitted, but that should not be an obstacle to being overjoyed that my son is alive.
I can ask and I can wonder, but I should also rejoice.

A foreign thankfulness started to erupt in my heart and I began crying, while smiling and laughing (and slightly struggling to drive).

Again, the memories washed over me, Little Lion turning blue, his weak body waking up from surgery, crying in hunger as he fasted for a biopsy. And the recollections were for the first time joyful because Little Lion lived!
All of the fear, every moment watching my son in pain, were washed in new light – of how serious it all was. That truly my son is not just ‘lucky’ to be alive, he is a walking miracle.
He is alive, not by chance, but because God saved him again, and again, and again. More times than I will probably ever even know.

Perhaps that’s the second re-wiring my brain has undergone since Little Lion’s diagnosis and journey to heath: life is the most beautiful, sacred gift.
Apart from abilities, without accounting for talents or achievements, even to exist is remarkable.

It is an incredible thing just to ‘be’ in this world.
To breathe, whether assisted with oxygen or independently through able lungs.
To grow, naturally or because of artificial steroids through regular injections.
To experience the world, either because you go out and taste it or because dedicated caregivers bring it to your fingertips.
To be loved, not for what you can do but for who you are.

To be in this frightening, splendid planet where nothing is certain, there is very real pain and everything can go wrong. But where also, there are sunrises, unexpected kindness, and most definitely there are miracles.

And therefore, it should be celebrated.

So, on Saturday we will eat banana cake and sing very loudly and very off-key. We will dance and cheer as the baby makes a horrible mess of mango puree and sugar-free cake. We will celebrate the simple, amazing reality that Little Lion is alive.

Happy Birthday, my love.
Life has never been the same.

The End

Chapter 1
Chapter 2
Chapter 3

6. Testing

Of course, they ran blood tests first of all.
I didn’t have a picture of how seriously jaundiced Little Lion was, or how sick he was until we got the results back.

There are different rating scales to read bilirubin (the stuff in our blood that the liver and bile ducts are supposed to filter out). There is conjugated and unconjugated bilirubin.
The hospital explained it to me like this: their estimated ‘normal’ bilirubin level for a baby of his age was 20.
Little Lion’s was over 500.

They said it was “hyper-conjugated bilirubinemia”. But that’s just the name of the symptom, it doesn’t give a diagnosis for the cause: a disease? a failing liver? severe hepatitis? tumor? milk intolerance? hormonal disorder?
I was told there were at least 100 causes for hyper-conjugated bilirubinemia, and they needed to go through them one by one to find the reason.

Except, problem: blood tests.
We soon were told one of the reasons WHY it was so hard to get Little Lion’s blood is because he was anemic, and he had a blood transfusion a few days later.
He definitely looked better, still ill, still weak, but so much stronger after the blood transfusion.
Some tests could not be run because of the blood transfusion, but the doctors assured me they would continue running all the tests they could to find an answer.

Even after the blood transfusion, getting blood to run tests still remained a problem. Every day, morning and evening someone would come and try to get blood. To see if his red blood cell count was okay, to see his liver function levels – and then extra to run more tests towards a diagnosis.

It was excruciating, watching as the experts tried to get blood, unsuccessfully. It seemed like such torture because they weren’t getting enough to run tests and Little Lion was not improving and they just kept poking his little arms, and feet, and even his head with needles.

As a last resort, we agreed to have a line put through his jugular vein in order to get enough blood to run important tests.
He was going into day surgery, and would be put under anesthesia.

If you want to make time stand still for a parent, send their infant into surgery.
I gasped half-breaths for the full 2 hours I sat in the waiting room. Exactly remembering how his eyes looked as the anesthesia made him fall asleep. Staring at the clock on the wall, but not registering the time it was reading.
I didn’t relax my shoulders or fully exhale until the nurse called me softly and, seeing the anxiety across my face, said “He’s okay.”

When we received Little Lion’s final diagnosis weeks later, we were told part of his condition is a lack of cortisol/stress hormone.
It is incredibly dangerous for him to go under anesthesia without a significant dose of cortisol.

Little Lion is lucky to be alive.