"And the cup He brings, though it burn your lips, has been fashioned with the clay which the potter has moistened with his own sacred tears" ~Khalil Gibran
I've been struggling to find the words.
To tell you here.
Micah died, three weeks ago on Tuesday morning, May 10th, at 6:38am.
I'm devastated.
I know I haven't written here in over a year, and I'm sorry. I promised you I wouldn't do that. But life with Micah got so busy. He was thriving. And if you followed his facebook page, www.facebook.com/watingformicah, then you know that piece already.
He was going to preschool four mornings a week.
He was spitting out a new word every day.
And he was RUNNING.
His Still's Disease was still very difficult to control, with regular flare ups causing unrelenting joint pain lasting up to ten days at a time. It's for this reason that I ultimately had no choice but to leave my job in November. His care simply took up too much of my daily life. At the time---I was heartbroken to have to leave my work family. In hindsight -- thank GOD. I got the last six months at home, every day, with my son, and found a wonderful job in the meantime, working contract for an amazing organization that fills me with such joy.
Who of us knows our final day? Our final hour? Our final minute?
Micah's was 6:38am May 10, 2016.
And I haven't shared with you yet the causes leading up to it, because the grief is still so raw. It was, perhaps, the most unexpected, sudden, and heartbreaking thing that will EVER happen to our family.
I went to Mobile for Mother's Day weekend. My brother graduated from college on that Saturday, and we spent Mother's Day morning and lunch together as a small family. I left the boys at home with BT that weekend. On Friday, on my drive down, Kelli called to tell me that she picked up Micah from school, and she was thrilled. For there, in the kitchen, as she pulled out his yellow school folder, Micah walked over to it, pointed to it, and said, "yellow!" with a giant smile on his face. For those of you who don't understand all of our yellow hearts right now, this is why. Micah's last new word was YELLOW.
The weekend moved on, and I facetimed the boys on Sunday morning for Mother's Day. I noticed Micah seemed tired, as he was just laying on BT. But BT said the same thing, and we chalked it up to him not sleeping well or a looming flare up of his Still's Disease. On the way back to Birmingham that afternoon, I got a text from BT: "He's got a temp of 103.9, just FYI." So he did just what I would have done, and gave him fever medicine and a steroid boost, anticipating a flare up. You see, when Micah would have Still's flare ups, it was not uncommon at all for his temp to get up to 105 before leveling out. But we had never seen it higher than that. This text came through around 2:30pm, on May 8th.
5:30pm, May 8th - I got home to find Micah still inconsolable. BT was waiting on me to get word on what to do, as he couldn't have any more meds at that time anyway. I took his rectal temp, and it was 105.8. We knew at that moment, and my mommy alarm went off, that something was seriously wrong. BT rushed to get his feed and meds to take to the hospital, and i rocked Micah in his room, for the last time. I told him, "Bubba, your fever is high. This makes mommy too nervous. We have to take you to the hospital to get the doctor's help." And I'll never forget it. The cry. It was the saddest, most mournful cry I've ever come out of my son's body. And then, the last word I heard him say to me, "okay," as he cried that sorrowful cry.
BT took Micah to the ER, and Kelli met them there, because Thomas was counting on me to get him to a birthday party. Once I got him to the birthday party and got arrangements lined up for Thomas to stay with one of his best friends that night, I was off to Children's. When I got there, by that point, we knew that Micah showed some infiltration in his right lung of suspected pneumonia, and we knew his white count was low, his inflammatory markers (CRP and ESR) were low, and that he had an enlarged spleen. None of this made much sense, as he had shown no evidence of pneumonia in the days leading up to this, and as the labwork numbers were the exact OPPOSITE as they normally were during a flare up, and even during some episodes of sepsis. So doctors determined to admit him for observation of the suspected pneumonia to the special care unit. However, it was at this point, that we began pestering for rheumatology to get involved, as a rare, but often fatal complication of Still's Disease is something called Macrophage Activation Syndrome. It's essentially a very complicated autoimmune response where in a patient with Still's Disease, your body just begins to attack its organs, most of the time due to a trigger, like a bacterial or viral infection.
2:35am, May 9th - By 2:35am, Micah was intubated.
By 6am Monday, May 9th, we knew he also had a large growth of the bacteria streptococcus pneumoniae, in his blood culture, less than twelve hours after the draw.
By 10am Monday, May 9th, ferritin levels were back, showing Micah also had Macrophage Activation Syndrome.
This is how fast it all went.
At this point, we called our family.
And we told them to come quickly.
By 4pm, May 9th, I walked into the bathroom in Micah's room in the ICU, and cried, and screamed, and hit the walls. I moaned the moans of a grieving mother.
Because I knew.
There was discussion of EMCO.
There was discussion of Dialysis.
And there was agreement, among all of us, that it was just all probably too late.
The sepsis overtook him, and any part that it didn't get to, the MAS finished off quickly.
Our Micah, as we knew him, was gone.
We spent from 9pm on May 9th throughout the night taking turns holding him. Me, then BT, then Kelli, rotating throughout the night. The nurses in the PICU were amazing. They moved him from person to person whenever we asked.
And at 5am on Monday, May 10th, I walked downstairs, into the still sunless dawn of morning. And I sat outside by the emergency room, and I sobbed my tears of acceptance to the sky, and I gave him back.
Then I walked back in, and I woke BT and Kelli, and I told them it was time.
We called our family and tribe back to the hospital.
They came quickly.
There were many tears.
Sobs of anguish and mourning for a little boy lost too soon.
And for the second time, I held my child as he took his last breaths.
And then, just like that, he was gone.
My hands shake just to type it, and to relive it. My eyes well with the burning tears of a mother who has cried way more than she has smiled in the last three weeks.
I have much more to write you, friends.
I'm back.
I've missed you.
But I miss him MORE.
Micah, you are MISSED.
Deeply. Achingly.
The hole is enormous.
There is so much more to talk about.
So much has happened to me in the last three and a half years.
And it's time I shed my skin with you.
But that, my friends, is for another day.
Today, this day, is Micah's post.
God Speed, my baby.
Love,
Mom
