And Then Everything Changed

I crawled into bed with Liam, nuzzled up against him. I held him there, in his checkered shorts that matched his Mario Kart pajamas and a top with one of those creeper zombie dudes from Minecraft. He was warm, his small body, as I wrapped my arms around him. He sleepily turned, tussled dirty blonde hair, warm brown eyes like melted chocolate, and said, “I love you mamma.”

See, he’s a snuggle bug and loves his mamma

He wrapped his arms around me now, squeezed tight and then softly scratched the back of my head the way his father does to me. I held my tears because although I already knew what we were going to be told by the doctor – it just felt this was the moment everything changed. The doctor’s words – not the piece of paper, not the speculative nurse on the phone – when the doctor looked me in my eyes and told me what my little Liam would face. Nothing would ever be the same.

A few tears escaped, rolled down my cheeks – slowly and methodically tracing my face down to my neck.

“Don’t cry mamma,” his soft, sleepy voice muttered. “It’s going to be okay.”

I wanted to freeze this perfect moment, our sleepy cuddles, his ability to wrap his arms around me and squeeze, a thing I never in a million years thought I might lose.

Today was diagnosis day.

I had a list.

Another lifetime ago, I was a crime reporter for the Arlington Star-Telegram. And from my few years as a young reporter, I knew that preparing questions was paramount. But, having worked for a children’s hospital for 10 years, as well, I also knew parents’ level of understanding drops significantly in times of crisis….so, let’s just say I made a list of questions.

But, the care team immediately made a mistake. Before we even had a diagnosis from the doctor, a very rushed social worker came in and carelessly with very little feeling or emotion told us about the insurance we would need to apply for to get medical devices like feeding tubes, respirators, etc. BEFORE we even spoke to a doctor, they sent in a person to talk about Liam’s death, at least in my mind. While this is a very necessary conversation because the wait is 10-15 years for that insurance, the social worker didn’t get how careless she had been with her words. Now, this isn’t a diss to social workers, this is my reaction to more disorganization among my care team and about the carelessness of her approach.

I wasn’t happy.

I said, “You realize you are talking about some heavy things and we haven’t even spoken to the doctor about our diagnosis or treatment options. We don’t know what we are dealing with and the doctor specifically instructed us not to go on what I researched online.”

She had attitude. “Do you want me to get the doctor?”

Me, angry tears flowed: “Yes, I want you to get the doctor.”

Liam was still in the room during that – staring at me with wide eyes, hopefully unaware of the eventuality of this horrible jerkface of a disease.

Liam left the room.

The child life specialist with kind eyes and a soft voice gently encouraged Liam to leave with her. He happily obliged, bouncing off behind her with so much joy. The dichotomy of his joy and our grief made the air strange. I realize I started this blog saying the doctor’s words are what I needed to bring reality in this situation, and I found those words critical before I heard them. But in reflection, those words were a blur of information and I just kept thinking of the resident’s sad eyes as he watched the doctor give us this news, his mind obviously thinking how many times he might have to do this thing. I fired off my questions, through hot tears that occasionally rolled down my cheek until I would angrily stub them away, like little cruel acid rain drops reminding me how weak I am.

I asked about studies and drugs, and in that I got a bit of hope back. Our hospital was a site for the Phase 3 PolarisDMD clinical trial with edasalonexent, and we might just qualify.

A flood of people came in and out, including the lead research coordinator enrolling patients and the physical therapist who would work with Liam to find out if he qualified. The coordinator was lovely, kind, hopeful, nice, super pregnant, and the PT had eyes hard like rocks, giving away nothing, no emotion, no feeling, just two gray rocks, eyes that would determine my son’s fate. I try to recreate her in my brain, and I just can’t see anything but cold, dark, gray rocks, and maybe that’s because she almost told us no. So maybe it’s unfair.

They gave us hope and pulled it back and gave it back again.

And, they said we could test for a trial, I stopped crying.

The PT took Liam for a time.

The PT came in and said to the research person, he doesn’t qualify.

The research person looked grim.

I cry again.

“What disqualified him?” I demanded.

“He can’t get off the floor in 10 seconds,” she replied.

“I want to see,” I barked.

“He’s got on tight pants,” Collin says gently, realizing my rising anxiety manifesting in anger and impatience. “Let’s try without them.”

Collin hasn’t grieved much because he really didn’t get the chance, taking care of me in my dark space, managing to get information and push down emotion so one of us was strong enough for two of us. I’ll forever be grateful to him.

“I’ll ask the doctor,” the research coordinator said directly.

The doctor shuffled back in, told me it’s my call if I want to test for it. I said, obviously I do, or you wouldn’t be in here. I’m sure you think I’m sounding rude, but I was so frustrated at the chaotic nature of this disjointed visit. And, I wanted to run out of the room, take my son out of here.

Sure enough, Liam took off the pants and got off the ground in eight seconds. And, the PT looked offended that she hadn’t been right.

But, we decided to not officially test for the drug until the following week, because honestly, I couldn’t take another minute in that room. The walls were closing in on me, I was sweating, and the weight of the world was slowly crushing me. More on that later…

And then we were home again.

We were home again, but nothing was the same, nothing would be the same again. But stay with me here – there is hope in all of this, at least I’m slowly starting to believe that. For now, I’m going to keep crawling in bed with my little man, breathing in his beautiful scent, hoping his joy, strength and love of life will continue to enter my lungs and live in my soul.

With bright smiles and dark eyes, bright smile dark eyes, everywhere I went, oh, I was always searching for ya bright smile dark eyes

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