This was inspired by a column by Beverly Beckham in the Boston Globe. Used with her permission.
Thanks always to blackrandl1958 for her editing and guidance.
Sixty days: Was it only sixty days ago that I cut the cord and the delivery room nurse handed me our bundle of joy?
I held her for just a few moments, feeling her tiny heart beating against my chest before gently placing her on my wife’s chest, basking in the glow of their love.
Jane stroked Margaret’s head and smiled up at me.
“We did it, Tyler,” she said. “We finally did it.”
“We finally did it.” Those words had more significance than usual. Margaret was the result of our third pregnancy, the first two ending in miscarriages.
It could have destroyed us. Maybe it would have, but for the depth of our love for each other.
We were also fortunate that our cycles of depression were out of phase. When Jane was down in her own pit of Hell, I had strength enough for both of us, and she did the same for me.
I still don’t know if I should have been surprised or not. On one hand, given our history, you would think that we were due for some good luck; on the other hand, maybe we were just cursed.
I was wondering why all the doctors and nurses were still hovering around us, when the doctor spoke.
“Mr. Allen, Tyler, I’m afraid that we’re going to have to keep Margaret in the hospital a little while longer.”
“What are you talking about?” Jane cried. “She’s perfect, what’s wrong?”
The doctor hesitated.
“Actually, she’s not perfect. Look at her thumbs and limbs. They’re not normal.”
“Just what does that mean?” I asked, maybe more heatedly than I intended.
“Well, early indications are that Margaret may have a rare genetic disorder,” she said. “If further results confirm the diagnosis, I’m afraid the prognosis is grim.”
“Doctor, you keep dancing around the issue. Just what are we looking at here?”
The doctor sighed and looked down at her feet, before looking me in the eye.
“Tyler, if our diagnosis is correct, Margaret isn’t likely to see her first birthday.”
It’s a good thing the doctor was there, or I would have hit the floor as I burst into tears.
As I struggled back to my feet I saw that Jane was in even worse shape than I was.
She was nearly catatonic, just staring into space, clutching Margaret to her breast as if her life depended on it, and I wasn’t sure that it didn’t.
“This can’t be happening to us!” I cried. “After the two miscarriages we get this far, only to lose another baby?”
The nurse reached for the baby, but Jane stiffened and turned away, giving the nurse a Mama Bear look that should have dropped her on the spot.
“Tyler,” the doctor said, “we need to...”
It was my turn to be Papa Bear.
“Doctor, is anything that you “need” to do, going to save Margaret’s life, help her see that first birthday you spoke about?”
The doctor could only shake her head sadly.
“Then could you please leave us alone with our daughter? We’ll call you if we need you.”
After just a moment’s hesitation, the doctor and nurses left us alone with Margaret.
I gently slid onto the bed next to Jane. I wrapped my arm around her and pulled her close, stroking Margaret’s little head as Jane sobbed into my chest.
After what was probably just a few moments, but felt like forever, Jane sat up straighter and wiped her nose on her arm.
“Tyler, what are we going to do? I can’t lose another baby, I just can’t!”
I was at a loss for words. While I might not have shared Jane’s physical connection with our babies, my emotional loss was still devastating. I had no words for her, because I felt the same way, but I knew that I had to be strong for Jane or else I might lose her, also.
“I wish I could tell you, Jane. All that I can say is that we have to somehow find the strength to carry on, for each other, for Margaret, and for our future children.”
Jane looked at me in shock. She hadn’t even processed the idea of losing another baby, the idea of trying again was inconceivable to her.
“I know you can’t bear to even think about it now, and I promise that this is the last I will speak of it until you are ready, but when you feel strong enough, let’s talk about what we can do.”
Jane gave a sad nod and buried her face back into my chest.
The nurse came into the room quietly and approached the bed. I gave her a nod and she reached for Margaret.
Jane resisted for a moment, but a quick nod from me and she slowly released Margaret to the nurse’s care.
I dreaded my next step. I had to go to the waiting room and tell our parents the bad news. Jane was grateful to be spared that grim chore, and let me go as she tried to wish it all away.
Our parents reacted as you might expect, with tears and hugs all around. I stayed with my dad and father-in-law while the women went to comfort Jane, as much as that could be done. They each put a hand on my shoulders as I wept openly.
It turned out that Margaret had a rare genetic disorder, Galloway Mowat Syndrome. There was little known about it, and even less that could be done.
After a few days we took Margaret home. Eventually, I had to return to work, but we never left Jane and Margaret alone. Either my parents or Jane’s parents spent the day while I was at work. Sometimes they would spend the evening so that we could go out, have some respite from our grief, though it was never really far from our minds.
After we were home for a couple of weeks, the doctor called on us.
“Jane, Tyler,” she said, “I’d like your permission to run some tests on Margaret.”
Jane broke out in tears and ran out of the room.
“What in the world for?” I asked angrily. “You’ve already said that there’s no treatment, that there’s nothing you can do. Now you want to steal part of what little time we have, to poke and prod Margaret?”
I’m sure the doctor could see my fists clenching and unclenching.
“I ... I know this is a great imposition, but we think ... we hope, that we might learn something, anything that will help other families in your situation.”
I brooded for a moment.
“I’ll talk it over with Jane, but I’m not promising anything.”
“That’s all I can ask, Tyler, thank you,” she said and let herself out.
It took me a few days to screw up my courage to broach the subject.
“No!” she said. “Hasn’t she suffered enough? Now you want to make her a lab rat!”
I struggled to hold back a sob as I brushed a tear from my eye.
“Jane, I understand, really I do, but there’s nothing we can do for Margaret besides loving her. This might help spare other families from this grief, give some meaning to her short life.”