Sixty Days of Margaret

This was inspired by a column in the Boston Globe. Used with 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."

"Her life does have meaning: our love."

"Of course it does. I didn't mean to minimize that, but this will give it additional meaning."

Jane was silent for a few moments.

"Maybe, but I reserve the right to pull the plug on this at any time."

"I'm sure that they will agree to that."

It took a few more days of soul-searching, but Jane ultimately agreed.

The one thing that she wouldn't budge on was using a child safety seat. She insisted on holding Margaret in her arms. The most I could do was get her to sit in the back seat, and pray that we didn't get pulled over.

For six weeks we made the journey to Mass General every Monday, Wednesday and Friday, and it never got any easier to hand Margaret over to the nurses to run their tests.

We would spend the entire time with Jane nestled in my arms. Sometimes she would openly sob, sometimes just weep softly, and sometimes she would be almost catatonic.

Finally, it became clear that Margaret was drifting away, and there was no further benefit that could outweigh our need to spend her final days with her.

The car ride home was deathly quiet, and I left Jane and Margaret in the big rocking chair while I called our parents with the news. I vetoed their desire to come right over, and they reluctantly agreed to come over the next day.

We took turns holding her tiny body, each of us praying that we wouldn't be the one holding her when she breathed her last.

Exactly sixty days after she took her first breath, almost to the minute, Margaret left us while I was holding her. I could barely keep it together as Jane took Margaret from me and I called our families.

Jane didn't want Margaret to be buried in the cold earth, so we chose to have her cremated.

Jane couldn't bear to come with me as I scattered Margaret's ashes in the waters off Ferry Beach in Maine.

The beach was deserted as I dragged my foot through the sand.

"Happy 60 days of Margaret," I wrote.

I'm not entirely sure of what I meant. The days weren't exactly happy for us. I could only hope that Margaret could feel the love that we felt for her, and that love made her happy for the short time she was with us.

My message complete, I closed my eyes and threw my arms out.

"Go fly with the angels, Margaret," I said softly, then made the slow walk back to my car.

I sat in my car for a long time, trying to gather my strength. I had to be strong for Jane who was still a wreck.

I finally bit the bullet and went home to find Jane curled up on the couch in the sunroom, her eyes red from crying. I sat down and held her close, pushing my own grief down so that I could be strong for her.

Neither of us were religious, though we belonged to the local Unitarian Universalist Church, and were spared the platitudes of "It's God's will," or "She's in a better place." What place could be better than in our loving arms, damn it!

What started us on the path to healing, strangely enough, was a visit to a fellow congregant whose wife was suffering from dementia. On a good day, she recognized him; on a bad day, well . . .

Sheila was having a relatively good day, sitting holding Adam's hand, gazing up at him with something that could only be love.

"How do you do it, Adam?" I asked. "Don't you miss having the real companionship?"

"Of course I do," he said, "Who wouldn't? But what is the alternative; to be without Sheila at all? I just treasure every moment I have with her."

While we nodded our understanding, we didn't really understand, not at first.

A few days later we were sitting on the couch, watching, but not really watching, some mindless TV program, when Jane spoke softly.

"Tyler, do you remember when we brought Margaret home from the hospital, how she had such a sweet smile?"

"I do. It was one of the bright moments in those dark days."

I know it doesn't sound like much, but that was the first small crack in our grief. We learned to treasure the time that we had with Margaret, not grieve so much for the time that we lost.

I knew Jane had come to a turning point when she asked me to take her to Ferry Beach. We stood there holding hands, looking out to sea at the same spot I had scattered Margaret's ashes, lost in our own thoughts.

Jane let go of my hand, and I watched as she wrote her own message in the sand: "Happy 60 Days of Margaret."

She took my hands, looked up at me with a tear-filled smile, and we hugged.

No more words were spoken as we walked hand-in-hand to our car, and the rest of our lives.