The Color of Heaven (4 page)

No, I’m not here to visit someone… My five-year-old daughter is ill, and I’ll be sleeping here every night for the indefinite future until she’s well
enough to go home.

And my husband wants me to get pregnant.

I shuddered.

Why did he want that?

In case Megan died?

After about twenty minutes, my cel phone rang. The cal display said “Michael,” and a firebal of anxiety exploded in my bel y. Was something

wrong? Did Megan need me?

With clumsy, fumbling hands, I flipped the phone open. “Hi, is everything okay? You’re not supposed to use your cel phone in the hospital.”

“Yeah, everything’s fine,” he replied. “But I can’t stay much longer. I need to get back to the office. There’s an important court date coming up. Are you finished your coffee yet?”

I pinched the bridge of my nose and felt my stomach churn with acid. “Yeah, I’m done. I’l be right there.”

“Great.”

I stood and gathered up my purse. “Just stay with her for a few more minutes, okay? Please don’t leave until I’m back on the floor.”

“Sure,” he replied. “See you in five.”
Click
.

Just like that, the connection went dead.

Over the next three weeks, Megan was treated with aggressive chemotherapy and craniospinal radiation, while we prepared ourselves for an

al ogeneic bone marrow transplant, which the doctor said was her best option.

Her hair fel out again, and she was violently il most days.

On one particular afternoon (although it might have been the morning; it was al such a blur at that point) I had to fight hard not to fal apart completely when the nurses came in to weigh Megan. She was too weak to get up, so they weighed me instead, then instructed me to pick her up and hold her

as I stepped back onto the scale.

She wore nothing but her pink princess underwear and yel ow SpongeBob socks, and she was completely bald with a jungle of tubes sticking out of

her in every direction. I had to be careful not to become tangled in them.

While the nurse recorded our combined weight, Megan rested her head on my shoulder. When they were finished, I gently laid her back down on

the bed and climbed in next to her. For a long time, I stroked her smooth, warm head while she slept.

“I’m sorry, Mommy,” she said, opening her eyes at last.

She touched my cheek, wiped my tears away, and told me not to worry. She promised that everything was going to be okay.

Unfortunately, neither Michael nor I was a stem cel match for Megan, so we had to rely on the National Marrow Donor Program to find an unrelated

donor.

Dr. Jenkins told us not to beat ourselves up about it because according to the most recent statistics, parents match up with their children less than one percent of the time, while only twenty-five percent of siblings are complete matches.

This helped to al eviate some of my guilt over not having had a second child who might have been a perfect match and could have saved Megan’s

life.

This was our reality, and we had to work around it as best we could.

Thankful y, by some miracle, a donor was found quickly, which was a blessing, even though Dr. Jenkins informed us that the risk of complications

increased if the donor was not a ful match, which he (or she) was not. But it was our only hope.

I was relieved when Michael was able to leave the office to be present during the procedure. We both sat on opposite sides of Megan’s bed while

Nurse Jean brought in the harvested marrow to be injected into Megan’s bloodstream.

It was a simple IV bag fil ed with blood, which was hooked up to Megan’s central venous catheter.

We were quite concerned over the fact that she was stil very weak from a recent high dose of chemo drugs, which was necessary to kil off the

remaining cancer cel s in her body and make room for the new, healthy stem cel s. But Dr. Jenkins assured us that the transplant would help make

her stronger, so we soldiered on.

I was fascinated and fil ed with hope as I watched the blood flow through the clear rubber tubing into my daughter’s body.

The procedure itself was over in no time at al – it lasted about 45 minutes – which hardly seemed possible.

Even more surprising was that another hour later, Megan’s color began to improve, and she began to laugh at SpongeBob on the television. I

couldn’t believe it. How quickly it had infused life back into her veins!

The nurses told us that it happened that way sometimes, but I just thought Megan was special, and that some higher power was looking out for us.

Even so, it was stil going to be a long recovery, we were told, and I knew what lay ahead of us. We would need to spend weeks or perhaps months

in the hospital and continue with her therapy, but I was prepared for anything. I would have given up my own life to save her.

Later, while Megan continued to giggle at the shenanigans on her favorite cartoon, Michael stood up, came around the bed, and began to massage

my shoulders. He kissed the top of my head, and I pul ed his hand to my cheek, pressed my lips to the warmth of his palm.

Perhaps everything was going to be okay after al , I told myself. Maybe there was hope that we could be a normal family again. Maybe we would

even have more children.

We laughed and talked and forgave each other for everything.

That night, I cried again in the shower, but this time they were tears of joy. I laughed in relief as I wiped them away, and later, while my hair was stil wet, Michael and I made love in the back seat of his car in the farthest corner of the hospital garage.

It had been a good day, and I treasured it.

Six weeks later, Megan developed interstitial pneumonitis, a serious pneumonia that is associated with graft-versus-host disease.

I had known that GVHD was a potential complication of the transplant, for Megan’s immunity had been greatly diminished by her chemotherapy

beforehand. I was also told that under normal circumstances, it would take six to twelve months to recover immunity, but now, because of the

GVHD, it could take years.

I fought to stay positive, while Michael threatened a lawsuit.

“
Please
, Michael.” I begged him over and over not to burden Dr. Jenkins with court dates and legal problems. “We knew the risks of the transplant and we chose to go ahead with it anyway. Besides, we have enough of a battle as it is, just helping Megan stay strong. She needs to believe that

we’re al on the same team.”

But he wouldn’t stop laying blame. Nor would he talk to Dr. Jenkins about anything. He refused to be in the same room with her, which meant he

stayed away from the hospital whenever she was on duty.

o0o

Things only got worse after that. Megan developed veno-occlusive disease, another complication of the transplant, which was affecting her liver. It

explained her constant fever, the painful diarrhea, and the strange rash that had broken out al over her smal , frail body.

The medical team ordered platelet transfusions, diuretics, and anti-clotting medications.

When the pain in her bel y escalated sharply one evening, I cal ed Michael right away and told him to come to the hospital, even though Dr. Jenkins

was in charge of Megan’s care.

He said he would be there soon, in twenty minutes.

Two hours later, he stepped off the elevator – but it was too late.

He had waited too long.

February 19, 2006

Despite the heroic efforts of the doctors and nurses who did everything they could to save her, Megan passed away ten minutes before Michael

arrived.

The death of my child was the death of my own heart. That night in the hospital was pure agony. I cried for hours and refused to leave her. Final y,

they had to escort me out of her room so they could take her body to the morgue.

The funeral, four days later, was a deep black hole of sorrow and disbelief. I was flooded with despair. I ached over the decision to go ahead with

the bone marrow transplant.

Perhaps if we had waited, we might have found a better match, or perhaps her life would have been prolonged, even for a year or two.

I felt no peace.

Al I wanted was to hold her in my arms again, to breathe in the sweet scent of her skin, press my lips to the top of her head.

I couldn’t believe she was gone, that I would never see her again, never hold her, never hear the sound of her laughter. I wanted to climb into the

coffin with her and go wherever it was that she had gone.

I didn’t know where that was, and it
killed
me. It kil ed me not to know where my child was, or whether or not she was safe.

Who was taking care of her? Was she scared?

I cannot say anything more than that.

There are simply no words. It is inexpressible.

My sister Jen was a great comfort to me when Megan died. She came immediately and helped with the funeral arrangements, and took a leave of

absence from work to stay with us for a month.

She held me when I cried, and talked to me of other things when I needed a distraction from the crushing weight of my grief.

Some days were especial y difficult, but Jen always had the wisdom to say the right thing, and more importantly, she knew what not to say, because

she, like me, understood loss. We were both very young when we said goodbye to our mother.

Michael, however, who also understood loss, seemed somehow immune to the intensity of grief I was experiencing. I never saw him cry, and he

usual y left the room whenever I fel apart, which happened quite often that first month.

Thank God for Jen. I never would have gotten through any of it without her.

o0o

I received many sympathy cards from friends and family, and they were al deeply appreciated during that very dark time. One, especial y, touched

my heart.

It arrived late, two months after Megan’s death, and it came from Kirk Duncan, my old boyfriend from high school. It had been more than ten years

since we last communicated by email, so I was surprised when I saw the return address on the envelope.

Dear Sophie,

I am terribly sorry to hear about the loss of your daughter. I can’t imagine the pain you are going through, but please know that you and your

husband are in my thoughts.

I took the liberty of making a donation to the oncology department in the children’s hospital in my area, which I put in your family’s name. I wish

there was more I could do, but I hope this smal gesture wil let you know that I am thinking of you and your family.

Your friend, Kirk

I cried when I first read it, then reread it a number of times that day.

How grateful I was for this thoughtful act from such an old and beloved friend.

That night I slipped the card into the pages of a hardcover picture book that I had kept from my childhood. It was a book my mother used to read to

me – one of the few things I had left of her; the rest of the memories had been packed away and stored in the past.

o0o

After Jen left, I discovered how generous and compassionate some people could be. One neighbor in particular, an older lady named Lois who

lived on my street, came by every few days, always with a plate of something to eat, which was a blessing, for I had very little appetite and no

interest in cooking. Sometimes she brought a casserole that I could heat up for dinner. Other times she brought homemade cookies, stil warm from

her oven.

She sat with me at my kitchen table in the afternoons and talked to me about everything from the weather to the death of her husband ten years

before. She was an excel ent listener. Whenever I spoke about Megan, she nodded caringly and agreed that she was a beautiful, extraordinary

child.

Lois was very kind, and if not for the expectation of her afternoon visits, I probably wouldn’t have gotten dressed most days.

She was lovely to me, and I wil always cherish her friendship during that difficult first year. Not only did she help me with my grief over Megan, she was there to help me deal with the uncomfortable issues in my crumbling marriage.

Six months after the funeral, I came home from the food market one day to find Michael’s BMW parked out front, which was an odd occurrence,

since he never came home in the afternoons.

I juggled my grocery bags as I unlocked the front door, and glanced curiously into the living room, then peered into the dining room as wel .

The house was quiet. It didn’t appear that anyone was home.

I went to the kitchen, set the bags down on the counter, and cal ed out to him. “Michael, are you home?”

Stil , no reply.

I wondered if he had gone out to the backyard. I stepped onto the deck, but there was no sign of him anywhere, so I went back inside. “Michael?”

Quickly, I climbed the stairs, thinking he might have come home sick, or perhaps something terrible had happened.

My heart began to pound as I put one foot in front of the other, and a heavy knot of dread tightened in my bel y. This was not unusual. I’d been

experiencing bouts of anxiety since Megan’s death, always fearing the worst in any situation...

When I reached the top of the stairs, I found our bedroom empty, but Megan’s door wide open, which was
definitely
unusual, for Michael insisted we keep it closed.

He didn’t want to go in there. He didn’t want to look at Megan’s things, or smel the familiar scent of her that stil lingered. He didn’t want to be reminded.

A part of me understood this on some level, but another part of me did not. Sometimes when I missed Megan, and the longing became unbearable,

I would go to her room and sit on her bed. I would leaf through her books, run a hand over her stuffed animals. Then I might lie down for a while and imagine her lying beside me.