I want to tell you about my beautiful baby girl and about how good it is to love a child every moment of her life. About how hospice helped the not-so-good part: living and helping Elissa live, even while she was dying.

My tiny girl could not smile, could not hold her head up, could not do the things infants “are supposed to” … disabled, something wrong with her, severely handicapped, all the labels the world might apply. Yet we saw her as perfect, just as she was: beautiful, miraculous.

Two months before Elissa was born, we found out she had lissencephaly. (Lissencephaly is a rare chromosomal disorder characterized by smoothness of the surface; lissencephaly means 'smooth brain,' i.e., brain without convolutions or gyri.) The disorder showed up only because of an ultrasound scheduled to assess minor spotting. It would not have shown up on a standard amniocentesis, nor did it appear on earlier ultrasounds, standard screenings, or a nuchal translucency screen.

A month later, a special amniocentesis probe showed that Elissa had Miller-Dieker syndrome, a severe lissencephaly variant that would result in a very short lifespan. If she made it through birth, she would not be able to learn anything, and the severe brain injury would cause seizures.

People could tell us where to end her life, or how to manage procedures and equipment that might extend her body’s stay in this world. But no one seemed to tell us how we could help her live whatever life was given to her. My husband and I wanted a better answer.

We were panicked to think of losing her, but we were also panicked to think of our child enduring pain. More than that, to have her endure pain that would never result in a benefit. What would be the most loving way we could possibly care for our daughter, and also care for our son, while all the while our hearts were breaking?

We did a massive search of medical publications and on the Internet. We read of a young boy with the same diagnosis, although not also with Elissa’s growth retardation. When he was awake, he’d move in a way that let his parents know he wanted to be held. But they couldn’t pick him up, because of the medical equipment to which he was attached.

That was not the better answer we were looking for.

We wanted desperately to meet our little girl, but we were petrified of losing her, petrified of what her life might entail. We wanted her with us for every single moment of her life.

And whatever the answer was, it had to be Elissa’s life, not some procedure-driven event, just so we could hold her a little longer. It became clear that letting her live her life, that loving her with all our hearts, would also mean letting her go, letting her die, when it was her time.

A few days before she was born, I wrote:

“Please let me comfort you, and make your life cradled and gentle, my precious Elissa…”

Her birthday was a joyful day. An exquisitely beautiful 4 ½ pound girl was laid on me, where she breathed and nursed and looked at us, and clearly wanted to be here. The nurses later shared our joy as Elissa toured the nursing station on the way home. Daddy was full of pride, of joy.

We wanted Elissa to chart her course, and we wanted to make her comfortable. And we wanted to love her for a billion days.

She was doing nicely on charting her own course. A few absence seizures, but not too bad. We warmed her blankets and held her constantly – she would nestle into our arms, and we could see she was comfortable. She loved to sleep curled on her warm, cozy daddy.

Aunts, uncles, cousins, grandparents all flew in from all over to meet this beautiful tiny girl. Friends came over and marveled at the miracle of Elissa.

We took her to Hawaii. She loved the warmth! We took her all around -- to restaurants, to the zoo, to the aquarium, hiking in forests, and to see snow in the mountains.

In June, her seizures became much worse very quickly. We showed up at emergency room of the children’s’ hospital where they prepared to give her Ativan, while also very gently and quickly and clearly walking me through resuscitation choices.

By this time, I’d figured out that she really could chart her course for the most part, if only I’d be quiet and listen. So she got Ativan, got some “O’s” (as we say at our house) when she stopped breathing, and she decided she wanted to stick around a bit longer.

Our little fighter!!

Before she left the hospital, we had a dip in the therapy pool, the only time she was ever in a big pool. She loved the warm water and floated around.

She was beautiful to watch.

We received a palliative care referral while there.

At first, we weren’t sure how many home visits we needed from hospice / palliative care. It quickly became apparent. Elissa’s health was deteriorating rapidly and she was firmly turning away from food.

The hospice nurse assigned to us was perfect, immediately seeing Elissa as the beautiful blessing we saw, and with extensive experience helping children with neurodevelopmental disorders such as Elissa’s.

I looked back the other day at video from that time. I saw now what our nurse saw then: Elissa wasn’t fighting anymore. Elissa had had enough.

Our nurse gently helped us to see what Elissa was doing, and helped us to find ways to make Elissa comfortable.

Our nurse helped prepare us for the time Elissa would leave us, as best as one can be prepared. Knowing a little more helped us to squeeze in a few more wonderful sweet memories.

We had a birthday party for her fifth month. A houseful of people cleared their Sunday afternoon with less than 48 hours notice and came over to picnic and play…a house full of laughing, playing children, a birthday cake, streamers…a good day.

Our almost-5-year-old son picked out a story to share with Elissa on her last full night with us, and the two of them fell asleep together. I took a beautiful photograph.

My incredible sister went for a dip with Elissa in the wading pool out back filled with bath-temperature water the day before Elissa died.

My son’s friends laughed and played in our home Elissa’s last afternoon, and one friend kissed her good-bye before going home.

On of our friends played baseball in the back that evening with our son until his bedtime.

Our nurse was off the next day, but told us to page her.

We called her at 2 a.m. Elissa had died in my arms.

We were blessed with 162 precious days with this exquisite child. God had promised me early that if I would listen to her and listen to Him, she would not suffer. Her last hours, she was suffering in her breathing, and I became angry with the Lord. I said to Him, “You promised she would not suffer, you promised you would be faithful to keep her in peace and comfort.” Upon uttering those anguished words, I saw that my little girl had stopped breathing.

The Lord was faithful indeed to keep her in peace and comfort all the days of her life. Elissa lived her life in peace, without pain, and in the love her family.

Our nurse came and made all the calls that had to be done.

I didn’t know, and couldn’t talk on the phone to anyone for three days anyway. I just went in the backyard and picked a rose from Elissa’s birthday rosebush and Elissa’s Mother’s Day rosebush to put with her body, which I’d dressed in my own christening gown.

My husband went for a walk and looked at the moon and the beautiful stars.

Our son woke up and came in to say good-bye to her, and then went back to bed, very simply.

My husband’s mother and I said the rosary next to her bassinet. I had never said the rosary before.

The pediatric counselor from hospice brought a huge stuffed alligator on her first visit with Elissa and our son. Our son correctly thought Elissa might like to sleep on the huge stuffed alligator, so the counselor left it with our son.

After Elissa died, the counselor called to check in. Our son had gone from being a very resilient and adventuresome child to being very fragile and easily provoked to sobbing.

Except a not-yet-5 year-old doesn’t necessarily know why, or what to do about that. The counselor came to visit, and read our son a book about missing someone who has died. The book asked, “Do you know someone who has died?” He said nothing and sat rigidly quiet.

The counselor came again a few weeks later. Again, she read the book during her visit. And again, the same question. This time, our son said, “yes, my sister Elissa.”

My boy is starting to feel more control over his life again, and I know he will have wonderful memories of Elissa’s few months with her big brother.

She touched lives all over the country, reminded so many of God’s faithfulness, God’s blessings, the richness of a life with God no matter what the length, and the promise of joy in welcoming God’s blessings into one’s life. For truly, God formed her in the womb, knew the number of her days, welcomed her home as his child.

But the memories we managed to accumulate living during those 162 days will have to do, and they are pretty spectacular.

And I know we will love Elissa for a billion days, because 162 days just wasn’t long enough.

And now, Elissa-pie is laughing and dancing and singing, because she can.