A Mind of Her Own

Today Emily turns 21. She’s ecstatic. I’m in shock.

How can it be that our youngest daughter is now a legal adult? Everyone says, even if it doesn’t seem that way when you’re bombarded by toddler tantrums or adolescent angst (not all that different), your children grow so quickly. Yes.

Bringing Em into the world involved significant risks and challenges. Scleroderma can cause kidney failure in the third trimester. We had adopted our oldest, Mindi, as an infant, because my disease was too unpredictable to try to get pregnant. Once my health improved and I’d tapered off medication that could cause birth defects, we had to overcome my issues with infertility. Conception, seemingly so elusive, took five tries with the help of specialists.

Amazed to be pregnant after doubting for so long that it would ever be possible, I was on a high for the first two trimesters. No morning sickness, and I reveled in my new-found warmth during the winter, thanks to my pregnancy-enhanced blood supply. But by the third trimester, things got more complicated. Because of my scleroderma, I couldn’t deliver enough nutrition through my placenta, and she (though we didn’t know it was a she) was small for her gestational age. In order for her to receive needed nutrients to fully develop, I would have to deliver early, around 36 weeks, after an amniocentesis to determine if her lungs could handle life outside the womb.

But we never got that far. At 34 weeks, I developed preeclampsia and landed in the hospital for six days. Lying in my hospital bed after Al went home the first night, limp and heavy from the magnesium sulfate drip that was countering risk of a seizure, I thought of Al’s mother, who had died just six weeks earlier from congestive heart failure and complications from two strokes. She hated going into the hospital each of many times over a half-dozen years. At that moment, scared and lonely and vulnerable, unable to move freely, I fully grasped how she must have felt, trapped in a body that she no longer knew.

After a day of observation and tests, which left me feeling ever more helpless, induced labor began. This was not fun. Seventeen hours of increasingly intense contractions later, the doctors gathered around my bed for a powwow. The only way to cure preeclampsia is to deliver the baby, and they wanted to do a C-section. My cervix was still barely dilated, my kidneys were shutting down and my blood was taking more than 20 minutes to clot, so there was no hope of an epidural block. I was also, though I didn’t fully understand in the midst of all that pain and anxiety and exhaustion, at high risk of hemorrhaging. All of this was taking place in the midst of a major March snowstorm (not unlike today’s) that had prevented my wonderful perinatologist from getting to the hospital.

Just at that very moment, Em—always one with a mind of her own—decided it was time to come out the natural way. I had a sudden, extraordinary need to push. My water broke. Less than two hours later, she emerged on waves of forceful contractions that felt like I was turning my body inside out during delivery. I was yelling so loudly that the male medical student who had joined in to observe told me later I sounded like a madwoman.

My placenta snapped during the delivery. To spare me any more pain, they knocked me out with a very powerful general anaesthetic before extracting it. I barely saw Em, swaddled in blanket and white cap, before she was whooshed away to the NICU and I passed out.

When I woke up, I was hallucinating. I saw Al smiling at me over the rail on my bed (this much was true), framed by a vision of Mindi’s Playmobile figures hovering over primary-colored shapes. Later, when I overheard some nurses discussing my IV, I was convinced they were trying to poison me and take my baby away. Al brought Mindi, then only three-and-a-half, for a visit, but I was still too weak to be able to give her a good hug or be much of a mothering presence during this major transition in her own young life.

I didn’t get to meet Emily until the following afternoon. It was late on a Friday. By then the magnesium sulfate had washed out of my system, and I could control my muscles again. I got myself dressed in the mint green turtleneck and rust jumper I’d worn to the hospital and was wheeled over to the NICU to see her.

There she lay in her isolette, all three pounds and slightly less than six ounces, with IV tubes and monitor leads snaked all over her tiny, wrinkled body. Al had already held her earlier that day, so I couldn’t take her out of the clear plastic box-bed a second time. Instead, I put my hand through the side access hole, stroked her downy back and sang to her—Shalom Aleichem, the traditional Friday night greeting that welcomes guardian angels into the home for Shabbat. Afterward, Al told me he had sung her the same melody.

One month later, at four-and-a-half healthy pounds, Emily finally came home. We placed her in her red pram’s detachable bed on the dining room table. There she lay and looked and looked for more than an hour at all the colors—the cream-and-rose wallpaper, the moss green curtains, the crystal and brass chandelier, our admiring faces. So different from the pale hospital setting where she had lived her first weeks.

After I’d regained my strength, I enthused to my rheumatologist that I’d like to do it again. He suggested that might not be such a good idea. “Do you have any idea how sick you were?” he asked. Always good to have people in your life who tell you the truth. It took every ounce of energy I had to parent my two amazing daughters, now, officially, both adults.

Today at 21, Em is a petite powerhouse, a young woman of strength and determination, with a clear goal for her remaining year of college, graduate school and beyond. Smart, beautiful, funny and sweet, she has a gift for words, an analytical mind and a great desire to help others. We chat often, and I look forward to her visit home later this week for her spring break and Passover.

She has blessed us, many times over, by her presence in this world. On this milestone birthday, we have much to celebrate.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Comments

  1. Kathy Pulda says:

    “Smart, beautiful, funny and sweet, she has a gift for words, an analytical mind and a desire to help others”. Well, well, well. The apple doesn’t fall far from the tree!

  2. Ana Luisa Monge-Naranjo says:

    Beautiful!!

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