“We have serious concerns about your daughter,” a doctor I did not know pronounced.
No fanfare, no introduction. I was alone in my hospital bed, about nine hours post-Cesarean as he laid out a list of at least a dozen things that were “cause for concern.” The real kicker was when he said they had no way to predict how long she would live. Maybe a month, maybe a year.
And just like that, the pretty little quiet life I had imagined went out the window. I was 23 years old.
It was Thanksgiving weekend, 29 years ago. We were new to Washington state, having moved there for my husband’s first job out of college.
We knew almost no one, but we were OK — we had each other. Now, as I lay weeping alone, I felt great grief for the first time in my life.
This hoped-for, prayed-for daughter would never wear my wedding dress, never graduate from high school, might not even see her first birthday. I was overwhelmed and felt completely alone.
Heaving great sobs and in terrible mental, emotional and physical pain, I managed to call my husband and choked out, “There is something wrong with the baby!” He soon arrived, our 19-month old son in tow, and we clung to each other for support. I felt completely unequipped to deal with a child with special needs and to be honest, it felt like a punishment. How could God do this to me?! To us?
I knew all the church answers but right then, at that moment, they felt trite and stupid. I hated it when people said: “God must think you’re special people to give you a special child.” I didn’t want to be special! I wanted to be normal!
Of course I loved that baby fiercely. We started rounds of casting for her club feet, then surgeries when the casting didn’t work. We had braces made for her tiny wrists to try to straighten them out. I learned about arthrogryposis, an orthopedic condition affecting multiple joints and microcephaly/lissencephaly, or a brain that never developed properly. I gave up breastfeeding when I realized she was really struggling to suck and swallow productively. And I totally ignored the social worker who advised us we could put her in a home for “special kids” and just visit occasionally. Lame.
But, I was still grieving, and to layer on the grief, I felt guilt for feeling grief. Oh my, the cultural “lessons” we absorb sometimes. I thought if I had enough faith, I would accept God’s will without murmuring. In fact, not only accept it, but embrace it. I did not. I struggled and struggled and struggled.
Then one week that all changed. Elizabeth was nine months old, Aaron was 2 and I was pregnant with our third when we decided to take a trip to Utah to attend Brigham Young University’s Education Week. I don’t remember how many classes I attended or what else I learned because one class became my lifeline. It was a class on adversity, taught by Dr. Brent Top and it changed my life. He taught me that it’s OK to grieve — it’s commensurate with the amount we love. Grief is hard! And it was OK that it was hard. It was OK to question. It was OK to want things to be different. With that “permission,” the sun broke through the clouds and I have never again felt guilty for grieving, even though I have had many more occasions to grieve.
How fitting that it is the month Elizabeth was born is also National Adoption Month. Without her, we would not have been open to adopting special-needs or “hard to place” children. We would not have begun our adoption journey two years later and our lives and those of our children would have been very, very different.
As I look back at that time now, it is not with grief, although I do remember it. Rather, it is with tenderness, love and gratitude.
My life — our family’s lives — have been blessed immeasurably because Elizabeth came into it.
Holly Richardson was blessed to be able to love and care for Elizabeth for 17 years, far past her projected life expectancy of less than one year. She will be forever grateful.