At the National Down Syndrome Congress convention in Kansas City at the beginning of August, we had the opportunity to hear Kim Edwards speak about and read from her book, The Memory Keeper’s Daughter. Afterward, she signed books, and we bought a copy and had her inscribe it to Julianna.
Christian read the book the week following the convention, while he was on vacation. “This book is really depressing,” he said at least three times a day. And yet he devoured it. He read at every moment—an hour at a time, lounged across the couch, sitting at the table, bringing it with him wherever we went.
At the end of the week, Christian was a new man. Relaxed, settled, back to his old self—he hadn’t been himself in so long, I had ceased to notice it. And he knew it, too. He was the one who pointed it out to me. During that week, he began laughing at Julianna, playing with her, calling her “cute” for the first time—he’s not a baby person; it took him months to admit that Alex was cute, too. He has been a wonderful father to our daughter, but that week, he bonded with her.
Probably it is coincidental that he happened to be reading that book at the same time.
But now I’m reading it. And from the moment Phoebe was born, with her black hair and her delicate skin, in my mind she had Julianna’s face. Phoebe is Julianna. The shock of discovering that your newborn child has Down Syndrome, the terror, the revulsion you don’t want to feel at the idea that it could be true— I recognized all of it. But when the father told his wife that their daughter was dead, my psyche reared up in a white-hot blaze of grief, of outrage, even though I knew it was coming.
I ran to my daughter, swept her up, hugged her as close as I could, and I said, “Oh, my darling, beautiful baby girl, how could anyone give you up?” And then I started crying.
Forgive me if I ramble a bit today. I try to stay brief in my blog, but I haven’t reflected on our experience as parents of a child with DS in a while, and I finished my first draft of my new novel yesterday, so I think I have earned a little diversion.
Sunday on the way to the band concert, Christian told me to expect that lots of people he worked with would want to see the kids, particularly Julianna, who hasn’t been shown off around campus as much as her brother was when he was born. (For several reasons—hospital and doctor visits, plus the general unwieldiness of having two kids along, the move, etc.) People keep asking his boss, “Is Christian really doing OK?”
I found these questions confusing. Then I realized that people have been asking me, too. And I realized, too, that they’re asking because they don’t realize that we have settled into normal life. I think that for a lot of people, the idea that life could ever go on as usual seems impossible. I remember one exchange in particular, with a wonderful woman I know, who spoke of a family member with DS—a family member who is now deceased. I came away from that conversation with the knowledge that many people are deeply, deeply uncomfortable around people with disabilities, conditions. I say that completely without malice because I was (and remain, to a certain extent) one of those people. It’s a long-standing shame of mine that I lived my life unable to look past a person’s disability.
Because of that, I am supremely grateful to have been given the opportunity to love–passionately, fiercely, and in awe–a little girl named Julianna Margaret. A baby who insists upon rolling onto her tummy, even when she knows perfectly well she hates being on her tummy. A little girl with the goofiest smile I have ever seen, and a sparkle of mischief in her eye. A beautiful, drop-dead gorgeous, baby girl with a heart-shaped face, long eyelashes, a rosebud mouth, and long dark brown hair that gets into impossible rats five times a day. Who won’t go to sleep during the day, and rivals her big brother for loud vocalizations. A baby so determined not to miss a single one of life’s experiences that her little thumb migrates to her mouth even while she’s nursing, and then gives me the innocent look that says, “Hey, what’s up with this? Why isn’t it working?”
Yes, we’ve been in crisis mode this year, hopping from one hospital to the next—four hospital stays! Heart surgery! A new house! Selling an old house! Toilet training! But Christian and I toss the baby back and forth across the dinner table when one person needs both hands. We dissolve into laughter when she sticks her feet up in the air. We make complete bumbling fools of ourselves, mimicking her silly baby noises. We live for making her smile, and keep a sense of humor when she’s overtired and fights going to sleep.
In other words, we have a baby. And that, in essence, is the point that I believe Kim Edwards was trying to communicate in this book. And the writing truly is spectacular. I’m only 90 pages in, and I have a feeling that I, like my husband, will be changed by the reading.
I had read “Memory Keeper’s Daughter” a while ago (Probably around the same time you did).
I just remember thinking it was not a book I would recommend to parents of a child with DS. I thought it depressing in relation to the family that was deprived of the gift of Phoebe.
A couple close to Kevin and I chose to abort their little son with DS. Every year that goes by I can’t help but think how their life and all the lives of those around would be different had they not made that choice. I think how I would khave loved to have taken that little one and raised him as my own.
I met a woman recently (one of my patients) who had a son with DS when she was in her late forties. She adopted a second son with DS to be his little playmate. I was so amazed because she was able to adopt a child when she was fifty years old. (“Oh, they’ll practically give away a child with a disability” she said)
These little angels are exceptionally advanced in giving joy and love unashamedly, it is amazing to me that the world is willing to put such value on other things like higher IQs and not on those souls who embody to such a high degree what the world craves, joy and love.
God Bless you and Christian for accepting His little angel of love.