Last summer, we learned that we would be grandparents, again, in early 2015 and it was twins. Two more babies to love! How cool was that!
Early in the fall, our family was told that one of the babies not only had a severe heart defect but that she, our precious new granddaughter-to-be, would be one of the 6,000 babies born each year in the U.S. with Down syndrome. Her twin and brother would be born “normal.”
Gerry and I were not sure if it was our old-age wisdom, or perhaps simply our unaffected acceptance of any baby to our family, that this child would have lessons, wisdom, and gifts to offer our family. We were, so-to-speak, grateful just to know that she would be joining our family and we were convinced that all of our family would welcome our granddaughter and grandson with open, loving, and accepting arms. We felt amazingly blessed with this news.
It wasn’t until the actual birth in January that we actually knew this to be true. Both babies were wanted and cherished and miracles to be celebrated. Neither is valued more than the other. And neither is valued less. Our family is united in our love for both.
Medical science has performed brilliantly in the past twenty, thirty, forty, fifty years or more. Children with Down syndrome, once predicted to live only to birth, and then to age 20, are recipients of 20th century medical marvels. Heart defects that once were a death sentence are now routinely fixed soon after birth. Early intervention with speech therapy, occupational therapy, and acceptance into the mainstream classroom have changed the lives of these children who “rock the extra chromosome.”
Children born with 47 chromosomes, specifically an extra copy of the 21st, have Down syndrome or Trisomy 21. It doesn’t define them. They are simply different than the rest of us. It certainly is true that they most often are slow to achieve the normal milestones other children achieve. They have physical characteristics that set them apart from the rest of us. Yet, they resemble their family members and they can be feisty and opinionated. They can be obstinate and frustrating. They can be happy and sad. Most of all, though, they have abilities that no one thought they had years ago and they can be like all children everywhere. They are, simply, as unique as you … and me.
Gerry and I have been reading some amazing books that have been guiding us. Many have been recommended by our daughter and daughter-in-law (parents – moms – of our newest grandchildren.)
First, is a book by one of our Norwood librarians, Outreach librarian and author, Nancy Ling. “My Sister, Alicia May” (2008) is a gorgeously illustrated picture book (with art by Shennan Bersani) and is the loving story of sisters. It beautifully and realistically explains the frustration, acceptance, and love that every family with a child with Down syndrome experiences. (There are many other books for children in our library and in the library network that can explain the differences and similarities of Down syndrome to children.)
“Common Threads, Celebrating Life With Down Syndrome” (2001) is a pictorial work, coffee-table sized, and is full of wonderful personal stories and photographs of adventure, achievement, acceptance and inspiration. It was donated to our library by the Massachusetts Down Syndrome Congress.
“Road Map to Holland” by Jennifer Graf Groneberg (2009) is unusually titled. Very early on in the book, you learn that the title words are taken from a widely published and well-known 1987 short essay by Emily Perl Kingsley. In “Welcome to Holland,” Kingsley compares parenting a child with a disability to finding yourself at a different destination than that which you planned. Kingsley writes that it was like planning a trip to Italy but finding herself in Holland instead. Italy is beautiful and full of adventure. And so is Holland.
Groneberg’s memoir, “Road May to Holland” is a lovely book that shares the story of her twin boys, Avery and Bennett – one with Down syndrome and one with no disability. When Avery is five days old, Groneberg and her husband find out that the road map has changed for them. They struggle with the diagnosis, the hardships, the doctors and the specialists. Groneberg learns that she has bond with both children, and especially with this special child.
In “Bloom” (2012), Kelle Hampton, the author of a popular blog, “Enjoying the Small Things”, shares the story of the birth and first year of her daughter, Nella’s, life. In “Life As We Know It” (1996), father Michael Bérubé recounts the first four years of his son’s life and his struggle to help James reach his full potential.
Science has changed the lives of so many families since 1968 when a diagnostic test for Down syndrome was developed. Tests are more and more reliable and genetic testing has become the norm for expectant parents. Raising a child with disabilities is not for everyone and the decision is not for anyone to judge. That said, the heartbreaking wait and the difficult decisions that have to be made are excruciating for everyone.
“Choosing Naia” (2002) is a book that breaks your heart, raises your spirits, soothes your soul, and explains the decision to decide to welcome a baby with Down syndrome into the heart of the family. Author Mitchell Zuckoff is not the parent; he writes instead of Greg and Tierney Fairchild and their struggle with the diagnosis and the decision. The book shares the miracles and science that keep Naia alive after birth and through open-heart surgery. It is a book for anyone who wants or needs to know more about the struggles with the diagnosis of Down syndrome and the brave decisions that are made.
In my journey through the books available in our network, I read some of the fifty essays in “A Different Kind of Perfect” (2004) edited by three of the authors, each with a child with special needs. Mother Jennifer Beitz ends one of the accounts with words that become very familiar in this book and in almost all of the personal stories and on the blogs of family members who write about their precious children: “I see my daughter as the gift that I never thought to ask for. We are all learning more from her than we could ever teach her.”
There are many more books about Down syndrome and the children and families who face the challenges and blessings. Please call the library if you need help searching the Minuteman Library catalog for any information.