My Granddaughter – Down Syndrome and What I’ve Learned

This is such a beautiful and important post from Elaine Ambrose, and we are so honored that she chose to share her story on Midlife Boulevard. What a gorgeous family.

My precious granddaughter, Sweetie Pie, celebrates her 5th birthday today, and the family will celebrate with a festive party that includes three generations of grandparents, uncles, aunts, and cousins who adore her. She has come a long way from her two-week stay in the intensive care unit where she struggled with respiratory and heart problems. Now she’s a spunky bundle of energy who show no signs of breathing or heart problems when she proudly and loudly sings “Let it Go” from the movie Frozen.

Photo credit: Shady Lane Studios of Boise, Idaho.

For her birthday party, we’ll come together to sing, laugh, and celebrate the extraordinary life of this little girl who has the power to unite all of us. She is a reminder that blessings can come in small, unpredictable packages that may not look like or learn as quickly as others. She is a radiant example of abundant and unconditional love in a world too focused on perfect images and shallow affection.

Sweetie Pie was born with ten fingers, ten toes, and Down syndrome. I’ve never been one to wallow in the “Life is not fair” pity party, but when she was born I was confused about the unknown: Why did this happen? How do we help? What is her future? What about my daughter?

Five years after the initial shock, the extended family now is convinced that this adorable child full of funny faces, squawking noises, and death-grip hugs has much to teach us about love and life. And she answers my worried questions: It happened because an extra chromosome appeared in the early stages of fetal development. We can help by loving her and offering to help her parents. Her future is better than if she had been born fifty years ago and institutionalized. And her mother outshines Wonder Woman.

Uneducated and insecure people reveal their prejudices when they ridicule someone with learning and physical disabilities such as Down syndrome. When I’m with Sweetie Pie, sometimes I get “the look” from others or the recognizable sigh of “I’m thankful that didn’t happen to me.” Thanks to Sweetie Pie, I have learned that ignorance and cruelty are bigger handicaps than a little extra chromosome.

It’s not all hugs and kisses. Sweetie Pie faces developmental challenges that other children don’t experience. Most children with Down syndrome require regular appointments with various specialists, and other siblings must adapt to the family’s schedules. But Sweetie Pie attends school and is learning her letters and numbers, and she played Mary in her pre-school Christmas play. She was born with her parents’ tenacity and her own unique strength. She is destined to amaze all of us.

We have a photograph of my daughter with her two daughters. She is holding her newborn baby who is wearing oxygen tubes as the three-year-old stands beside them. My daughter looks into the distance, and her gaze reflects all the emotions of a dedicated woman. I know she’ll fight like a warrior to protect and raise her children, and with the help of a good husband, she is the strength, the passion, and the force that make everything work. She is awesome. Of course, she is. After all, she’s my daughter.