I am 48. Thirteen years ago, on April 25, 1999 my daughter Jenni gave birth to the most perfect little bundle of joy. Celeste Alena. Jenni was 15. I was 35.
I remember walking around with the silliest grin on my face for days. I smiled so much my face muscles ached 😀 My daughter was an amazing birther, short fast labor, just like me.
We were surrounded by people who were important to us. Carolyn, my partner in birth, Lisa Wick, my midwife friend from school, there to take over if I needed to be Jenni’s mom instead of midwife, Ray, Celeste’s father, Dodi, who gave birth to a 10 lb 12 oz boy the October before and Candy, a family friend who videotaped the birth.
We reveled in Celeste’s perfectness. Her sweetness, how wonderful she breastfed, how well she slept.
Around 5 weeks old, I started feeling something was “off” about Celeste. She looked through you, not at you and she wasn’t tracking us with her eyes. Our family pediatrician told me to be the grandma, not a midwife… that everything was normal. I wasn’t happy with that. At 9 weeks old, I secured a consult with a pediatric opthomologist. he diagnosed Celeste with a retinal issue and said she was legally blind. Devastating, but doable. I was actually relieved.
At our 13 week visit to the pediatrician, we brought her the info from the eye doctor. She was humbled by it, and murmured an apology. She had been our family ped since 1981, I understood. Then as she was examining Celeste she uttered the one word that threw our lives upside down… MICROCEPHALY… I burst into tears, knowing the gravity of such a diagnosis. Dr. Rojas was also very emotional… Poor Jenni and Ray had no idea why we were upset. Microcephaly means small head/brain. Back in 1999 if you searched (there was no google) the term, it came up “profound retardation, short life span, approximately 10 years”. We were devastated.
A neuro consult 2 weeks later would give us the diagnosis of Agenesis of the Corpus Collosum, essentially Celeste is missing the middle part of her brain, the part that separates the left and right hemispheres. She is severely disabled. She does not stand, walk, sit or talk (a few words every once in a while)
She DOES bring happiness to those around her, have the most brilliant smile, loves stealing toys from babies if she’s propped close enough, has a clever streak, understands EVERY WORD YOU SAY!!!
She is 13 today… A teenager. I’m a grandma to a teenager… WOW!
Here she is, the center of our universe!
HAPPY 13th BIRTHDAY, CELESTE ALENA BLANKENSHIP!!!
I love you,
You know it’s true…
Celeste Alena Blankenship,
I LOVE YOU… Momma xoxoxo