Trials come to all of us, but there are some who seem to share a larger burden. My niece, Tara, and her husband, Dan Thompson, were given one when their first child, a daughter they named Emma, was found to have hydrocephalus, which is the buildup of cerebral spinal fluid in the ventricles of the brain, and was not supposed to live.
September is National Hydrocephalus Month. A yearly hydrocephalus walk this year is on Sept. 19 and starts at Murray Park Pavilion No. 5. These walks help bring awareness and also support the association’s mission to promote a cure and improve lives. (For registration and other information, see hawalk.kintera.org/faf/home/)
Tara has allowed me to share her story in hopes of bringing further awareness through some of her posts she's shared on her private social media accounts.
“I will never forget the day I became a mother," Tara wrote about Emma, who was not supposed to survive. "It was not the way I had always dreamt it would be. It was a day full of fear, tears and lots of unknowns. I was incredibly angry and bitter, upset and overwhelmed.
"But one thing I knew for sure. Heavenly Father, for some reason, trusted me with this amazing baby girl. And though I feel completely inadequate, I am her mother. I may not do the best job or always have a smile but I know I will love her more than anyone ever will.”
Though Emma lived, she was deaf and blind. As her brain healed, it developed new pathways and rewired itself. Slow changes in her hearing and vision were noticed.
She endured many visits and procedures at Primary Children’s Hospital. Shunts were placed when she was 2 days old to help drain the fluid from her head, and there were emergency runs in her first year when her system wasn’t working right.
Tara posted, “Three surgeries with No. 4 on the way — countless MRIs, ABRs and other tests and procedures — it never gets easier, and I still have such a hard time seeing my baby go through so much.”
Dr. Jay Riva-Cambrin later performed a new procedure avoiding the need for a shunt. Tara posted, “We need more progress in the study and treatment of hydrocephalus! We sure love Dr. Jay! He is a miracle worker!”
Tara and Dan were never alone in their struggle. Their parents stepped in for support. Friends and neighbors help raise funds for medical bills, but the costs were constantly a drain. Many physical therapists and volunteers helped Emma’s little body to develop and get stronger.
After another milestone when Emma was 9 months old, Tara writes in this post, “I’m a proud mommy tonight. Emma's head is so big I didn't know if she would ever be able to lift it up while on her tummy. Well, she is deciding to prove me wrong. Oh Emma my life is complete.”
Miracle Emma is now 3 and going to a special preschool this fall. Her parents had another little girl a year younger who teases but also loves and entertains her older sister.
These excerpts from two posts tell the rest of the story. This is the first one:
“I am not one of those people that say about their trials, ‘If I could go back and change it I wouldn’t.’ If I was given the chance to change Emma's fate you better believe I would. And as the years have gone by, we have mourned the loss of our ‘normal’ life and ‘normal’ daughter and adapted to the special needs life with our special needs daughter. It's been a learning curve. Some days I don't even notice it and some days it hits me like a semi truck. We have learned so much, and have grown as a couple and family.
"She has taught us about love, life and enjoying the simple things. My love for her is so fierce that at times it scares me. Because if I can love this much, I can hurt this much. She is the light of my life even though I've aged 40 years and gained some nasty stress wrinkles and weight since she was born.
"She can throw fits and make you wanna pull your hair out but she can also flash a ‘cheeser' smile that makes any sadness or worry disappear. I love you my Emma, you are my sunshine.”
And this is the second one, which she shared last month:
"My friend sent me a text today telling me to listen to a song by Collin Raye, ‘She's With Me,’ that he wrote for his granddaughter who was handicapped. Naturally, I've got nice mascara streaks running down my face.
"Before Emma was born, I was looking online trying to find blogs or support groups for families with kids with hydrocephalus. I found a blog where they had posted pictures of the day their baby was born. They were smiling. I asked my mom ‘Will I ever be able to smile? Will I ever be happy again?’ And she hugged me and said ‘Yes. I know you will.’
"For a while after Emma was born I would see all these people with kids with disabilities and envy their optimism. Their strength. Their positive outlooks. Their happiness. I felt guilty. Why couldn't I be that way?
"After years, I realized they had gone through their initial mourning and sadness, they were further along in the journey. They were now in the place where it was their new normal and they were happy despite the challenges their child with disabilities faced. I can say with hope that I am finally out of the mourning phase of special needs parenting. Does that mean I don't ever get sad? That I don't wonder what could have been?
"No. I still do. But I find myself feeling happier, more hopeful, and more grateful than before.
"Emma's future is unknown, an empty canvas. I want to paint it with love and hope and not bitterness and fear. I love this girl so much, and wherever I go I will proudly say ‘She's With Me.’”
Email: sasy273@gmail.com