When Elise was a baby she was angelic. A penetrating smile and a sweet giggle complemented her happy demeanor. We, and everybody else, loved Elise as much as she loved to smile. She was perfect.
We can’t put a finger on a specific date when we began to notice Elise was falling behind. It was more like a feeling; an unwelcomed feeling that crept in but quickly dismissed. We would say things like, “She is just a bit behind because she is our third child and her older siblings help her out so much.”
As time passed we became more aware and a little more worried. Elise crawled at 13 months and walked at 18 months, but we were sure she could certainly catch up. She had 8 words she could say, but rarely said them. Once I heard them, I checked it off the list figuring she could talk.
The last word she said was, “Mama.”
Then came February 6, 2013, our lives would never be the same again. Elise went to her pediatrician for her 2-year well exam. The routine autism screening checklist became a nightmare. In a sense reading those questions and not checking any of those boxes became a haunting realization. Each empty box became indictment or an accusation to our little girl for not being a word we desperately missed: normal.
Little moments while I would run, drive, or be alone provided vivid realizations and questions: would she ever marry? Will Elise live with us forever? Will we change diapers for decades? Will she ever go on a date or get invited to a birthday party? Will she ever give a hug? Will she sing, whistle, skip, or play catch? Will she ever play dress-up, hold a doll, or understand the anticipation and joy of Christmas morning?
In June 2013 Elise was diagnosed with Autism Spectrum Disorder. I remember after it was confirmed to us and we were leaving the office thinking, “this is the rest of our lives.” We were scared, we were determined, we were heart-broken, we were committed. Her diagnosis came five days prior to her little brother’s birth.
Grief is real and so is grieving. After becoming more okay with the circumstances that life had imposed upon us, Elise’s pediatrician realized some behaviors and nuances that Elise exhibited seemed to contradict typical traits presented in children with autism. She began repetitive hand movements and lost some use of her hands. The doctor suggested that Elise undergo genetic testing to rule out Rett Syndrome.
Another new word: Syndrome.
It took eight months to work with insurance and navigate the waiting list to be seen by a geneticist. After evaluations with the doctor and a genetic counselor, Elise was clinically diagnosed with what initially appeared to be Rett Syndrome. Regardless, it wasn’t autism and the doctors were certain in their evaluation that Elise had Retts. To be sure of the diagnosis a confirming genetic test was issued.
After leaving the office my husband held Elise and carried her outside to the car. I walked straight to the van and began to cry. My husband held Elise in the parking garage squeezing her tight and crying. We cried in the car for a long time. No amount of planning, praying or hoping could prepare us for this. The experience was so much more poignant than thinking about it had been. We drove in silence for a long time back home.
It was no longer when Elise would talk again but if. Now instead of worrying about cognition, the realization of physical limitations and deteriorations were now parts of Elise’s complex puzzle.
For the next few days we spent hours crying, praying, and holding on to hope that seemed so far away. We felt every emotion from despair and depression to anger and frustration.
After a few weeks, the genetic test came back as normal. Though Elise still has the clinical presentation of Rett Syndrome, a large-scale panel was done to look more carefully at her DNA and rule out other possible syndromes.
At this point we do not know what the future will hold for our little Elise. We’re continuing to meet with specialists in hopes that more information will help us determine a correct diagnosis and a map leading us to be able to help Elise in the most effective way we can.
As a friend of ours once commented, perhaps Elise’s purpose on earth was simply to make others smile. Anyone who has met her knows her amazing capacity to do that very thing. She has a divine purpose on this earth and part of that purpose necessitated her incredible spirit to be housed in an imperfect body.
I am so grateful to have the opportunity of raising a special needs child. While I try my hardest to teach her how to use a spoon and form a point, I’ve come to realize she is teaching me more important things; heavenly things. In the last two years I have been given a crash course on compassion, empathy, love, gratitude, service, persistence, patience, and selflessness. She is helping me become more like our Savior, Jesus Christ. How can I not be grateful?
Follow Elise’s story HERE.
Story written by: Lindsey
This story was first seen on www.oursilentprincess.com
This story was also seen on Real Imprints.
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