Saturday, June 14, 2014

Together with Evie

Welcome to our 3rd Annual Salute to Rett Dads! Each day this week leading up to Father's Day, we will share a blog written by a father of a girl suffering from Rett Syndrome. Later in the week we will share a video slideshow of over 100 dads with their beautiful girls.

Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

Other blogs this week:
Rockin' Out in Rettville - by Eli Callaway
Inspired by Catherine - by Gordon Christie
Superpowers - by Jeremy Springhart
My Princess, My Everyday Light - by Juan Diego Perez
Being Avery's Dad - by Bryan Beeson
She Melts My Heart With a Single Smile - by Phil Covington

Written by: Frank Morris

I was recently asked if I would be interested in writing a post about my daughter and our relationship. After going back and forth in my head whether I could or would, I decided to give it a try. You need to understand that I am not the writer in my family, that would be my wife. If you have read her blog you would agree that she is quite good at it. For me it is much harder to express my feelings verbally, much less express them in written form.

Three and a half years ago when my daughter was born I was blown away. She was gorgeous! The things that stuck out at the time were her wonderfully long eyelashes and her long graceful little fingers. I thought, "There are the hands of a pianist." As she grew, healthier issues started to appear. First it was the lack of meeting milestones. Then it was hypotonia (low muscle tone), upper respiratory problems, scoliosis, and seizures. For the first couple of years it seemed my beautiful little daughter was inundated with issues after issue. In my mind I couldn't understand what she could have done to deserve the cards she had been dealt. It took two and a half years to learn the cause.

We finally received a diagnosis of Rett Syndrome in February 2013. Now we had a name for the culprit, not that it made anything easier, but at least we had a name.

Like any child, my daughter has her own unique personality. She has a wonderfully bizarre sense of humor. She laughs at things that some people would consider inappropriate. Slapstick humor makes her giggle the most so I often find myself making weird or rude noises to her to laugh. She has the most infections laugh I have ever heard. You can't help smiling when you hear it.

Probably the hardest part for me to see is her frustration. What I wouldn't give to make it easier for her to be able to communicate in a way that alleviates her frustration. The last three and a half years have been hard, scary, wonderful, and joyous all at the same time. She has made me a better person than I was before she came into my life. Where our journey will go...I don't have any idea. What I do know is that we are taking it together and for that I am thankful.

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