Thursday, June 14, 2012

So Weak So Strong

With Father's Day coming up, we asked Rett Dads to be our guest bloggers for the week. 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. 

our other Daddy posts this week:
Pete Curry, Maisy's dad: "No Laughter? No fun? No thank you."
Bill Hileman, Brynn's dad: "Be Happy No Matter How Large the Obstacle"
Sean Schenk, Kristyn's dad: "I just have to love Kristyn with all my heart."


Blog #4: Bill Farnum, Ella's dad

In late 2006, my wife Beth and I were desperate people, conducting searches on the internet until 2AM every night. We were not searching for the latest and greatest travel deals, or the newest YouTube video sensation. We were searching for all the information we could find on Autism spectrum disorders, as our daughter Ella had then recently received the first of numerous diagnoses. Doctors, therapies, causes, clinics, insurance coverage, special diets.... you name it, we were researching it.

Later in December of 2007, Ella was finally diagnosed with a debilitating neurological disorder called Rett Syndrome. It is a devastating genetic disorder that robs young girls of their speech and motor skills, and can leave them crippled and unable to communicate with the outside world.

When we received the diagnosis of Rett from our pediatrician, a stopwatch started ticking in my head. It comes and goes and can be louder on some days than others, but it is always there...tick, tick, tick. I don’t want to say that I speak for all parents of special needs children, but I know that I feel like the clock is always ticking down and that we can always be doing something to help better our children’s futures.

Parents of special needs children tend to “ask a lot.”  If you were not comfortable raising your hand in class in school, you are going to have a tough road ahead of you. We ask a lot of questions: Who is the best doctor for that? Does insurance cover it? Do you know of a good dentist that works with special needs? Where can I find diapers for a 13-year-old?

We ask a lot from our special needs children. We ask them to endure endless hours of physical, occupational and speech therapies. We ask them to eat just one more bite. We ask them what they want or need, possibly 50-60 times a day. And we ask them to please just keep breathing.

We ask a lot from our other children. We ask them to be patient while we work with our special kids. We ask them to understand things they will not comprehend for a very long time. We ask them to love their siblings unconditionally.

We ask a lot from our therapists. Can we double up appointments this week? What else can we try? How do YOU think she is doing?

We ask a lot of our children’s battery operated musical toys. I think we single-handedly made Duracell stock jump 2 1/2 points last week....

We ask a lot of our friends and family. We ask them to try and understand situations that they have never been in and may not be sure how to react or help out with. We ask them to understand that we can’t make it over again for dinner because Ella is having “a really bad day...” We ask them to just listen, a very hard thing to do.

We also ask a lot of ourselves. We ask ourselves to keep asking, and to never stop until our children can kick a soccer ball, have a tea party with their friends, and say “I love you Mommy and Daddy.”

And as much as we ask, we appreciate more. People that say “no problem, sign me up” or “just tell me what I can do to help” are what make us get up in the morning and start asking all over again...

I am a big fan of music and it is an integral part in our lives. One of my favorite bands is Gov’t Mule, an offshoot of the Allman Brothers. I was listening to one of their new songs the other night entitled “So Weak So Strong” and whoever wrote it must have a connection to Rett Syndrome as it describes our girls to a tee. It goes:

So weak so strong, nothing's forever in her universe
Bringing comfort, bringing pain, so weak so strong

So weak so strong, turning mountains into seas of dust
Finding courage when all hope is lost, so weak so strong

Men have died from half the pain she endures everyday
Many times I've seen her spirit fade away only to rise again

So weak so strong, there's only one of her in the universe
Bringing darkness, bringing light, so weak so strong

Men have died from half the pain she endures everyday
Many times I've seen her spirit fade away only to rise again

So weak so strong, she's never really what she seems to be
But life without her seems so bleak, so weak so strong

- Bill Farnum

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