Today is just one of those days.
I am recuperating from my emotional response to opening a letter in the mail from our county’s Developmental Disability (DD) dept yesterday. I actually received the letter last week, but waited to open it in dread of what it may read. Really, I just wanted to open it with a clear mind. That took a few days.
To my surprise, Dinah was deemed eligible for support services, and placed on a level 1 waiting list.
This is a huge deal because I have fought for the last 4 years to receive disability services for her. My issue with the government concerning support for people with disabilities is a whole other story.
I got up this morning remembering the letter and very excited that we are one step closer to getting her some of the large price tag equipment she needs.
Motorized wheelchair. Enclosed safety bed. Lift. Communication devices. Adaptive play equipment. Safety bath chair. Wheelchair accessible vehicle.
Just to name a few.
Then I mentally and emotionally spiraled into what all of this really means.
I started missing markers. (go to my previous post of what Missing Markers means for clarification).
I started wishing that I was pondering different plans for Dinah’s future.
Like her first dance. Prom. Buying her a starter car for graduation.
I started thinking about the conversations we may never have.
About her best friend at school. Her first crush. Her nervousness over her first spelling bee competition. Her excitement about receiving her first college acceptance letter. Her questions about life.
Yes, yes, yes of course she still may be able to do some of these things.
But, when you have a child with severe disabilities it is wise to plan for the worst while hoping for the best.
Because you absolutely do not want to be caught empty handed if worst shows up.
I am a firm believer in the power of faith. And yes, I believe that miracles happen everyday all across the world.
I believe that the fact that Dinah is even here IS a miracle. Various things have happened in my life that are a miracle in my eyes.
But….I also have to live in the reality of now. The reality right now is that Dinah does not walk or talk. The reality is that I have to plan for the probability that this will never change.
This reality is depressing.
The only comforting part of any of this is that Dinah absolutely loves life. She is such a happy child. She really only cries when I fix her hair, she is hungry or thirsty, during any type of therapy, or when her little sister snatches a beloved object from her.
It is like she wears rose tinted glasses the vast majority (90%) of the time. You know, the type we all wore before life smacked them off of our faces.
It is comforting to think about her future and always see those rose tinted glasses nestled on her smiling face.
That I can live with.
That makes me happy. Because most of the things we do for our kids is geared towards making them happy. Dinah is happy on her own.
That adds a dimension to my perspective of Dinah’s future. Giving it a very subtle, yet effective, rose tint.
Oh Dinah, if only I could view the world like this all of the time.
You inspire me to challenge myself everyday to do so.
To wear your rose tinted glasses no matter what I am looking at.
© Kelley Daniel, http://www.missingmarkers.com, 2014