>> Friday, June 12, 2015

The long wait is taking its sweet time. I have been staying busy and active and trying to not focus on what lays ahead, but as soon as I am not neck deep in a project, I look at things and relate them to the possible genetic outcome.

For instance:

I had to go to the Pharmacy and pick up his refills, not a big deal, takes a few minutes, costs a few bucks, but when one refill is expired and not ready and you have to go out to the car to get it AND then you end up waiting, what happens is a little off the hook.

Ava said:

Can I have a drink? Yep, and she chose it. It was sugar.

Ava said:

Can I have some candy? Yep, and she chose it. It was sour and sugar.

Then she saw the ring pop and we bought that. I answered a few questions and was incredulous when I was told that the Diastat needed a pre-authorization. What, I said, What? It was the Pharmacy's error, it turns out, but straightening that error made me sit longer. And looked around. I stared at the wall of supplements ahead of me and thought: what if what he needs has been in front of me for 5 years and I have been an arms length away from it this entire time?

One can not live like this so I moved into a different place mentally and focused on Ava and the fact that she was neither eating her sugar or drinking it.

When we got home, I watched Bug. I watched him play and smile at me. I watched him trade toys with his little brother. My mind was locked in the potential of what next week may bring.

More of the same? Less time?

I asked Glenn if he thought about it and he said:

No. It won't change the outcome. It is what it is and nothing I can think, at this moment, will make a difference.

Yes, I agreed, point taken.

Yet, here I sit. Guess what's on my mind?


Jayson Michael West June 12, 2015 at 11:12 PM  

It's on my mind too!! I'm obsessing about your answer as well. I'm thrilled for you! And scared and abxuius and all of those other emotions. These emotions feel a bit more intense knowing our DNA is being looked at this very day. We, too, hope to receive this phone call one day. Until then, I'm going to live vicariously through you and be your number 1 stalker waiting to hear the news. Love to you and your family

Post a Comment

What a Seizure looks like (Graphic Content Included)


Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

  © Blogger template Simple n' Sweet by Ourblogtemplates.com 2009

Back to TOP