The Waiting Game

Sleepy minion boy

I am notorious for being the most impatient person in the world. I have such a difficult time waiting for things that I know are important and need to get done. I have always been impatient, which negatively effected me throughout my school years. For example, I would be handed a test or an assignment in class, and I wouldn’t even read the directions and breeze through it. Not sure if it’s anxiety or if I don’t like the feeling of waiting or anticipation, but I have never been the type of person that could sit back and see what happens.

Looking at where my life is now, I wish I leaned the skill of patience in my childhood. When you have a child with ASD or Developmental issues, life becomes one giant waiting list. From the initial phone call to early intervention, to our current wait for the CARD program at Kennedy-Kreiger, it’s been over a year that we have been waiting for clear answers. I should feel proud that I’ve made it over a year of waiting, but my anxiety of not knowing has been constantly on my mind.

At work this week, I was presented with some questions about my personal leadership strengths, areas of growth and how I perceive my current leadership roles. I used my blog as an example of how I want to lead other parents on this journey, to understanding and what they can do to make their lives easier. I also want to lead others because I want those parents that have neuro-typical children to accept and understand what other families may be going through. At the time, I always feel as though these miscellaneous tasks activities at work are boring and pointless, but then I sit and really think about the questions and reasons why we do them. In a way, that boring and pointless activity inspired this post.

Back in December 2017, we had genetic testing done as part of a research study through the Clinic for Special Children (CSC) in Strasburg, PA. The clinic is strictly devoted to children with Amish or Mennonite backgrounds and because Mennonite roots are in both Derek and my family, Grey was able to be seen there. We have been waiting for results since December. This past week, I finally received a fax from the clinic that had an overview of the results, but none that went into much detail. The results read:

“Thorough genetic results not available due to no severe abnormalities found.”

So for 10 months we have been waiting for some sort of genetic explanation as to why Greyson has epilepsy and that was the result. There was also another added comment to the fax, from the doctor G saw in December at CSC that said:

“Family history is positive for Autism Spectrum Disorder and borderline genius intelligence from biological father.”

Explains Roslynn’s ridiculous intelligence and observation abilities.

So for now, we continue to wait. We wait for more genetic testing through Johns Hopkins, a 24-48 hour EEG, a re-evaluation for his Autism Diagnosis and for an intake at the CARD program in Maryland. I wish I could say that I am used to waiting now, but I would be lying. I have however, gotten used to staying busy to keep my mind off of a wait, including some nice naps on weekends and evenings. Greyson has been enjoying them too.

A Friday “after work nap”

Rush Hour

Never again will I EVER make an appointment in Baltimore after 3 PM. Also, never again will I EVER bring Roslynn along with us.

As if Greyson’s crying for an hour wasn’t hard enough, Roslynn decided to give us a full-blown concert of nursery rhyme songs on the way home. Everything from “Mary had a Little Lamb”, to “Row, Row, Row Your Boat”, was on the set list. A 2 hour car ride of Roslynn singing at the top of her lungs, except for the time she was screaming because she wanted to call her Nana……Did I mention that I woke up with a headache and have had maybe 9 hours of sleep in two days?

Greyson’s appointment began as they all do: vital signs while he screams, cries and fights with us. Once the nurse got the vitals she could, we were escorted into the room to wait for Dr. Comi. The kids had built up energy that they needed to get out from sitting in the car, so naturally they decided to start wrestling on the floor.

I swear they love each other

In the midst of the WWE match happening on the exam room floor, Dr. Coming made her entrance. We finally got a definite answer- Greyson has NO brain activity consistent with Sturge-Weber Syndrome. This is great news! However, this does mean that he can no longer be seen at the Sturge-Weber clinic in Baltimore. We do know that his diagnosis of ASD still stands, so we were referred to the Center for Autism and Related Disorders (CARD), through Kennedy-Krieger. Unfortunately, this program is in Columbia, MD which is a two-hour drive from our house. We will weigh our options and determine how we will proceed, but in the meantime, we will see Dr. Comi again in January 2019.

Greyson will also be admitted into York Hospital on October 22-24 for a 24-48 hour EEG study. Our new local neurologist, who will be following Greyson’s care in the future, ordered the EEG in hopes that he could catch a seizure episode on EEG. The only downside to this is that Greyson will be hooked up to the EEG electrodes for a day or two, in a small hospital room that is not specifically for pediatric care. I’m having a panic attack just thinking about it. I’m hoping that this EEG will give us more answers and direct us where we need to focus our attention with the epilepsy diagnosis. As if this all wasn’t enough, we will also have our one-year reevaluation for G’s Early Intervention services within the next month, and his reevaluation at CADD to check in on his development.

Please keep Greyson in thought over the next few weeks. Derek and I feel like this is all overwhelming and exhausting, so I can’t imagine how Greyson feels with 2-3 different appointments per week, on top of his daily therapies. Pray for our strength and sanity also, because we typically run on very little sleep, both work full-time and have to manage 8-10 appointments per week for G. Somehow through it all we keep smiling and pushing through, despite wanting to give up and live a normal life.

I try to remember that God sends special children to special parents, and there isn’t anything that we can’t handle.

Even G keeps smiling through this process