Waking up today was tough. I purposely hit snooze an extra 3x just so I could come up with an excuse to not go to work today. But alas, I have children to feed and hundreds of dollars of medical bills to pay. Not sure if I was sleep walking last night, but I ended up sleep texting people random emojis around 2:45 am.
When I pulled into the parking lot at work, I instantly felt dread. My role at work is essentially to talk to parents and potential clients that are experiencing similar circumstances that I am with my own son, so I wasn’t too ecstatic about putting on a smile and forcing myself to be alive and friendly. Not to mention that I have had a migraine since Friday’s trip to Kennedy Krieger.
I love my job and I love being able to connect parents with resources that could change their child’s life. I love hearing different stories that they share and I often gather lots of information and resources from the parents that call in to the new patient line. When I took the job at CADD as a TSS in 2012, I never could have imagined that I would still be working for the same organization six years later, or that I would have an autistic child and husband.
I am a firm believer that God guided me into this job, and that I was chosen to work at CADD to teach me about Autism. Six years ago, I knew very little about Autism or Developmental Disabilities and I took the job thinking it would be temporary until I could afford graduate school to pursure my love of music. I have learned so much by seeing and doing different things within the CADD organization that I would have never learned at another office. My love for music is still there, but I feel as though I needed to use this time to really figure out what I want to do with my life. In the future, I would love to develop some sort of program in Lancaster County that allows children with autism or developmental disabilities to experience music and instruments.
Putting my reasoning behind, I am still a mother with lots of unanswered questions. On a daily basis, I think of about 3 million questions I could ask myself or others regarding G’s life- past and present, many of which have no answer, nor will they.
Questions about the past:
- Is this my fault?
- Did I do something while pregnant that caused Greyson trauma in utero?
- Should I have eaten more veggies or fruit?
- Should I have questioned the cysts on his brain more than I did when they found them at our ultrasound?
- Was I too stressed when pregnant?
- What caused this?
- Should we have banked his cord blood?
- Should we have questioned the knot in his umbillicle cord more?
- Why didn’t I notice something sooner?
- Why did we have a second child?
Questions about the future:
- Will Greyson ever talk?
- Will I ever get a chance to dance with my son at his wedding?
- Will he go to college?
- Will he even graduate highschool?
- Where should we move so that we make sure G has the best autism support classroom in the county?
- Will Derek and I ever feel normal again?
- Will we ever sleep more than 4 hours in a night?
- Why can’t we get clear answers about what is wrong and what caused this?
- Will I ever feel as though my son truly loves me and doesn’t just see me as a “familiar face”?
Some of these questions, I admit are extremely harsh. I often tell myself that I am a terrible parent for thinking some of these thoughts, or questioning some of my choices in the past. I allow others comments to influence my feelings and thoughts, and I am often angry at myself for feeling this way. I find myself wishing and praying that one day we will all wake up and Greyson will be a happy, “normal” child, but every morning I arise to the same screeching cries coming from the nursery across the hall. I try to find the humour in his small quirks, but only on my own terms.
The two questions that I hate to admit that I ask myself are, will I ever feel for Greyson the way I feel for Roslynn? Will I ever stop blaming myself for his disabilities? We are almost a year into this diagnosis process and I still find myself asking these questions on a daily basis.
Perhaps the most critical and important question of them all-
Will I ever stop asking questions and just live for today?
There doesn’t have to be an answer to every question we ask, otherwise we would all know what to expect…..and that just makes for a boring life.