I am going to take you on a story journey of being trapped in the fear of the unknown. It began 26 years ago when my twin boys were born. They were 13 weeks premature and weighed just over a pound each. They spent the first three and a half months of their life in the Neonatal Intensive Care Unit. It was there that I began my journey of understanding the needs of my boys and planning for their arrival home. Fear of the unknown of taking two medically fragile babies home.
How I faced the fear: I joined the Multiple Birth Association to educate myself and have a support group of people with shared lived experience.
At the age of 18 months, one of my sons was diagnosed with cerebral palsy. This began my journey to understand the special needs system for children with cerebral palsy so that I could give the best care possible to my son. Fear of the unknown for his future.
How I faced the fear: My family joined the Cerebral Palsy Association to have a support group of people with shared lived experiences.
At the age of 8 my other son was diagnosed with a Generalized Anxiety Disorder. This began my journey to understand the mental health system for youth as it pertained to my son’s needs. I needed to understand so that I could support my son to be as successful as possible. Fear of the unknown for his future.
How I faced the fear: I became and Education Assistant, and later finished my teaching degree, to open opportunities for learning and to help kids like my kids.
When I had been married for 16 years, my husband turned to drugs which ended our marriage. This began my journey to understand addiction as well as the court system. I needed to understand what had happened to my family so that I could best care for my boys as we all dealt with the trauma. Fear of the unknown of being a single mom with bills to pay and two special needs kids.
How I faced the fear: I completed a masters degree during this time and in 2018 became a certified Family Peer Support Worker. This gave me the opportunity to work with and give support to people with shared lived experiences.
Fast forward to November 2021 when my son with cerebral palsy fell of his horse and suffered a compound fracture of his sacrum. This led to a three week hospital stay with me by his side 24/7. Fear of the unknown of his this serious injury would affect his mobility and future. I was alone with my son as no visitors were allowed due to COVID protocols. Not once during the three weeks did anyone ask me how I was doing or if I needed anything. I sat watching my son in unimaginable pain not knowing what was coming next.
How I faced the fear: When we got out of the hospital, I dove into building my coaching business because I had experienced, yet again, the huge gap that exists for support for caregivers and I want to be a part of doing something about it.
I’m sharing my story journey of being trapped in the fear of the unknown because life is made up of highs and lows that we must learn to navigate to get through to the other side. It comes down to choice. Are you going to huddle in the corner or stand up and step up no matter how deep you are in the muck? In my case I held onto the quote by Maya Angelou, “I can be changed by what happens to me but I refuse to be reduced by it.” I learned and tested coping skills and found the ones that fit for me. I did the work to come out the other side. If you don’t like where you are at, then change it. You are not a tree.