You can picture how it will go. You can set goals and take all the right steps to make your vision a reality. At the end of each day, you can reflect back on all you accomplished, the highs and lows you experienced, but you never know what tomorrow will bring.
I learned this the day my son Maclain was born.
Our first son, Chase, was just under two-years-old when I was 29 weeks along with identical twin boys.
My pregnancy was going great. I was preparing our home for the arrival of two more children and my husband Graham and I were mentally preparing ourselves for three boys under the age of two.
Then it all changed. On August 2, 2007, a few days after a perfect ultrasound, we found out one of our twins had passed away in utero. Our surviving son, Maclain, had to be delivered by an emergency C-section at 29 weeks and five days old. Suddenly our life was split in two. Life before and life after.
Maclain spent more than three months in the NICU after he was born. During that time, he sustained a brain injury as a result of untreated jaundice.
In his first year of life, Maclain was diagnosed with quadriplegic Cerebral Palsy and profound hearing loss. We were devastated and overwhelmed. So, overwhelmed.
As many parents would in our situation, we kept moving forward while trying to make sense of it all. There were so many thoughts to process and very little time to process them.
We didn’t choose the path as caregivers, but when it’s for you son, you skip the learning curve and go straight for the answers. Our journey began with acronyms like, OT, PT, SLP, CP, ENT, AVT and many more. We had appointments with every “ologist” you could imagine. Doctors’ visits, therapy, specialized equipment, wheelchairs, cochlear implants, seating systems and walkers became our focus as parents.
We had over 150 appointments in the first year. Sometimes up to three a day, four times a week. Every appointment came with paperwork and every therapy had a report highlighting what we had to do before the next appointment.
At the end of each day, all you could do was try to figure a way to manage everything. Often losing sleep and hope.
I am more than a decade into my role as mom and caregiver to two incredible boys. It hasn’t gotten easier, but we always find our way.
I have been an advocate in the special needs community for several years. When Kristy asked to connect with me to share her concept for Chronically Simple, I had seven binders to manage Maclain’s care.
As she shared her vision with me, it gave me hope that one day my binders would become obsolete.
Life will always remain unpredictable, but how you manage healthcare doesn’t have to.
Caregiver and Advocate