Faces of Care: Jamie

Looking back on the last 11 years of my caregiving journey, it was riddled with so much fear, loss, anxiety and blame. Being a caregiver to a child with a very rare diagnosis (90 in the world) left me broken, lost and full of the worst guilt a mom could have.  I had to grieve so many of the things I would never experience with him, and I didn’t know how to do that. The fact that he would never say “I love you”, that he could never wrap those arms around my neck, get married, or have children, destroyed me. There were so many things I tried to control, but I couldn’t. I was angry for all these losses and in turn blamed myself and lived with so much guilt for years. How was I supposed to navigate this life I did not understand? I had to make all these life changing decisions on surgeries and therapies, as well as making end of life plans for my child because I had no idea how long I would have him.

This was not in the cards. This was not supposed to happen. I was not equipped for this.

As I have navigated this life, I never knew how difficult it would be or that I would be a full-time caregiver for the rest of his life. My son requires around the clock care, as he is unable to walk, talk or feed himself. From the time he wakes up to the time he goes to bed, I must lift him, move him, feed him, bathe him, put his clothes on, change him and carry him to wherever he needs to go. School is the time where I have moments to myself, but even when he is at school, I never thought I would have to “fight” so hard for his basic needs. If life was not hard enough, and now I must fight for everything that anyone else could just ask for. To put trust in teachers, bus drivers and other kids to always treat him with kindness and compassion is a full-time job. All of this caught up to me over the years.

I was literally drowning and had no fight left, and I did not know who I was anymore. I was broken, isolated and lost.

I applied for a No Barriers retreat and was accepted to go. What did I have to lose? Little did I know that I would meet the most amazing women that are my forever friends. I learned that this life was not meant to be by ourselves, that we need community, and that we need to ask for help as we cannot do this life alone. I learned we cannot always fix things all the time, as much as we want to, we just can’t. But we can be there for those that need someone even if it is just to listen. I learned that self-care is so important, even if it’s getting out in nature and just breathing. That everyone has wounds, but they do not define you and who you are. That, to heal, forgiving myself and others was one of the most powerful things I could do.  Not for them but for me, and how freeing and lighter it is.

Lastly, the most important thing I took away from this retreat, was no matter your life’s journey, and all things that I have walked through, I am valuable, I am loved, and I am WORTHY!”

– Jamie

November 4, 2021 Support our Caregivers Program
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