My daughter has Cerebral Palsy. I have been her advocate for 14 years now. Those years have been full of ups and downs. I have been a loud and forceful advocate for her in all the different areas of her life. I have made sure that she is always included and always able to participate.
But after 14 long, busy years, I am depleted. As a caregiver I almost feel like I can’t talk about how I feel about this. As if it is a reflection on my commitment and love for my daughter, but I think it’s important to acknowledge. It’s important to say out loud so others might not feel so alone.
Things are also changing for my girl. She is in her mid teens now and life around her has shifted. Being in a limited body that is now bigger is a struggle that hits hard. It’s not as easy to tote her around anymore. She is no longer the little cute kid, she is grown and beautiful, but her friends have moved on without her. Playdates and after school activities are now done without her.
It’s not intentional, but it still hurts to see her lonely. She is a whole human with human emotions, and often it’s just she and I on the weekends. While she loves me and we do things together, it’s still boring for a 14 year old to have to hang with her mom all the time.
For the first time in my life I don’t feel much joy, I don’t look forward to anything. I feel lost and that scares me. I feel a lack of energy, I feel burnt out. I wake up and do the needful, but then need to sit down and rest, my back hurts, my head hurts, my heart hurts. I have to purposefully make myself do things I loved to do before. The monotony of my life stretches before me, unending and at times hopeless.
I’ll be honest, It really scares me to feel this way.
So I reached out to a counselor and she reminded me to do things that I love, not things that I think I need to do. Even if it feels weird at first, or if it seems like there is no point to do them because they don’t benefit anyone but myself.
Therein lies one of my main problems, I struggle with my worth in the world. My world is centered around one being , one person, whom I am privileged to care for. Over time, I have given myself away without replenishing myself. Could I have done better and not ended up where I am now? Yes , of course, but I was also doing my best and this is the result. I am not lamenting what i should have done, that is just not helpful. Yet, I need to do something now. I need to find my place in the world, in my world, in my daughter’s world.
I doubt there are many mothers who don’t struggle with this at some point in life. It just seems like a growing pain we all have to go through. It’s unpleasant though.
I don’t know if people talk about the loneliness, the despair and the worry that our children go through. That we share with them. How we can be at a social activity and her body is losing control due to the heat or being in her chair too long and how she really, really, doesn’t want to leave, but we have to. The frustrated tears that stream down her face, because she just wants to be with everyone else. It’s rough on a mom’s heart to witness.
I don’t think there is a perfect way to deal with any of this, and most days I find the best way possible to accommodate her social and emotional needs to the best of my abilities. Some days, we just survive and honestly those days are hard for me to face myself. I know it’s not enough, yet I am human, too. I am limited, too in some ways. So, I try to forgive myself and move forward. I don’t want to be bitter about the world, about what she lacks, neither do I turn a blind eye to it. I see what she is going through, what I am, what her family is, then I continue on, just like every other mother out there. We keep going so that our children can, as well.
wawoo 