For the longest time, I was Kai’s Mom. And that’s it. We had a long, hard journey, with Kai’s diagnoses coming at the same time as my mother’s Alzheimer’s disease. And then, we were unexpectedly homeless. And then, my husband got sick. But I digress.
I believe that life is cyclical. There are upswings and downswings. For the longest time, I was in a downswing as one thing after another kept hitting me like ocean waves, knocking me down over and over. Everything was narrowed down to survival mode – I did what I could do with the energy and mental availability that I had to do it with. And that was all. Because Kai is my number one priority, coming before EVERYONE and ANYTHING, what I mostly did was be his Mom. His caregiver. Whatever was left went to the rest of my family. But time moves on, eventually, and things change if you wait them out long enough. Life offered an upswing and recovery for me began.
It took FIVE YEARS for me to begin to feel better. Five long, hard years. I am nowhere near the person I was before. There are pieces of the old me still there but the new me far outweighs them. I have recently met myself for the first time. I am surprised.
I really, really like myself.
That feels funny to say. But when I think back to all the different incarnations of who I have been in the past, I like this me best. So far. I am open to even better versions. In fact, meeting me is becoming an adventure. I’m digging it.
There is a thing called post-traumatic growth. You can read more about it in this blog post:
I have the guilt that comes along with this. I have benefited from my mother’s harsh experience, from my son’s diagnoses, from my hardships. It has helped me develop into a person I never even imagined.
This is OK.
I needed someone to tell me that this was OK because I felt badly about it. But no one did. And I think that this is part of the reason I was struggling so hard for so long. So, eventually, I figured out that I can tell myself. It’s OK. And it is.
It is OK to still be you when you are a special needs caregiver. Whether it’s the old you or a brand new version of yourself – either is OK. For a while, you may not want to focus on you. All of you will be all about all of your child. But, eventually, when you come back to yourself (and eventually you will), you don’t need to feel badly or guilty about also wanting to be you.
You are supposed to be you.
Your journey is special and different than most. You are having an experience with your child with special needs that most know nothing about and wouldn’t ever think to dream about because on paper it looks awful. What they don’t know is the incredible, joyful, amazing experience you have been given. They don’t understand. That’s OK, too. They don’t have to.
If I could go back in time, not that long ago, I would comfort myself, give myself a hug and let myself know that it’s OK. But I can’t. So, I’m hoping that I can do it for you.
I’m giving you a hug. And I’m letting you know, it’s OK to also be you when you are a caregiver. Really. I promise.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!