When you don’t feel good that’s one thing, when you don’t feel good as a parent that’s a whole other feeling, but when you keep getting worse and then you finally get word that you have an incurable disease your heart sinks. I think my first question was is it hereditary. My immediate thoughts went to my kids, not my health.
I cried, I worried, I started preparing, and we had those tough conversations. What happens when….
I always came back to the same thing, no matter what happens to me, I have to be the role model for my kids and show them I lived life; I did everything I could to fight this disease
I might live with a disease that will eventually change the outcome of how my body works, how I can function and ultimately will most likely be the cause of my death…that’s a lot believe me I know! But the one thing that has always been in my forefront is my family. I might be sick, but I will leave my girls knowing that I gave everything I had to live life fully.Â
Although I have Scleroderma and other autoimmune diseases, I really try my best not to let it define me. Yes, I know it’s always there, I can feel the changes in my body. I know and can tell if it’s going to be a good day or a bad day, but I believe I’ve been able to find a healthy balance. Reality is, I have had to accept this and learn how to juggle everything and let some things go, which isn’t always easy.
As much as we think we are protecting our children, hiding it from them doesn’t work, they can see and can tell more than we give them credit for. I’m guilty of that myself, I try not to complain and push myself to be the mom they need, but they know. Just the other day my daughter was at the top of the stairs and was watching me walk up and when I got to the top she said, you’re in a lot of pain today I can see it on your face as you were trying to come upstairs. I think we are better to be honest, keep things to their level of understanding and hopefully by us keeping it real we are showing them ways to become resilient, ways to cope with stress, and pain and helping them learn healthy habits for their future.
As a parent I think it’s important to find the time in your day just for you, remember that saying ‘self care is not selfish.’ Do whatever that looks like for you! My time is the morning, I get up while the house sleeps, I have coffee, stretch, read, meditate, clear that brain fog, and do whatever I want to look after me.
Truth is, I have had to accept this new reality and find the balance that doesn’t cause me a lot of inflammation and pain or put me into a flare. I’ve come to realize that it’s okay for me to say good night to my family when I just can’t stay awake anymore even if that’s 8pm. For those with younger children your kids don’t have to be in every sport or activity so that you are left stretched to the limit and running 24/7. It’s going to be more important that they have the memories of family game or movie nights and dinners together laughing and creating moments they will cherish.
My family sighs as I’m always the one saying, ‘I need a picture’, or coming up with crazy ideas of things to do, but what they don’t realize is those are the moments and memories I hope they will look back at and remember. It’s important to be silly, be in the pictures and live life to the fullest as no one knows what tomorrow will bring.
Written by: Kerry Hills
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