This role we’ve been thrust into, isn’t an easy one.
Before I get started I want to introduce myself. My name is Crystal Gerhardt. I am a single mom to two boys, Jackson & Logan (11 & 8). My oldest son Jackson was diagnosed at 2 ½ years old with mild autism and then a week before he turned 4, he was diagnosed with Duchenne muscular dystrophy. I was immediately lunged into a world I knew nothing about.
It’s been 7 years since that dreaded day and I have learned so much about the disease, doctors, specialists, and research. From the caregiver side of it all I know that most days my to do list is never ending and I usually don’t even get half of it done. I feel like there is always more I can do…fundraising, keeping up to date on research, doctor appointments, stretching, ordering medicine, you name it…the list is endless. So what I want to focus on is the primary caregiver for a child living with DMD and how to make sure you are taking care of yourself.
First of all, I see you. You have one of the hardest jobs in the entire world. It is exhausting, relentless, and consuming; but oh so rewarding. It’s parenting, but parenting with a completely different experience from many of your friends that have children. It’s fraught with its own sets of concerns and worries… Should I place my child on steroids? What center is the best for care? What will the future look like for my child? All of those concerns you have are valid. This is a scary new world to have to be immersed in.
I want to focus on one important topic that has really helped me out. Some days this diagnosis gets the best of me; it makes me feel lost, sad and broken. I look at my son and I want to take the disease from him. But more often than not, I have days where my perspective has changed and I know his days are limited, and I want to provide the best possible life I can for him. I want him to always feel loved, cherished, and adored. That he matters and that just because he is different, he is no less than. To do that though, to be the caregiver that he needs, I also need to take care of myself.
You Cannot Give From an Empty Cup
When you avoid doing things that refill your cup, you will soon run it down to empty and no one can give from an empty cup. Find the thing that recharges you; whether that’s reading, spending time outdoors, getting a pedicure, exercising, dancing, meditating, or walking around Target aimlessly. Sometimes for me it’s getting in the car and going for a drive with the windows down and the radio up singing at the top of my lungs.
Even if you only have 5 minutes to do it, do something. Start small and go from there, because sometimes all you have is 5 minutes. Do what you can with what you have. But no matter what, do something that sets your soul on fire. That makes you feel alive and brings you back to the notion that you are a rockstar.
In order for you to be the best caregiver, it is essential to do things for yourself to avoid caregiver burnout. The last thing you want is to live in a space of being overwhelmed, anxiety ridden, unhappy and exhausted. Because believe me or not, what you do day to day is very very hard and most people won’t even have the slightest clue about those things you do each day. Take time out from your busy schedule, find a way to recharge yourself, and remember that you are doing a great job!