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What does it mean to be a caregiver?

A few months ago I was asked to write an article for the Muscular Dystrophy Association’s  November issue because it was National Caregiver’s Month. I thought about it and let the words flow. The article was then published into MDA’s newsletter and the article is below:

 

What does it mean to be a caregiver?

Happy National Caregivers Month!

This role that we’ve been thrust in isn’t an easy one. I am a mom to 2 boys, Jackson (9) & Logan (6). Jackson was diagnosed at 2 ½ 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 5 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 that can be done…fundraising, keeping up to date on research, doctor appointments, stretching, ordering medicine… the list is endless.

I want to focus on every primary caregiver for the muscular dystrophy patient.

I see you.

You have one of the hardest jobs in the entire world.

It is exhausting, relentless, and rewarding. It’s 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. Some days this diagnosis gets the best of me; it makes me feel 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, and when you do not do 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 allows you to be recharged; whether that’s reading, going in nature, getting a pedicure, exercising, dancing, walking around Target aimlessly, or meditating. 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.

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 rock star. 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. 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!

-Crystal Gerhardt, Mom of Jackson + Logan

dmd caretaker


Cure Duchenne

JACKSON’S STORY

 

“By donating to the wonderful organization that is CureDuchenne you are not only helping Jackson, but an incredible amount of other little boys fighting this battle.” – Crystal, mother of Jackson.

Jackson is a 9-year-old lover of animals with big dreams and plans for the future—his hope is to become a zookeeper. His favorite animals include groundhogs and guinea pigs, and the highlight of a recent family trip to an aquarium was seeing the otters. He loves to play Super Mario, cuddle with his Corgi puppy, Rexy, and travel. “My dream is to travel to New Zealand.”

But Jackson also has Duchenne muscular dystrophy. “Having Duchenne can be rough some days because it tires my muscles out,” says Jackson. “If I could have a day without Duchenne I would run around…I would love to be so tall that I could ride all the big rollercoasters.” When asked who his hero is, Jackson says, “My hero is my Mom. She takes care of me and she loves me.”

The imminent result of Duchenne weighs heavily on Jackson’s mom, Crystal. She sees in her son an incredibly bright little boy who hasn’t fully felt the wrath of Duchenne upon him. Although still strong and able to walk, Crystal sees how Jackson tires and fatigues quickly each day. “I think every single day of research and a way to halt this disease in its tracks. I wish every single day of my life that I could take it from him, that there is something that I could do, but this disease doesn’t offer that possibility. I want to tell him that he will be able to go to prom, and pick a college and have his own apartment. I wish every single day of my life that I could take Duchenne from him. I don’t ever want to envision a future without him in it.”

DONATE HERE:

Cure Duchenne- Jackson

Screenshot 2017-11-14 10.42.23


Superhero Jackson

 

 

Duchenne Muscular Dystrophy Big battles

 

“God doesn’t give special kids to special parents.

He takes ordinary, imperfect people, and gifts them with his greatest treasures.

And therein, he creates special parents.”

Jackson- DMD

This boy. 

My dear, sweet Jackson.

Who at (almost) 4 years old was diagnosed with Duchenne Muscular Dystrophy.

Who is now 8 years old and knows a little bit about the disease.

Who when he gets tired and fatigued or when he can’t keep up with his peers, he says (holding his head low)  “That’s the Duchenne”.

I hate that I have to watch my little boy go through this terrible disease.

I hate that I feel helpless to overcoming it.

I hate that sometimes he cries about wearing his night braces.

And as much as I explain the reasons to him, I get it, it’s uncomfortable. It’s painful. I wouldn’t want to sleep with them on all night either.

Jackson- DMD

and we talk about all sorts of other diseases that people are afflicted with,

and I try to let him know that everyone is different and that we all struggle with various things.

That we should always be kind, because we have no idea what other people are going through.

And then I wonder when he complains of pain.

I want to know what that feels like,

I want to take his pain away,

I want to put myself in his shoes and experience the disease,

because no little boy should face the future that he’s going to have to.

Jackson- DMD

But then I look at his adorable face and his piercing brown eyes and I think to myself, Yes….it’s true.

We all have various obstacles to face. And while this is a major one that will one day take his life….

that’s not how I’m going to view it.

I am going to make the most of each day.

I am going to create the best life possible for him.

I want him to know he is more than his disability.

That he is smart, capable, and so loved.

So tonight as I read him a story about the Exotic Birds of the World I will look at him with pure love and think to myself

Thank You. 

Thank you for teaching me so much about life that I never would have even thought about.

For not only teaching me about love, patience, and determination. But for helping me become a better human being.

One who fights for what is right and doesn’t back down, who creates awareness & gets involved in the community.

Who now loves reading animal encyclopedias and studying various dinosaur era’s only to mispronounce the name of the dinosaur and have you correct me.

For teaching me to celebrate the small things in life. Specifically today, when we went to the aquarium and you began beaming when you saw the “Deep Sea Fish Area”, and you grabbed my hand and said, “Don’t be scared mom, it’s gonna be dark in here. But that’s the only way to see the flashlight fish.”

Buddy, I know that I was meant to be your mother and I celebrate every aspect of who you are.

It is an honor to raise you and watch you grow into the little man that you are becoming.

You make me smile and laugh uncontrollably each and every day.

I love you,

Love, Mom.

Jackson- DMD

 

 

Jackson- DMD

Jackson- DMD

Jackson- DMD

Jackson- DMD

“May you always run free”.

-Mom

 

 

 


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