Throughout the month we’ll be sharing a “Sensational Sunday” story about a person living with MD who is enjoying life. Jonah Jacobs is a 16 year-old, energetic, teenage boy. He’s a gamer, quick-witted, strong-willed and has an infectiously positive attitude. His mom says he’s an incredible artist and brilliant in the way he just learns from life. But he’s not your typical teenager. He appreciates each day and lives it to the fullest, something unique for a teenager, especially one in a wheelchair.
Jonah was diagnosed with Duchennes Muscular Dystrophy (DMD) 13 years ago when he was only 3 years old. The diagnosis was shocking since his parents were not aware of anyone in their family ever having MD. While DMD is often a faster progressing form of MD, Jonah is a fighter and his progression has been relatively slow. He has been in and out of leg braces starting at 4 years-old, and getting a wheelchair he only used for extended use around 8 years-old. But in March 2016, he became reliant on full-time use of a power wheelchair.
His mom Pam and his Dad Wayne have 2 grown children, and have both continued to work up until just last month when his mom decided it was time to devote 100% of her time to Jonah. Jonah well outweighs his 5’4’ mother Pam making it physically challenging for her to help him move around from his wheelchair, bed, car etc. But she says that doesn’t even compare to the emotional challenges that come from seeing your child lose independence and the ability to walk. But just like Jonah, Pam doesn’t back down easily. She is a fighter too.
While this family is determined to not let MD stop them, they also admit they still battle with frustration and occasional bouts of depression. So what are some things they do? They make it a priority to get Jonah out of the house daily, to laugh and play, and to appreciate the things we all take for granted. Jonah goes to Do Jo (a form of exercise that helps work his muscles), the library, the park, the bookstore to meet people and make friends, and outside to play with his companion dog Mamma that runs circles around him and jumps up in his lap.
The Jacobs remind each other all the time: “Everyday we’re given a mountain – sometimes we have to go over it, sometimes under it, and sometimes we have to be crafty to get around it – but we will move the mountain today.”
Sounds like a good outlook for all of us!
Another thing they do is try to reflect on 3 good things each day. For instance, the day I spoke with Pam and Jonah, they said they had a wonderful day. It was a nice day outside and they ventured down the street to a CVS that was walking distance to pick up Jonah’s medicine. They enjoyed looking at cool things at the store, and just talking. Then they stopped by the library and checked out some books and movies. On the way home they had $2 to spend on a soda at the gas station. Finally, they passed by a neighbor who was working outside with some yard art they said was beautiful. In short, they spent $2, got out of the house, used all their senses to see, smell, taste, touch and take time to appreciate and enjoy the simple things. Let that inspire you and your family to enjoy the simple things each day.
When I asked Pam what she would share with other families with MD about getting out and doing things, she said 5 things:
- Just Do It. Let nothing hold you back.
- Hauling them around is worth it. It’s so important for them to get out of the house, even if it’s just out on the porch.
- Life is stinky. Just blow the stink off.
- Remember to play: being in a wheelchair doesn’t mean you can’t play.
- Overcome your fear: on the other side of complete fear is the best life you’ll ever have.
Jonah will tell you, “I simply don’t act like a have a disability. I do everything other teenagers do, it’s just that simple.” That’s a life worth living!