A message from Josef’s big brother, Ulrich:
There were two days that changed my life the most. One of them was when my brother, Josef, was born. The other was about a year and a half later, at the dinner table.
I was about six at the time, the age that my brother is now. I certainly was not fluent in medical jargon. My parents had recently been to the doctor with Josef. The first two sentences in our conversation were “We have to talk to you,” and “Josef has cerebral palsy.”
To a young child with minor anxiety, “cerebral palsy” sounded like some kind of deadly disease and Josef would have only a few more months to live. Luckily, this wasn’t the case.
It turned out that “cerebral palsy” was caused by damage to the brain, which happened as a result of periventricular leukomalacia (I’ve learned some big words in my time) which Josef had shortly after he was born. The part of the brain which it affected was the cerebellum, which controls muscle coordination. In layman’s terms, Josef probably would never be able to walk by himself. Not when typical children start toddling. Not when typical children start driving. He would also face challenges with fine motor skills. Feeding himself, dressing himself, writing, would all be difficult for him.
Now Josef is six years old. He has the vocabulary of people twice his age. He is incredibly kind and loves to laugh. He is smart and determined. His writing is improving and he can feed himself for the most part. He works hard at physical and occupational therapy to continue to gain more strength, endurance and skills. While fine motor skills are still frustrating and exhausting at times, Josef will keep trying. He does a lot one handed but is making progress with his weaker hand. He has also learned to knee walk and use a walker to get around our two-story house in Mars, PA.
Please note the words “two-story”.
Because, that is our reality, we carry a 40-pound kid up and down the stairs all the time. And even though Josef can knee-walk and cruise around in his walker, neither are very helpful when it comes to stairs, the nemesis of nearly every child with CP. Plus, with very few accessible public buildings and accommodations, it would be nice to live somewhere that doesn’t require so much physical strain on Josef or us.
My mom and dad plan to build a one-story house in Allegheny County. Not only will a one-story house be more accessible for Josef, who is quickly growing and ready for more independence, it will lessen the strain on our backs, as Josef is by no means ceasing to grow in weight, either.
The house will be equipped with various bars and handles so that Josef can navigate around the room with more ease, and extra-wide thresholds so he can go around the house in his walker. A special room will be designated for his physical and occupational therapy needs.
In addition to living in a better home, moving to Allegheny County will set us into the Pine Richland school district — which has an awesome special needs program.
And if all this isn’t enough motivation, the house will be bigger, mostly so Josef and I can have epic laser-tag fights all over the place. What more do you want to know?
Thank you for reading my page and please thoroughly consider making a donation. Even the smallest contributions will be very much appreciated.
— Ulrich Johnsen
A note from Josef’s parents, Kris and Lisa
We really appreciate your taking time to read about our family. It has been a challenging few years as we learn and grow with Josef so we can better provide for his unique and changing needs. The time is definitely here for us to move to a one level house. The toll of carrying Josef is starting to show in our backs and knees. As Josef prepares to start school, he needs to be in a district that will respect him, as well as teach and nurture him. We looked for a long time for single story houses that would meet our needs to no avail. Building is costly, but in the end, more of Josef’s needs will be met, as well as ours. Thank you for any way that you can help. We are immensely grateful for any and all donations. Your support and prayers also mean the world to us.