Mikey's Fight for Independence!!


Michael was born October 26th 2011. Shortly after Mikey's first birthday he was diagnosed with Cerebral Palsy & a brain disorder called Schizencephaly. CP is a neurological disorder which affects body movement an muscle coordination. Schizencephaly is a rare birth defect that affects the brain. It causes developmental delays, including delays in speech and language skills.
Michael is classified as GMFCS level IV and Triplegic. Which means it is unlikely he will ever walk without assistance or specialized equipment.

As Mikey gets older, it is harder and harder for him to move around. Mikey is 5yrs old now and the lack of personal independence is becoming a problem. His only mode of self transportation is simply scooting from room to room. We are currently in the process of getting Mikey fitted for his own wheelchair. This type of chair comes with a great deal of new issues. With a chair of this size, a specialized van is needed for transportation. The ultimate issue is providing a home big enough for Mikey to move around independently. As you can imagine, all of these things cost a great deal of money. His chair alone will cost 12-15k alone. Handicap vans usually start at 50-60k.

The day my son was born was the greatest day of my life. Followed by feelings of fear and complete helplessness.  A pocket of fluid was found on his brain at 20 weeks which classified my wife as "High Risk". In the beginning we were being told about some birth defects with big scary names that no parent should ever google. The outlook wasn't good and one doctor told us he would likely die at birth or be a completely vegatable.
When the big day finally came, it was anything but normal. We had roughly 20 nurses in our room in order to rush Mikey to the NICU for immediate testing and observation. The plan was for me to stay with Mikey no matter what. When Mikey was born, he wasn't breathing. The cord was wrapped around his neck and he had a hole in his lung which was taking in fluid.
Mikey and I spent 2 hours in the NICU together while nurses ran tubes down his throat and attempted to suck out any fluid in his lungs. He couldn't breathe and I was just trying to hold myself together. Eventually his lungs were cleared out and they finally managed to set an IV in my new born son. He finally settled down and fell asleep. This was just the beginning..
After the first couple years we began to cope with the diagnosis. When a child is born this way, it all just becomes "normal". You take the hand you're dealt and try to make the best of it. As many of you know Mikey has a smile that could put the sun out of business! Mikey just being his own goofy self makes things a lot easier for us as parents. He brightens the darkest of days for all of us.
As Mikey gets older, everything gets harder. My main goal in life is to make things easier for my son. Independence is something we all take for granted. Unfortunately my son will likely need specialized equipment through out his life to do things regular people do everyday.
It's not easy for me to ask for help. I can be a very proud man. My son has taught me many things in life without even speaking. First thing that comes to mind is obviously unconditional love. The second.. humility. Always be grateful for what you have and don't be to proud to ask for help.
Thank you for looking at Mikey's page!