- Posted June 17, 2014 by
This iReport is part of an assignment:
Raising a special needs child
stronger because of our "special needs"
Isaac spent 11 out of his first 13 months in the ICU, he was kept paralyzed and sedated for three of these months. Ultimately, he ended up with not only a feeding tube, but a tracheostomy.
Isaac's 14th surgery gave him an esophagus, he was 11 months old. At this point we had spent the better part of his first year in Minnesota, we actually live in Virginia.
Since we brought Isaac home at 13 months he has undergone 7 more major operations.
Once home, we realized the extent to which Isaac's life was changed by just that first year in the hospital. He had significant delays - in all areas. He had no ability to vocalize, and he couldn't sit on his own at 13 months.
The therapy routine began at this point. We have spent the past five years researching the best for our Isaac - the best therapists, the best hospitals, the best surgeons, the best recreational programs, the best home medical supply companies, the best nurses.....
Isaac's dad and I spend an inordinate amount of time on the phone with insurance companies, supply companies, doctor's offices, etc. Lunch hours are spent sorting out the litany of issues that evolve daily.
We have travelled between our home and Minnesota and most recently our home and Cincinnati to afford him the best opportunities. This requires a lot of work - as he doesn't travel light. Getting through security and loaded on a plane is a feat in and of itself. Medications have to be packed, medical supplies have to be packed, travel arrangements have to be made. Our family has never taken a vacation, with the exception of Isaac's Make A Wish trip.
Life with Isaac is a balancing act, we balance his needs along with the needs of our other children. We balance our time off from work, we balance travel time to therapy and doctor's appointments.
It is hard to balance it all, we worry the most about our other children. Isaac NEEDS so much of our time and energy, how do we make sure our other two children do not feel left out? How do we make sure they are not jealous of all that Isaac entails?
In all of this balancing we have found amazing resources, we have made friends we never expected. Isaac has played T ball with a special needs league and is now exploring horseback riding therapy and excelling.
Life with Isaac has been a gift to our family and friends. He has taught us how to fight, he has taught us how to appreciate the small things, and he has taught us to love and appreciate something every single day. Isaac is resilient, he is loving and he is strong. He inspires us to fight, he inspires us to love and he inspires us to have fun.
Raising a child with special needs is not easy, and it is not what we expected. Even if we had known what to expect this wouldn't have been easy. Raising a special needs child requires you to roll with the punches, and be flexible. We never know when Isaac will end up in the hospital, or add a therapy to his weekly schedule, or take us out of the state. There are too many unexpected's to try to prepare.
Life with Isaac is a journey - it is a beautiful, loving, frustrating, at times emotional journey. It is a journey worth taking.
- My life