I am sure many of you that stop by hear have read this recently as it is going around our "groups". When I find things that hit close to home, I like to post them on here so years from now I can look back. I also look at them when I have having one of those hard days, weeks, months.... so take a minute to check it out.
By Patrick Kane
While I may not know many of you personally, I know your daily routines; your daily dreams, your daily fears. In a crowd of hundreds, I can spot you in an instant; your lines and wrinkles caused from years of worry and stress crammed into weeks and months of your new life you didn’t ask for and never saw coming. You have dealt with this stress and become a stronger, better father because of it. You have learned the true definition of the words “advocate”, “father” and “coach”. Yes, you are Fathers of special needs children, and you are my Brothers.
Each of us had the same hopes, dreams and plans for our children. And, each of us has had to deal with the instantaneous reality that our child will never know life in the same way we dreamt for them. We have had to accept the realization that we may never see them walk, hear their voice or share their thoughts. Some of us know that we will never see our children go to college, walk down the aisle or become adults. And, we’ve done it all while trying to find the small things that give us hope and laughter and get us through one more day.
We’ve changed our work schedules, taken new positions, asked for demotions or taken new jobs, all so we can be there for our child that can’t go to normal daycare or have a neighborhood babysitter. We’ve dealt with the disapproving looks and judgment of other “men” who put work before family and don’t understand the decisions we make, and don’t care to.
We’ve gone days on just hours of sleep because our child had fevers, seizures, feeding tube disorders, infections or reactions to a “new” medicine. We’ve had to administer the shots ourselves, hold them down for leg brace fittings and comfort their screams of confusion and pain. We’ve bargained with God to give us the pain and illness so our child wouldn’t have to feel it. We’ve watched them go through countless procedures from EEG’s to Chemotherapy. We’ve taken them across the country to see the specialist that we believed would have “the” answer.
We carry them when there are no handicapped entrances. We hold them during movies, meals and church. We carry them to bed each night wondering how we ever managed the day. We kill ourselves at the gym hoping that we will stay ahead of father time so we will always be able to carry them when needed . . . wondering who will do it when we are no longer able.
We can meet with doctors, school boards and politicians and equally understand the medical terms, IEP schedules and new legislation that will better enable our children. We are adaptive chameleons who can fight battles on numerous fronts at the same time, and win each battle because for these children, failure is not an option.
We’re no longer little league coaches or ballet dads, we have become a coach on a new front: The art of coaching them how to lift their head, how to swallow, how to roll over, and how to crawl. We have become the physical therapist at home, creating boot camps in our living rooms, basements and back yards. We push our children beyond what others expect of them. We still push for them to play. We still push for them to be productive and self-sufficient. We still push for them to touch sand, grass or water without screaming. We do these things because we know the fabric from which they are cut . . . we’ve learned they got it from us.
We’ve learned how to build adaptive toys that are overpriced and under produced. We’ve scoured the internet for plans on how to build “tiny rooms” for the visually impaired. We’ve learned how to build shade canopies to fit their adaptive chairs out of John Deere parts so we can take them to the park with the other kids. We’ve learned that Mylar balloons are not just toys to be given on birthdays and that emergency blankets are not just for emergencies, but adaptive equipment that can be used for sensory therapy, vision therapy and fine motor skills.
We’ve learned to deal with the curious looks from other parents, or the child who asks innocently what is wrong with our child. We’ve learned to confront those who like to pretend our child is not present or that we do not exist. We’ve learned to stand up and speak for our children when they are discriminated against. And, yes, we’ve learned that to us sometimes it is better to pretend that those people do not exist.
Some of us make the lone trip to the cemetery to visit the child who could no longer carry on the fight. While there, we talk with them and tell them about our days. We continue asking in our prayers that they can now run and play, chasing butterflies, fishing with grandparents and catching balls. And, we do it all without shedding a tear…at least not that others ever see.
We know that by placing a hand on our brother’s shoulder, we are comforting him more than words could ever do. We don’t need to discuss our problems to understand what each of us feels, but we are always here for each other should the time arise.
We aren’t just fathers; we are fathers of children with special needs. We are better people for having these special kids in our lives. We are better fathers because of kids like these. I, for one, am proud to have you as my brothers, and proud to have a special needs child.
(No worries, I got permission before I published this in its entirety, so I am not breaking any rules-----well at least any that I know of!)