I am the father of two beautiful children: Eden, my daughter, is 11 years old. My son, Noah, is 8. When she was born, my daughter was diagnosed with static encephalopathy, benign external hydrocephalus, and global developmental delay. What this diagnosis means is she is profoundly mentally impaired, unable to speak, and has the cognitive capacity of an 18-month old child. It’s likely that she has some type of genetic syndrome which has yet to be identified.
As you can imagine, raising and caring for a child like Eden has been an experience unlike any we could anticipate while expecting the birth of our daughter. The past 11 years have been full of trials and tribulations, crises and emergencies, stresses beyond our imagining. Yet, now, in looking back on these experiences, I can say I’ve gained some perspective. More importantly, I and my family have survived. In the midst of most of these crises, we all had some serious doubts. There’s no question that these trials have taken their toll, not least of which is the abundance of gray hair I now sport. But ultimately we’ve survived, grown, and learned a lot along the way. We’ve also had a fair number of joyful and rewarding moments, too.
Raising a disabled child is a challenge no parent is prepared for. The manner in which you rise to the challenge, and cope, can ultimately make the difference between a miserable life and one filled with problems that you can overcome. The problems never cease. With a disabled child, the question is not if another crisis will occur, but when. My hope in starting this blog is to share some of my own experiences so that what I’ve lived through may help other fathers in similar situations. I don’t have any sage advice or secrets to overcoming the challenges. I struggle every day but count myself fortunate when the good days outnumber the bad. Lately, there have been more good days than bad, though that wasn’t always the case by any means. I'm very grateful for that.
The joys of being Eden’s dad have been more precious than any I could have expected. Watching her finally walk on her own when she was three, seeing her make meaningful eye contact with us and look at us with the intent to connect, teaching her to feed herself after years of spoon feeding, being able to make her laugh and hearing her giggle in delight. These are all things that most parents take for granted. Little things they know will come in time. With children like my daughter, we parents wonder if these little things will happen at all. So when they do happen they are a cause for great celebration. Every parent takes pride in their child’s achievements. The achievements of special children are all the more…well, special.
I sometimes view being the father of a disabled child like pledging a fraternity with a painful hazing process whose membership is a dubious honor at best – a club that no one really wants to join. Often times, I feel being a “special needs dad” can be lonely and isolating. It’s hard to relate to fathers of “typical” children, and certainly difficult to share experiences. “Oh, you’re daughter just said her first word? Mine doesn’t speak at all and probably never will.” When I meet another father of a disabled child, somehow we understand each other immediately. My daughter may be profoundly mentally disabled, while the other father’s child may have some other diagnosis, but we connect. I understand that path he walks and the “trouble he’s seen” like few others do. If this blog can help other fathers identify with my experiences, and maybe take some solace from them, then I think it will all be worth it. I hope, too, that writing this blog will help me “get out of myself” by sharing my burdens, and maybe “pay it forward”.
Unlike mothers, fathers of disabled kids seem to have fewer support resources. There are many more these days than there once were, so perhaps this blog can be one of those resources. I am also grateful for any feedback or comments you wish to post. Enjoy!