I do not believe there is any experience in life as traumatic or life-altering as the loss of a child. The loss of a special needs child often brings a unique twist to this excruciating experience.
Those who have not been lucky enough (yes, I said lucky enough) to have a special needs child in their life may not understand the unique circumstances that are presented by such a situation. Most parents, despite themselves, when they learn they are to be parents start to dream about the life of their new offspring. Nobody envisions their baby as less than perfect, their child’s life as less than blessed. When parents learn their child has developmental issues, disorders that will equate to “special needs” all its life, they are thrown into a state of grieving for both their child and themselves. This is true for every parent whenever they learn this news. It may be at birth or even in the womb, or later as development lags or an injury or disease creates damage to the brain or central nervous system. Most overcome this and begin to do the work needed to give their child the best life possible.
It is indeed hard work to care for a special needs child. It can consume every minute of every day and result in a life given only to the needs of that child. Every parent faced with this does what they can as they are capable physically and emotionally. That child and its care become your life, in many cases quite literally. But those parents are rewarded. It is incredible to see the world through the eyes of one of these children. My daughter was that child. Nobody or anything I have ever experienced in life taught me more than my daughter Erin did. No matter how hard my day was, coming home to Erin and her smile made everything right and the world brighter. I was able to marvel at small things that because of her I realized were major experiences and great achievements that few others even noticed. The world with Erin in it was brighter, happier, filled with hope and offered more opportunity than we probably deserved.
That is the beauty of a special needs child. Others may see them as needing and taking but those of us fortunate enough to live in their presence understand they are mostly giving. When these special people give they also give with all they have and give freely with no caveats or expectations. They are the personification of pure joy.
When that life is taken from us it leaves a huge hole, a chasm of emptiness. It changes our lives as parents immediately and immeasurably.
Everything, out of necessity, revolved around them. That hard work we came to almost cherish, the mindset of worry and care that was our constant companion are gone in an instant. Selfishly, I also immediately missed the brightening Erin brought my life. My ability to mirror her in smiling at life and appreciating even the smallest wonder was gone. It was at that moment that my wife and I realized how much we needed her. We were “special needs” parents. For 25 years we had lived each day with this as our blueprint for life. In the blink of an eye, it was gone with Erin.
Other people, meaning well, would tell us it was a blessing that we no longer had to deal with all that. They could not have been more wrong. It is eleven years since Erin’s death and I still find myself seeking to find a new meaning, a defining vision to replace my life as Erin’s parent and caregiver. There are other wonderful things in our lives but none rise to the level of our time with Erin and I now believe they never will.
Yet, thanks to her, I go on and see life for what it is. I remember how she marveled at small things that others might miss, I experience something that would have made her laugh and I laugh. I look into the eyes of other special needs people when I come upon them and in their eyes, I see her reflected back on me. I tell their parents they are lucky. Some understand and smile, others look puzzled until I explain how much I miss my special girl. They are lucky and I hope they cherish every minute of their time with that special child. I now look back and I cherish every memory of every minute of my time with Erin. I am so thankful today for that time. My loss is real and deep but I still count myself lucky to have been a “special” dad to a truly “special” girl.
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