My Heart Will Forever Go On
Coping with the daily challenges of raising a child with special needs and how to survive the loss when they are called away
by
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Life is not easy for parents of children with disabilities. We all have our own unique battles to fight, but we have many things in common: We never take our children for granted. We sit through doctor appointments and await news that could be good or bad. A lot of our children have feeding tubes, and we want so much just to be able to see them eat their birthday cake, and they cannot. Some of us have children who cannot communicate, and we hurt for them. Some of our children are blind, and we tell them what the world looks like. Some are on ventilators to help them breathe, and some are on chemo or taking bone marrow. Whatever the case, we never stop fighting for our children, hoping and praying that the next treatment will be the answer.
Some of us have small homes filled with adaptive equipment that we have had to fight to get. All of us have sat endless hours at a hospital while our children were suffering. We have fought insurance companies to pay for things our children need, and we have fought schools to get them the extra assistance that they should have gotten without all the hassles. We all took our babies home from the hospital without a lot of instructions, and we were scared to death, but we learned what we needed to learn, and we survived. Some of us have received bad news from doctors about a new diagnosis and left the office overwhelmed only to come home and do research on it and be more afraid once we discover the facts the doctors never gave to us. We all have had to accept that some of the dreams we had for our children will never come true.
We have wanted our children to be able to hold their own fishing poles, but we get great satisfaction from holding out the fish for them to touch and seeing the expression on their faces. Some of our children never get to ride the rides at the amusement park due to their conditions, so we swing them on our own swings and take great joy in simply hearing them laugh when the dogs are barking down the street. In the fall, some of them never get to carve their own pumpkins so we do it for them and with great care. We make costumes for them to accommodate all their equipment, cutting holes where needed if they have g-buttons.
Some of us have sat and wondered whether our children would ever be able to walk or run, march in the band, play basketball or be gymnasts, plant their own flowers or have children of their own. We have wondered whether they would learn to ride a bike without training wheels and how long this would take.
In our minds our children are angelic. We love to see their first morning smiles and to hear them laugh. Through all the hardships, we never see them as anything else but a blessing.
To all the parents who have a child with a handicap or disability of any kind for whatever reason, I salute you for being so devoted and so caring. Only parents such as ourselves could respond with such affection in the face of the struggles we encounter along the way.
One day, when I was coming home from the store, I thought about God and how he had only one son and I have three, one of course who is now in heaven. I thought about how God lost his only son, all the things that Jesus had to go through, and how God had to sit and watch him suffer, just like we have to watch our little ones endure so much pain. This reassures me that we will make it through.
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About the Book
In many ways, Pamela Kay Klopfenstein’s story My Heart Will Forever Go On reveals that she is like any other mother: loving, accepting, and exceptionally giving. It also reveals, however, that the seemingly impossible is possible: that even after we are faced with the worst tragedy of our imaginations, we can begin to live again. "As a parent who has lost a child," writes Klopfenstein, "I am pretty sure about one thing: When we fully become used to the idea that our children are never coming back to us, when we realize that we have no control over life—when it ends or begins—, we wake up living in a different world. We are not the same people we used to be." Informed with a wisdom that only comes from surviving the loss of one’s own child, Klopfenstein’s story offers practical advice about raising children with special needs in between lines of sincere empathy and enduring love. Readers will find truth in her poetry and poetry in her prose. After bringing a sting to her readers’ eyes, her story is sure to sit on a shelf in their hearts like a friend who is always there.
About the Author
Pamela Kay Klopfenstein was born and raised in Ohio, where she continues to reside with her husband, Kurt, and two sons, Jeremy and Matthew. In addition to writing poetry, she enjoys fishing, gardening, reading, and traveling. My Heart Will Forever Go On is her first book-length work. Her love for her son Jonathan was what first inspired her to begin writing four years ago. Since then, some of her poetry has been published in an anthology. A nurse for 14 years, Pamela has taken in several foster children with medical issues. Her hope is that Jonathan’s story will help others cope with the challenges of raising children with special needs and find their own rewards in doing so.