Having a Child with Special Needs

By Silvia Lawniczak

Having a child with Health issues means constantly facing some aspect of pain. The two most basic forms are the emotional pain of the parents, and the emotional plus physical pain of the child.

When my son was diagnosed with a particular form of Epidermolysis Bullosa (EB) about a month after his birth, I very painfully realized that modern medicine could do nothing for him. There was no cure, no treatment, no drug that improved his condition, not even an injection or medication to ease the symptoms. Absolutely nothing, zero, zilch. They did, however, give us advice about how to care for the wounds and suggested Tylenol to ease the pain, which was not a particularly good idea in the end; his body became immune when he really needed the relief. Knowing Doctors can do very little to help your child is possibly one of the most painful and frustrating aspects of parenting a child with a rare medical condition.

Because there is no golden medication to remove all of Nicky’s treacherous ailments, I have made some painful decisions that are the best and worst of two evil scenarios. For starters, I questioned whether or not I should put Nicky through a painful surgery in which a Gastrostomy tube (g-tube) is inserted into his stomach. If the surgery proved a success, Nicky would be able to eat more and finally start growing again. Improved health would mean better life, but it was still no easy decision. Nicky would be subjected to physical pain. I shed so many tears trying to decide. I did not want to put Nicky through the agony but I also did not want him malnourished. I knew that he would not have the strength to live a relatively healthy life without the g-tube, so I went ahead with the surgery. Thank God it proved to be a success. Nicky started growing again and gaining much needed strength.

Shortly after enduring the stress of the g-tube surgery, I was faced with yet another threatening situation. Nicky’s esophagus was constricting due to severe scarring, making him unable to swallow even his own saliva. He would need his throat dilated to enlarge his esophagus. This time Nicky’s need for medical intervention was much more dire —he would die very quickly without treatment. I still feared putting him through the pain of surgery again, but after researching the procedure, I found out that throat dilation is so minor it is performed in an out patient clinic instead of a hospital, and the best part, Nicky would only experience mild pain. Because of the nature of his condition, Nicky’s throat is continually closing in and now, after several dilations, Nicky has become so comfortable with the procedure that he tells me when his throat needs dilating, again.

As Nicky grew older he also grew more conscious of his condition. He started recognizing that other children had something he wanted—the use of his left hand. This posed yet another painful decision, whether or not I should put Nicky through a reconstructive hand surgery to retrieve the fingers that were lost in the palm of his hand. I agonized over putting him through such excruciating pain so he could gain the mobility, but he watched other children with all of their working fingers, and he wanted his fingers to work, too. The g-tube was nothing in comparison to the torture Nicky would have to endure, and I deliberated long and hard, for a child who just wanted to be a bit more like the other children.

Quality of life, at least for my child, is very important and as the parent of a Special Needs Child, the decision to change the quality of his life is ultimately mine. With still much apprehension, I decided Nicky should be able to enjoy a higher quality of life because even healthy children are given painful shots, go through dental surgeries, and plastic surgery for a higher quality of life. And so, we went ahead with the surgery. Afterward though, I hated seeing him in so much pain, in fact, I still cringe at the thought. I was afraid that maybe I had made the wrong decision, but it was not until a fellow mother of an EB child apprehended me that I realized how I truly felt. She told me she was shocked that I would put Nicky through a treacherous hand surgery, and said that she would rather see her son’s hands web before she would put him through the agony. I was stunned that she would judge and ridicule me so vehemently. She made me feel like a horrible monster of a mother who was not thinking of the best interests of her child. But how could that be? I was thinking of the best interests of my child. He now he has fingers that work on that hand, fingers he uses. He feels more normal now, and even though he is not sure he would go through the pain again, he truly enjoys his 'new hand'. I may indeed put my son through surgeries, but at least afterwards he gains quality of life.

As a parent of a Special Needs Child, I understand that each of us have different opinions of what treatments and surgeries outweigh the risk or pain, but one day we all have to make the saddest and most painful decision that a parent will ever have to face—the decision of when to let go. After watching the movie Steel Magnolias, I felt a certain affinity with Sally Field's character, the mother who had to decide when it was time to "pull the plug." Many parents everyday have to decide when their child has had enough surgeries and treatments, perhaps too painful or no longer working. They have reached a break point with their child where fighting every turn for more options, only leads them down the same path and they have to face the painful realization that the fight is lost and the days together with their child will come to a treacherous stop. I cannot think of a worse scenario. Knowing any day, any moment could be the last—walking in the child's room in the morning, wondering if he or she is alive, feeling helpless for not being able to do anything. Life is reduced down to a ticking clock, waiting, watching, praying, crying, until the final moment when the child is released of his or her ill equipped vessel and it is over and the child dies.

Living and caring for a Child with Special Needs gives birth to an abundance of self-realization and growth. I learn everyday about myself, love, and the blessing of life. On most days, the furthest thing from my mind is my child being different from any other. I do not feel sorry for myself or for Nicky; we just live and take care of what needs to be done. We laugh, play together, even bandage changes are so routine it feels like a 'normal' thing to do. I do not have any other children, so I do not have anybody to compare him to on a daily basis. It is when we are out in public that my awareness changes and I am faced with another form of emotional pain. One that wishes my son was judged by his soul, not his outward appearance.

Admittedly, I have gotten used to having my child stared at. I realize that people are curious and notice things that are different than what society feels is 'normal'. Picking out what's different is a skill we learn at a young age. It has allowed us, in our most primitive form, to pick the freshest fruit to eat so as to avoid illness from the foods and spoils of the land. But my child's disability is only part of who he is. His disability, being so incredibly visible, makes people tend to concentrate on that alone, sadly enough and the stares and questions can truly be heartbreaking.

There are those who just ask 'what happened' but do not seem very interested in the answer. Then there are those people who truly seem concerned and ask a million questions... I even had some wonderful souls who start crying. Then there are those who think they are out of earshot and comment or try to explain to their children what is 'wrong' with Nicky. They always, without fail, get it wrong. Any skin disorder pales in comparison to EB, so I know that people do not understand how badly Nicky is affected.

But aside from the anguishing decisions I have to make and the judgements or ignorance of people, my relief is being loved by Nicky. His skin may be damaged, and he might have tons of wounds and limitations, but inside, he's as whole as any of us, perhaps more so. He has a keen sense of love and his ability to forgive is beyond measure. He is without a doubt the happiest child I have ever seen. Even after an excruciating bandage change full of blood and needles, he's so happy it is over that he hugs me and starts singing with a radiant smile.

© 2003 Silvia Lawniczak

ABOUT THE AUTHOR

Silvia Lawniczak is a writer, Web Developer and author of a biography in Italian. First and foremost, though, Silvia is a mom to her much loved son, Nicky, who suffers from the Recessive Dystrophic form of Epidermolysis Bullosa. Nicky’s skin is so fragile, the slightest scratch will result in a 2nd degree burn-like wound. Having already lost one child at birth from this condition, Silvia decided to write a book about her experiences in an effort to help others. She works actively in raising awareness for her son's rare condition and is the founder and webmaster of the ebinfoworld.com website, which is a help site with personal stories, mailing lists, and a wealth of information for patients and carers. Silvia decided to start her column at Sleeping Angel when she noticed that there wasn't one out there for special need parents. No one can write what it feels like to raise a special need child other than one who is such a parent.

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