A mother writes of the demands (and joys) of raising a multi-handicapped child.
My little son, Johnny, isn't so little anymore, but he will always be little to me. He is a joy, and he is an incredible Miracle of God.
Johnny is now nearing 11 years of age, but his life has certainly NOT been at ALL easy. He has had to endure more pain and heartache in his brief nearly 11 years on this earth, and I am afraid that his life will only become more difficult; but through all that he has been through, Johnny still brings sunshine, hope, and love to all he meets, and once people have met my son, they will never forget him.
Johnny was born very premature: he weighed only 2 pounds at birth, and even though he was a very tiny baby, he was quite healthy. He had some breathing problems, but those were resolved by the time he was a few weeks old. He came to us at the age of nearly three months from Germany, where he was born; and he's been ours ever since. He has managed to wrap his tiny self around our hearts, and our lives are richer because OF him.
Johnny did all the things a normal baby did: he walked and talked at about the same times most normal babies did; but he WAS rather clumbsy in nature. We associated this "clumbsiness" because of his being born premature; but then came the sad day when our doctor suggested that he be looked at by a specialist specializing in neurmomuscular diseases because he suspected that "something was not quite right"; and he wanted to make sure that Johnny was okay. But it turned out that he was NOT "okay": he had the beginning symptoms of muscular dystrophy; and the doctor was telling us that he would be dead before he even reached the age of five. He said that he would probably have to use crutches or a wheelchair before he was three years old; and it wouldn't be long after that when he would require the use of a wheelchair.
Of course, as you can probably imagine, the news devastated us. We couldn't believe that our healthy, apple-cheeked, blue-eyed baby boy had been given such a cruel death sentence. He didn't look like he was sick: his big, bright-blue eyes sparkled with love and life, and his cheeks held a healthy, rosy appearance; and he laughed and sang often. He was a little klutzy, but we were hoping that what the doctor had told us was only a dream. But it wasn't.
By the time he was three, Johnny was falling with regularity, and the day we got his first pair of crutches and his wheelchair was a day we would never forget. Both Bill and myself cried buckets of tears when we brought the appliances home; but Johnny didn't understand the seriousness behind the crutches or the wheelchair: he just saw them as "presents", and he delighted in using them. He saw the crutches and wheelchair as "big toys", and he had a ball using them. Many days following were fraught with laughter and joy from Johnny; he really got a kick out of them; but each time we heard his giggles, our hearts were stabbed. The crutches and wheelchair were harsh reminders that Johnny's disease was becoming more noticeable, more apparant, and it only meant that we were inching towards that sad day when Johnny would leave our hearts forever and ever.
But Johnny soon wasn't laughing when he got his first pair of leg braces: they pinched his tender little legs, and they were heavy and bulky; and wearing them made him tired and cranky; but we tried to tell him that he needed a little help in walking, and this was why he had to wear these braces on his legs. We tried to make putting on his braces a game; but Johnny didn't think it was so funny; still, in time, he gradually learned to accept the braces, and soon, he was zipping around the house, faster than he could ever go before since being diagnosed with the muscular dystrophy.
At five, we were all ready to say goodbye to Johnny: he was using his wheelchair more and more, but somehow, he hung on, and he passed the date when he was supposed to have died; and soon, he was looking at his sixth birthday. He was growing into a very handsome young man with a shock of baby-fine, white-blonde hair that had a tendency to stick up, huge, bright-blue eyes, and the apple cheeks that he had from his babyhood; he proved to be a very handsome little boy who sang and laughed often. He had since accepted his disabilities; and he tried his best to live life as normally as he could. He played his games with his brothers and sisters, and he struggled through school; and he could cook up mischief faster than some of his younger counterparts. He proved to be quite the handful, and disciplining him proved to be quite a daunting challenge.
Johnny had survived a devastating illness heading towards his seventh birthday; for a while, that slowed him down, and we were again faced with the possibility of his dying; but he survived, and once he recovered, he was back to his formerly active self; and life for him meant nothing but having fun and living life to the very fullest. Then came the day when he had his first seizure.
I remember that day like it was yesterday. Johnny was a few weeks shy of his seventh birthday, and he was playing with his sisters and brothers when the screams from several of the kids brought me running into the family room. Johnny was lying on the ground, shaking all over, and his face was a dark blue in color. He was grunting loudly, and bloody sputum was dribbling from his mouth. I never was so scared in my life like I had been at that moment: I thought he was choking or something horrible was happening to him. I picked his still-seizing form into my arms, and I had one of the older kids call for the doctor; but by the time we had gotten to the doctor, Johnny's seizure had abated, and he was now sleeping heavily, as though nothing had happened.
Unfortunately, this wasn't the last time this episode would happen. Johnny had several more of these "seizures", and once he had further testing, the doctors told us that Johnny had epilepsy, and that he had suffered irreversable brain damage; and these seizures were a direct result of this "damage". Of course, at the news, Bill and I both cried as though our hearts would break; there is nothing more devastating to a parent than to be told that their child would be brain damaged for the rest of their life, and nothing much could be done to stop or reverse the damage. He would have to be on medication to help control the seizures for the rest of his life, but there was no telling whether the seizures would improve or just get worse, even with the medications.
Johnny is now nearly 11 years of age, but he continues to have daily struggles with his health. His seizures are partially controlled (he still has seizures every few months or so), but his muscular dystrophy has worsened considerably. He now needs help with many of his personal affairs, and he now requires the aid of an assistance dog, who acts as his arms and legs. His dog alerts us if he has a seizure, and she helps him pick up dropped items from the floor, and she also gives him many hours of unconditional love and companionship; and the two of them have since become the best of friends. They are always together, it seems, and both Johnny and "Ginger" love each other fiercely.
Johnny also has breathing problems, as his lungs have gotten weaker, and he now requires supplimental oxygen; but he still is a very happy and outgoing young man who still finds life interesting and enjoyable. He still lives for the moment, and now that he has Jesus Christ in his life, life, for him, suddenly has more purpose and meaning, and he isn't nearly as fearful about dying as he used to be. He is looking forward to seeing Jesus face to face, and he knows that once he DOES die, he will be healed of his muscular dystrophy, and he will, at long last, be able to run and jump again, two things he wasn't able to do for most of his time here on Earth. He will be healthy again, and he will no longer need things like oxygen, medications, braces, crutches, or wheelchairs; he will be, at long last, a normal, HEALTHY boy who fulfilled his time on Earth in a profound and unforgettable way.
Johnny has certainly brought us many moments of joy (and even some sadness or aggravation), but he is a child with spirit, and he is a child who has amazed many with his courage and tenacity in his will to live with such a devastating disease that threatens to cut his young life short. He lives for the here and now, and he has taught people about accepting their lot in life and to be thankful for things that they have, and not worry about things they DON'T have. He teaches people to look at the good in life, and he is a very good little teacher who teaches his lessons in a powerful and unforgettable way.
I am especially proud to be his mother. Johnny is certainly one in a million, and he has certainly made MY life a lot better--not to mention, more meaningful! Oh, if more people knew just how much my son means to me or knew of his courage in the midst of such trials...he is a little Miracle, and I am SOO thankful that he is MY son, MY heart, and MY world! He is ALL that to me, and SO much more!
Ah Karen, just what I needed, a good cry and the reminder that life is worse for others, so stop feeling sorry for myself...thanks for that reminder...if Johnny and his problems are real, then he and his family have my condolances, if not, then it was a great write either way...peace, Ed & Rufuz
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My little son, Johnny, isn't so little anymore, but he will always be little to me. He is a joy, and he is an incredible Miracle of God.
