© 1983 Rosemary J. Gwaltney
I wish the rest had not been lost. But this much is worth keeping, and sharing, because it was a part of my life, and a part of three very special children. I wrote the following article in 2004, to go along with the lost portion of this one. It can be found here: https://www.angelfire.com/journal2/caressa/whatisitreallylike.html
I adopted three of my children simply because I love to nurture. All three are profoundly retarded and have Cerebral Palsy. Two are blind, and one is also deaf. Unfortunately, when medical experts write these labels, they do not think to include the personality of the child, thus robbing them of their humanity on paper.
To me, these three children are just that - children. For me, the focus is not on the disability, but on each particular child, his or her personality and individual needs. For me, the rewards come through their smiles or laughter; through seeing them dressed well, and making sure their hair is clean, their bodies fresh and sweet. My joy is smoothing lotion on them after a bath, or getting them relaxed enough so they can be cuddled.
There is a deep satisfaction, to me, in giving joy to these children who can receive so little from the world. If I can tap a way through - connect on the switchboard of a child's brain, who never connected with the outer world at all before, that is a major triumph. And I have felt that triumph. And there is nothing like it to compare.
My daughter Misty is nearly six. Quietly she sits in her wheelchair, and would sit there all day if no one moved her. Once in awhile she will make a humming sound, and sometimes she suddenly giggles, as though some happiness suddenly burst from a secret spring in her soul! We still turn toward her when she does that, and chuckle with her. But no one dares touch her when she laughs, or she will jerk to a stop, quivering, horrified ... her private little self broken into. We touch her a lot, but over the years we have learned not to touch her when she giggles. It is too lovely a sound ... and we need to hear it! Misty is fed through a tube in her stomach, being unable to eat by mouth. She does not understand what she sees or hears. She makes no purposeful movements except to rub her right eye occasionally. But she is a lovely child - a precious child - long slender fingers, big brown eyes - such a beautiful little face! To see her is to love her.
My son Joshua, nearly three, sits in his wheelchair too. He has needs and desires though, and fusses when he wants to be moved. He chortles and guffaws in great delight every time someone moves furniture - even just a chair - for some reason, moving objects just strike him terribly funny! He watches his siblings, and smiles and giggles when played with. Yet he also has no speech, not even babbling, and no use of his body at all. He is, in addition to the stomach tube, fed with a 24 hour drip pump, which doles out the special formula one drop at a time. He can only digest 50 ccs per hour - not even two ounces! And that little pump has been such a wonderful relief to us, and to him - freeing him from gagging and screaming as he would do if even one ounce was poured in at a time - it has earned itself a name, Matilda! It goes with us everywhere, mounted on his wheelchair, and must be counted before every trip, along with the twelve children and the dog!
And little Zachary! One and a half, he has very little brain. His brain did not form correctly before birth. So he is blind and deaf, and cannot make any purposeful movement except to bite his fingers. He must wear socks on his tiny hands at times, to protect his fingers from those four little teeth! Zachy can smile - when his cheeks are stroked. The longer you stroke, the bigger his smile gets! He doesn't open his eyes, but his little mouth is so expressive, it makes up for the sparkle you usually expect from eyes. We don't know how long Zachy will live, but however long it is, those smiles are enough to keep me satisfied. My hope for him is that I can keep that happiness in his heart. When he gets to Heaven, he will be well and whole. He is very precious to us all.
Because these three children basically do not change, but stay much the same, the whole focus of being their mother is different. Unlike other children, they will not be growing up and moving away, and I don't need them to. Although I know I have the option of sending them to nursing homes in adulthood, my plan is to keep them at home. When they are older, there are adult disposable diapers, and lifts to save my back, and any number of other solutions to possible problems.
But there are no books on how to raise a profoundly retarded child. With children like this, there can be no blanket statements, like "at 8 months the child will be like this". And years ago, when a profoundly retarded child was screaming, I didn't know to think of constipation, possible seizure activity, or needing a simple change of position, as problems. I only knew the normal "hungry, tired, wet" answers, that everyone knows.
