Changed by a Child
Hannah Canavan was born on January 26, 1997 in Melbourne, Australia. There was immediate concern that she might have a genetic abnormality, but her parents, Karen and Gavan, opted to delay before having her undergo testing. They took her home to her two older siblings (then seven and five years old), and waited to see what unfolded. They didn't have to wait long.
"At ten weeks of age we saw the first of many tonic-clonic seizures, and she was hospitalized three times in the next two months in an effort to find a drug to control them," Karen explains.
"By the age of four months, the seizures had become worse and an MRI scan was ordered. It revealed that she had an underdeveloped brain, a malformation called polymicrogyria (many small folds of the brain)," she says.
"We were told that life expectancy was reduced in children with such severe symptoms as she displayed, but nobody would hazard a guess as to how long she would live, nor did we really want to know. Hannah's brain was affected over almost the entire surface, and we were warned that she would most likely have disabilities, but no definite prognosis was possible. So, we loved her and did our best for her as many difficulties became apparent."
Those difficulties included fluctuating tone (ranging from floppy, weak muscles to stiff, tight ones), the need for a gastrostomy tube when she could no longer nurse or drink from a bottle, cortical visual impairment (her eyes were perfect, but her brain could not process images), daily seizures, and the need for orthopedic surgery.
Karen immediately dealt with the situation by going into "control mode"-- gathering information and seeking out the best care and therapy for her daughter. Her husband, Gavan, felt a mixture of shock, anger, panic and fear--for himself as well as Hannah.
"I had no time for anger and sadness," Karen says. "But eventually they caught up with me, seven months after the diagnosis."
She explains, "On Christmas Day I was sitting in church, not with my friends, as I had arrived late. There was a beautiful song being sung by a fellow with a lovely tenor voice. The song was the words of Joseph, the earthly father of Jesus, pondering the awesome responsibility he had in raising such a special child, whom he knew to be the Savior."
"I was struck by the analogy to our life, caring for and raising this daughter who had so many special needs, and I became quite upset. At the end of the service I approached a dear friend with my tears and misery, and before I knew it I had confessed how angry I was with God. It shocked me that such a notion existed in my head, but I didn't fight it. It was how I felt and that was that. The anger simmered for about two months and then dissipated, but it was an interesting learning curve for me spiritually and emotionally."
As most of us with special needs children know, there wasn't much time for Karen to dwell on her feelings, because all too soon another crisis hit.
Hannah was scheduled for routine orthopedic surgery. Because her daughter was on the ketogenic diet, a regimen that maintains strict control of the amount of carbohydrates entering the body in order to control seizures, Karen prepared for the procedure by writing letters, making phone calls, and having discussions with everyone involved in Hannah's care about the details of the diet.
Despite her mother's best efforts, Hannah was given an IV full of glucose that threw her back into uncontrollable seizures that lasted up to five hours a day for the following four days.
"I clearly recall speaking to the doctor who wrote the order, and also recall that she had never heard of the diet and obviously paid no attention to my warnings. From that day on I never allowed staff to do anything to Hannah without asking them to explain to me first. Very quickly they learned that this mother wanted to know EVERYTHING that was being done with her child. I made formal complaints to the hospital administration, and I was forever changed by the whole ordeal. Hannah could have been discharged two days after her orthopedic surgery if not for the seizures."
On a subsequent admission for seizures, Hannah was given an overdose of her seizure medication--ten times the required dosage! From that point on it was to hell with the hospitals rules about giving medication themselves--Karen insisted that she herself prepare all of Hannah's meds, unless they were newly prescribed on the ward, and even then they would be double checked by her.
Karen and Gavan's other children reacted to Hannah's disabilities in ways true to their own levels of development.
"Rebecca expressed sadness at the news that her little sister was not going to be 'normal'. Ben was too little to really know what we were telling him, and I don't recall any emotion from him because I think it was all beyond him. Both came to love Hannah, in their own way. Ben would do things with her and try to make her smile."
Smiles became one of the ways that the Canavans came to know that they were connecting with Hannah.
"We could tell most about Hannah by looking at her eyes, observing her body language, and listening to her vocalizations. From all of these we could determine such emotions as pleasure, pain, discomfort, anger and irritation. We didn't always wish for words because she made herself very clear," says Karen.
"Because Hannah could do nothing with intent, her demonstration of pleasure was almost always the result of interaction with others around her. She liked best to be cuddled on someone's knee, wrapped in someone's arms, or to be held up on someone's shoulder. She would just relax and allow herself to be cuddled, without her usual spasms and wriggling. We knew her ticklish spots, and her pleasure spots."
Karen goes on, "One thing I used to do for her was to lightly scratch her scalp with my nails, watching her smile as the goosebumps spread over her body. She also smiled wonderfully when she was rocked back and forth in our arms...not just a gentle rocking, but extreme downward movement and very quick sitting up...she seemed to be exhilarated by the fast pace. Holding her in my arms and spinning her around in a circle was also a great way to make her smile."
Karen remembers, "Sound was always a great stimulus too, and we would use many objects around the house to entertain Hannah. She would smile and chuckle as I worked noisily in the kitchen preparing meals. I would make a little 'symphony' by tapping a spoon on the glassware and dishes, and she absolutely loved the sound of cutlery being dragged across the corrugations of the kitchen sink. Birds, waterfalls, wind chimes, traffic...you name it, she enjoyed its sound. Even the sounds of a good argument were known to amuse her!"
On October 30, 2002, Hannah left this world and left behind a family transformed by her. Big brother Ben, who loved to make Hannah laugh, hold her on his lap and carry her around the room-- and who even sometimes helped his mother by administering tube feedings and enemas when necessary, was the one to carry her from her bed in the viewing area and place her lovingly into her coffin.
Hannah's short life changed not only her family, but those who know them. Karen ministers to others through her poetry and letters in the AngelBabyMoms online support group. In this way, she's helping other mothers who are going through similar experiences.
Karen remembers a message she received before Hannah was born:
"When I was pregnant with Hannah I dreamt of a roomful of pregnant women, each thinking that, statistically, they would give birth to a healthy baby. One woman in the room was to be saddened and disappointed, her life forever changed, because she was the only one in the group to deliver a child with a disability."
"After having exactly the same dream a second time, I began to think that the woman might represent me. I questioned who was I to assume that my baby would be healthy, that these things only happen to other people."
"At that point I prayed that God would give us what we needed to cope with this child, however she was to come into this world. I had no knowledge of her multiple disabilities before her birth, but I look back over our five years and nine months with her, and I can be thankful that that prayer has been answered again and again. It's not easy, but we live to tell the tale and hopefully to encourage others."
I want people to know that Hannah's life had purpose, and that that purpose is still being manifest even in her death," says Karen "No day was too hard to not be moved by the reward of her smile; and the difficulties, which defy description, were all worth it and we'd do it all again if we had the chance, except that we cannot find it in our hearts to wish her back with the problems she had. We were given the skills and resources needed to cope in our lives with her, a direct answer to my prayer."
Written by Carolyn Murray
