Foreword - Page 2 (cont'd)
We were lucky to have Zane healthy for three months. Slowly, she started moving less and less, lost the ability to swallow, and she began to lose tone in her muscles. All while having a smile on her face. The minds of children with SMA are unaffected. They tend to be very social and intellectual. Zane loved people. When she looked at you with her big brown eyes and long eyelashes, she gave you her undivided attention. People were drawn to her. One of her favorite activities (Keith’s too) was when he laid her on her back and moved her legs back and forth, rapidly pairing his voice with the movements. She gazed and smiled at him. Avery and Zane were always together: on the play mat, in a crib, in a stroller, or sitting with us on the couch. They explored each other’s clothing and faces. Eventually, Zane needed arm slings to manipulate things in front of her. Other times, they would just smile at each other, sitting in silence. Those three months were also a time of pure chaos. Weekly, if not daily, doctor’s appointments, in-home medical training, continuous medical equipment deliveries, early intervention therapies, insurance paperwork, locating and/or making adaptive equipment, countless phone calls, all on top of trying to successfully run a household. We did it with support. Support from each other, our wonderful families, our fantastic friends, the community, and Families of Spinal Muscular Atrophy — www.fsma.org Whether it was one person or a group, each party in their own way helped our family through this difficult time.
Zane became ill one beautiful spring day in May. She was pale, really pale. Her oxygen levels were low, and she was struggling to breathe. I looked at Keith, and he returned the frightened look back to me. That thought came back to me. “Is today THE day?” Frantically, we loaded her into the car and drove to the emergency room. She was admitted for twenty-seven days. Zane had contracted the flu. There were many days of one step forward and three steps backward. She had to fight, and she did. Some days were harder than others for her. She always smiled except when it was time to put the Bi- Pap mask on her. The hospital staff was caring and comforting. They loved Zane and she loved them. With Keith, me, and our compassionate circle of family and friends, Zane was never alone. There was always someone there to cheer her on. Slowly her condition started to improve. Discussions about being discharged were so exciting. At one point, I was jumping up and down holding her in my arms. Avery and Zane had not seen each other in twenty-seven days, aside from pictures. We couldn’t wait to have our family together again.
I brought Zane home that day. She slept in the car. At every red light, I turned around and looked at her. Sometimes I smiled or shed tears of joy and relief that she was healthy again. When the girls saw each other, Avery reached forward in Zane’s direction. Zane looked at Avery and she started whimpering. Keith and I thought this moment was going to be more than it was. As the hours past, we noticed Zane sounded congested. We had to suction her lungs frequently. I was getting nervous, but didn’t voice my feelings out loud.
Zane became ill one beautiful spring day in May. She was pale, really pale. Her oxygen levels were low, and she was struggling to breathe. I looked at Keith, and he returned the frightened look back to me. That thought came back to me. “Is today THE day?” Frantically, we loaded her into the car and drove to the emergency room. She was admitted for twenty-seven days. Zane had contracted the flu. There were many days of one step forward and three steps backward. She had to fight, and she did. Some days were harder than others for her. She always smiled except when it was time to put the Bi- Pap mask on her. The hospital staff was caring and comforting. They loved Zane and she loved them. With Keith, me, and our compassionate circle of family and friends, Zane was never alone. There was always someone there to cheer her on. Slowly her condition started to improve. Discussions about being discharged were so exciting. At one point, I was jumping up and down holding her in my arms. Avery and Zane had not seen each other in twenty-seven days, aside from pictures. We couldn’t wait to have our family together again.
I brought Zane home that day. She slept in the car. At every red light, I turned around and looked at her. Sometimes I smiled or shed tears of joy and relief that she was healthy again. When the girls saw each other, Avery reached forward in Zane’s direction. Zane looked at Avery and she started whimpering. Keith and I thought this moment was going to be more than it was. As the hours past, we noticed Zane sounded congested. We had to suction her lungs frequently. I was getting nervous, but didn’t voice my feelings out loud.
