The birth of Julie Riera Matsushima's twin granddaughters in August 1997 was cause for both celebration and sorrow. Baby Chloe was perfectly healthy, but Aimee was born with devastating disabilities, and doctors told her family that they did not expect the girl to live. Not only did she survive; but with the dedication of her family, she thrived.
The following excerpt from Matsushima's book, For the Love of Aimee (Emerald Book Co., 2011), details the family's journey from hopelessness to triumph.
One evening, when Aimee was three, my daughter-in-law Janise phoned, excited. "Turn on the TV," she said. "There's a program I want you to see." It was about a physical therapy regimen in Poland for children with cerebral palsy, like Aimee, and other debilitating conditions. The therapy had helped some children walk and offered possibilities for other areas of improvement.
The idea involved patterning, physical therapy, and something called Adeli suit therapy. Janise was enthusiastic, and I wondered it if was something that could help Aimee. When Janise asked me if I would ever consider doing something like the Polish program with Aimee, I replied, "Yes!" without hesitation.
The Adeli suit was designed in Russia to help cosmonauts adjust to low-gravity conditions and weightlessness in space. The idea is to move body parts against a resistance, improving muscle strength. In the 1990s, it was developed as a mode of therapy for individuals with cerebral palsy. The suit is designed to correct the patient's posture and movements. To do that, it adjusts the course of the muscles, forcing them to move as closely as possible to the way they would if they functioned normally.
The treatment is noninvasive but intense, and the apparent benefits vary with each child. We determined the possibility of improvement was greater than the risks involved. And it was better than doing nothing at all. It was decided that I would go with Janise and Aimee.
Welcome to Poland
What awaited us in Poland was far from luxurious. Our room was clean, but dark. Two rusted chairs were on the small balcony, which we could not use because of the cold. Aimee adapted to her surroundings without any problems. It was more difficult for Janise and me, but it would only be a month.
Medical evalutions were scheduled for the next day, and although Aimee had been prescreened, we still worried. The physicians examined Aimee and completed their evaluations. She would begin therapy the next day.
Aimee had very limited speech, although she could say a few simple words. She said them often and sometimes repeated them over and over. Her physical abilities were extremely limited; she could not sit, crawl, or walk independently. When placed on the floor, she lay flat, because she had no arm or leg strength to raise herself up. The therapists made it clear that the success of the therapy would largely depend on Aimee's ability to understand instruction and her willingness to do the work.
A Rocky Start
Therapy didn't start smoothly. At the first session of the day, wearing the Adeli suit, Aimee cried for 45 mintues, until she was gagging, choking, and gasping. This scenario was repeated over and over, resulting in Aimee's absolute exhaustion — not to mention our own.
Janise and I fought to control our own tears, not knowing what to do. Should we stop the therapy or sit tight? It was clear that Aimee wasn't being harmed or in pain, but she screamed as if she were being tortured. Perhaps in her own mind she was.
If it had not been for the encouragement of other parents, I have no doubt we would have packed up and left for home that day. But so many others assured us that after a day or two, her terror would end. Going home now meant we would be giving up. We had to be strong. We knew this was our only chance and agreed we would stick with it at all costs.
Breakthrough
The next day, we sat in the hallway when Aimee's therapy began. She cried for the first 15 minutes and then stopped. We heard laughing, then crying again, then quiet. Then once again, laughing. We peeked into the room. She was exercising in her Adeli suit and smiling. We were flabbergasted to see her bonding with the therapists and communicating with them — in spite of the fact that they didn't speak or understand English and Aimee barely spoke at all.
Finally, we were allowed in the room and observed Aimee standing upright in the suit, and with the aid of therapists, actually taking steps forward. We couldn't believe our eyes. Aimee headed in our direction, clearly proud of herself. It was a fantastic moment.
Midway through the course of therapy, Aimee began speaking in sentences. Three sentences, to be exact, all appropriate in sequence and content. I was reading in bed and she said, "Grammy, put out the light!" Then, "Grammy, go to sleep!" And again, "Put out the light!" This event was only the beginning for Aimee, whose speech would blossom on that trip.
[Based on the incredible success of that first trip, Aimee and Julie traveled to Poland for therapy six more times. Julie has also taken Aimee for similar treatments in Southern California several times, and continues to do so.]
The Story Continues
Aimee will be 14 this year. I reflect now on these years, years that I could have never imagined. Fourteen years ago, I had it all — I knew exactly who and what I was. But time would prove me wrong. I did not know Aimee. Through her I discovered the depth of my own character, the power of my love, the conviction of my faith, and my courage in the face of hopelessness and despair.
As a grandparent I could have walked away, saying that this sad situation was not my responsibility. Instead, I decided to get involved and live the example of commitment to family that I had learned from my own parents. It was a question of responsibility and what I wished to do about it. I didn't think about it then or ruminate over what I should or should not do. I followed my heart and my conscience, which took me on a difficult journey and enriched my life.
In 2001, Julie established the nonprofit That's Amore Foundation, to serve children with disabilities. All proceeds from her book will be donated to That's Amore.
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