Toi is a Cool Bean!
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Dear all,
I'm Kiyomi, Toi's mom. It has been 7 years full of joy and sadness. I have felt at a loss many times because I didn't know this disease well enough. The two years and four months that Toi stayed in the hospital was the hardest time for all of us. He was bombarded with repeated pneumonias, respirators, tracheotomy, etc., and to make a matter worse, I didn't have a good trusting relationship with the hospital staff. Even with my husband, Takuya, we had different takes on Toi, and I felt so alone from time-to-time. |
 Cool! |
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During this very trying time, however, I got to know so many precious people who understood and knew what I was going through, and their encouragement gave me strength.
When Toi's condition became very critical, we decided to use a respirator. It was we, his parents, who decided to let Toi keep living with this machine. I thought to myself that it was our responsibility to do absolutely everything I could to make Toi's extended life meaningful, with joy and happiness. In the beginning, it took some time to adjust to taking care of him at home. We were so worried something could go wrong that we were always nervous. We always opted for safety and stayed away from everything. I can't say he had fun back then. We bought a stretcher for him so that we could go out and see people other than just family members. I was still questioning myself whether this was the life Toi wanted and if he was enjoying all this. |
 Ho ho ho! |
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Last year, in spring 2003, he started to go to special needs school in grade 1, and things changed for the better. I wasn't expecting much from schooling because of my miserable experience with the hospital. The school suggested that since his condition was medically fragile, they would come to our home three days a week. I was worried sick to let these new people handle Toi. Toi, on the other hand, thrived. I couldn't believe my eyes. He responded to this new experience in so many ways! I realized then that what I thought best for him was only what I thought, not what he wanted.
His teacher takes Toi seriously, constantly feeling and asking how Toi feels through a slight response he makes during the class and applying this to how his education is handled. I only heard negative comments and test results during the long hospital stay. Even myself, his own mom, thought he wasn't able to do anything and, in a way, gave up on him. I realized that he had real potential and felt so ashamed. When called by his name, he answers by blinking. When he hears his teacher's loving voice, his expression changes. He also knows the different voices between his mom and his teacher. Once a week when a home care nurse or a caregiver comes, his expression goes "This isn't my mom or my teacher, who the heck are you???" |
 Happy Birthday! |
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He looks troubled just before his seizure kicks in. Sometimes he trembles when he's upset. These are all very slight responses, but to me, they are all Toi's precious dialogues.
Krabbe Disease won't stop its course, but Toi still has many feelings. I spent many days wondering whether using a respirator was the right thing, but now I can see so many new hopes. All I can do is to face the difficulties head on as they come, get over them, and keep his quality of life as high as possible. Dearest Toi, I know I'm not a perfect mom, but we'll get through this together and I'll be right beside you always. Kiyomi Imamura April 9, 2003 |
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From Toi's Dad,
When Toi was born, I was exhausted and in a deep sleep on Kiyomi's hospital bed (she was in a separate labour room). When I awoke, the first time I saw Toi, I felt overwhelmingly thankful to Toi for coming to us as our son. A few months passed, and I remember wondering why he cried so much. I guess that was how Krabbe started to show. For me, however, the real beginning of our journey started when we were faced with the decision to use a respirator when Toi was almost one and a half years old. We got a call from the hospital in the middle of the night. Toi had been in the hospital for three months by then due to repeated pneumonia, and suddenly that day, his condition took a turn for the worse. By the time we got to the hospital, he was in an oxygen tent and being respirated by a nurse so that he would breathe. His heart rate was unstable and the O2 saturation level had dropped. "What happened? What does this mean? What took you guys so long to call us when Toi was clearly in this critical condition?" I was in a panic and took a while to calm down. It took us 10-20 minutes from the phone call to arriving at his room. If we had lived a little farther, I don't think we would even have had the option for a respirator and he would've been gone. |
 Joy to the world |
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We made a choice to use the respirator to extend his life. Truth be told, Kiyomi didn't want Toi to live like that. It was me who so desperately felt this was the only option. I just couldn't let him go when he had this option to continue his life. Toi was right in front of me, and I didn't want to lose my son. It was too soon, just too soon.
Did I make the right decision to opt for a respirator and extend his life that day? I don't think I can answer that and probably won't be able to for the rest of my life. All I can do now is to keep trying to make it right. For Toi and for ourselves, I will keep trying everything I can so that his life with a respirator will be something worth living. Living with a respirator might seem like the machine was making the person live rather than the person was living his life. Toi's doctors, armed with all kinds of test results, tell us he is in a semi-vegetative state. Let me tell you, it is absolutely not right. He can differentiate his dad from mom, or his family from some strangers. When he's in a good mood, he answers us by blinking. He makes a face to let us know he needs a diaper change. To me, Toi uses a respirator because he can't breathe well just like a person with poor vision uses glasses. It is nothing extreme, nothing unusual, just one way to function and enjoy his life. That's how I look at this reality. I know I might be just trying to convince myself so. |
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Kiyomi has been amazing in Toi's everyday care, I'm so thankful for that. So I naturally thought my role would be to have all the knowledge out there and to set up Kiyomi and Toi with the best possible environment at home. Toi was medically so fragile, and going home meant that we had to learn many things. While Toi was still in a hospital, I learned everything about his condition and especially about respirators. I bought so many medical books and read up and down and inside out. I had never ever studied so hard in my life!! I will write about how our life's been finally at home with Toi soon.
"How the past was is not important. How the future will be is. "When having lost hope, not when in despair, people stop moving forward." These are my favorite lines from a book. When I struggle with trouble with my work, family, or hospitals, I try to remember these lines and remember not to give up. I have my wife and my son. They are my strength and my hope. I'm quite busy these days with my job, but I will keep trying to spend more time with my family and cherish it. Takuya Imamura April 20, 2003 |
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