“When Judas was born, he didn’t seem to be doing anything wrong. But when he was seven months old, I noticed he was moving his legs less than his brothers did at that age. My gut feeling said something wasn’t right. The counseling office referred us to a doctor. The doctor referred us to The hospital. There, Judah was diagnosed with SMA type 1 muscle disease. We were told that his life expectancy would be short. I thought: “In short.. what is the acronym?” Maybe 20 years? He will only be two years old. The ground fell from under my feet. I couldn’t contain it. Judas was merry in his chariot. I thought, “These doctors are crazy.” It sounded like a nightmare, but it’s been our reality for twelve years now.
in the hospital
During the first year and a half, Judas’ condition deteriorated at a much slower rate than the doctors had expected. Then he had his first severe pneumonia. Judas’ breath cost more and more strength. He has now got about forty admissions into IC. The reason is pretty much the same every time: severe pneumonia or mucus in his lungs he can’t cough up on his own.
We have always been told: If Judas gets on the respirator, he won’t get off her. Those IC shots were horrific moments for us. We’ve heard many times: It won’t work. After a few times you don’t want to hear it anymore. We believe in miracles. Meanwhile, Judah is 12 years old and hasn’t deteriorated in recent years. He can speak more forcefully and cough on his own.
Emery, our eldest son, experienced hospital visits very consciously. We have always made sure that his life goes on as usual. Even while he was in the hospital, his life went on and we took him to an overnight stay abroad, for example. So the position of Judas for our family became very “normal”. Our sons also used to know the nurses often called us around the house.
Judas goes to a regular elementary school. There is always a caregiver with him. If a nurse is scheduled for the evening, I can go for a walk with my husband, for example. On a good night, Judas called us three times. Then the heart rate monitor alarm goes off and he needs help coughing or yelling to turn it to the other side. Martin is always out so I can sleep. Martin can fall asleep instantly again, but as soon as I wake up, I flip and turn for hours, hence this distribution.
Because of Judas’ medical condition, a lot of attention goes to him of course, but we try to divide our attention evenly among the boys. They are completely different and that’s exactly what I love about them. For example, we sometimes go out for beer with the older ones. Boaz, our middle son, we once again delight in a day at the amusement park or something active.
When Judah did better and better, I started the professional photography course in 2018. In 2019 I started my own business as a wedding photographer. Now the wedding season has started and I’m very busy. During peak season I work an average of 45-50 hours per week. My husband is a special education teacher. He also works almost full time. Judas is at school during the day with his caregiver. He stays with him outside of school until we get home from work.
Martin and I split the family between us. Martin cooks every day. As soon as I get to the kitchen and the kids see they’re saying, “Huh, Mama, are you cooking?” I clean a lot. Martin arranges, although I direct him often. I’m more annoyed by the chaos. If we didn’t clean here for two days, the house would be a mess. If there is work to be done, I will take it. Martin always helps me, but I have the insight.
We have a joint account where it all comes in. I have a separate business account for my company. Additionally, Judas receives a personal budget for the care he needs.
Despite Judas’ case, Martin and I still thought it important to go away for the weekend together. This requires planning, as Judas needs to be taken care of 24 hours a day. Hence, caregivers and nurses are scheduled to work day and night shifts. So it takes a lot of work, but we still find it important to spend time together, because our house is very hectic.
We have learned to live each day and enjoy the good things. I hope all our children can travel healthy and happily, but we don’t know yet what that will look like for Judas.”
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