On the day of the school trip, we had lunch as usual. After lunch, it was time for a break, but it was at the end of this break that I saw my seven-year-old little brother being led by the hand by his teacher towards his classroom door. His classroom wasn't particularly far from mine. I took it for granted that he had fallen during his break, and didn't think much more about it. Then my school day continued. It is also worth mentioning that during this period I was struggling with anorexia. Recently developed anorexia, which therefore had not yet been properly addressed, but which had still progressed quite far.
Anyway, at school it wasn't until after the last lesson, when I got to check my phone after the school day, that I was met with a long text message from Mom. In the message she briefly explained that my brother had fallen from the climbing frame during the break, and that he and Mom had been forced to go to the emergency room. She explicitly wrote that it was nothing serious, but that the hospital visit was mainly for observation. Later in the evening, the whole family began to get increasingly impatient. The visit had simply dragged on for an enormous amount of time.
The plan was that he would just go there, be checked, and go home again.
But now it was suddenly late afternoon, and he and Mom were still there. Then we received the information that the doctors had decided to perform a comprehensive examination, after Mom had told them about his previous problems he had also had, including with his vision. This, of course, raised a lot of suspicions in connection with the fall from the climbing frame. Since so many hours had now passed without him being allowed to go home, Dad and I also decided to go to the hospital. My sister was staying over at a friend's house and therefore did not come along.
The worry that something serious was wrong obviously grew larger and larger,
but I tried to remind myself that the probability was extremely small. But Mom called already in the hospital parking garage. I assumed she would just ask where we were, but when I heard her crying in the background, I got my first knot in my stomach. Now the panic rose, my heart started racing, and my thoughts began to race. Dad and I went in, towards the ward where my brother was lying. At the room we were met by Mom, who had been waiting, with tears in her eyes, who told us that he had been X-rayed.
Then came the first report. The X-ray had shown that there was too high pressure in the skull, which meant too much fluid caused by a tumor. At this report I remember how the world completely stopped. It WAS serious, just as I had been so afraid of.
I wanted to cry, I wanted to scream, I wanted to run away from there, but all I could do was stand there, completely frozen.
While my brother lay somewhat half-exhausted in the hospital bed I noticed how my Dad also started to cry. Then unfortunately I broke down too. I could never remember seeing him cry. He was the emotionally strongest person I knew. At this point I didn't feel much hope for anything, while at the same time a million questions haunted me. Among them what would happen now, how we would tell my sister who is also very anxious in normal circumstances, and perhaps the biggest question mark of them all: would he die..?
While my brother together with Mom had to go by ambulance further to the university hospital, Dad and I had to go home again. We still had some hope left that it wouldn't be a prolonged visit down there, but a while after they arrived at the university hospital, Mom calls Dad, crying again, and explains that admission is a necessity, in combination with a major operation. This was the knowledge I was forced to carry in my head when I went to school the next day. Right then it was as if my and my sister's lives were expected to continue as if it were just any other day.
A few days later we had the opportunity to visit him at the hospital. He was listless and didn't really understand what was happening. After all, he was only seven years old. This was in itself very distressing to witness,
my brother, who otherwise used to be so full of energy, joy, and playfulness.
Summer vacation came, we were given a place to stay at Ronald McDonald's house and my brother's operation was performed. The feeling of knowing that he was going to be operated on, not being able to see him before or after the operation, and the uncertainty during the operation as well as when he lay in the intensive care unit afterwards, was frankly terrifying. I felt so helpless. At the same time I didn't want to put any additional burden on my parents. They already had it tough as it was. Among the worst things that happened during this period was when I asked my Mom if my brother would die, and instead of "no!", she answered that we didn't know..
I also stayed at Ronald McDonald's for a while, but I avoided being there constantly on the grounds that the environment gave me even more anxiety than being at home. My sister did the same, and since we were not supposed to "need to be home alone so much" my parents called down both my grandmother and grandfather who took turns living with us. The idea was that they would also "look after" my eating, so that it went in the right direction. Unfortunately, it was extremely easy to lie to them which led to my eating disorder continuing in completely the wrong direction.
A short time after my little brother's major brain operation another tumor was found, which required a second operation. It was after this operation that he suffered his perhaps most tangible complications. He suffered from Posterior Fossa Syndrome, also called cerebellar mutism syndrome, a condition that often means the child loses their speech ability among other things and gets balance difficulties. For my little brother, this meant that he could neither walk, stand, nor speak by himself, and therefore it was very difficult to communicate at all. Watching my own brother sit in a wheelchair and cry from sadness and frustration over not being able to convey his thoughts or feelings was extremely distressing and a feeling I will carry with me for the rest of my life. The months that followed consisted of a long and tough fight for him to slowly get back, while I myself fell deeper and deeper.
In connection with the operations both my sister and I were offered conversations with sibling support and a psychologist. I reluctantly gave it a few times, but unfortunately my brother's illness meant that mine was completely overlooked. This is at least my experience now in hindsight. They surely did as well as they could within their framework,
but in practice, the focus on everything else meant that I was left in the shadow with my illness.
That my little brother's illness in connection with mine had an enormous direct impact even on my parents' well-being is a given, but unfortunately it meant that I had to hear things that one as a sibling should not have to hear. What has etched itself the hardest is how I was constantly compared to my brother. Several times I was told that I was unfair and selfish for "consciously choosing not to eat" since my illness was considered "voluntary", unlike my brother who had not chosen his illness. I understand today that it was said out of pure panic and helplessness, but that didn't make it hurt any less to hear as a fourteen-year-old.Over time I unfortunately also started to believe this, and therefore didn't dare to bring it up because of guilt feelings. Neither of my parents could work directly during the summer my brother was admitted, which meant that we were forced to live quite strictly financially.
It has now been almost two years since my brother was declared healthy. It may sound like an eternity to some, but the reality is that the effects caused by the illness are still noticeable today. The illness's impact on the family's finances is an example of how the traces of the illness are noticeable, and what was previously seen as a given is no longer that. My little brother is just as fantastic as before, but of course has difficulties and requires adaptations that affect the family's everyday life. Seeing him struggle hard just to do things he had always loved before has also been very difficult. Also my eating disorder, which had managed to go so far as a result of everything that happened, has additionally made life in the family more difficult in many ways.
Even though my sister and I would have endured pretty much anything for our little brother's health, we have involuntarily and without warning had to sacrifice an incredible amount.
This without anyone really stopping and sincerely asking how she and I had experienced the whole thing. When he became ill I felt that it was taken for granted that we adapted immediately after that, and when he got well it was taken for granted that we instead adapted immediately after this, despite the fact that we were also affected long-term. As mentioned earlier, support was offered from the healthcare side, but unfortunately I only experienced it as a way to abdicate responsibility for concerns (my eating disorder and my and my sister's well-being under the circumstances), which at that point in time they did not prioritize to put any greater focus on.
To you who are a sibling to someone who is or has been in a similar situation: You are not alone. You carry no guilt whatsoever regardless of what you yourself are carrying at the same time, you deserve support, and you are at least as important- even if it may not feel that way.
