“Sometimes I think it’s all too much, I can’t take it anymore. And then, out of nowhere, there it is again, this power that drives me. –
An interview with an inspiring, strong mother and her life with a seriously ill child.
Interview with: “Gaby* (Alias).
“SHORTLY AFTER THE BIRTH IT WAS ALWAYS SAID: THERE IS SOMETHING WRONG WITH THIS CHILD.
My son Kilian, born 2006, has a very rare disease. Shortly after the birth it was always said: Something is wrong with this child, what do we not know? For me as a mother the absolute horror. I had an infant who stopped breathing after the Caesarean section, had adaptation disorders, did not drink enough, had no body tension at all. And all I wanted was a second child. Just eight days old, my child was now also seriously suffering from heart disease. They advised me, don’t let your child scream unnecessarily and keep him from being too excited. An odyssey followed…Countless doctors, clinics.
Many possible diagnoses were told to us sometimes more, sometimes less sensitively. Our lives turned upside down in a second. Sleepless nights, a life beyond everything we worst excpected, that was from now on our healthy, happy family life. Kilian’s condition worsened noticeably. At the age of six months the heart catheter was inserted. Unfortunately this did not bring the desired success, instead, the doctors found yet another problem. The Noonan syndrome. This complex malformation syndrome is one of the rarest diseases existing.
Unfortunately, not all genes responsible for this syndrome can yet be named. We had to wait nine years for confirmation. There are several mutations. Kilian caught one that had only been published twice before him worldwide. He is number three. What does that mean for us? There are no possibilities for comparison, that is a prognosis, there is no timetable.
“our OWN NEEDS EASILY STEP INTO THE BACKGROUND.”
Kilian’s genetic defect includes: complex heart defect, small stature, visual impairment, mental retardation, severe developmental retardation, etc. In addition to the syndrome, Kilian has additional issues: cyclic vomiting, atypical autism. After the first ten years, we can look back on 38 hospital stays, nine operations, countless appointments with doctors, therapies. Of course, this also restricts us a lot in our lives.
In order to cope with our everyday life, we need a well-functioning social network; doctors, therapists, clinics, family relief service, health insurance funds, nursing care fund, integration assistance, early intervention, special care kindergarten, support centre, medical supply store…
I use the mornings for the household, telephone calls, visits to the authorities, my own doctor’s appointments, shopping. If there are any sudden hospital stays, they demand enormous flexibility from us. Our own needs easily recede into the background. I am happy and grateful that I have a husband who stands by his family. We learned by knowing other cases that the relationships are often not stable enough. We both get involved in self-help, go to sports, have our dog and support each other.
While healthy children go to sports clubs or visit friends, my child has been doing physiotherapy well for ten years. We treat ourselves and him to riding therapy several times a year. Instead of a music school, Kilian visits music therapy. At the age of 10, he is on the developmental level of a 2-3 year old, wears diapers day and night. Since normal food is not enough, he drinks “astronaut food” from the teat bottle. Excursions and holidays must be carefully planned. Because of autism we have lost almost all spontaneity. Kilian needs round-the-clock care.
“THERE ARE MOTHERS WHO ARE NOT UP TO THIS FATE.”
Sometimes I think it’s all too much, I can’t take it anymore. And then, out of nowhere, there it is again, this power that drives me. Not all mothers can do that. I had the choice to give up or fight. Fighting for a halfway bearable life away from the norm. Our son will never be able to live independently, he will always be dependent on help. Our life was decelerated by Kilian.
He lives and develops at his own pace. He was only able to run when he was four years old. Patience and unshakable faith are required. During the years I was often told: “I couldn’t do that, a handicapped child, not at all”. When I then answer: “Yes, as a mother a woman can do that”, I get a head shake.
And indeed, there are mothers who are not up to this fate. For me there were no other options. I love my children and am there for them, in whatever form. Sometimes we sense pity, unfortunately. Our life is by no means pitiful. Compassion is what we need as much as understanding. Besides all the difficulties, the fears, the little sleep, there are many incredibly beautiful moments.
We got to know people and places that would be closed to us without Kilian. We are grateful and we can enjoy the moment. True to the motto: Carpe Diem! We can switch off. If you get involved in the adventure of disability, you can grow and broaden your horizons. I wish for more tolerance towards everything that is somehow different.