naturheilzentrum bottrop – guest commentary in the nabo blog: he who does not fight has already lost
diagnosis krabbe desease: christine babic writes about life with her disabled daughter, anna. about fears, joy and the hope connected with each small sign of progress
i remember that moment in the university hospital very well. i was heavily pregnant. our second child was due in a few weeks. but here it was all about anna. our almost two and a half-year-old daughter. the doctors in Heidelberg had turned anna completely upside down, nmri, blood examinations, all possible tests and checks. everything which seemed to be ok in the first 14 months of her life we had to question now. it looked as though anna regressed instead of venturing out into life.
in the so-called early learning and rehabilitation center in landau, pfalz (Frühförderzentrum landau, pfalz) People listened to our sorrows. we were sent to the university hospital of heidelberg (Uniklinik Heidelberg). then came the diagnosis: krabbe desease. it felt as if someone had pulled out the rug from under my feet. my enchanting daughter, this cheerful little Human being who had already taken her first steps on my hands babbling mummy and daddy noisily across the flat – this child was supposed to be incurably sick? suffering from an extremely rare metabolic disorder? i think every mother and every father can imagine what feelings such a message may trigger inside yourself. i thought i was falling into a deep hole. why my child? why did it have to be anna? a disease which is incurable and inherited recessively?
from one moment to the other, this diagnosis put our life upside down. i was furious, furious with life but especially furious with the doctors.
incurable: there’s nothing we can do for your daughter
medically, there’s nothing we can for your daughter, at least, that’s what they explained to us. in the course of the disease anna will get blind, deaf, she wouldn’t be able to sit, stand and eat on her own. and some day she wouldn’t be around anymore. her life expectancy would be two years at most according to the physicians‘ estimates. what was this supposed to mean? were we supposed to say goodbye to anna right now already? and what’s going to happen with nico, our unborn child in my womb. would even my little son be carrying this genetic mutation within him?
i have no idea how we survived the days and weeks to come. somehow it worked. we got psychological help, read a lot about anna’s disease and got important tips on how to handle her, as it was a tremendously difficult time for her as well. she was moaning and unsatisfied, everything she was able to do and rejoiced in – moving, activity, language – was suddenly not there anymore. create a phantasy world for her – that’s what they advised us to do, a world made of children’s songs and poems.
anna loves music and stories about the gruffalo
even today we read a lot. the gruffalo is one of anna’s great favorites. and she loves music. this may also be very loud. for example in the church. she enjoys the full sound of the organ. i remember this initial time as a time of uncertainty and fear. i often wondered, can i make it? with two kids i had no idea of whether they were healthy or not. two children who need me, my full power and attention.
i made it – we made it. just a couple of days after nico’s birth, we got this relieving message that he was completely healthy.
anna was a really proud sister, it was one of her best phases. and she made a little progress against all the doctor’s expectations. she encouraged us not just to put up with this diagnosis. on her second birthday, she got a very special present from friends. a voucher for an initial examination at naturheilzentrum bottrop. in a documentary, friends of ours learned about the facility for alternative medicine in the ruhr area and made an appointment for us there at short notice. i was more than sceptical. natural medicine, when even conventional medicine couldn’t give us any more hope? how could that be helpful? and where for heaven’s sake were we supposed to go anyway? to bottrop? never heard of it. to be honest, at that time bottrop was the end of the world for me.
at nabo, anna can recharge her batteries
the prospect to go there more than just once as of now didn’t really inspire me. i did it, though. for anna. we left at five o’clock in the morning, my mother was with us, as were the two “gift-givers”. bottrop wasn’t as bad as we thought it would be and, the arrival at nabo was great. for the first time i had the feeling that we were well received. there’s someone here who listens and who wants to help.
this help, though, looked very different from i thought it would be like. first, anna was prescribed a dietary change, no meat, no dairy products, no flour. that wasn’t going to be easy, of course. because for anna there was nothing that could beat pasta, in all sorts and colors. on the way back to landau, i eventually made a decision. we will go this way, try it. without pasta and yoghurt (fruchtzwerge). today, i can honestly say that this was the right decision. anna superbly agreed with the dietary change and meanwhile, she may almost eat anything again. except for cow’s dairy products which boost anna’s mucous congestion.
our nights, but also our life, are significantly more relaxed now
when i travel to bottrop these days, then this is not at all bad anymore. quite the opposite. you can feel it when anna’s batteries are slowly running flat. then it’s time again. for almost six years now we’ve been looking forward to being allowed to come to bottrop regularly. a special acupuncture, singing-bowls and aroma therapy, among other things, are part of our child’s treatment plan. each time, i can sense how much anna benefits from the treatment. from the very beginning she’s made a lot of small steps of progress. and after each therapy cycle, new progress is added. she is less congested, the existing mucus dissolves better. our nights are significantly more relaxed just because she is more relaxed and a lot more cheerful afterwards. also, in terms of agility a lot is going on whenever we were in bottrop.
at the beginning of the treatment, i had a dream: i was sure anna would be able to walk again after two years and that she would be fine. i guess i needed time for myself, time to admit that my child was sick and we needed help. i didn’t want to realize that for a long time. other kids need nappies, too, so why would i want the health insurance company to pay for anna’s? what do we need a sick bed or a therapy buggy for? why am i supposed to apply for a pass for severly disabled People for my daughter?
today, i can accept this help
today, i have moved on a bit. i can accept these possibilities of help. and i’m grateful that for all these things we don’t have to fight tough battles with the health insurer. i’ve heard a lot of bad things from other parents about this. all the energy which is used up can be saved for anna. and we do need this power. because the daily routine is not always easy with her. especially during the meals, we regularly fight out our battles. she can be utterly reluctant if she doesn’t want something. and fairly often she doesn’t.
the special child – not only destiny, but also a chance
at school, we were often told that it would be a lot easier with a feeding tube. it would be for the employees, anyway. but i don’t want anna to lose even more skills. there are really silly days, i have to say, there are nights we cannot sleep. but we have to get through this. and so does anna.
i know that this is a hard way i demand from my daughter. but it is also a chance. through anna i have learned a lot. i have learned to trust my gut feeling. when making decisions, i always try to see: “what does my daughter want to tell me?” what is good for her? in the beginning, i worked with her using physical therapy techniques. surely, that was quite obvious. i’m a physical therapist, after all. it didn’t do either of us very good. i wanted too much from her, was too ambitious. one day, the therapist in the nursery school approached me. “try to be more of a mother”, she advised me. and that i should leave the therapy issues with her. a smart woman. it did our relationship very good.
we haven’t been travelling to Heidelberg anymore for a while. our paediatrician and the team of the rehabilitation center (frühförderzentrum) support anna in terms of conventional medicine and physical therapy.
paediatrician joins us on our way – just be brave, for it does you really good!
the combination of conventional medicine and alternative treatment methods – just like in the bottrop healthcare facility – is the right thing for anna. this is not just gut feeling. our child clearly indicates this , too. I would really like to have a life with two lively and healthy children. i wouldn’t change it for anything, though. through anna, i have changed my attitude. i’m significantly more relaxed concerning things which puzzle my patients, for example. there are so many unimportant things. we deal with things totally worthless for our life. i wonder why? every day anna shows me what really matters: not to be pressed into every rat race, but to seize the moment and to have hope.
a start has been made. even though there are moments when i just can sit there and cry time and again, we will not cease to fight, for he who does not fight has already lost. and the fight is all worth it – for anna and for our whole family.
i am grateful that i have mummy
i am grateful. for the support we get. especially my mother is always there, no matter what time it is, no matter what has to be done. it’s great that we all live under the same roof and that we can live family as such. if someone had asked about that 20 years ago, i’d have contemptuously declined. during my puberty, my mother and me loathed each other. as soon as i was 18, and this was quite clear to me, i‘d be gone.
it’s good, though that i’m still around. that i, we have mummy and can tackle it together, that there are many shoulders we can put our burden on. that makes it a lot easier. otherwise, it wouldn’t be possible for me to work in my practice two afternoons a week.
if i could make one wish, then it would be, of course, that anna makes further progress in the future. at nabo (short for: naturheilzentrum bottrop), the therapists often say she could be way ahead. and i also see families bearing a similar destiny when all of a sudden something is happening. i’m always very delightful when i get this news. there is no envy, as a mother you simply rejoice in others’ happiness. but can you imagine how much i would like to pass on great news like that? so, anna please keep on fighting.
by the way, i’d really appreciate it if something could change in our society. we surely attract other People’s attention when we are on the way with anna in her therapy buggy. feel free to have a look, no problem, we are different. it would be nice, though, if someone asked once in a while, instead of just watching. or if someone reacted like this woman at the swimming pool. she had been watching anna and me for a long time. she didn’t address me, didn’t ask what was wrong with anna. when she left she just stroked my arm. and that did me really good.
don’t talk about anna, but talk with her
it would be great if more Humans could react like that, to an obvious situation, don’t you think? anna has a book and there is a lot in it about herself, what happened at school, what makes her happy and what bothered her. it is an important part for me to take part in my daughter’s life outside our home because unlike her little brother, she isn’t able to tell me about her day. there is one very important sentence in anna’s book, one which concerns all of us: talk with me, not about me.
as a mother of a disabled child, i would be happy if we could handle this a little better in the future. will you join us?
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