2013 – Worries and Hope
It must have been around Easter 2013 when Milly suddenly began to turn on one side. We were happy and hopeful. But this was ruined time and again by the many appointments with doctors and therapists. I regularly went to physiotherapy with Milly. After several weeks, I asked the therapist whether the neck blockage could still be responsible for the retarded motor development. She said no, it can’t be. But she didn’t say what she suspected either. I did not dare to ask myself, was afraid of the answer. Because meanwhile it was unmistakable that Milly did not react cognitively like children at her age. Making first sounds, pointing at something, imitating something: Nothing at all. The therapist repeatedly said that the children in the Pusteblume (lit. dandelion), an integrative kindergarten in Heidelberg with many severely handicapped children, also showed similar behaviour. The children in the Pusteblume … I didn’t want to hear or know anything about them. They had nothing at all to do with my child.
In August 2013 I started working again. In the morning I worked and picked Milly up from the nursery at 2 pm. She felt comfortable there, the educators of this private institution were also very loving. But nevertheless she was soon “the other child”. Markus and I had of course reported on Milly’s development delay when we registered. That wasn’t a problem at first. Now I picked her up in the afternoon and saw her lying in the corner. Four educators sat next to her and chatted with each other, the other children played and my little one just laid around. They couldn’t and didn’t want to do anything with her. That hurt me, especially as my gauntlet didn’t want to end. Because I compared Milly with the other children, some of whom were even younger. I was always happy when I was home with her again. At some point her educator approached me about the situation. We have to talk about it – undertone: she is very cumbersome and not bearable anymore. I drove home deeply sad and bitterly disappointed and was afraid that they didn’t want Milly anymore. Who would take her now? And how could I reconcile that with the work? Markus calmed me down and temporarily a young curative teacher wanted to take care of Milly. At the same time, however, it was supposed to be investigated whether an integration aid could be paid for Milly. For this purpose, an expert from the Mannheim State School Board had to come to the nursery.
We now had a round table in the institution and I felt like I was in front of a tribunal. In the end my feeling had not deceived me. They wanted to get rid of Milly. Without talking to us, the manger had made contact with the Pusteblume behind our backs. For autumn 2014 Milly could get a place there. Last stop: Pusteblume! The time had come and my Milly had to go there. I felt humiliated and deceived. But I didn’t want to fight for the nursery place. My Milly wasn’t worth a try to them, so she shouldn’t go to this facility anymore, whose great milestones she couldn’t reach and the super Toy Talk she couldn’t speak.
But the reviewer was a very likeable person and gave me hope that the new facility would be right for Milly. Milly would now also be entitled to a bus transport. That would at least save me the everyday gauntlet run in front of the parents of the healthy children.
I enjoyed working in a Heidelberg job centre. Except for the one day towards the end of the year. Milly’s experienced paediatrician had already arranged for a referral to the Heidelberg Social Paediatric Centre (SPZ) at an early stage. We waited months for an appointment. Finally it was time, but the young doctor there saw no need for action and did not expect anything from EEG and MRI. We were supposed to come back in six months. I was relieved, then it could not be so bad. But Milly’s paediatrician didn’t understand the decision. The development gap was serious, he wanted it clarified. In the meantime we were back with Milly for one of these mandatory examinations. While she was being examined, the paediatrician saw Milly suddenly stop and rub her hands together. She did that every now and then when she was so “dreamy” and – like in the car back then – didn’t react to anything.
The paediatrician must have phoned Markus again. I had just finished my work when Markus called. He talked hesitantly and didn’t know exactly how to get it across to me: the doctor had a hunch. He didn’t want to tell me what, I would only worry. But now there was no turning back, I was all agitated. I insisted on being told and he said: Milly’s behaviour reminds the paediatrician of a child he treated in his practice many years ago. This child had Rett syndrome. I immediately looked it up on the internet and almost collapsed. Severe mental and physical disability. Symptoms were listed, some were true, others not at all. I was paralysed, dragged myself to the nursery, fetched Milly and made it back home. Then I cried. It was just a guess, but it didn’t matter. We were told for the first time what we had feared for so long. But I didn’t want to deal with it. From now on my emotional world went roller coaster. Once at the top I hoped again, because there were many things that contradicted the Rett syndrome. But no, she had to have something and I came down again, because there were some reasons for it. Another year ended and I didn’t want to know what the next one would bring.