Milly’s Story

The next two years were to be less hectic. I was at home and dealt with all the red tape. I also dared to register with www.rehakids.de, a forum for parents with disabled children. In the beginning I just read what was on offer, but then I registered Milly and me. I should have done that a lot earlier. Finally, I met people with exactly the same experiences. Until then I had had the feeling that I was the only one with a severely disabled child. It felt so good knowing that I was not alone with my worries.

Through the nursery school we met some amazing new families. I came out of my isolation and tried to see some purpose in my life.  I realized that I was starting to say goodbye to a lot of wishes and hopes. At this point a long and painful grieving process began.  But that was also something I learned from the forum. Grief does not only exist when somebody dies. I was also allowed to mourn for a child I would never have, for a lot of things she would never be able to do: run races with me, build a sandcastle on a Baltic Sea beach and splash around in the water, discuss with me, go to school by bike, train or study for a career, marry, have children.

With this acceptance life became easier. I stopped comparing Milly with other children. My child is just not healthy, fair enough! I could use the word “disabled” without any difficulty and had to smile inwardly, when my little one was being spoken of as a “special child”. I find this term ridiculous. Are not all children special children?

In the beginning I had caught myself calling Milly “ill” instead of “disabled”. I had always been convinced that there was a severe disease that prevented my Milly from becoming healthy. Still, it took me some months before I could characterize her state as “severely disabled” without hesitation. Why was this? I reflected upon this a lot and I think that both terms trigger something in the feelings and the attitudes of the listener. I could compare it with AIDS and cancer. For example, AIDS normally has a negative connotation as the infection often is the result of a risky lifestyle and thus a certain complicity is assumed. Cancer, however, is predominantly considered as a tragic stroke of fate, on which you do not have any influence. In addition to that, cancer patients are usually looked up to and perceived more positively.

The word “disability”, especially when it concerns a child, often subliminally involves a question of guilt. Was the mother-to-be too old or had she consumed alcohol? If not, then no examinations had been carried out before the birth. And if yes, then the child had been born nevertheless. Hence, her own fault, and everyone else had to bear the costs for this! A disease occurs, nobody ever chooses it. This is nonsense, of course! Most disabilities are based on illnesses or accidents. In Dangast the first question of my dining table neighbour was whether or not anything had been noticed before the birth. Undertone: possibly it might have been avoided.  And even if so, nobody can say whether a defect will restrict the development of the child at all. Unfortunately, prenatal diagnostics is totally overestimated. The first thing to learn in such a life situation like ours is to face the unpredictability of life with humility.

And to deal with the social administrative machinery. In those first two years I was mainly busy with applications for medical products. And whenever I thought that I had finally got everything, something new came up. The spatial situation also had to be reconsidered. In the meantime, we could no longer carry Milly upstairs to the bathroom to shower her there. For nearly a year we looked for a barrier-free flat in Heidelberg. Then I finally found one and in mid-December we moved in. It was a newly built and barrier-free ground floor flat very close to our nursery school. In 2016 we were busy with furnishing our new home. We had a beautiful new home and we all felt really comfortable in it. We had a little garden and a patio. I was motivated and at last I enjoyed doing something good for our little family again. Since Milly’s birth everything had seemed so pointless to me. I was reconciled with life and could enjoy everyday things again. And when it was Milly’s fourth birthday in July 2016 we had a really big and colourful birthday party with lots of guests.

Something else also changed: I eventually noticed that my intense desire to see Milly healthy just once had disappeared. Why? It would not have been my Milly, but a completely different child. Milly is perfect the way she is. Today I would be terrified if a healthy Milly suddenly, as if by magic, were to be standing in front of me.

Of course, during those two years further medical examinations were carried out. Our little hero has been operated on her ears every year since 2014. Twice they inserted a vent tube to deal with the discharge from  her ears, the last one being a long-term vent tube at the end of May 2017. In addition to that she got a hearing aid as she suffers from a loss of hearing in the high-frequency range to her left ear. All this was accompanied by a lot of preliminary examinations and tests which were often very stressful. Doctor’s surgeries and hospitals, unfortunately, are not prepared for the needs of severely multiple disabled children.

Furthermore, a lot of genetic examinations were carried out, all of them not revealing anything. In April 2016 a final attempt was made to find out the underlying disease with the help of a very elaborate and expensive panel analysis. For this purpose, hundreds of genes associated with Milly’s restrictions were examined. At the end of the year I received a phone call from the doctor treating Milly at the social paediatric centre. Something had been found. The defect was very rare and she wanted to collect some more information first. On 16 January 2017 we had an appointment at the institute for human genetics. I indifferently noted down the date and went back to my daily routine; there was enough to do before Christmas. I did not have any hope any more, probably this was just another shot in the dark, which could mean something, but nothing definite would be known. This time I was to be wrong.