Milly’s Story

I was seized by panic as the dreaded D word (Disability) came closer. Could I love such a child at all? I did not dare to look at Milly any more in case I would discover something “disabled” about her. And would I be able to cope with a life with a disabled child? Disabled, no, that could not be allowed to happen! Why Milly? Why us? We had done nothing wrong. We had never smoked, never taken drugs, never drunk, never taken any medication. We had made a conscious effort and taken care to have a healthy lifestyle. And this was the reward now? Then again why not us? Are we so special that our lives had to be spared from such fate? Which child deserves such a severe illness and/or disability? None.

Nevertheless, I struggled with life! In the evenings I was scared when falling asleep and woke up in panic and filled with terror in the mornings. It was a never-ending nightmare and I was in the middle of it. Was Milly mentally disabled? – that was my biggest fear. The spectre of physical disability had long stopped haunting me. My greatest dream had always been to develop a very close relationship with my Milly, not just being her mummy, but also her best friend, knowing her needs, giving her orientation and explaining the world to her. And now she would not be able to understand anything, to communicate with me or tell me about her worries. This idea was terrifying. And Markus? He would never sit in the garden with her in the evenings and explain to her about the stars and the mysteries of the Cosmos. Of course, he could explain everything to her, but she would not understand. However, I did not want to talk to Markus about my worries. He is a scientist and very rational. I knew that he would tell me exactly what he thought. And I still could not bear the D-word. I started to scrutinize everything. Was I a bad person? Was I not worthy of having a healthy child? Had I done something wrong? Yes, that had to be it! I had certainly overlooked something. Were Markus and I meant for each other at all? My whole life was in turmoil and I could not find any comfort.

I still remember a dream I had during this stressful time. In this dream I saw Milly as a little child of 4 to 5 years. She was jumping around, dancing and singing. It was so real and, full of relief, I thought: she is healthy, she is healthy! My whole body was filled with a perfect sensation of complete happiness, which I had never felt in my whole life. Then I woke up, real tears of joy were running down my face, but nothing was real. Just a dream – I was so disappointed! But not for long, as for a little moment my Milly had been healthy and the feeling, that I had had during my dream continued to have an effect for a little while and sustained me. Even years later the dream continued to accompany me. I so much wanted to see my Milly being healthy just once. Just for one week, one day, one hour! I would have given everything for that!

I looked for distraction, did sports again, however, there was no let-up for me. At the beginning of the year I simply found myself crying. I knew then that it was time for professional help. I quickly found a psychotherapist. My crying attacks did in fact disappear once I decided on therapy, but still I needed to talk to the therapist. However, she did not help me. She always wanted to convince me that Milly was not suffering from Rett’s Syndrome. But that was not really my problem. It was not about the Rett’s Syndrome any more. I was aware that Milly could have some genetic defect of which there are hundreds, thousands. I read up about them. She must have something.

2014 was one of the most difficult years. Her developmental delay turned into a developmental disorder. I read that this could lead to permanent disabilities. The experts were of no great help, either. The D-word was never mentioned. Still I was anxious when the telephone rang. It could have been a doctor with some suspected disease diagnosis once again. I was afraid to open the letter-box in case I found a doctor’s letter with medical terms, which I did not want to know or what they would mean for us, Milly and our life.

In May, earlier than planned, Milly started going to the “Pusteblume”. We were able to go there and the supervisor, Mrs Schenk, proudly showed us around. I could have cried when I saw all the strange equipment in the rooms and corridors. I did not want to imagine the poor children forced to use these contraptions. Today I have to laugh when I think of that moment. The “Pusteblume” has turned out to be the best thing that could have happened to us and Milly. A few days after Milly’s entry into this new child care crèche she could suddenly sit upright. First very tentatively, but by and by it became better and with more confidence. She also started to support her own weight and with help could walk a few steps. Once again there was hope! However, our paediatrician did not understand why the Social Paediatric Centre did not spring into action. He had a serious argument with the doctor treating Milly and succeeded in arranging an appointment for an MRI.

This was the beginning of a never-ending examination marathon, the project called root cause analysis. The first MRI did not work, Milly kept waking up. A few weeks later, a second attempt was made. Everything went well and we waited for results. I was shaking inside: hopefully nothing wrong with her brain! After some hours the ward doctor entered the room. All images still had to be analysed in detail. It sounded contradictory, as if the MRI had not shown anything. I felt abandoned and I was so tense that I could not and did not want to wait for a first assessment any longer. I forced myself and asked directly whether something could have been found. He said: yes, a definite myelination delay. They had really found something! I was shocked and lost all hope. The little light at the end of the tunnel turned out to be an incoming train.

Suddenly, everything went very quickly. Shortly afterwards we had an appointment for an EEG. A so-called sleep deprivation EEG was carried out. For this Milly had to be put to bed very late at night, was woken up in the middle of the night and had to be kept awake for hours until the beginning of the EEG. The background to this very strenuous procedure was that seizures can best be measured during the phase of falling asleep and waking up. This first EEG showed that she had epilepsy. These epileptic seizures in the form of absences lasting several minutes were the reason for Milly’s “dreamy phases”. As she could have up to one hundred seizures per day, a cognitive development was not possible at all. The brain was so overstrained that it could not grasp anything. Her epilepsy was presumably caused by the incomplete structure of the myelin, the muscular hypotonia by the epilepsy. But what was the reason for the missing myelin, the white substance, that encloses the nerve fibres and therefore guarantees the redirection of the neural stimuli?

The EEG and MRI had been strenuous enough, but now everything really started. For October an in-patient stay of nearly one week was planned to find out the underlying disease. Moreover, Keppra (active substance: Levetiracetam) a first anticonvulsant medication was prescribed. The dosage was gradually increased, its effectiveness had to be checked continuously by means of EEG. Now my hope was the medication. Perhaps there would also be a cognitive improvement. As a side effect Milly had to struggle with obstipation and especially with sleeping disorders throughout the night. She was awake for hours during the night and I was at my wit’s end. I decided to take another two years of parental leave as from October. At that time, we did not know how many more hospital stays were still to come and I wanted to wait until the whole situation returned to normal.

I needed a change of location and in autumn 2014 I was granted a mother-child respite treatment in Dangast. There the other mothers’ children ran around chirpily and I asked myself why these mothers needed this special treatment. In addition to that I also still had the daily stress. Once again, I proved myself incapable of making new contacts, as I felt misunderstood and isolated. I had no “real” child and did not feel as a “real” woman and mother, but for a long time I felt childless although I had a child. As there was no obvious reason for Milly’s disease, I was permanently trying to justify myself. When being asked whether I had a child, I answered with “yes” and had the feeling that I had to add something. In Dangast I could hardly bear the sight of the other children jumping around.

The rehabilitation was very strenuous in the beginning, however, I liked the treatments. Just the fact that I had to go to the meetings about stress disturbed me. Why was I supposed to go there? I did not suffer from stress and managed to cope with everyday life. For me it was a pure waste of time. But there was no way out, I had to endure the presentations of the supervisor and psychotherapist Mrs Hannah Janssen. Fortunately, she turned out to be a brilliant speaker. She succeeded in talking on a level that appealed to everybody and with a few simple sentences she managed to initiate a decisive emotional turning point in my life. Mrs Janssen spoke off the cuff very vividly. I remember how she described a kind of stress spiral in one of her first presentations. She enumerated the everyday tasks of the struggling working housewife and mother with ever-increasing speed. She then suddenly stopped her enumeration and said to her audience: And now, imagine, that in this situation something happens, you suffer a stroke of fate; your husband dies, your child becomes seriously ill …. And you are already completely caught up in your everyday worries and not capable of reacting to this situation … But I did not hear that any more. “Your child seriously ill?” … “A blow of fate?” … Yes but …. This is what has happened to me, that is me who she is talking about. I had suffered a stroke of fate! I was overwhelmed. We had seen so many doctors but I had to go to a health resort first in order to learn that I had suffered a blow of fate. This meant I did not just feel subjectively that something was completely wrong in our lives. This was also the case objectively, but nobody had ever expressed it that clearly!

I listened to many more of her presentations and totally re-evaluated my situation. I now knew where I stood. People had always only tried to pacify us. It was not normal to see so many doctors, therapists, consultants, to be in hospitals and to undergo extensive examinations. There were so many mothers with children in our social environment. How would they have felt if their child had simply not developed? Nobody ever said how difficult this must be for us. For sure, they were kind, perhaps they just did not know what to say or were insecure themselves, perhaps they just did not want to impose their feelings on us. The permanent anxiety and uncertainty alternating with feelings of hope did us no good. Markus and I had suffered a disaster, our child is seriously ill. She must be because she is miles away from being healthy. That was now clear to me and it was so important to be able to express this without being branded as an overreacting mother.

Mrs Janssen also talked about acceptance. It was difficult to accept something when I did not know what it was. I found myself in a dilemma: if I accepted Milly as disabled it would seem to me as if I had given up on her. But if I continued to hope for a healthy development I would perhaps lose myself in hopeless wishful thinking, not accept Milly as she was and not find peace of mind. I understood then that I did not only have to accept the health restrictions of my child but also the uncertainty connected with them in order to find my inner peace. Acceptance did not mean approval, Mrs Janssen continued. That was also very important for me! From that moment on I began painfully to come to terms with the idea that Milly is disabled and most probably will never be healthy.

In October 2014 we had the one-week hospital stay. A lot of examinations were carried out: ocular fundus, genetic analyses, blood tests, urine samples, ultrasound scans, lumbar puncture … nothing was found and the hospital stay nearly finished us off. In the hospital ward a new medication, Petnidan (substance: Ethosuximide) was given in increasing doses. Suddenly Milly began to be attentive and active. Also, in the “Pusteblume” everybody was enthusiastic, as she participated and perceived much more. Also after the first dose of Keppra I noticed in Dangast, that I had to clear the table as Milly was grasping at everything. Once again, I hoped that she would finally start to develop – but this time within her realms of possibility. Slowly but surely I was ruling out a total recovery.

During our next appointment at the Social Paediatric Centre we were informed about our social rights.  I did not need much help. From then on, I developed to be Milly’s care and case manager. I applied for a disabled person’s id for her. On this she was classified as having degree of disability of 100% with a coded list of her specific problems: G (walking impediment), aG (exceptional walking impediment), H (helpless) and B (accompanying person required). She was also granted Care Level 1 recognising her limited daily living skills. From then on, my little darling was officially to be severely disabled and permanently in need of nursing case. Today, she has got care level 5, the highest care level.

I had accepted the situation. In fact, Milly was only two and a half years old. But I did not want to give in to my dreams, which would never come true anyway. We had hoped for such a long time and I wanted to start living again at last and not endlessly be on hold.

Actually, two more appointments contributed to this attitude. We went to see another physiotherapist for a second opinion. She was the first one to express clearly that we had to face up to Milly being mentally disabled. That was devastating, but honest. In Ludwigshafen we consulted a neuropaediatrician who performed an EEG and who we asked to give us some advice. He examined Milly very carefully but could not help us. He said that children can acquire all skills up to the age of five; afterwards it becomes difficult. Thus, there was still some time left for Milly, but as it appeared then, Milly would not catch up, not even rudimentarily, in the time up to her fifth birthday. The delay in development was simply too big. However, there were phases from time to time, during which I felt optimistic. I had especially high hopes for the effects of the medications.

I did not want to celebrate Christmas and the New Year any more. The years went by, but our Milly came to a standstill which was cruel for me and hardly bearable. Our child just did not develop. She ought to be able to do this or that … I was tired of hearing this. Today I am strong enough to say: Milly does not have to do anything!

During that time which was very depressing for me Markus met a former fellow student whose son is a little bit younger than Milly. Markus told her about our situation. She said that in comparison that was nothing at all. Her son had been diagnosed with cancer and was having to undergo the therapy procedure to combat the disease. As much as I could understand the parents’ anxiety deep down I was furious with this mother! Not only was the disease of her child known, there were even therapy options and, furthermore, a full recovery was possible. Today he is cured. Children like Milly do not even have this chance. Milly has and will have to endure lots of distressing examinations. The number of examinations, therapies, operations, MRIs, EEGs etc. she went through at the age of just two years, is sufficient for a lifetime. Her fate was in no way better. After endless examinations and genetic analyses the underlying disease had not been found and it was not predictable whether we would ever know what Milly’s problem was. This uncertainty tortured me. I continued to talk myself into believing that I had done something wrong, that I had not paid attention to something. Better to have a disease with a name. Not knowing who is your opponent is gruelling. And somehow I had the inner certainty that we had to deal with a severe disease and not “just” a disability. However, the disease without a name was no longer going to dominate and determine our lives. I was so tired of waiting and wanted to make peace with the situation. From autumn 2014 I took parental leave again and finally just wanted to enjoy my child.