Dear ones, there were already abnormalities during pregnancy, and after Mieke was born it turned out that she was affected by the rare syndrome MMiHS. The abbreviation stands for megacystis microcolon intestinal hypoperistalsis syndrome – in layman’s terms: a bladder that is too large, a colon that is too small, and reduced or absent peristalsis of the bowel – in other words, bowel movements are reduced or absent and the bowel is virtually non-functional. You probably already know the family.
In this blog post, she wished for a lot more time with her Mieke. She wanted to be able to celebrate her first birthday together. And it worked out! We have the honour of showing some photos from this special day in our post today. Shortly afterwards, they had to say goodbye to each other. And mum Anne had the strength to show us a letter to her deceased daughter 72 days after Mieke’s death.
Today we are thinking of her and Mieke’s dad and Mieke’s brother Moritz, because Mieke would have been two years old today. It is important to her mum Anne that she is not forgotten. That her birthday should be colourful and loud. And she is happy about every congratulations, so here from us again and from the bottom of our hearts: Happy happy birthday, dear Mieke. The sunshine you brought into our lives will never be forgotten.
Dear Anne, your Mieke was born two years ago today, how do you remember this day of birth?
I actually have very mixed feelings. On the one hand, I remember feeling very calm inside. Mieke was born at 35+6 – so in purely mathematical terms she was still premature – but I had such a basic trust that it would be right. That there was a reason that she was now on her way on her own and I was really happy about that.
Four days later, the prenatal diagnostician who accompanied us would probably have decided in her favour. It was always rumoured that she would have to be taken earlier. Although I have to say that I initially thought it was a false alarm, as the contractions came very regularly and at short intervals, but were so „easy“ to bear.
The birth itself was everything you would want it to be. We had a great midwife to accompany us. We were so incredibly happy. There was our perfect little girl, our Mieke. Yes, and then after the first cuddles and breastfeeding, the reminder: our daughter is ill and needs further treatment, even if you couldn’t tell by looking at her.
Although we were informed and every step was explained to us, the feeling was that she had been taken away from us. She had to spend her first hours in the world without us. It still feels so wrong. Even more wrong with Mieke’s death. We, or at least one of us, should have been with her. Always.
You were still able to celebrate together with Mieke last year, that’s what you wanted, what feelings did you have in your stomach that day?
On the one hand, there was joy. Mieke had made it – contrary to the doctors‘ predictions, she had survived the night. We were allowed to take her home from hospital. And although we felt cautiously optimistic, as the bleeding had surprisingly largely stopped, it became clear at every turn, in every conversation with the doctors and the counsellor who visited us, that we were taking Mieke home to die.
When Mieke and I were escorted out to the car by the doctors, everyone must have had a lump in their throat. It was clear that we probably wouldn’t be coming back.
At home at last, we were briefly able to rejoice. But then we quickly had to put our feelings aside and get on with our work. We were given antibiotics, instructed in the new medication plan by the palliative care team and there was so much to organise. There was no room to celebrate. No get-togethers as one would wish. The birthday moments were brief. But they were there and that makes us incredibly happy.
We wanted Mieke to spend time with us and be with us. We quickly realised that our wish didn’t quite match Mieke’s need for peace and quiet and the amount of care she required. She was at home with us, but I didn’t feel like I was with her. I was needed by her big brother and all the organisational stuff.
My husband took over the day-to-day care with the carer. We somehow managed to function. There wasn’t much room for emotions. What I do remember, however, was the tender wish and belief in a miracle. After all, she had still made it home. Maybe we would make it to the longed-for and at the same time dreaded phone call. Maybe there was still a tiny hope of life after all.
Shortly afterwards, you had to say goodbye to Mieke. You not only accompanied her into life, but also out of life, were there any emotional parallels?
Infinite love, but this time paired with great sadness. Perhaps Mieke and I were able to make up for the cuddling on her last day, which we missed on her first days of life. My husband and I knew it was time to say goodbye. We felt it, even though the medical prognosis was different. Just like on the day she was born, there was a calmness in me. I wanted Mieke to feel that it was okay. That she could walk.
How are you celebrating her birthday today?
I’m going to bake a rainbow cake, just like I did on the day of her farewell party. We’ll go to the cemetery and bring her presents. We will release balloons and blow bubbles and be together. We look forward to seeing everyone who accompanied Mieke and us. I’m looking forward to sharing fond memories and eating cake. I’m looking forward to a sad and beautiful day.
And yes, I’m really looking forward to her birthday. And at the same time, I’m scared that it will be forgotten. Talking to other orphaned parents, I’ve heard exactly that so many times. I don’t even think that the birthday of other people’s star children is forgotten, it is hushed up – perhaps for supposedly well-intentioned reasons.
But it’s like so often: „Well meant is not well done.“ As if parents would forget their child’s birthday if no one else talked about it. So you’re not opening up any wounds – they’re already there anyway.
How have you made it this far this year, was it like a cycle of sometimes better, sometimes worse?
I just don’t know. You keep going. Somehow. Sometimes better, sometimes worse. I still have a lot of work to do. Everyday life sometimes leaves no room for it, because big brother wants and needs to be accompanied. But it will happen. Slowly and in small steps, but I’m making progress.
And that doesn’t mean that the grief is getting less. On the contrary. But I’m learning to integrate the grief. To live with it. It will probably be a while before I have arrived in a socially recognised „normal“ life.
I’m really struggling to shake off the pressure I’ve put on myself. Self-imposed, because so far my employer/supervisor has been more than understanding and nothing has come from my environment in that direction. However, I know differently from talking to other orphaned mums. So I’m really lucky that I’ve been given the time I need.
You said the other day that you don’t really know how you’re feeling right now. Because you feel so much or because everything is so numb?
It’s just a rollercoaster. So many feelings at the same time. So much to process. So many memories. Good and traumatising ones. And so little time to really devote to them. No space to really feel these feelings.
