When I became a mother, I was quite old: my fortieth birthday was a washout because of my really big twin belly. Maybe there were candles, cake, and a few friends—certainly nothing more. The mere fact that I became a mother of twins after forty years of being solely responsible for myself would certainly have been a challenge.
But things got even worse: My twin son is disabled. My twin daughter is a so-called "normal" baby. They were born via emergency C-section. Both had to go to the intensive care unit. Our son, whom I call "Hibbelmors" (a German term for a fidgety child) on my blog, had to be fed artificially.
Request help early
When we were discharged from the hospital after ten days, we had spoken with doctors about our son's anomalies and with the hospital psychologist about how we were coping. The human geneticist had examined our son and explained that he most likely had a genetic defect. Unfortunately, the social services department was not staffed at that time.
So we went home with just the note "...follow-up appointment with the pediatrician." My partner and I didn't even think to ask for anything more. But we should have.
We took everything into our own hands and managed to do it step by step. However, we would have been much better off if we had known from the start that, for example, the Social Pediatric Institute (SPI), also called the Children's Center, existed in Bremen. We then went there with Hibbelmors and had several specialists there who were able to help us.
A center for a thousand questions
We were able to discuss many issues here that overwhelmed us. The corresponding therapies were carried out directly at the children's center at Friedrich-Karl-Straße 55, or we were referred to the specialists at the Prof. Hess Children's Hospital.
It was about, for example…
- the drinking that Hibbelmors couldn't manage
- feeding via nasogastric tube (and later via PEG tube)
- the unstable joints of the jittery
- the missing development steps
- his frequent vomiting, which accompanied us throughout the first few years
- his bad eyesight
- the burden on us parents
- and much more.
Later, we no longer needed the SPZ (Specialized Pediatric Center). We found our own doctors and therapists. But as a first point of contact, such a center, which has experience with children with disabilities and their parents, is invaluable.
Learn from others: Testimonials help
In the early days as a caregiver, I also tried to find information online about everything I could. One forum in particular helped me: Rehakids – The Forum for Special Needs Children. There you can find everything related to caregiving, from countless threads to used special clothing.
Back then, I was desperately searching for personal experiences from mothers caring for children. Having a disabled child often makes you feel different from other mothers, and I sometimes felt alone and unhappy because of it.
It's a process of growing into the role, and I've been looking for role models. That's precisely why I now also publish stories from our inclusive family life. Older posts can be found on the blog Hibbelmors – und die ganz Alltags Inklusion (Hibbelmors – and everyday inclusion), and newer insights are available on the Instagram channel hibbelmors_inklusive.
Not alone: Cultivate exchange
I can absolutely recommend the Sunday brunch organized by Lebenshilfe (a German organization supporting people with disabilities). Parents of children with disabilities meet there a few times a year to exchange experiences and tips. Incidentally, the SPZ (a social pediatric center) also put us in touch with two other parents who care for children with disabilities. We gratefully accepted this offer. We still meet up today, although not often.
Life with a disabled child will always be a challenge, but it will also become normal. It will become normal more quickly if you seek help and arrange for occasional respite. Something I absolutely must add: Looking back, I've learned a lot through Hibbelmors. For example, how important it is to be present in the here and now.
And how wonderful cuddling is. And what unconditional love means. And how wonderful it is to experience joy – even in everyday things. Believe me; everyone in this situation will not only experience uncertainty, but also phases that bring contentment, pride, and happiness.
Helpful links and resources
- Social Pediatric Institute (SPI) – Children's Center
for early detection, diagnosis and treatment of children and adolescents who exhibit abnormalities in physical, mental, emotional and social development - REHAkids – The Forum for Special Needs Children:
Online forum for parents of children with disabilities - hibbelmors_inklusive
An Instagram blog about inclusive family life in the city of Bremen - Sunday brunch at the early intervention center of Lebenshilfe:
Two to three times a year, families with children meet there for a social brunch. - Balu Children's Intensive Care Service
: The staff provide intensive medical and nursing care for children and take great care of their everyday needs.
Nicole Wrede is a freelance copywriter, presenter, and coach from Bremen. She is the mother of two very different twins and blogs about her everyday life, including family life with a level 4 care dependency. Her mission: to not hide the challenges of living together in a family that is anything but normal, but rather to make it a topic of conversation.