You can either break down, or go “Alright, my legs stopped working, but the rest is fine”.

Adéla Boumová

Adéla hails from Český Těšín, though as a child, she also lived in Karlovy Vary, Ostrov nad Ohří or Kroměříž. “My parents got divorced when I was two years old. My mom and I moved around a lot. She found someone and got pregnant with my younger brother, but the relationship didn’t last. Dad had been visiting us all throughout, and eventually, my mom and dad got back together. They have stayed together ever since,” Adéla notes.

A few short meters in half an hour

Adéla transferred from one elementary school to another three times. She went to secondary school in Ostrava, staying at a dormitory. Between her third and fourth years of study, she became paralyzed. “I caught a nasty flu while doing a language course in Germany. I was feeling really terrible, but the course was already paid and I didn’t want to quit,” she says. Back at home, she was told by a doctor that the tingling sensation in her legs was nothing out of the ordinary and it would pass. Subsequently, while on vacation with her parents, she started having serious difficulty walking, kept stumbling and experienced numbness and loss of sensation in her legs. “I spent three weeks in hospital. The doctors released me because they had no idea what to do with me. I remember it took me half an hour just to walk to my car.”

Her condition was progressively deteriorating until in September she was no longer able to stand up. Nevertheless, she was determined to return to school. “Home felt uneasy. I didn’t know what the future would bring, but I didn’t want to think about it. I was adamant that I had to pass the ‘maturita’ (baccalaureate/certificate of secondary education) exam at all costs – I knew I would be hopeless without a qualification, no matter what was in store for me.”

Still without a diagnosis today

The year was 2008. Still without a diagnosis to this day, Adéla has yet to learn what exactly is wrong with her. She remarks, “When something like that happens, you have two options: either you break down and give up on life completely, or you tell yourself, ‘My legs may have stopped working, but the rest is fine.’ And you act accordingly. I tried to be constructive about it. I was sure I had to go to university in order to have a good chance of finding a sedentary job.” She enrolled in special needs pedagogy in Brno. “That’s where I met my current husband. I got my bachelor’s degree and in the first year of postgraduate studies, I found out I was pregnant. Consequently, I dropped out of the master’s program,” says Adéla, smiling.

Cesarean section

“My doctor is really great. He was never bothered by my being a wheelchair user, all he cared about was the health of me and my baby. Due to complications in the 28th week, my pregnancy was classified as high-risk. The routine checks were more frequent but other than that, everything went fine,” she reminisces. According to plan, her son Honzík (Johnny) was born by cesarean section. “I have suffered from severe short-sightedness since birth, so vaginal delivery was not recommended to me. They said they could not guarantee I would not lose my vision. That made me a little sad, as I was wishing for a natural childbirth.”

The first few weeks were tough

It turned out that Adéla had a damaged placenta. “I was told that the complications I suffered from could be linked to my making every move with my hands and abdomen. Putting a bigger strain on the abdomen is a major contributing factor.” Despite the complications and the low birth weight, her son was born perfectly healthy.

For the three weeks following the return home from the maternity ward, the Bouma family were joined by Adéla’s mother. “My son Honza was so tiny I had no idea how to turn him around. I was occupied with things that no healthy mother has to deal with: how do I hold the baby and carry it when I also need my hands to move around? The documentary Moji milovaní (My Loved Ones), starring Simona Kolaříková (who is also a client of ParaCENTER Fenix), helped: in order to move around, Simona was using a so-called nursing/breast feeding pillow. I bought one myself and strapped it to my body so that Honzík could not fall out. Another conundrum was bathing: our bathroom has a shower tray and most baby bathtubs are low. By chance, I came upon the Blooming Bath, a flower-shaped bathtub cushion. It was a great discovery which solved the problem instantly. Until Honzík was big enough for the shower, we bathed him in the flower,” says Adéla with a laugh.

Baby carriage, scarves. And another baby

“My dad is very skillful, and he fitted my baby carriage with these handles, so I could strap it to my wheelchair. However, Honzík just hated the baby carriage – that’s how I got into babywearing. I ended up buying about five baby carrier scarves.” When her son grew up a bit, she was looking to get back to work and even found a job, but another pregnancy intervened. “After Honzík, I had a miscarriage, after which the doctors told me that I would most probably not become pregnant again. Then, lo and behold, a girl was conceived,” Adéla remarks laughingly. The Bouma family grew to include a baby daughter named Viktorie.

Mom and traveler

Nowadays, Adéla’s life entails juggling her kids, husband and work at ParaCENTER Fenix where she is a consultant on re-entry to the labor market. While this leaves precious little time for her hobbies, she does make time for traveling, her favorite. “We have always loved travels and we’ve stuck with it. Even though having two kids makes everything much harder, the memories and experiences make it all worthwhile,” she notes. In the foreseeable future, they are even planning on visiting Florida.

Future plans

If you ask Adéla where she sees herself in a few years’ time, she jokingly replies that her main ambition is to raise two well-brought-up kids. Kids are also at the forefront of her intention to start her own association. “While I was expecting my son, it came as a surprise to me that there were very few resources available to parents with disabilities that would provide useful tips and advice. The nearest organization representing such parents is located in Great Britain. My dream is to build a platform for parents with disabilities to meet and exchange information. I would like to include them all: parents with physical, visual, and hearing impairments, and reduced mobility. This is an area in which it makes sense to provide counseling to all of them,” Adéla concludes.

Support people with acquired spinal cord injuries in returning to life. Contribute to the activities and services of ParaCENTRA Fenix. You can contribute once or monthly via Darujme.cz, or by sending a donor DMS.

Jak nás můžete podpořit?

Finančním darem

Staňte se podporovatelem ParaCENTRA Fenix zasláním finančního daru na sbírkový transparentní účet číslo:

2600983054/2010

Váš dar si můžete odečíst ze základu daně z příjmu. Rádi Vám vystavíme potvrzení o přijetí daru.

Dárcovskou DMS

Staňte se podporovatelem ParaCENTRA Fenix zasláním dárcovské SMS ve tvaru

DMS ROZTACIME 30
DMS ROZTACIME 60
DMS ROZTACIME 90

na tel. číslo 87777

Cena DMS je 30 nebo 60 nebo 90 Kč. ParaCENTRUM Fenix obdrží 29 nebo 59 nebo 89 Kč. Více na www.darcovskasms.cz

Finančním darem on-line

Staňte se podporovatelem ParaCENTRA Fenix zasláním finančního daru

Kontakt

ParaCENTRUM Fenix, z. s.
Netroufalky 787/3
625 00 Brno
T: +420 733 589 567
E: info@pcfenix.cz
www.pcfenix.cz

Přihlášení k odběru Zpravodaje

© ParaCENTRUM Fenix. All rights reserved.