Early March I was happy to visit friends in Stockholm and even though I became ill after two days, they inspired me! Incredible!
Zuzanna and Lukas have two daughters. Polly is the oldest one. She is a beautiful 5 year old, with blond curls. She loves to watch Frozen, over and over again! Anthony is curious toddler (15 months old) with a little brown ponytail. These four people make a warm and loving unity that sees numerous opportunities for a great family life supported by Polly's personal assistants. Polly has assistants because she needs the hands of someone else to live as normal another 5 year old due to Rett syndrome. The Swedish government provides for almost 20 hours of Personal Assistance to help her get through the day and the broken nights.
Among other things Polly needs support to walk. Inside the house she uses her stool scooter to move around the living room and open plan kitchen. Outside the house she uses a wheel chair that is pushed by one of her assistants. During a walk across one of places with a fantastic view of Stockholm Polly agrees with the proposal to walk and get out of her wheelchair. Her assistant helps her to stand up and supports her from behind. Together they start to take som small steps. I push the empty wheelchair and Zuzanna, while pushing Anthonia's stroller, walks side by side with Polly. Due to the supporting assistent Polly is able to walk quite far already. Zuzanna checks with Polly, "I'm asking you a question. Do you want tot stop? You need to tell me yes or no." Suzanne moves nods her head and moves to the side for no. Polly's answer is clear, she moves her head to the side 'no'. Polly continues her walk and Zuzanna holds her hand. The smile on Polly's beautiful face is even bigger then the smile of her loving mother. Mother and daughter walk hand in hand across the sidewalk of the Swedish capital. Lets play a game! Zuzanna points to 'hurry up!' on the front page of Polly's PODD. They run and then Zuzanna suddenly stands still and points to 'stop'. We pause for a second and delight in this precious moment. However, Polly isn't done yet! She continues to run together with her assistant until Zuzanna says 'stop' once more and points to the symbol. It's an everyday game for a mum to play with her child, but it's not at all an 'everyday game' for Zuzanna and Polly. Its precious moment.
I'm moved when I realize what a personal assistant adds to the live of a mother of a child with complex needs. Madeline is one of the lovely ladies that have been involved with Polly for a while now. She is there to help Polly to be a normal 5 year old.
Back at the airport I think about my incredibly hospitable friends. They took such good care of me being ill. I remember the smooth trip from my home to their home few days earlier.
I had not traveled to their home in Sweden before. I took the ArlandaExpress, following Zuzanna's instructions. The airport bus brought me to the city centre. At 'Cityterminalen' I changed coaches and waited for the next bus on my schedule. Due to the schedule I arrived at the busstop close to my destination, the house of Zuzanna and Lukas, 5 hours after leaving Schiphol Airport. Zuzanna helpt me with the script (schedule)! Zuzanna was already waiting at the busted and together we walked home. Such a delight to meet her again after 8 months and walk on the sidewalk... not knowing what was in store for me; becoming ill and being greatly inspired.
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