Lilja by Johannes Romppanen

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Lilja is my daughter. It is also the name of a photobook telling the story of her first four years.

In 2013, when our third child was born things did not look very good. Our daughter had a lack of oxygen and was placed in the natal intensive care unit. This was the start of a completely different journey.

Lilja is now 6 years old, she does not speak, she does not walk, she needs full assistance and will be needing assistance for the rest of her life. This photo book is a visual story about family life, a story about when life with surprising hospital visits becomes the new normal. A story of extreme tiredness but also joy and gratitude. A different story, a story I wish somebody would have told me before the birth of Lilja.

There is a value of telling the untold stories: the life of the disabled is often in the margins and by opening up my family album I want to show that this too can be just plain every day life.

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