Katarina had Down syndrome. She also had epilepsy, mild CP and severe breathing problems that made her dependant on a tracheostomy from eight months of age. Due to all the complications and a lack of growth hormone she was very short, only a bit more than a meter. She had a deep mental delay and motor problems.
This is one way of describing Katarina.
This is another: Katarina was a charming little girl who knew what she wanted and as time went by she became very competent in manipulating the people surrounding her... She was a fighter who, in nine years, survived more criseses than most people do in a far longer lifetime. Katarina never worried about upcoming sorrows. She dwelled in the moment and wept over difficulties solely when they were ongoing.
Katarina made her progress at her own pace and us parents learned, eventually, to rejoice over milestones when she passed them, instead of grieving over how late she passed them.
A week after Katarina's sixth birthday we were happy whwen celebrating the wonderful moment when Katarina sat herself up for the first time. Noone who saw her do it again, and again the rest of that day doubted for a second that they saw a girl who was very happy about her new ability and most proud of herself.
And Katarina was not a bit frustrated when her little training-wheelchair only wanted to roll backwards. If you can roll backwards us little rebellions can decide that we want to roll backwards out of the neat circle of chairs during afternoon-gathering at the end of schoolday. Walking where one wanted to walk, for instance into kitchen to check if there was anything tasty to grip, one did in one's walker, a walker Katarina learned to manouver with the precision of a heavy truck-driver.
Things that made Katarina happy were things like swinging in a swing - high up in the air - and bathing in the extra warm pool. She was given three times to experience the outstanding joy of being allowed to float on her back in the pool, after having spent eight years of "swimming" in an upright position. Only weeks before she passed away I had found a special vest with a inflatable collar, a set that managed to keep her tracheostomy above surface but allowed her back and neck to rest in the water.
I only wish that I had captured joy that glowe out of her eyes - the joy of life - on a photo. I thought I had time to do it later. But I had not.
Katarina had a good and worthy life and our family-life was well functioning thanks to high quality day-care and special-ed, personal assistance and regular stayings at a short-term-home for Katarina.
Was Katarina happy? I'm convinced she was, as are everyone who knew and loved her.
Do I wish she was never here or that I had had the possibility to decide about her early death? Not for a milli-second! Katarina has taught me all I know about what's important in life. And she has given me an experience I wish I could pass on to the ones who think happiness can be predicted and measured. It is not so. Noone knows what life will bring to any of us. Noone knows who will be happy despite of unbelievable difficulties and who will be forever unhappy despite of the possesion of the attributes we so wrongful connects to happiness: health, money and power.
annika_60@hotmail.com
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