When we found out that we were having twins – I heard “wow you will have your hands full”. Then when our twins were born too early and our littlest one – Anna Kathryn – was only 2 lbs., I heard “you are in our prayers”. Than when we got the diagnosis that Anna Kathryn had Prader Willi Syndrome, I heard “God chose you”.
Family, friends and even strangers mean so well when they tell you these little tidbits of what they think are kind words. The fact is when your family enters the world of being a “special needs family” we are no more prepared, chosen or special than any other family. We are thrust into a world that we know little to nothing about – but what we do know is that we love our children like I hope most parents do and we start our journey albeit a different one.
In a lot of ways Anna and Kayla are typical twin sisters, they fight, they laugh, they cuddle, they fight..but then there are the differences. Anna has spent at least a third of her life in the hospital, which means Kayla has spent one third of her life with an absent mom, too much time sitting in an uncomfortable chair in a hospital room and way too much cafeteria food.
I was determined to make our family just like every other family, I did not feel “stronger”, “chosen” or any of the other things so many people tried to tell me I was. I am tired, frustrated, confused and even sometimes angry. I think families like ours do ourselves an injustice – WE are different – we are not like other families – I mean in some ways sure we are – we work, we sleep (sometimes), our kids go to school…but it is different.
When Anna, in addition to having Prader Willi Syndrome, having over 16 spine surgeries and than in April had a sugery that resulted in her becoming a Quadriplegic – our family once again heard those kind words from a lot of those same people. But the fact is our family has faced many, many challenges that thankfully most families do not have to face.
As we embark on this next new “normal” – I think I realize that we are perhaps “chosen” – we choose to make it work, we choose to celebrate tiny milestones and giggles that most families may never notice, we choose to allow ourselves to cry, we choose to learn how to ask for help, we choose to realize how this one small child that has struggled her entire life – has changed us! We are blessed (and tired)
Lori is a busy mom of twin girls. Lori and her husband Mike live in Powhatan and the family including their dogs Tucker and Tinkerbell enjoy attending Anna’s Miracle League games and fishing.