Emma, often referred to as “the other one”.
Often the first question we get; “Is she normal?”
As normal as 4 year olds are I guess……
Often left out, often upset because of that and often scared that mum and dad are never coming home from the hospital.
Over a year had passed and we often forget the chaos Emma went through too when Jennifer was born, not only did she have to take a back seat to her little sister, but mum and dad were so busy that it left very little time for her.
Emma thought for a long time that that was how babies were born, with tubes and doctors and nurses. She often said ” when I was a baby, the nurse looked after me too!”
Still, a year and a bit on, Emma hates us going to the hospital without her. And it’s not that easy to take her either, every appointment states that siblings must be left at home.
She complains like any other 4-year-old, but when it comes to the hospital trips, she’s still upset hours later at night when we’re putting her to bed. And it’s not just upset, it’s a genuine fear, her voice trembles when she asks if we’re coming home again…….
It hurts, and has done for a long time.
The reason we’re moving to Bergen this year is not only to relieve the pressure on Odrun and myself, not only to curve Jennifer’s anxiety of travelling all day,( When we travel to the hospital, Jennifer hardly eats, hardly drinks and hardly sleeps well those days, and takes days to get back to her normal routine as well ) ,not only the lack of specialist help in Stord, not only the fact that we know that Jennifer’s shunt will malfunction one day, ( they all do, it’s just a matter of time )……the out weighing factor is Emma.
We don’t want Emma to grow up remembering that mum and dad were never home, that mum and dad were so busy with Jennifer that they hardly had time for her.
Sure, given time she’ll understand that. But you’re only a child once, and the memories should be happy, not sad!!
Emma’s often the one we over protect, but who could blame us?
If anything ever happened to her………well there really isn’t any words!
Emma came earlier than originally planned, I was 27, Odrun 28.
After we’d married we wanted to wait until we were 30, we wanted to travel to the US and Asia before we “settled down”.
But a few family circumstances made us re-think, and we made the decision to go ahead before planned.
Definently not the stupidest thing we’ve done!
I know the chances are extremely small, but if Jennifer was our first, there’s no way we’d even contemplate having another one.
Never say never, but Jennifer is probably the only sibling Emma will have, and that clouds our thoughts on top of everything else.
Not being able to grow up with a “normal” sibling, run around and play and do the “normal” things kids do.
The chances are extremely small, but the courage just isn’t there yet, even Steffan said it to me “Mate, this will never happen again, don’t be scared to have another one”. Not a slant on Steffan or anything, but someone saying that in an English health system…….must be true!
I read a report by a professor recently given to me by someone at work. He had studied 600 families over 15 years, all of whom had a child with one or more disabilities.
The results were no surprise;
– parents usually go on and have more children. A thought that is only just tolerable for us now.
-siblings do just fine, and develop better values and understanding of people in general.
-siblings usually go on to work with people, wanting to help or make a difference.
-parents in general reduce there working hours, and live a simpler, quieter less expensive life in order to care for themselves and their children.
-all parents experience the social security and communal systems as cumbersome and demanding.
Sometimes you even feel that outside of the systems, like we shouldn’t complain because we’ve already been granted equipment or a monetary grant from someone else’s tax money.
We pay tax too!
The door often needs to be kicked open to reach these resources, and it always seems there’s more than one person behind it!
Being the sibling of a disabled person has its plusses and minus’, but with Emma she tries unconscionably to turn everything into a positive.
At the end of the day it’s not a bad way to grow up really, when lots of things around you can be so negative, or so different to the “normal” world.
I guess in a way, Emma will automatically become a kind and caring human being by having to live the life she’s given.
Hopefully she’ll be able to see past the flaws and imperfections in a world obsessed by perfection, appreciating what’s on the inside and not judging a person by what’s visible to the naked eye…….
Isn’t that what we all want in a friend, in a partner, in a sibling…..?
At only 4 years old Emma already displays attributes that have Odrun and I prouder than we ever could of imagined a child could make us.Jennifer really couldn’t have asked for a better big sister!