Probably don’t talk too much about Jennifer’s other side, we made up our minds early that we would focus on what Jennifer did, not what she didn’t or couldn’t do.
People may think we’re blind to Jennifer’s condition, but we’re not, we just choose to focus on the positive side of things.
For us Jennifer’s not the blind, epileptic with cerebral palsy….
She’s just Jennifer, our daughter. There was only one time she looked different to me, just after the doctor diagnosed her with CP, it lasted a fraction of a second until I held her hand and she smiled!
But she has another side, she is the little girl who can’t roll over in bed to get comfortable and can’t find her dummy when she needs it most.
The one who struggles to eat at times, who sucks unthinkingly on her hands, who daydreams for long periods of time and who creates frustration because we just don’t understand sometimes.
The one who will be teased and ridiculed by naive teenagers and the one who may never have a life long friend.
The other side is the fragile little girl who struggles to gain significant weight, the one who is intolerant to pain, the one who has a weakened immune system and who needs medical care when things get tough.
Jennifer’s just got home from hospital, she had a bad ear infection, airway irritation and a cold. Her throat was red, her lips were splitting and after 4 days we just couldn’t get any fluids in her.
I haven’t seen her that weak since she was born.
We spent 3 nights at the hospital, she was on a drip for most of the time, she was weak, she slept a lot and ate very little. She complained almost constantly when awake, she was in pain for most of the time she was awake.
I found it hard to concentrate at work, again I had to leave Emma with arms outstretched and in tears, again we traveled up and down from Stord to Bergen everyday so one of us could have a break.
The guilt you feel from having to take time off work, the fact that you at times can’t keep any pattern or continuity in your job or in your life, leaving Emma and/or having to ask someone to again look after her is coupled with seeing your other child weak and in pain with absolutely nothing you can do.
Odrun took the first night at Haukeland, I drove home at midnight and it took 2 and a half hours. I drove past an area where we’re looking for a house, it was 20 mins from the hospital…..
We’re always going to have to take time off work, but at least we can remove the guilt of having to leave Emma and having to ask someone to look after her.
When we move I’d like a job where I can come, do my job and go home, a job where I don’t have any projects to complete, telephone calls to answer or deadlines to meet. Right now I feel like I could clean toilets or move boxes for a living, after all it’s just a means to an end……
Odrun being a nurse can in a way do what I’ve just described, come, do her job and go home. We all take our work home with us, but the responsibility ends when she undresses out of her nurses uniform.
But being married to a health care worker isn’t always positive, they have to work shifts which means they’re often not home with their families, and to be honest the pay is lousy at best.
It just puts extra pressure on me, but I’m happy that Odrun is looking after someone else’s sick mother or father, sick daughter or son……because we know how important it is.
When I was at the hospital I experienced it first hand, the doctors and their long hours, the nurses run off their feet, hardly home to see their own children and looking after someone else’s, it’s something not to be taken for granted!!!
I’m proud of how Odrun and I deal with things, the guilt, the exhaustion the endless queues and waiting lines. Here we were sitting in the waiting room when we arrived, some people had been there for hours, some like us had just arrived.
All I saw were healthy kids with a fever and a few with a sprained ankle or something, and then there’s Jennifer, lying flat-out beside us falling in and out of sleep and groaning in pain, there were long periods where we were unable to get a response of any significance.
We started to wonder of her shunt was malfunctioning.
The ever-present hysterical mother was everywhere, complaining and bitching that their poor child was having to wait so long……
Odrun and I sat patiently and waited, both thinking the exact same thing…..
Wondering how often these other parents were at the hospital, wondering if they knew how lucky they actually were to have a healthy child,wondering if they knew how spoilt they were making their children by acting the way they were…….
It won’t be the last time Jennifer will need this kind of help, it won’t be the last time we’ll wonder if our child is falling so ill that her life may actually be danger, and it won’t be the last time Jennifer will have to fight with whatever little energy she has left to try to lead a somewhat normal life!
We prepared ourselves for 6 or so months of Jennifer being sick, seeing she’s just started kindy that’s usually the norm.
But we weren’t prepared for it to go so far….
I guess it’s a reality check, a wake up call, call it what you like…….
But it really is a fragile life!