Wednesday, 1 February 2012
On our way to Townsville for yet another batch of appointments yesterday it all suddenly hit me, this is our normal, this is what we do every week (sometimes we can stretch it to fortnightly trips, but not often). This is NOT what the majority of people I know do.
So why do I feel like our regular trips are nothing and that we are so damn lucky to only have to see a physiotherapist, occupational therapist, dietitian, pediatrician, speech therapist and pediatrics outreach and that we only visit the hospital pharmacy and medical supplies guy once a fortnight (or once a month if I'm organised)?
It all comes down to the friendships I have made since the beginning of our terrifyingly amazing journey.
In the real world our life is anything but normal. Our friends spend their days going to work, cleaning the house, playing with the kids. Regular, everyday things. So do we, but we also spend days in hospital, days travelling to and from appointments and days (and nights) doing everything we can to keep Bree from requiring medical intervention. In the real world we don't quite fit in. We are accepted by our friends and family, but they don't quite understand. We have fun, but we can't quite relax. We live a normal life, but it's not quite typical.
However in the Special Needs World we don't stand out, we fit right in. In the SN World we are actually one of the lucky ones.
When Bree was first diagnosed I started looking for information to help me understand. Through my search I found something even better, I found support, in the form of other parents who were already living my life.
Over the past year I have met some incredible people. A lot of these people I have never met face to face, but they are as real to me as any of my other friends, some more so. We sit for hours talking about our kids, our lives, all the stuff no one else quite gets. When things seem insurmountable I turn to them for advice. When everything gets too much they are there and they understand because they go through the same things.
I have met some amazing people off the computer too. When your life is full of specialist appointments, therapy sessions and hospital stays you are bound to meet people from the SN World. You can tell them without even looking at their kids. They're the ones that look like they haven't slept properly in years (because they haven't), they have a look of steely resolve set on their faces and they are telling the doctors what to do because they know their kids better than any professional ever could.
There was a time when I would look at the parents of a child with additional needs and think "I don't know how they do it". Now I look at them as my peers and I know exactly how they do it, by struggling and fighting people and opinions every step of the way. I don't look at them with disgust or pity I look and know "that's a very strong person pushing that wheelchair, dragging that screaming child, explaining for the fiftieth time today what is wrong".
It's because I am now so fully immersed in the world of special needs that I appreciate how "easy" we have things. People often comment on Bree's condition, how it must be so hard and upsetting for us... and it is. But we don't have it half as bad as some of the people I now know.
I have a friend whose daughter was born without a pancreas, that means she not only has Type 1 Diabetes, but a whole host of other issues resulting from this very rare medical condition. I have a friend whose sons have autism, both of them. I have a friend whose daughter has a condition that doesn't even have a name, actually I have quite a few friends with children like that. I have friends that have children that weren't supposed to survive and some that may not. I have friends whose kids require regular surgery and friends whose children barely leave the hospital. I have formed a very strong friendship with one mum in particular that deals with more than most of those mums put together.
So when I drive the hour and a half to Townsville for an appointment, instead of feeling sorry for myself I actually think how lucky we are. I forget that this isn't normal for everyone because for the majority of my friends our life is simple.