Ok... so good intentions aside... I really struggle to find time to sit down and write stuff here... and when I do finally get all the girls into bed and medications and feeds done and everything under control, I have hundreds of ideas of things that I want to write, but I struggle to find the words to write everything down.
Tonight I need to write something because I have so many thoughts rushing through my head that they're starting to jumble and crash... so it's time to put some out in the open.
So... anyway... here goes.
On Friday night Nicola got rushed into emergency theatre to have a shunt revision done. Nicola has a Programmable VP shunt inside her head. In laymans terms there is a catheter that goes into her brain and drains spinal fluid into a reservoir. The reservoir then drains fluid down through a valve into the cavity around her gut which is then reabsorbed by her body. The idea is that it is supposed to remove the excess fluid from around her brain and relieve the pressure around her brain.
So anyway, Thursday night we noticed that the site around her shunt on the back of her head was looking a bit squidgy... Friday morning we phoned the neurosurgeons to ask for advice... Friday afternoon she had a shunt series done to check the status of it and Friday night she was in theatre.
It was a bit overwhelming... but then again I am starting to get a bit used to this. My husband found it funny... every time anyone asked him about our plans for the weekend he responded with some quip about just popping up to the hospital for a spot of last minute neurosurgery... like it's no big deal or anything... you know, we may as well have just popped down to the local shops for how blase he was being about it all.
But this is our life, and we are adapting quickly. We are resilient, we have to be for our other children.
Anyway... this is where the real point of my post tonight starts.
Saturday night I get around to checking my email and find an email from one of the other Costello Syndrome Support Group Mothers, letting people know that her son had passed away.
He was 27 years old. He wasn't unwell, he wasn't in hospital, he hadn't had surgery... he just passed away. They think it was his heart.
It was a simple email, just one line... but it shattered my heart.
This hasn't been a good year for the Costello community. Willa has terminal cancer... she's only 2. Joanne passed away from complications from routine surgery... she was one of my dearest friends and she left behind two beautiful little children (one with very special needs) and a loving husband. Now with the death of Bret...
I feel like every other email that comes over the support group list leaves me in tears... the sad thing is, that no one in my real life understands why or how I can get upset over people who are virtually strangers.
To me, these people aren't strangers. Some of these people I have never met, some of these people I have met once... but still they are part of my inner circle... my nearest and dearest.
No matter where I look in my real life, there is no one that understands what we are going through on a daily basis. They don't understand the constant fear, the constant admsisions, the health problems, the medical complications... they don't understand the pain and the torment that becomes part of our daily lives...
We recently attended a support group meeting that was organised by one of the local disability services groups for families dealing with rare conditions. There were 4 families there... and out of all of them, no one understood what kind of life we were living. They haven't had the ongoing admissions or medical complications that seem to plague our every day lives.
And then there is my Costello Family.
While they don't necessarily deal with every single thing that we deal with, as a general rule, they understand. They get the babies that cry almost constantly for no reason... they get the feeding problems and the failure to thrive and the metabolic and endocrin problems and the gastro problems and the heart problems, the fear of cancer, and the combination of all of the above...
And they understand the isolation of dealing with a condition that no one else has heard of or understands.
We went to a cardio review last week and there was a new receptionist. While we were waiting to be checked in I glanced over the pamphlets sitting there and saw one for autism and one for downs syndrome, both talking about support groups and what help is available.
No one has heard of Costello Syndrome.
But my Costello Family understands, because they are living the same life that we are living. They are my light, they are my rock... they are my foundations. Without their support, I really don't know how I could get through every week.
That's why I get so upset when bad things happen to my other family. That's why I cry at the heartache of someone who is a virtual stranger... because even though they are virtual strangers, they are my family, and I love them all deeply... even the ones that I disagree with!
But beyond that, there is also the fact that it makes me question a lot of things that I try and push to the back of my mind... like the fact that there but for the grace of God go I.
And it sounds sooooo shallow and self absorbed to say that, especially in light of everything that has happened... but regardless, I feel it.
It could just as easily be my daughter, my family... and that thought tears me apart. I hate even thinking about it, but I can't help but think about it when the reminders are constantly there. One bad news email after another, one complication after another... every day there are reminders that our lives are just totally not 'normal' and that's ok... but every three months comes the slap in the face that reminds us just how bad it could be.
But at the end of the day, when I still have my daughter here, no matter how bad a day I might be having, what right do I have to complain when there are clearly others who are so much worse than I?
At least tonight I can still go and kiss my children goodnight...