I know I use that word a lot but I'm not sure how else to say it.
Milestone is defined as :
1. A stone marker set up on a roadside to indicate the distance in miles from a given point.
2. An important event, as in a child's development, the history of a nation, or the advancement of knowledge in a field; a turning point.
I could say that both definitions fit with Cadel's journey. I feel like sometimes this CF road we have been put onto has those markers and it feels great to be getting to them and passing them but it's also many other emotions.
Cadel started school last week. He started school. Wow! Just letting that sink in is crazy and stirs up so much emotion. I flash forward to him being able to read, do maths do all the projects and class talks like his brother and sister have. I also flash even more into the future to him graduating, going to high school and then if he chooses University.
I also flash back though. I flash back to sitting in his hospital room, I can see it all clearly. We had been told that the team that look after Cadel were having a meeting to discuss Cadel's treatment going forward to make sure they were all on the same page. It seemed to take forever for them to come see us and tell us what they decided. Little did we know.
In these flash backs it's all clear as day. I see all the glass windows, watching people walk pass and someone closing the glass door, the doors were never shut in HDU, ( the High Dependency Unit) I see Cadel's Dr sitting across from me, her face looks stressed and her eyes look red like she had been crying. I see the ICU Dr sitting beside her in his scrubs. We have never met before and I remember looking at the embroidered name on his shirt and wondering why he was there, sitting there in silence with a look on his face that can only be described as worried, concerned and nervous all rolled into one. I can see Cadel and his pale little frame laying on the bed with the noise of the high flow oxygen as it forces high rates of oxygen into his sick, diseased and tired lungs. I can see Scott sitting beside me on the makeshift bed. He grabs my hand as those terrible horrible words are tumbling off the Drs lips. I remember someone passing me a box of tissues and I remember going numb after the word palliative care is spat out. I say spat out but I know it was said with such care and compassion but it always seemed a dirty word as that word seemed to change everything in our world.
After the Drs leave and Scott and I are free to discuss the bad words that have just been said I remember clearly saying. "This can't be happening, he'll never fall in love, he'll never have a first kiss, he'll never even get to go to school."
It doesn't make sense, the order in which I said things but sentences rarely do when you've just been told your son only has months left to live.
Cadel has gotten to go to school. Cadel has reached major milestone moments and that is massive, huge, enormous and amazing. But and its a big BUT it could have been a very different day last week. We could have been grieving our amazing little man and not celebrating his first day school. We could have been sitting at home upset and thinking about what could have been instead of going out together as a couple and celebrating that we have three, count them, 1,2,3 munchkins in school! We are positive and remain positive about Cadel's future, we believe that has helped us get to this point with his health but to be honest it is never far from our minds that things could have been the complete opposite. We don't like to burden our friends and family with these thoughts but we do talk about it to each other a lot. If we didn't it would bottle up and possibly explode.
We are beyond happy with all the steps that have been taken to help our little guy settle into school. We know that the school and staff have his best interests at heart and listen to this crazy control freak of a Mumma. I see already that they have taken their own steps towards making sure Cadel's health is a priority. Many more milestones will be met at the school and we will celebrate every single one, the small and the big. That's how we roll.
We are beyond excited that we get to share our little man and he can make more people fall in love with his big blue eyes and beautiful personality.
Sorry it's a long one and a little late and a long time between blogs but sometimes when things are good I don't need the therapy of writing. I will try and blog some more of the good to share with you all.
Thanks for reading.