We say Dexter's needing more surgery, as though that doesn't worry us...
We've already been through surgery with Dexter, so we are ok with it, right?
Sure, the surgeons know what they are doing, and they perform these surgeries
all the time.
While the surgery scares us a little, as it would scare any family, the recovery terrifies us.
Dexter does not respond well to pain medications... and we're not talking about panadol. The pain medications which are needed to ease the suffering of a little body, cut open and pulled apart, have caused Dexter to stop breathing. And, we're not talking about holding his breath in a tantrum. We're talking about up to 6 doctors and nurses working on Dexter at the same time, bagging him, resuscitating him, convincing our beautiful boy to stay with us.
Visions of Dexter being resuscitated are burned into our memory, forever.
We don't even really care about the scars. Dexter has so many already.
His little torso is covered in them and, we're not talking about the tiny one from tripping over. We're talking about incredible white lines, crossing his body, where he has been slashed open by surgeons. Each scar is etched in our memories and often, and unpredictably, the sight of them brings painful memories to the surface, and our hearts break, all over again.
We've been advised that we'll be in hospital for two days, and we know it will be longer. We know Andrew will use more of his leave to be in a hospital. Andrew has been able to count his leave time in minutes, having used every day up on hospital stays. But, while we would love to use the leave time doing something fun, being with Dexter in the hospital is more important. Our little boy needs to know we are there for him. And anyway, we both need back-up... neither of us has the strength to endure the hospital stays alone... The frightening wait during the surgery and the long, long, long recovery time. We don't get much sleep, or fresh air.
The hardest part now, is Dexter's little sister.
At ten months, Charlotte has an inner strength and is developing an empathy most people never gain. She fell instantly in love with her brother, the moment he lay beside her. Their connection is incredible and beautiful to watch. Somehow, this little girl was born, knowing her brother would need more time and support...
We couldn't enjoy our pregnancy with her, as we spent so much of it in the oncology ward. We were so afraid. Now, at ten months, she's already endured three lengthy hospital stays. While she slept peacefully through the first couple, she is now an active and curious little girl, and we cannot expect her to sit patiently, and quietly, in a hospital room for any length of time.
So, who does she stay with? Does she stay with one of us? Does she know how much we love her, and that we are not choosing Dexter over her?
Does she know how much we would rather be at home, together, as a family?
So, assuming everything goes to plan with the surgery, and Dexter copes with the recovery time - and, we've been told this procedure is very painful....
We get Dexter home again, for roughly 12 weeks of recovery time.
This is most likely what Dexter will look like, post surgery:
Not the way he will have to sit....
Not the casts on his legs, regardless of the cool pictures we can draw on them.
What breaks our hearts, is the setback to his development.
Dexter has worked, so incredibly hard, to develop his strength. He pushes himself way beyond what we ever do. In his walker, he will cry out in pain and make frustrated noises, and yet, push himself that little bit harder. His stretches make him cry out and this sound breaks the heart of anyone watching. This little boy is so determined and so strong.
And, all that work... has been for nothing.
After 6 weeks in a cast, Dexter will be back to square one.
Muscles will be lost.
Strength will be gone.
Dexter will have to start all over again, and this.... this breaks our hearts.
It's the most incredibly frustrating thing, and seems so unfair, after everything this little boy has had to endure. We just want to scream and yell and cry.
But, we don't.
We stay strong... for our families... for our friends... and for the people who ask thoughtless questions.
And, we stay strong for Dexter.... because he stays strong for us.
For most kids, they could 'endure' 12 weeks of watching fun movies and playing computer games.
He will, pretty much, have to sit and be incredibly bored.
He hates sitting.
He hates being still.
(And this, this is his greatest strength - that inner determination. That stubborn 'never give up' approach.)
Sitting still is going to be incredibly frustrating for Dexter.
Carrying him anywhere, feeding him, bathing him, taking him in the car... all of these things will be much, much more difficult.
And, we'll most likely be using a wheelchair.
For some people, this might seem like fun... an adventure...
For us, this breaks our hearts, too.
We've done everything we can, to help Dexter develop muscles and strength, to give him the best possible chance at not having to use a wheelchair... and yet, we'll have to give in and use one.
It breaks our hearts.
And then, there's the pool.
This might seem so small a thing, but, if this operation takes place within the next month or two, we will lose another summer.
Last summer, we could not take Dexter swimming, because he was undergoing chemotherapy treatments and he had an open wound in his chest for 8 months. Then, once the central line (cancer cords) came out, and the wound had healed enough to allow us to take Dexter swimming, a tornado came and ripped the pool apart.
It's a small thing, but we were so excited about getting Dexter into the water again this year. It is such fantastic therapy for him... but, we will most likely miss another summer of swimming.
We are so grateful for all of the support and love Dexter receives.
We know he is loved.
We are often stunned into silence, by just how much our little boy is loved... (that makes our hearts sing).
We strive to share Dexter's story in a positive way. We don't want pity. We don't want to complain. We don't want this life of cancer and cerebral palsy. We got it, though, so we will do the very best we can. We have to raise awareness now, and empathy. We have to do what we can to make Dexter's future a little easier. And, with your support and kindness, you let us do this.
We'll be ok. We'll get through this.
But for now, our hearts are a little bit broken again, and we just need a little time to get our heads around what we are about to put Dexter through, and the setbacks this will cause him.