Parents who receive the news that they are likely to live longer than their child go through quite the maelstrom of emotions.
For me, there was initial devastation, followed by anger (well, fury would be a better word) at the unfairness of life, followed slowly by a form of acceptance.
Over the years we got so used to seeing our boy defy his prognosis that in a way it didn’t feel real saying that he was classed as life-limited.
We enjoyed a typical happy family life.
Yes, there were many hospital admissions, and we always knew that his condition was life-limiting, but it was never something that we actively thought about.
Then this year out of the blue, he developed a rare but very serious lung infection and we came agonisingly close to losing him.
Had we not been in hospital with him already there is every chance that we wouldn’t have got him here in time.
And all because of a little bacterium that lives in many people’s lungs harmlessly.
That infection didn’t so much burst our comfortable little family bubble but ripped its heart out.
As he battled to live, the Dr’s battled to not only against the infection but also against our little boy’s health issues.
Sam’s condition is due to a brain malformation, which is not going to get worse.
However, years of relentless seizures and aspiration have done considerable damage to his 9yr old body.
His health has most definitely deteriorated.
Parents like us want people to know that while grieving for a child who is still alive is a very distressing experience, it is something we often have to go through.
It’s a way that our brains can process the hand we and our babies have been dealt.
We want people to see that our children are not just a collection of symptoms/conditions to be mitigated or treated… they are mighty little people who face enormous challenges with a smile.
Please don’t tell us to ‘enjoy making memories’; we know how precious these are but ultimately all we want is our child alive.
Reminding us to make memories while we can is like reminding us that our children aren’t going to be around as long as they should be.
We really aren’t any different to any other families; we love and laugh the same, and need time out from each other on occasion.
Knowing that something is going to hurt doesn’t make it hurt any less when it happens.
What we want you to know is that we want to be able to live as a family the same as anyone but that if/when we have to face life without our child, our friends will be there to catch us when we fall.