Today is a day for eating pizza in front of the telly, drinking coffee and attempting to persuade the stress of the year to bog off for just 5 minutes.
I believe it’s called picking your battles.
Until relatively recently, I didn’t really appreciate how important this was – since Sam arrived and I discovered what I was really made of, I’ve often had to battle on multiple fronts, usually over equipment and therapies.
But, never in all my life have I had to battle as hard so over the last 12 months.
It is a depressing fact of SN life, that the very people in place to support families and help them are more often than not the very ones creating the biggest obstacles.
I’ve waxed lyrical about the DFG process, and how it has come close to breaking far too many desperate and exhausted families.
It is THE most appalling process ever devised and it is getting worse.
Over the last 12 months we’ve been pushed to the very edge on a weekly, if not quite daily, basis.
But even in the darkest times, when we were battling for support and equipment while at the same time sitting by our little boy’s hospital bed praying for him to make it through the latest bout of life-threatening illness….
There have been pinpoints of light in the pitch black:
- Sam’s team of doctors, who never give up on him.
- The nurses who remember him as a tiny, critically ill baby with the courage and determination of a lion.
- The amazing hospice who have managed to fit us in for emergency respite stays when our health broke down utterly, while slaving away behind the scenes pulling strings and applying pressure to various professionals to ensure that what we and Sam needed was put in place, asap.
- But most of all, I am blessed to have a close network of friends who are family to us.
Who will drop everything and get on a train or drive, without hesitation, from where-ever they are in the country because they recognise the strain in the voice on the phone, or the heartbreak in the words of a text.
Those people have our back.
They do not necessarily have easy lives, many are also SN families and are used to battling themselves.
They are a lifeline and loved more than they know.
So, today as I try to relax a little bit, I want to take a moment to salute those who love us despite the battle scars.