Finn turned one recently – 365 days of keeping him alive!!!
Which was not an easy task let me tell you. And miraculously I am still sane (I think?)
Honestly that was hands down THE hardest year of our lives. And also the happiest. I have wanted to be a mummy for a long time, and Finn has brought me and my partner Jonny far more happiness than anything else.
At the beginning when people first found out about Finn’s condition they would say to us “He’s going to be okay though, right?” To which we would always reply “Yeah he’s going to be fine!” Whilst I knew in my heart that Finn would survive, we had absolutely no clue how the next 12 months would pan out.
So here’s a quick recap on the past year… 18 days in NICU, 8 hospitalisations, 2 trips to emergency, 6 surgeries, 11 scars, countless nasal feeding tubes (being put in and pulled out again!), a thousand vomits, 2 feeding buttons, 80 nights ‘sleeping’ in the hospital, countless coffee’s, 100’s of needles, 52 weekly hospital car park tickets, ultrasounds, x-rays, hydroceles, a peritonitis infection, multiple failed attempts at peritoneal dialysis, the only person under 50 doing hemodialysis, one bout of paraflu, one bout of norovirus (the night before his birthday!), oodles of lovely nurses, and many amazing kind friends who visited us in hospital bearing gifts that kept us going.
Blimey, haven’t we been busy!!
Looking back now I’m not sure how we actually fit it all in?? But what a difference a year makes hey! To look at Finn you would never think that he’s been though so much trauma. I often find myself in awe of his amazing resillience.
It goes without saying that having a ‘special needs’ child with a severe chronic illness is full-on (I don’t see Finn as special needs, but apparently that’s what he is!) – it is both mentally and physically tough, and utterly life-changing.
I’d like to think that it has made me a better version of myself. And I’m pretty sure that this rollercoaster ride has many more twists and turns to come. Which can only teach me more, make me love harder and appreciate more.
Despite our crazy rollercoaster year of ups and downs, I have stayed pretty positive most of the time and tried not to let myself fret too much – positive thoughts!!! Since we know that Finn is in the safest hands with our team of amazing doctors. And happy mamma happy baby, right 🙂
Although I’m not going to lie, there have been some terrible times with no end in sight. A few particularly horrendous occasions are forever etched in my mind – once when Finn was hospitalised the second time for severe dehydration, he was hooked to a drip and in a really bad way… the doctors had a look of concern that I had never seen before. I genuinely thought at that moment he might not make it.
Another rock bottom moment was when Finn had been admitted to hospital for peritoneal dialysis – this was followed by a bad infection, followed by hydroceles, followed by peritoneal dialysis just not bloody working!! It was complication after complication and the doctors didn’t seem to know why. It was intense. We were running out of options and Finn’s bloods were not good, it was a scary time for us all.
But despite all of these operations, hospitalisations and generally keeping everyone firmly on their toes, Finn has grown into an extremely happy little dude. If you didn’t know any better you’d think he was a normal healthy one year old.
Over the past year I have learned more life lessons than in my other 35 years combined. But most of all I’ve learned the true meaning of selflessness.
My life literally revolves around caring for Finn. Making sure that he gets the right drugs that he needs at the right times, managing his continuous feeding tubes/machine, getting him to all his various hospital appointments, keeping him as healthy as can be, and most importantly – making sure that he is happy.
Finn isn’t allowed into childcare because he needs so much special care during the day and also the risk of getting sick all the time. Which also means that I can’t go back to work until he’s all fixed. Thankfully Jonny’s work has been super understanding and Jonny has been able to attend every surgery, and he’s even slept some nights at the hospital then gone straight into work the next day!!
Who knows what the next 365 days has in store for our little family. One thing I do know is that it will include the Big-T! This will be before Christmas hopefully. And then it’s all change again. No more dialysis and a whole new set of challenges to understand and get used to. But after the Big-T we should see some amazing changes in Finn.
Finn should eat, which will be both weird and amazing. And not vomit all the time – I am NOT going to miss the constant vomit catching/clothes changing. He will be able to have proper baths, become more mobile and catch up with the other bubbas. And maybe one day he will sleep in his own room!
Here’s to the next year of goodness knows what. But whatever happens – we’ve got this xx
PS – this pic is the first time we properly saw our baby (he was just called ‘Baby Spain’ at this point!) a few hours after he born since he was whisked off to NICU… we couldn’t see his face properly but I knew then that he was the most special little star I ever met.