Moments of comedy - no matter what, there will always be laughter

There is always laughter - My notes in hindsight:

It may be a case of ‘you had to be there’ when you actually read the story behind this post cause Martyn doesn’t think anyone will find it as funny as we did.🙈

But the point to this one is that even in those moments of darkness or stress or sadness, there can, and always will, still be some laughter too.🙏

Luckily for us, moments of darkness are rare and fleeting these days. But in that first week after Arlo’s diagnosis everything felt very ‘heavy’.

Amongst the stress of actually getting hold of all the medication Arlo needed and getting it inside him successfully, there was a moment of comedy when picking up his creon for the first time.

And I remember being so relieved that we could laugh about some of this stuff!

Because of course finding out that your baby has cystic fibrosis is no laughing matter - and the things we were talking about with his doctors, the things we were learning and the things we were doing in those first few days were all very ’serious‘ and super important.

But we could still laugh! At my silliness! At that stupid tiny spoon! There could still be laughter!☺️

And my promise to Arlo is that there will always be laughter and happiness to keep his spirits up no matter what!💕

And my message to other parents currently coming to terms with a CF diagnosis or to parents who are in one of the darker moments where their child is not well, you will find laughter and together we will be able to find joy.

Read more in my diary entry below:

Saturday 29th August 2020

Arlo’s age: 4 weeks and 3 days old

Yesterday was the first full day of giving Arlo his antibiotics, vitamins and enzymes (creon). It was a lot, I’m not going to lie. I felt like there was always something for the poor little fella - a syringe with something yucky tasting in it or a baby spoon with some puree and strange granules on it! Bless him. He was so good but I do worry how long his good will and favour will last. Will there come a point where he is fed up of taking a mouthful of horrible tasting stuff? And the mum guilt from giving him this horrible medicine is unreal. Nobody wants to see their child grimacing and squirming - eyes looking up at you wondering what is going on!

But on the positive side it feels good to be doing something that we know is going to help him - especially the antibiotics and the creon. The latter of which is the enzyme that will help him to digest fats from my milk. I am very optimistic that this will really fast track his weight gain and I very much look forward to having a chunky little baby in my arms soon. We all love to see a chubby baby!

There was a moment of comedy at the pharmacy picking up the creon - Martyn, Mum and I laughed about it a lot. (Although at the time I thought I was going to pass out from stress!) I was on my own cause we had to go to the hospital pharmacy to collect his first prescription. The pharmacist gave me his medication and showed me all the items. When it came to the creon (digestive enzymes) she produced this tiny pot - only about 10cm tall - saying, “Give baby half a spoon with every feed. This should last you around a month.”

Arlo’s team at the clinic had said the same thing - that we were to give Arlo half a spoon with his feeds. And he’s feeding every 3 hours so that’s a lot of half spoonfuls! I looked at this tiny pot and panicked - this was never going to last us if we were giving him half a teaspoon of it with every feed!

So I said to the pharmacist, “Oh no, is that all you can give us. That has to be given at every feed, it’s never going to last us a month.” The pharmacist looked quite worried and agreed that it didn’t look like it would be enough but told me she couldn’t give me any more and I’d have to speak to my GP for a repeat prescription.

I was in a bit of a panic. How long did repeat prescriptions take... if I started one now would we be able to get more creon before this little pot ran out...

I ran back to the car where Martyn was waiting with Arlo in the car seat and told him what had happened. Then ensued a stressful 20 minutes in the car outside the hospital on the phone to the GP, the pharmacy, etc. but not getting very far with a new prescriptio.

And whilst we contemplated whether to call Arlo’s CF team I thought I’d take a look at the pot of creon granules and reassess how long they might last us. When I did, there in the same box as the pot of creon was a TINY SPOON, literally the smallest I’ve ever seen in my life. I showed it to Martyn immediately and we just burst out laughing cause of course this would last him a month if THAT was the spoon! Oh Lordy! And so it begins!

Although I do also feel incredibly stupid - why on earth had I assumed it was a bloody TEASPOON?! For a tiny baby!!! I am just going to put that down to a serious case of baby brain and lack of sleep.

Glad that there can be laughter and happiness about some of this stuff though. And I realised that I will always want that for Arlo - we will always find things to laugh about and we will always keep his spirits up!