“It takes a village” - Support from friends and family in the first few days after Arlo’s diagnosis

My notes in hindsight:

They say it takes a village to raise a child. Well for us we certainly needed our friends and family in the first few days/weeks after Arlo’s diagnosis.

With all the worries and emotions that it brought, it also opened my eyes to how incredible our friends and family are. I found that the more people we told about Arlo, the stronger I felt.

But whilst our friends and family were INCREDIBLE I was also keenly aware of how hard it is in these situations for friends and family to know what to say to you. What do you say to someone who’s baby has just been diagnosed with CF?

In that first week when it all felt so raw I don’t really know what I wanted people to say but I do remember some responses were harder to take. I always knew the intention was to comfort us but some things maybe didn’t help us in the way that was hoped by the person saying the words. Don’t ask me why - that’s just how I (or we) felt.

I explored this in a handful of my diary entries the 1st week after Arlo’s diagnosis and I’ve popped these entries into a blog.

I’m sharing these in case it resonates with other CF parents and because it featured a lot in the first week of diary entries. But be warned - these entries are pretty rough around the edges but I promised myself I would leave them unedited - so they might be a little imperfect but it is a snapshot of my thoughts at the time.

Read more in my diary entries below:

Thursday 27th August 2020

Arlo’s age: 4 weeks and 1 day

This has already given me such stark appreciation for the incredible and supportive friends and family we have.

Telling friends has made me feel stronger and more able to cope with the next few weeks as we learn what Arlo’s diagnosis means and what we need to do to help him. I feel very lucky.

But I do have to add that some of the language is tough to hear sometimes. I guess people don’t know what the right thing to say is - and maybe there never is a right thing cause we’re all wired so differently and what comforts me might not comfort another mum in exactly the same situation - but the phrase ‘sorry’ and sentiments of loss and grief have crept into too many messages (due to coronavirus we have been unable to tell people face to face as we would have preferred). Don’t get me wrong, I know these words are sent with the best intentions and from people who only wish us the best and mean well. But for me it feels like the wrong narrative for a family going through what we are going through. There shouldn’t be lots of language focusing on loss or with a sense of either pity or mourning. Because we are not in mourning and we have not yet lost anything. We have simply gained some knowledge that empowers us to do the right things and the best things for our even more special little fella! Maybe that’s just how I need to think right now and that’s why I feel this way.

And it’s not that I’m in denial of the challenges we’ll face and the risks and how tough it may be at times, it’s just that I don’t want to focus on it. It doesn’t make me feel good.

Of course, people can be shocked for us and can share in that with us. But please do not be sorry. Because much as this might seem like the shittest situation from the outside - it is just the way it’s clearly meant to be for us. And we wouldn’t change it for the world.

Saturday 29th August 2020

Arlo’s age: 4 weeks and 3 days old

Arlo met a family friend yesterday. It’s probably the best reaction we’ve had so far. There was no needless or well intentioned ‘sorries’ or any sense of pity. She just acknowledged how tough it might be for us and talked about his CF with us - but just pointed out that we all have challenges to face and Arlo is lucky we are so ready to do all we can for him. It was wonderful.

Sunday 30th August 2020

Arlo’s age: 4 weeks and 5 days old

Had another weird moment today. Got a bit wobbly when we had a visitor this morning. I think our visitor wanted to avoid the subject of CF and for some reason for me it became the elephant in the room. I felt like I didn’t know what to say and I couldn’t think of anything else to talk about cause that’s literally all I think about 24/7 at the moment with the diagnosis still feeling so fresh. So for some stupid reason I had this intense need to cry and found myself fighting back tears. Felt so embarrassed and it must have been awkward for our visitor!

I know there’ll be a time when the CF is just incidental and of course I don’t want it to define us at all - when I look at Arlo I don’t see his CF, I see our incredible baby boy who happens to have CF. But I also don’t want to avoid talking about his CF cause it’s a part of our lives now. I am unapologetically part of the ‘CF family’ and it will always be part of our conversation. It shouldn’t make me or anyone else feel uncomfortable.

But on the positive side, Arlo and I had a wonderful moment dancing to Beyoncé whilst I waited for the hour between his antibiotics and his feed. It was a really sweet moment that cheered me up so much! He is so precious! He just chilled in my arms whilst I danced and sang to Queen B. Couldn’t love the little man more if I tried.