Since the early days following Jessica’s diagnosis, I have found it helpful to get in touch or chat via social media to other heart families – hearing their stories or sharing experiences with someone else who has travelled a similar path. The sense of community amongst heart families was one of the things that really helped us get through our time in hospital although we only very occasionally meet up with other heart families outside that hospital environment. At the end of last month though, we managed to go to the Little Hearts Matter open day where we met other parents who have children with a similar heart condition to the one Jessica has. It was a very informative day with various talks and workshops and we found the talks on life beyond the Fontan procedure (Jessica’s next anticipated surgery) and preparing for infant school particularly useful.
This month we have celebrated another one of Jessica’s heart days as it has been three years since her most recent open-heart surgery – the Glenn procedure. It is so lovely to look at how well Jessica is doing now and realise how far she has come since then and we will be forever grateful to the surgical team and all the medical staff who have helped Jessica on her journey so far.
For those who haven’t encountered my heart families linky before, here is a summary of what it’s all about:
Heart to heart is a monthly link-up for heart families to share stories about their journeys. My eldest daughter Jessica has hypoplastic left heart syndrome and I started blogging about her heart journey a few weeks before she was born. Since her arrival, we have got to know other heart families, in person through our stays in the hospital, but also online through social media and blogging. It has been hugely helpful for us as a family to hear stories of other heart families which have helped give us hope and encouragement, but also made us realise that we are not alone in our struggles; that we are part of a community of other heart families. I started this linky in the hope that sharing stories would help other heart families out there too.
The linky opens on the 15th of each month and stays open for a week so there is plenty of time to share. You can share old posts or new posts, updates on how your heart child is progressing, poems, advice – whatever you like as long as it is related to life as a heart family. If you would like to add the code below to your post that would be great and please do visit other posts in the link too! I’ll also try and share posts on Twitter – and will try and retweet those with the hashtag #hearttoheartlinky
Thank you to everyone who linked up last month. I have added posts previously linked up to Heart to Heart on my Pinterest board as well as sharing other CHD-related posts. If you would like an invite to pin to it, please do let me know.
This month I’m sharing a recent post about trusting my instincts and remembering that Jessica achieves milestones in her own time and not because other people think she should do so. I’m also sharing the latest update from Jessica’s blog about her heart day and how she is getting on at the moment.
Looking forward to reading your heart-related posts this month.