In | #heartmonthphotochallenge Week 4

February 2018




Day 22 - Friendship
Having children teaches you a lot about friendship, and which are worth holding on to. I was probably a pretty bad friend before I had Ivy but admittedly got worse, just as I think every person does once they’ve had a baby! But the huge tilt shift in my life just meant I had little to nothing in common with most of the people I knew in my pre-child life. But I am ok with that, she is and always will be my priority and I understand that to some people, she is not. Naturally, I gravitated to those very few that just ‘got it’ and since then we have formed life long friendships with even more of those types of people. It doesn’t matter if that’s been neighbours, mums in hospital or even on instagram, you just know when you’ve made that instant connection with someone don’t you? And thank goodness for those friends who understand when I cancel on them 10 times before we do finally meet up. For my mum, who has been my best friend since the day I was born. For the friends that know exactly what to say when I have to update them on our life. For the heart mums that understand your struggles and the worrying amount of friends who bought me gin in the last few months! But it’s not just about me - I want this so badly for Ivy too. Due to constant hospitalisation (regularly caused by catching things from other children) I have struggled to find her the friendships she needs too. She is so mature for her age, she can sometimes struggle to mix with children her own age now and the social aspect is the main reason why I desperately want to send her to nursery. We have an incredibly special friend she still talks about daily back in Oxford who has been raised in such a Similar situation to Ivy I hope they’ll be 2 peas in a pod forever and she has formed some beautiful friendships here in Herts now but none of them are as regular as a 4 year old needs. I can’t wait for her to be able to attend birthday parties and get invited to friends houses for tea, sleepovers, cinema dates and telling me about the friendships she’s forged for herself but I hope she knows that she always has a friend, as well as a mother, in me. She’s been the best friend to me in the last 4 years enjoying everything from Big adventures to babyccinos together daily and I hope we are this close forever.




Day 23 - Future
Ivy’s heart condition is rare, PLE is even rarer, getting PLE at 2 years old is almost unheard of and this makes Ivy future extremely uncertain. We have no other option but to ‘wait and see what happens’ because there is almost nothing more we or anyone else can do now. Ivy doesn’t do things by the book though and has baffled doctors her whole life by defying the odds and we just have to hope that this continues as she grows older. It’s difficult striking the balance between an optimistic and realistic approach to her future. I of course cannot wait to see everything she achieves in whatever life she has but there is something so heartbreaking to know that I will never get grandchildren from Ivy, especially after the incredibly strong mother/daughter relationships that have run though our family for generations. Whatever the future does hold, we will encourage her to follow her dreams just as we would with any baby and I am sure she will grow and flourish in ways we would never have imagined




Day 24 - Strength 
On the morning of my induction with Ivy, my mum handed me a ring with the words ‘be strong’ engraved on it. I don’t think it’s ever come off my finger until I gave it to Ivy to hold just now. Throughout my darkest and most difficult moments, I’ve only had to look down at my own hand to feel like I have my mother’s arms wrapped around me even if she’s been miles away and their is nothing stronger than that. Mum wears an identical one and Ivy too has one stashed away for her to wear on a chain when she’s old enough. I hope in a family of strong women, that I do my job adequately and raise Ivy in such a way that she becomes the strongest of us all (though I’m pretty sure she is already) It’s not always easy to lead by example but I look to my mum and my grandma and think of the example they set me and I look on in awe at the incredible strength my baby has shown over the last 4 years and I know why I must always remain strong for her. 




Day 26 - Inspiration
No one inspires me more than Ivy does - what I would give to have the courage and bravery she shares with us most days but almost equally, I look for inspiration from the other incredible families that we have met in the last 4 years. The beginning of this journey can feel so lonely and isolating but as time passes, it becomes almost normal not only to you, but to those you surround yourself with too and you begin to see just how common these struggles are for other families, not just yours. At this present moment, Ivy has more acquaintances with complex medical problems than she does with a clean bill of health and I am proud to say that some of my closest friends are people going through this too. These parents will do absolutely anything it takes to do what's best for their babies, they all remain so incredibly positive when there isn't always much to be positive about and we are all here to support and inspire one another to sometimes simply keep going. Natalie, Naomi, Grace, Mel, Sandra, Kayleigh, Abigail and so many others - thank you for being truly inspiring women to me as I could not be the mother I am to Ivy without knowing you're all out there nailing your journey's too




Day 27 - Joy
People often say they are sorry for everything that Ivy has endured in her short little life but is there really a need to say so when she finds so much joy in life, despite all that happens to her? Ivy's medical condition is of course a huge part of her life but it in no way defines her and the way the joy outshines the harships a million to one is proof of that. I strive very hard to make sure that the majority of Ivy's life is joyful to make up for the moments that aren't so great and when you have been through such tough times, ironically, it becomes much easier to find the joy in everyday in the weirdest and most wonderful of things. Ivy too, has filled our world with endless amounts of joy and that surely is never ever going to be something to be sorry for.




Day 28 - Love
And that's a wrap. I hope you have all appreciated the raw honesty and transparency this challenge has brought out of me but I also hope you don't mind that we now return to service as normal. I do not enjoy talking about the stark reality of Ivy's medical conditions anymore than people enjoy hearing about them and that is why I choose to exclusively put out the good bits of our life the majority of the time, just as I'm sure many others do on social media. I do hope though this month has opened up people's minds and hearts not just to our story but to anyone who is facing daily struggles behind these little squares, regardless of how much they have publicised them. Some are similar to ours, some are completely different, some are spoken about and some are not but that doesn't make any of them less important. Of all the emotions that have come to light for you and I this past month, I really really hope that the core one you can see is love - how much Ivy loves life, how much I love my little girl and how the love we all share with each other in this world makes our life the amazing one that it is.


You can read all posts about Ivy's heart here