In | Me and Mine Project #11

May 2017




May's been a little bit odd for me, but despite being tainted with sadness and unrest in my own head and across our wonderful country, we have of course found those moments that keep us all going and we have chosen love. 

I think it's finally become apparent to me that the adrenaline of the past year may have dipped. I am proud of myself for how I have dealt with the many huge life changes (with incredible help and support of amazing family and friends) but in the last couple of weeks I've let some of my emotions get the better of me and I have not recognised a lot of myself. Silly really, as I am so lucky to have the two most wonderful children, a partner I could not love anymore than I already do and everything I have ever dreamt of which is so much more than so many others have but worry and anxiety have trickled in (and at times have taken over) and I have found that very hard. It's taken it's toll on me my confidence and sadly on an extremely patient Michael. I decided to try and switch off as best I could and concentrate on my precious family unit and can't tell you how much better I feel for it. 

Ivy has not been in great health this month and it's her rapid decline I have struggled with most. Have I done enough to support her? Fight for her? Gladly I can say that by the end of the month I think I can say I have but could I have done it faster? I am learning more about Ivy's PLE (protein losing enteropathy) every day but with such a rare and un-researched diagnosis it has been difficult to take it all in without as much support from professionals as I'd maybe hoped for. She is due various medication changes and interventions in the near future but I just need us to move forward in any direction and I'm hoping something will begin to improve her quality of life. We're fast approaching a year since her operation and I still feel she is struggling more now than she was before. After being told her fontan was going to give us as close to a 'normal' child as we could ever expect, this has been tough. This has also made it very difficult to distinguish whether some of her more difficult behaviour is related to the awful life she has had to live or whether we are just going through what every preschooler does. 

But for every moment of worry, I've had more that have been full of the joy that I really need right now. We've spent so many days out in the sunshine with such special people and have even more of that planned for June. We are off on holiday next week - a very well needed break away from reality and then have the pleasure of a big birthday to celebrate and a trip to the coast to finish it off too. 

People keep asking me how I'm coping with two and that's the aspect of my life that I do feel I am coping with and enjoying more than anything. Ted has once again kept me afloat in ways he will never know and watching Ivy mother her baby brother fills my heart with so much love. I've managed to get them to both to and from London alone, get out of the house with them both before 7am! And slot Ted perfectly into our everyday life without too much fuss. So far, he's been a very easy baby, though not much of a baby at all as he is already answering back in our conversations with the most gorgeous coos, at just 2 months old the little bugger has mastered rolling over and he's already taken quite the liking to heavy rock (Muse and Foo Fighters being his favourite calming tools) People warned me that time goes even faster with the second and despite believing them I didn't realise just quite how fast and I am just trying to enjoy every moment that I can.