Change is a funny thing. It happens all the time and yet I thoroughly hate most of it. Time goes too quickly for me. People come and go from our lives more than I’d like. I feel an urgency of my time here on earth and the things I want to do.

Lauren and I were out yesterday in Ilkley and spent a few hours in the park collecting leaves, playing on the swings and roundabouts and eating our food. It was quiet. There was a crisp cool to the air whilst the sun was shining. It could have been a fresh new spring day and I could have fooled myself that summer was lurking if it hadn’t been for the leaves falling and changing colours all around us. It got me thinking how this year hasn’t been too different from others for our family in most ways, and yet in others there’s been some real shifts in our family dynamics.

Lauren’s health is as the seasons. It can change day to day especially at the minute. Mycobacterium abcesses is a seriously dangerous bacteria. It is also called non tubercolosis bacteria. It can be agressive and cause such damage to the lungs that transplant is needed, and can unfortunately take a life of those it gets hold of. My personal journey trying to come to terms with what we’re fighting has had it’s own seasons of fear and tremendous anger, and then a new leaf of fight within and finally giving my Heavenly Father some of my Faith that I’d perhaps lost a bit of, and a whole heap of hope that Lauren has so much more time here on earth that we will be OK and she will overcome this infection. I still get days where I feel despair and feel like I have to fight out of that mindset. I’m lucky that she requires so much attention- it helps my focus to be on the good stuff mostly 🙂

Marriage is a complex thing. By no means do I wish to sound flippant, but ours has had some major bumpb in the road-and it’s 90% been around trying to deal with all of the issues Lauren faces. We deal with things so differently and we have struggled to trust that the other will help us and be there like we need. This year we have had some therapy together. All I can say is I wish I’d done it before now. It’s been life changing for Jonathan and I and helped us get back to where we know we are-inlove with each other and perhaps more importantly there to care for and about each other whilst we journey on our rollercoaster together. Lauren is so intune with people’s feelings. She picks up on sadness and despair far quicker than anyone I know. Not just ours-those around her at all times. This actually helps us when we’ve been cross. Having to hug her and be kind in front of her. It’s catching!

Lauren’s schooling has changed. She became sad to be going to school. If you know Lauren, you know she’s never been sad to have her own time and independence away from me haha! Not even at nursery. So when she started to fight me every single morning and cling to me not wanting to go into school, we knew they were failing her beyond what we had even thought.  So whilst already having plans in place to move her, we pulled her out of school and currently trying to home school (Trying my best ha!!). Do you think she likes shopping at Eureka???!!! 😄😄

The special school refused to take her in the end because they couldn’t find a ‘suitable peer group’. It’s utterly ridiculous. There are plans underway to combat this but we are re grouping that maybe this just isn’t what’s meant to be. We don’t know what the future holds for her. We’ll keep searching for now and hopefully we’ll come across a school that just fits.

We are of course elated at the results from last weeks CF clinic. Weight up 1KG and Liver scan clear (we’d more or less thought it would be), and even more so we got updates on new CF treatments that will be available at the end of 2018 that will change the way we manage Lauren’s CF completely and in a very positive way. It made both Jonnie and I quite emotional that we could actually be in the running for drugs that could keep Lauren healthy and healthier than she currently is-continually! It’s so exciting. We just have to get there and keep her well until then!

It’s funny how friendship changes too, some get stronger and keep you going, some disappear as if they weren’t even there. Some become acquaintances and you wonder if you ever knew them. Same with family relationships. I feel like I’m in a constant whirlwind with who wants to be kind and my friend and who wants to stay away. I can’t help how my emotions are constantly up and down as I try to comprehend and process Lauren’s health. I think about it all the time. It’s relentless. I also don’t feel like I should have to explain myself to people all the time either. Yet right now I feel like I need to defend that Jonnie and I have a tough road to walk. It’s a constant need to try stay strong, deal with the next thing. I don’t always look happy. I try not to be unkind though and I do say I’m sorry if I have done something wrong.

My lovely hairdresser and I had a conversation recently where we have had some similar issues arise, and she simply said she just worries about her and her husband and her children. Those in her four walls of her home and concentrates on that as you can’t control anything else really. That is exactly what I’ve been trying to do. It’s tough, because in these four walls when Jonnie isn’t here (he’s been away alot with work!) Lauren doesn’t speak so it can get lonely, but I do have some great friends who don’t mind listening to me (I don’t think ha!) and I’m super grateful for them, especially over the last 6 months when things have been most difficult.

Change is inevitable. Life is exactly that-Change. It’s how we adapt to those changes, and deal with our own personal change along the way that will lead to happiness or sadness I guess. I’m trying to stay in the mindset that I can only control me. Don’t get cross over things that happen-look for the lesson. I think I’ll still be trying when I’m 90! But I’ll still be trying. That’s what matters in the end, did we keep trying and did we embrace what life throws at us in all the seasons, come sunshine or rain.