Just lately I have been dealing with some demon feelings, feelings I’m all too familiar with. Worried and fear and ‘why us’. You know something? It’s ok to feel all the stuff that comes your way. I don’t know if there will be a time when I can rest knowing that whatever comes my way will be ok because my brain goes straight into how on earth can I fix it. I do have to work on my faith and knowledge that I’m really not in charge of much. But the bit I am in control of, I like to try and control to perfection. It actually sends me insane trying to do that but my muscle memory if you will, takes me straight there.

I will never be past the feelings of how I wish so bad it was different for my children. I will never wake up thinking that this is ok. It will never be ok. I’m not ever going to stop grieving for a life without cf. I will never wake up thinking that this was the best thing that could have happened. Because they are my children. I will never have a day when I’m not worried sick. I never do have a day when I am not scared for their futures. And I don’t want to because I want to always love them like this.

What I do want is to do is train myself to channel my anger, at their misfortune, to somewhere more positive of doing and learning and conquering our challenges. I want to train myself that when all is said and done, I leave the rest up to my Father in Heaven because I need to train myself that I’m not in control of very much. That in itself is just terrifying.

Lauren has some issues lately, some of which cross over, some separate from cf. It’s hard graft. It’s a scary unknown journey and we’re just trying to survive day to day most of the time.

The choice to have a peg feed is because she lost 1.1kg in the last 8 weeks. She’s not even on the weight centile chart now. We gave her 2 years to prove she could do it herself but she can’t. So I will have no regrets. But I will be sad. I will cry and I will wish it could be different.

Her cough hasn’t gone. We’re giving her medicine that we don’t know works. We’re hoping it does.

Her infection hasn’t gone and we’re gambling that she needs a break from meds. We’re hanging on by a thread that this is the best action right now and we need to let her get strong to see if she can fight it.

Her iron stores are so low they’re practically none existent, she’s on horrid but oh so necessary iron to get them back up. Her laxatives will increase no doubt. We’ll have more accidents and she’ll feel worse during the course of those accidents. I will need to change more nappies. She will fight on each one.

This is her life- complicated and full of challenges. And I’m ok being sad about those things.

The great thing about being in a family is that you’re not alone, all the time, in those feelings. Jonnie feels those things too. Quietly most of the time, but he feels them. And he walks by my side daily as we do what we do and get on with it. We try to live and give our children the best experiences available. It is hard work. Exhausting in fact. But when Lauren brightens someone’s day by waving at them, or showing them her coloured ribbons, I remember that life is so simple to her, love and be loved.

I know that physically life is hard for her- but her need to interact and love others is so much more than wallowing or self pity. Puts me to shame most days. She is a sunshine that this world needs. And she thrives off the smiles and interaction that she gets back. I’ve forgotten that for a while but over the last few weeks I’ve noticed more and more that she’s still as beautiful as ever. Probably even more so considering she should just want to be in bed all the time!! And in no way will it ever define her how people treat her back- it will only ever define them.

It’s hard work spending time with her a lot of the time but when people do- their lives are blessed.

Im not sure life will ever be easy. I probably am- it won’t be easy will it. As long as both my children are here for a very long time, that’s ok with me. I’ll live it, sometimes be angry with it, but be grateful I have them. So very very grateful.

💚💜💛💙

April