The two weeks Lauren stayed in hospital this time around were perhaps the toughest two weeks for me that I have had in a long time, in any of my life’s challenges. I think it broke me. When muscles are torn and put under stress, they can repair much stronger. I hope the same of me, my faith, my love and my ability as a mother and wife.
Maybe you wouldn’t swap with me to deal with my issues, but as a lovely lady I met once said to a large congregation ‘I wouldn’t swap for yours either’ (Pat Smith 2001).

As a parent of a child with Cystic Fibrosis, I know my child was born with her death sentence. I don’t need anyone to tell me how precious life is. I don’t know how long I have her. Writing these things down always makes me cry because lets face it-that is as cruel as life can be. It isn’t information that I get to forget. Every day the thought pops up. I make sure it doesn’t get to stick around as best I can though because I try not to be robbed by negative thoughts and feelings, of my time with my Lauren. She is AMAZING. I need to actually be like her. I push negative thoughts away as much as possible because I want to enjoy her, and cuddles, and laughing, and that Yorkshire of Yorkshire accents ‘Mummy’!! hahaha!!! Oh man, I LOVE hearing that word come from her mouth. I want to plan things and help her enjoy every minute of her life. If that could be the case and the positive always win, then I’m sure I’d have no regrets later on.

It’s the every day things that weigh me down though. As soon as I’ve pushed one thought away, I have to get Lauren’s meds ready, or physio done, or arrange another appointment and something creeps back in to stress me out, make me slightly grey-er and give me more worry. It’s exhausting with all her complex needs in one. I’m tired. ALL the time. Jonnie is tired ALL the time. We are mentally exhausted, physically exhausted and then on top of that we had a two week stint in hospital with a very poorly Lauren to somehow deal with.

I can assure you, we don’t feel strong or inspirational. We cry, and get annoyed with each other….OK, it’s me, I get annoyed with him. We are doing what YOU as a parent would do for your child. Or spouse. Or a friend. The love you have for someone dictates what you will do. 

Whatever Lauren needs, we are there. We are answering questions constantly about her, our lives, having to put on a smile for yet another person entering Lauren’s ‘isolated’ room. I hate putting on a smile. So I mostly didn’t. When I get to choose who and where and when, and meet some amazing people, I am relaxed and myself and can be pretty chilled. When my space is invaded and I get no say in it, people just annoy me. The end. Yet here is my child next to me who smiles at everyone, captures the hearts of doctors, nurses, physio’s, etc. And she barely says a word. She signs thank you to everyone, the ladies changing the bins, the doctors taking bloods. I just want to scream at them all to leave us alone. You barely get to dictate anything including how much sleep your child gets, and somehow you have to be polite. Well I fail miserably sometimes. Thankfully I also know how to apologise

We barely get a minute’s rest, between observations, ward rounds, routine bloods, weighing, bins changed, cleaning the room, the teacher that comes to see Lauren, the physio sessions, the meds being brought in, the puking child, who also poos for england when she’s on IV antibiotics, meal times that got REAL fun when Lauren decided she was too ill to eat and we fought non stop over it, then visitors (the only bit of interruption you don’t ever mind) and before you know it it’s nebuliser again and bedtime routine and settling for the night, time to try grab some food so your rumbling tummy doesn’t wake the sleeping child.

I’m slightly exhausted just writing it. People were so so lovely-with messages of encouragement, and love, and support. People asking what they could do. I wish I had a list of things when that is asked because I know what it’s like to want to help. But really the only things people can do were done. Prayers, fasting from church friends, cards and gifts sent to Lauren that cheered her up non stop, visiting when feasible, bringing me something if I needed it-or chocolate cake when I didn’t need it but we always want it :-D. Some sat in whilst Jonnie and I went for tea so we could eat at a reasonable hour, or brought us food. Some people came and sat and were just bored with us!!

We are thankful-SO very thankful for all of those things and consider them all a real blessing to be surrounded by such people. There just aren’t words big enough than thank you, that expresses what we mean. But thank you none the less.

So what happens when a situation feels like it’s breaking you? I cried. I screamed. I went through the 5 stages of grief. I can’t believe this is our reality. It seems so surreal. I feel alone. I feel angry at God. I feel like no one is ever listening when I pray. I feel like the most precious thing I have is going to be taken from me and I’m Pi$$ed!!!!!!!!!!! What helps when I’m like this. Nothing anyone says. Lauren hugs me. She is the only thing that melts my stone cold heart. It doesn’t matter what friends say, you can’t fix what my head or heart think or feel. So just wallow with me for a few minutes. I’m not asking for your logic. I have the ability to be logical. I have rational thoughts every now and then. But I also live this life and feel all those burdens that you would feel if it was your child. Mostly, just love us, and especially Lauren because when she is with people and they are loving her truly, and she is happy and smiling and laughing, my hope returns and a glimmer of faith. All is not lost when you know you will be with this soul for eternity. I don’t know why I get to be her mummy, I don’t know what I need to learn. I’m just hoping I get a thousand more years with her until I’ve learnt it…….

We are hopeful this horrible diagnosis will be fought well and will do everything and beyond to help Lauren do just that. My personal wallowing is done, fight head on. Get up and get on with it. It’s all that’s left to be done.

Broken things can mend and it’s usually through some form of love. My love is Lauren Esther Birch and I would literally do anything for that little girl.

 (Lauren with my phone-“Mummy”-then hand gestures I move towards her in the car-and takes a selfie hahaha!!)