There are many dark clouds each and every day for me and my little family. You don’t see them. They hang over just us 3, and we’ve learnt to keep searching for the Silver lining amongst them. It’s not easy but here are just a few examples of what I’m talking about….

The dark cloud is that my beautiful little lauren cannot go a single day-scrap that-a single meal even, without medication. It would leave her with such bad stomach problems bless her heart. It hurts her little tummy if we mess the dose up a little (“Then don’t”- I hear you say-I’m awesome so I clearly wouldn’t do that on purpose….it’s just a complicated dosage system and without knowing exactly how much fat in grams is in food then sometimes we get it wrong 😦 ), but if she went a day without her numerous medicines then instantly her poor little body is as to germs and bacteria as honey is to a bee, irresistible. Even whilst on the medicines, she gets sick too much. So no single day do we get to just relax and have a stay in bed day or lazy day doing nothing, there is a routine and it is here for always and always. Oh man just writing this I’m welling up. It’s a huge burden. Sometimes I start having a little panic attack at how much I’m in at the deep end and suddenly can’t swim. It’s a weight upon my shoulders that I’m learning to carry.

The silver lining. Is there one? After that, it doesn’t sound like it does it?! Of course there is, and it’s exactly what I wrote above. We have a routine. It keeps Lauren alive, relatively well, and she gets to eat and have her digestive system process such foods because of modern medicine. Not that many years ago we’d have lost her already to CF because there wasn’t such amazing treatments out there. So the silver lining is there is purpose in each day for me with this routine and I see the big picture with every antibiotic several times a day, each vitamin and supplement for her liver, and each time she’s eating and I have to search frantically for the creon because, yes, I forgot for a second she can’t just eat something and be done with it.

The dark cloud could be that Lauren cannot communicate by speaking. This is hard. But my silver lining here is immense. I know Lauren so well that even with just a single gesture from her I can tell you the sentence she is trying to say. I didn’t know you could know someone so well. But we have conversations. She speaks a thousand words to me with a few looks and glances and gestures and pointing. Our souls communicate. I don’t know that I would have that level of connection between me and a ‘typical’ child. I’ve witnessed others thinking that she’s disabled so can’t be that hard to know-so I know what she means and it’s this…..and they have been soooo wrong. I never fail to correct them, because she has a voice, it is just expressed differently to ours.

The dark cloud could be the fights we undertake to get the best for Lauren. The silver lining is that I have slowly built a small army of amazing people all on Lauren’s side during these struggles and know exactly who to call for things now and who will be in our corner. It is a formidable team!!

The dark cloud is definitely the sleepless nights we have with Lauren. Lets just say when I’m awake fully I’ll keep searching for the silver lining here…………….

Another dark cloud could be that when I see her cousins mostly, achieving all that they achieve and recognise Lauren will not achieve those things quickly, or perhaps ever. It is a hard one. It’s hard but the silver lining is – it is probably only hard for me, and Jonathan. Lauren does have her aspirations. To walk and talk I’m sure of it. I can almost guarantee you though, that she does not care if she gets to do sats and gcse’s, and other work that will have no relevance to her life anyway, because she is happy with exactly the kind of work she does do and learning at her pace. She doesn’t care that it’s not the same, I’m pretty sure it goes completely over her head that all their work and such is different!!! So I should stop letting those things matter. Just rejoice in my nephews and niece and their achievements and like wise my little Lauren.

A dark cloud could be being anxious and scared to take her places because of germs the average person wouldn’t even consider were about, but I know oh too well they are there and dangerous. Going to people’s houses for example, I try not to take her to many. In damp, or stagnant water (water over 24 hours old), in fresh flowers, or around sinks or on bars of soap, in sponges etc, is a killer germ. Going outdoors on days out to farms is so easy for most, but straw and hay hold another deadly germ. Just two of some of the things we have to think about. It’s ridiculous! The silver lining here is how understanding my family and friends are. Flowers have been thrown out, sponges gone, farm days and outings mostly done without us knowing so I don’t get down about Lauren not being able to go. And of course the fact that family and friends learn about the germs, and dangers so houses are Lauren friendly. It matters. Because if I feel a house is not suitable, she will not under any circumstance go back. And this is not saying a house is dirty, it’s just some environments are safe for us and not for Lauren, and we as her parents have to choose!

I was looking for another dark cloud contrast here but have none…

A beautiful silver lining is the love she spreads, it was said recently by a staff member at her school, upon Lauren’s return…”oh I’ve missed your smiling face Lauren, it really brightens up my day”, what more of a mission in life could one possibly want for their child, than to to make it a brighter, happier more beautiful place to be? None is my answer….