A little over 5 years ago we were given Lauren’s MRI results. These words were said but had no meaning to us at the time; Pachygyria, Schizencephaly, Posterior Fossa Cyst– which is a Dandy-Walker Variant. Not the syndrome in it’s fullest; Agenesis of the Corpus Callosum, and at least two areas of the brain that were under developed. The last being the hardest to remember which bits for some reason.
I remember feeling completely numb when the Doctor read those results to us. Until later that day I dropped Jonathan back at work and then just broke down. My world was quite literally turned upside down. She had already been diagnosed and we were living with Cystic Fibrosis. Life seemed it’s most unfair that day.

The Doctor told us not to look these things up in the internet, but months later when no one would talk to us properly about them, I did. If you read some of the literature then you’ll understand why I started to feel like Lauren’s future was incredibly bleak.

It took time and processing and some concious decisions to decide that as a parent I would focus on Lauren. I would somewhat forget about these labels and push Lauren to do things and achieve things, until she decided what her limits would be. Not every day was like this and I could never describe how low I felt some days. But overall I decided I would never let Lauren feel like she was a disappointment at all, not even a tiny bit. We would expose her to things any child would be, we would do all the things normal families did and experience life as full as possible. None of this was easy. Amongst many tears, Doctors appointments that we had to attend, and other people’s attitudes and perception of things, I literally found it hard to get up and try to psyche myself up to go out and get on with daily life some days. Lauren is the very reason I did those things.

If I had limited Lauren, because technically she wouldn’t perhaps walk, she might have seizures and/or need a shunt in her head, she has CF and that is a pretty scary world in itself; if I had limited her because of these things, Lauren would not be the child she is. She LOVES to socialise, be outside, do fun things like swimming and riding her bike, being around her family. She is very literally the MOST happy person I have ever come into contact with. There is no one I know that finds Joy is such small and simple things and then spreads that Joy with a smile and laugh and with love that I just can’t even comprehend. She comes with no judgements, she loves everyone. She says hello to everyone who she sees, in the hope that they’ll smile back and say hello. She is amazing. I could go on forever about her. 

One of the things I’ve learnt most with having Lauren is that you just keep going. When you have to go to 49 appointments in one year for her, when she’s still not walking with her frame by herself and each day you have to practise, knowing you’ll regret not giving her the best if you don’t, when you never once, not a single day of her life get to not give her medicines, when you have to put ugly orthotic shoes on her instead of beautiful pink girly ones that she just loves, and when you feel fear to your very core that out and about she may pick a bug up and end up in hospital, (but if you don’t take her out you’re denying her and others a happiness found no where else), well, it’s those moments on a daily basis that I have to remind myself that you just keep going.

We are not in control of everything, I would love to be, but I am not.

If I lived by what Lauren’s limitations seem to suggest we should, life would be so miserable. More miserable than I have felt when she’s ill and throwing up, and coughing through the night, or hooked up to IV’s, or when she was laid in an incubator. It would be so much more miserable, because that would mean I would miss her and her Joy that she spreads, and nothing is worth that.

I don’t know what Lauren’s future holds health wise. I can’t know. Her disabilities should mean that she is one of the more ill CF patients. Yet thankfully she is being blessed to stay well at present and seems to keep on thriving. But no matter what happens, no matter how haunting life seems with things looming over us we just have to keep going, spread a bit of Lauren joy and hope for the best. There is always a light at the end of the tunnel, even if it just around a corner. Keep going!!