Whilst we were in hospital with Lauren, I remember one day turning to Jonathan and asking him did he think there was something wrong with her eyes…he answered (this is Jonathan’s positive answer to everything), no they’re fine. I brushed off my feelings. However, I had noticed that they were a little ‘off’, couldn’t quite figure out what I thought with her being so little and poorly.

When we were back for the second time in Jimmy’s Dr Tim Lee came to talk to us and said the nurses were a little concerned that when they walk in the room she doesn’t seem to be following them, so wondered what we thought about having an eye test whilst we were at the hospital. I responded with “that would be good, I’ve noticed her eyes aren’t quite right for a couple of weeks now but didn’t really know who to talk to”. He arranged an ophthalmology appointment and at nearly 8 weeks old now, we were told our baby ” obviously isn’t seeing, but they eye looks fine so it would be worth looking at her brain”. Thanks for that! I have come to appreciate Mr Vernon Long’s brute honesty, but I was fairly fragile at this point so along with an invasive exam that left her screaming, me scarred, and him crushing my soul a little more, this Friday was not a good one.

I look back and can see Dr Lee’s face when he came back to talk to me and his face said everything, he tried to be positive but he knew as I did that something was up. We got to go home again this day. That was a mixture of nice and an overwhelming feeling.

The MRI was March 24th and I fed her and rocked her to sleep and they did as much of an exam as they could. I obviously couldn’t go in with her, story of our lives thus far it seemed!

We got the results approximately one month later. We were at a routine CF appointment and a GP Dr was seeing us for all the CF stuff but he then said, I just need to go and get Dr Brownlee. Dr Brownlee came back with a piece of paper and read us Lauren’s MRI results. I had no freakin clue what any of it meant. He explained as best he could, but said we would now be referred to Genetics and Neurologists and the Child Development Centre (CDC) at Airedale.

I was completely numb. Even if I had wanted to cry in that room I don’t think I could have. I knew there were some serious issues but went into lock down emotionally. 9 weeks ago I had no idea what complications could possibly come along and now had all this new information we were meant to get our heads around!

No answers came quickly, and I paraphrase a couple of years here because it took that long, but basically they took our DNA and Lauren’s and did a lot of tests. Lauren had a misprint in one of her gene’s called the TUBA1A gene. Neither of us had this misprint and so it was new in her and it’s part of the genes that form the brain. They hadn’t seen this misprint before but others that had similar misprints had similar issues. Her little brain had many a problems!

Once we met with the genetics guys they went through the different bits that were different and told us what they meant as much as possible. Lauren would have learning disabilities. She would probably have physical disabilities. Her sight problems were also down to the problems within her brain. She has a small chance of a cyst at the back of her head causing issues and her needing a shunt put in. This is a small chance and one I tend not to allow myself to think about. I looked all of the issues up on my own, and the more I read, the more incredibly grateful I am that Lauren doesn’t suffer with some of the things posing a risk. She doesn’t have epileptic fits. And I pray to high heaven it stays that way. She can coordinate her hands between each other and technically the two sides of her brain shouldn’t be able to communicate with each other. I have a very educated opinion (things they’ve said, looks they’ve given) that the Doctors expected more of a in abled bodied, vegetative state of a person who wouldn’t be independent in many things at all, if any.  My Lauren was put on earth to change people’s hearts though and to do this she would need to be able to communicate her love. She’s determined to be her own person and do the things she loves to do. She knows herself and her likes and dislikes. She can think, something that should be seriously impaired. Lauren can see. She can see grains of rice, she can see flowers, pictures, people and places. She shouldn’t technically be able to see. But I think that one is down to a pure miracle, a gift from beyond my capabilities. (I’m trying not to inject religious views here at all, but I see miracles in her life, that no Doctor gave, I certainly didn’t, but I feel I know who did. There will be a few spiritual inputs because this is about who we are and our faith entwines with what we believe so there will have to be some, because my little Lauren came straight from Heaven and I feel so much peace knowing that).

So decision time for me….

I was driving Lauren home from that appointment with Dr Brownlee giving us the results, having just dropped Jonathan back at work and I broke down. Lauren was in the passenger seat next to me and I was trying not to cry out loud because I didn’t want her to hear me. Well, she knew something was wrong and kept lifting her head up and ‘looking’ over in my direction. It hurt so much for so many reasons, but at that moment, with her being so concerned for me I decided something that I try to practise every day. I decided I would not let Lauren ever feel like she was a disappointment to me ever. Because that wasn’t why I was upset. I loved her, all of her and nothing changed that. So I decided that we would fight, we would try, we would persevere, we would achieve, and I would not let her feel disappointment from me, either by my face, or my feelings. She would only know love. She would be surrounded by it. I would deal with my stuff separate to how we would deal with her issues together.

I don’t know how well I’m achieving this but I try every day still because that’s what she deserves.

The bumps in the road didn’t stop, Lauren has one leg shorter than the other so only gets to wear piedro boots from orthotics, she has psoriasis in her head, and since she was 18 months old she has pulled her hair out to the point of balding herself.  She is a complicated little girl!!

I have just had to look at things with an “are you actually kidding…..could you give us a freaking break now” kind of attitude and just be grateful Lauren is who she is.