12 years ago today we were given the news that Lauren had cystic fibrosis.

I can remember sitting holding Lauren sat on a blue chair next to Jonathan, he’d just arrived. He sat next to me on a harder blue chair. The nurse Debbie came over and sat down and just blurted out ‘Dr brownlee called with the results and she has tested positive for cystic fibrosis’. Jonathan’s sinking eyes bring me to tears even all these years later. I knew it was coming. Dr Brownlee had told us some things to look out for and I’d seen them already (& tasted her- she was extra salty when I kissed her). I knew it in my gut from day one that something was wrong with her. I did not know what until we’d met him but I knew.

Fear settled in and in all honesty it robbed a lot of good times and days because I always felt this sickening feeling that time was always just running out so fast. I hate that I lived in fear. But I did.

Why am I even writing this? Well, I really need to process what I feel now.

I’ve had some haunting days where my mind has wandered, not too far unfortunately, to a dark place of a world without Lauren. A place where I have thought about her funeral and hoped it would do her justice. A place where I thought about how I would try to survive without her. I couldn’t shift those feelings. I was haunted by those thoughts. They played over and over. We always took more pictures than normal because I needed them to hang onto should the worst happen.

That was my home in my mind and I hated it.

When we heard of the new drug in America called Trikafta being tested, there was a small hope. But Laurens health wasn’t good and I wasn’t sure she’d make 12 (the age patients could start this drug). Jonnie kept optimistic. I just kept trying to keep her safe daily.

In 2019 when people started sharing stories of how this drug was flipping their life upside down in a good way, I started to be more hopeful. Then Laurens health drastically improved. Lockdown happened and the less effective drug Orkambi was introduced but it really didn’t have my heart. I nearly didn’t start her on it. But I felt prompted in May that we should and so I agreed. And then through the summer more and more people received the drug called Kaftrio here in the U.K. on compassionate grounds. This was changing their lives!! And it was close to home!!

I remember being sat at church, colouring. Jonnie brought Lauren round the corner and told me the drug had been approved already by the NHS for release as soon as the Liscence was given. WHAT JUST HAPPENED!!!!!!!! 😲😃

I started crying. I couldn’t help it. This was becoming more and more of a reality and I might not have to bury Lauren whilst she’s young. We might get her for so many more years!!

It was approved in Sept 2020. We had to wait until she was 12 in the December. But lockdown and shielding at the time kept her so safe and protected whilst her body became stronger and stronger and in prime condition to start this drug.

She has to cope with it and her liver cope with processing it before my last sigh of relief will be given but her lungs sound healthy. She has more energy. This is just the beginning!!

Thinking about having to plan your child’s funeral, let alone losing a child for those who have (I cannot imagine), is a horrible and depressing state to be in. I lived in it for too long. 12 years. I feel this enormous weight lifted. I feel light. I feel relieved. I feel excited and I can’t wait for all of our adventures yet to come. We’re planning more and more for the next house and long term-Lauren with us!!! It’s so exciting. Life will always be tough. In some ways. Yes. But I will take all the challenges to come as long as she’s here with us.

Wyatt should be on the same drug before he’s 6 and he will grow not knowing the adverse effects of this disease. I can’t even tell you what depth of gratitude we feel. I thought he would grow up resenting us. Life has a very different outlook now!!

I wish I could thank those people who created this medicine. I love them.

A xx