March 2020

Oh Grace you gave us a scare there. When I came downstairs last Saturday I just knew something wasn’t right. Your breathing was strained and you just wouldn’t settle, it’s so not like you to cry like that. Within half an hour an ambulance had arrived and we were on our way to hospital. At first we thought it might be like when your sister ended up there a few years earlier, a chest x-ray, bacterial infection, antibiotics, a few hours monitoring, then home. Instead, as the day went on your breathing didn’t improve and by the time we reached evening they said you’d been working so hard your little lungs might not be able to take it anymore. Machines would have to breathe for you while you fought the virus.

We sat and held you as struggled for each breath and they got you ready to put to sleep. The doctors and nurses buzzed around as my head was spinning, I pushed back the tears as I tried to reassure you that you were going to be ok and you looked back at me terrified as each one prodded and poked. They asked me to stand while they put the tube in but while my head knew I needed to be there for you my legs wanted to give way. I didn’t want anyone to loose focus on you so I asked the nurse if your dad could come in and I went out into the corridor and fell to the floor. I sat and waited in the corridor putting on a brave face for Evelyn who was still pretty much oblivious to what was going on. Half an hour after the transfer team arrived they wheeled you out. For the first time all day you looked calm, fast asleep, the little tube down your throat giving you the oxygen you desperately needed while your body recovered. We walked out with daddy and Evelyn before they gave you a kiss and the blue lights guided us to St George’s hospital in Tooting. Grandma and grandpa arrived the following day to help and for a week I slept each night in a room across the corridor, while daddy visited each day. We took it in turns to be by your side as Evelyn stayed at home and we tried to keep life as normal as possible for her.

The staff were wonderful, explaining everything in detail and giving me peace of mind each night that when I went to bed that you were in the safest of hands. Despite this the week was a rollercoaster that I never want to ride again. As we waited by your bedside numbers jumped about on the screen, alarms went off all around us and the nurses constantly changed oxygen levels, sedatives and suctioned out the mucus you couldn’t move yourself. Every so often as the sedatives wore off you would open your eyes, you’d try and cry but no sound would come out, only silent tears that trickled down your face and my heart broke. You distrusted anyone wearing those blue gloves and as soon as they came close you struggled with every last drop of energy you had. I repeated over and over it was going to be ok as we pinned you down and stroked your hair while, your eyes filled with fear and desperation.

After three days they attempted to remove the tube but it was clear straight away that you still couldn’t do this on your own. Within an hour the tube was back down and you were sleeping again. Although your lungs were improving and the infection markers were going in the right direction the tube had irritated your throat and it was now swollen. We waited another four days for the swelling to subside before they attempted again. I woke that morning with a knot in my stomach, I felt sick and prayed this time you would be strong enough to see it through. Your dad arrived early and we sat nervously waiting. It happened quickly and as soon as it was out I could see it was different from the first time, your lungs seemed to be coping. As we held you the life began to return to your body, by late afternoon you’d guzzled down milk for the first time in over a week and by evening you were moved off the PICU and onto the children’s ward. Over the next few days you began to sit up on your own, you stood with the help of the cot bars and then tentatively took your first steps. Finally eleven days after arriving at the hospital we got to take you back home.

December 2013

Up until my diagnosis I’d walked a fairly standard path. School, university, met your dad, bought a house got married and was hoping for 2.4 children, maybe even a dog. It was a similar path for many of our friends and family, so it shouldn’t have come as much of a surprise that when we had started trying for a family they were all getting busy too.

Within the first month of my operation two friends arrived to visit, bringing with them gifts, hugs, kind words and the news of pregnancies. It was like a knife to the heart. Of course I was happy for them, truly I was, but it hurt so deeply as I wore a false smile and congratulated them on their happy news. There’s a radio ad on at the moment for a travel company that talks about ‘hate-likes’. (As an aside I think hate is a pretty strong word in this situation but the sentiment is the same). It’s referring to when you like a photo that someone has posted of them having a wonderful time on holiday while you’re sat on a bus in Blighty looking at this beautiful image all the while wishing you were there too. I wanted my friends to be pregnant and happy but I also wanted to be there with them, experiencing that excitement and I couldn’t, I was never going to be pregnant.

It’s a pretty established fact that the more you want something the more you see it everywhere. Mums with buggies filled the shops wherever I went, I’d never noticed them before but now they were everywhere with hundreds of kids. There were all these maternity sections in shops that I had never clocked before. Happy, healthy families adorned the covers of glossy magazines and pregnancy announcements came thick and fast. In the 18 months before my diagnosis I could count on one hand the number of people I knew with babies, in the 18 months after I needed all my fingers and toes just to keep up.

It didn’t get any easier each time the p-bomb was dropped. I was jealous of those who weren’t even sure if they’d wanted kids, those who fell pregnant on their wedding nights, those who weren’t even really trying when it happened. Each time I’d fight back the tears and wish the moment away. I still knew if I survived this I’d be a mum but it wasn’t going to be straightforward. For us, having a family was going to take a lot more time and effort and probably a substantial amount money to get there. I was tired, after all I’d been through I wanted this to be easy and it wasn’t going to be.

I don’t doubt it was hard for my friends too, should they share with me their excitement or not, should they hide their tummies and pretend it wasn’t happening or perhaps avoid me all together. When the babies started to arrive and I’d visit for cuddles, I’d often see in their parents eyes an anxiousness, were they wondering whether I’d be able to cope, would I break down, would they have to step in and take back their precious bundles. But it didn’t make me sad, I loved each and everyone of those cuddles and the more I had the more it made me even more determined and reminded me of something I already knew. Never underestimate what you can achieve if you really want something and by that I mean really, really want something with all your heart and mind. If that’s the case you put aside the doubts, the what if’s, the fear of failure and you get out there and fight for it. Because when you want something that much no amount of effort or time is too much and no stone should ever be left unturned.

I already know you are one of life’s fighters. On the first day in the ICU after a morning of keeping her on her toes the nurse announced with a smile on her face she would have never taken you on had she known you were a red head. She had this theory that anyone with red hair always needed more sedative and you certainly needed a hell of a lot to keep you under. From the moment you were conceived, you fought to be here, through a double freezing to be our last shot, if I known then what I do now I would never have had any doubts you would have made it into our arms. My darling girl you are one of the strongest people I know, now, go change the world.

Forever & Always,

Mum