When you’re going through a very complicated ongoing medical journey, there are many dates that stick out in your mind every year. Most people would say that the actual diagnosis date would be the one that really sticks out. For us however, the official diagnosis of cancer took so long that I honestly can’t remember the date! By the time they told us what type of cancer Liv had, we’d been living in the hospital for 4 weeks and were dealing not only with the cloud of unknown over our heads, but we were busy focusing on helping Liv learn to walk again, use the toilet…you know, all that fun stuff! (If you want to read Liv’s story of that time, you can do that here and here.)
For me, there are two dates that stand out. The 17th May, which in an ugly coincidence happens to me mine and my mums birthday, is the day that we rushed Liv to the emergency department for the 4th time, and where finally, FINALLY, they admitted Liv for tests. From there, we didn’t leave the hospital for 7 weeks. So for me, the 17th may be my birthday, but I find it hard to think of it as anything other than the day life changed forever.
The other date is today. The 19th May. Two days after Liv being admitted to hospital. That horrid day when an MRI showed up a brain and spine that completely baffled every single specialist that looked at it. The day that we were told that our 5 year old daughter “probably had cancer.” It was also the day that I asked if my baby girl was going to die, and the response was, “We don’t know.”
That was 5 years ago today. 5 years ago when the bottom completely fell out of our world. So I find these 2 days hard, really hard. It doesn’t help that bad things have happened on these days almost every year since, but I suspect these days would be hard regardless. I’ve had many well meaning people say to me that I should be positive and see how far Liv has come in these 5 years, and that is absolutely true. I think everybody knows by now that I could not be prouder of my girl. She’s an amazing and inspiring kid that tries so damn hard to fit into the mould that society calls normal. Her daily struggles are real and she works damn hard to function. So yes, it’s probably a day worth celebrating. But I can’t. I want to, but I can’t. My mind is constantly thinking of that day, that hideous scan, those awful words. And worse, I keep thinking about how we’re five years on, and she still has cancer. Her brain and spine are still a mess and her life is still more challenging that we ever expected it to be when we held our precious baby in our arms for the first time. And not challenging in a good way, challenging in a way that makes me cry when I think about how hard her brain and her whole body has to work everyday to cope with things that are so easy to most people.
I know that a lot of people won’t understand it, and that’s probably a good thing, because the people that do truly understand this feeling, are people having the same struggles and feelings. and I wish that there were less of us out there. To those people, I won’t say “be positive” because I totally understand that some days you just can’t. And I think that’s ok. It’s ok to not be positive all the time.
I think overall, I’m a pretty positive person when it comes to dealing with all of the medical issues our family has been dealt. So when weeks like this week hit me, where I feel really dragged down by it all, it shocks me. I don’t know where to hide and I don’t know where to run. But tomorrow is May 20th. I’ll be past the two dreaded dates that I hate so much. So I will pick myself up and keep on swimming. Tomorrow. I can’t today.