When I heard the cat scratching on my bedroom door this morning, I stirred. She continued to scratch and I slowly climbed out of bed and let her in. It wasn’t until my walk back to bed that I remembered: everything fell a part this week. Within seconds, fear and panic, anxiety and horror washed over me, waking me from the normalcy I had just moments before. It’s what I hate every time things fall apart – that moment in the morning when you remember. It happens to all of us and I identified it years ago with things non-related to Izzy or this illness. This brief window in the morning, right after something terrible had happened, when I would forget the terrible thing. I would wake up just like I had on the days before the terrible thing, thinking how good coffee sounded or how cold my toes were. Without the terrible thing in our minds there is room for things of less importance, room for normal things. Then from nowhere, we remember: oh yeah, this terrible thing happened. We find ourselves flooded with tangible emotion as we are forced to remember. The brief window of normalcy is shattered and it gets shattered everyday for weeks until our minds finally accept the new normal. So what really sucks is, not only do we have to find out about the terrible thing the first time, we have to find out about it ten seconds into our morning everyday for weeks. Well played, ‘fallen world.’ Well played.
If you’ve been following us on social media than you know our terrible thing is that we found out about progression of disease in Izzy’s body. One day she was running and playing and the next she couldn’t walk, couldn’t move without excruciating pain in her right leg. Within days we were in the hospital two hours away from home and within a few more days we learned she had a virus in her hip. It was clearing up and we were so happy and then we learned there was disease so many other places. The leg pain ended up leading us to discover progression of disease and without it we would not have known for another month. To say this disease is bad would be a tremendous understatement but I don’t know what else to say without an extreme use of profanity.
Over the six and a half years since Izzy’s diagnosis writing has become my outlet. The more that is happening with her that I cannot find a place for in my heart, I have managed to find a place for in words. Once I put it all down, I rearrange it, read it over and then it somehow fits in my heart in a way I want it to. In a way I feel in control of. When I’m not writing much that’s because there isn’t much to control. Here lately I’ve found blogging to be so overwhelming but I’ve found writing tiny snippets on social media to be so manageable and so therapeutic. I’m writing today to catch you up to where we are and tell you how you can come alongside us in this journey:
1. I don’t have the energy to keep up with this blog the way I have in the past. Social media is going to be the best way you can stay informed of what’s happening with Izzy. Six years ago, five years ago….a lot of years ago I had a lot more energy. I just don’t anymore.
2. Please don’t send me treatment recommendations, I don’t want them. If you already have, you’re forgiven, you didn’t know. But now you do. We have enough decisions to make without being assaulted with more. I cannot tell you how hard it is to make these decisions but I can tell you to stop giving us more decisions to make. We trust Jesus 110% and over the years he has given Kendrick and I the confidence to trust Izzy’s oncology team. If that ever changes we will seek other options.
3. We want your love, your support and your prayers – that’s it. People always say: what can we do? Just love us. Support us. And pray for us. That’s truly what we need the most. I PROMISE you, if we need something I will throw it out there.
4. We are home now and will be until next Saturday when we leave for Florida. The following week we are planning to have Izzy admitted to start a new type of therapy. I do believe this therapy is the best thing left in Neuroblastoma treatment that we haven’t tried. But my heart just isn’t in it right now. Please pray for clarity and direction.
A lot of times I think I want another life, any life but this one. I think I’m exhausted with witnessing this injustice and not seeing the healing I know is possible. I think: how the hell did I get this life? Because it sucks and it’s painful and it just isn’t fair. But then, then she looks at me and smiles. Then she asks me to snuggle with her because when she is afraid and when she is sad I’m the only person in the entire world she wants. And then I think: how the hell did I get so lucky to be the one entrusted in her care? It’s a beautiful contradiction. To hate the life you are so in love with.
Blessings on you today and LIFE for Izzy.