We just celebrated Halloween and I got some really cute pictures (which you may have already seen on Facebook) which I’ll share at the end of the post. Our Halloween was pretty uneventful. I dressed Maddie up, but she still doesn’t understand the concept of it, so our participation was pretty much limited to taking a few pics and letting her help me hand out candy. All in all, just another day. Until the next day, when I realized something important had happened. Maddie was diagnosed with leukemia on Oct 29, 2007. And so for the next three years, Halloween has been tainted by that memory. But I literally forgot all about it this year. The 4th anniversary of the cancer diagnosis came and went without my even realizing it. That is the milestone to which I referred in the title. Cancer no longer haunts me. At least not like it once did.
I’m sure part of me not remembering is based on the fact that we have just been very busy here. I try hard to keep positive about it all, but doing this alone is hard. Brandon has been gone for over 7 months now, but still won’t be home for at least a couple more. I greatly look forward to the next three years (starting when we move to Raleigh next summer) during which he will not deploy. He will travel a lot, but should be home much more than over the last three years.
We are still trialing a new seizure med called Vimpat. I am not sure that I have much more to say about it than I did in the last blog post. I am still hopeful, but frankly I am growing really tired of how slow we have to do all of this. It ruins her sleep every time I change the dose. I am worried we’ll still be working at the dose when Brandon gets home and I hate that he’ll return to such a chaotic sleep schedule. Though starting back at school has been a good thing, she has missed two out of the last three weeks due to sickness and sleep cycle disturbance. And the sickness has also made her seizures worse so I’ve been unable to adjust meds during it. I will be glad when we can keep her healthy for a bit so we can actually see what, if anything, this medication is doing for her.
I ran another half marathon last weekend and did really well. For me, at least. I accomplished my goal. It was really nice to feel like I followed through and did what I set out to do. Running is the primary way I manage my stress. It is my “me time”. I am usually pushing Maddie in the stroller, but she usually naps and allows me to just enjoy it. It gives me a focus where I can actually achieve things. I am such a perfectionist and it definitely takes a mental toll on me to constantly fail at finding a cure for Maddie’s seizures. I know I am a good mom, but it is really difficult not to be able to “fix” her.
I will try to update more frequently. The holidays are fast approaching so I’ll hopefully get lots of good pics to share. Also, at the end of this month my baby turns 5 years old. I honestly don’t know how that is possible. I think that’s why I’ve been slightly more emotional than usual lately. This child bring me more joy than I could ever have fathomed. She is the most amazing kiddo ever. But I never thought we’d still be battling her epilepsy at this age. I am incredibly thankful to have her here, and I know how close we came to losing her and how lucky she is to have beat her leukemia. But there are still a lot of challenges for her. So we just keep facing them head on.
Love to everyone,
Liz, Brandon, and our amazing Madeline