As this holiday season has started and most people are making preparations for their families and friends, we try to do the same for Savayah. Thanksgiving was decent enough. I was able to cook and bring it over to Bella’s grandmas, as we try to do every year, and we sat down and ate and had a decent time. We weren’t able to stay too long since Bella was already not feeling well before the day started, but she was happy to go, as short lived as it was.
Most people only see a snippet of what our lives is like from social media and this blog. As much of it is saddening, or hospitals we do try to show that we’re still happy and together and doing everything we can. You don’t wee the postponed holidays. The missed birthdays, pushed holidays and so many cancelled events. Unfortunately it’s gotten to the point that we don’t even get invited, or if we do we don’t ever say yes 100%. Tomorrow could go either way for us. Everything could, like magic, be better and we may be able to do a bunch of things, or it could be an ER day, possibly admitted. Sometimes a mixture of the two, and there’s no way for us to be able to tell what’s going to happen on any given day.
Today for example, as I write this, Bella is in bed, unable to sleep while having not been able to sleep throughout the night. I already have pushed an appointment for later in the day to hopefully still be able to make it, but there’s also a strong possibility she will end up in the ER or admitted if anything gets worse.
Today isn’t a good day, and there hasn’t been a day in the past few weeks we’ve been able to really leave other than for a doctor or the one time we rallied for thanksgiving. We’ve switched meds because the one’s she was on weren’t effective. The new one’s seem to help, but with how long she’s been fighting, it’ll take a bit of time to get rid of. So as we try to adjust her diet, adjust to the new meds, and work on getting her going again, it’s always harder when the weather turns to cold.
For Christmas, we’re going to do our best to at least get a tree up. Money is tight, but we’re trying to do our best for Savayah. We may even decorate the house a bit like we did for her birthday so Savayah gets nice and excited and has a bit more happiness in her life. We may re-wrap some things she hasn’t played with for a while, and try to get her a few more things new if we’re able, but it’s more about the fun and happiness while we fight to get our lives back on track.
So I hope everyone is having a wonderful start to the holidays. If you’re able to share, follow or donate, anything would be very much appreciated. We’re still trying to save the funds needed to get Bella over to Stanford University for a doctor and trial that’s making progress ME/CFS and a few other things Bella has been diagnosed with. As always we thank everyone for their support, and hope that we can rally enough for Savayah’s smiles. #helpthehero on FB and IG. Thanks for reading.