Every so often you have to buckle down and do those things you really don’t want to do. This evening was one of those times for me. You see, while we’ve been facing some tough realities this past week, I’ve still been in a slight stage of denial, putting off certain tasks for later, believing that doing so was buying me more time.
But, as Harper had some mild seizure activity Sunday, and then had an “off” day yesterday, and then had a small seizure this afternoon, my husband informed me that he packed his “go-bag,” and I knew I needed to stop pretending and get prepared. (Although we are still steadily praying that we won’t need to actually utilize our preparations!)
So, I replenished the go-bag for Harper and me. If you’re not familiar with that concept, here’s the scoop- I have a bag packed and ready to go at all times. It has a day’s worth of essentials… Toiletries, change of clothes for Harper and myself, sippy cup, a spare blankie (if you know Harper, you get the importance of this!), bottle of water, pack of crackers, phone charger, hair ties, socks (another Harper thing), jacket, and my glasses. It saves a lot of hassle for my family when I’m in the ambulance with her and they need to know what to bring to the hospital, and keeps us prepared to be gone for a day or two at any given time.
I also sat down with a fancy new notebook and recorded all the details I could remember about Harper’s seizures over the past month. (This is where my blog came in handy!). It was a bit unnerving to see just the facts listed out with all the dates of what we’ve seen, big and small. But now it’s all in a quick list for the doctor, compiled in a pretty little notebook that fits just right in her bag (as if all that cuteness somehow makes it all a little happier).
And now everything is ready and we just… Keep living. We hope for the best while preparing for the worst, and try to go about normal day-to-day life the best that we know how. Sometimes it feels like we are waiting for the bad to come, but that’s not how God has called us to live. Instead, we embrace every moment, recognizing that every “normal” is in fact a beautiful gift, one that no one is guaranteed. And as our journey has shifted a bit, I’m seeing more and more that there are even gifts in the “abnormal” as well… It just takes a shift in perspective.
Now, I would be lying if I said that I’m not a little bit scared of what lies ahead. I don’t always understand the path I’m on, and there is a natural fear of the unknown. It can be easy to wonder why my daughter hasn’t been completely healed yet- we’ve seen miracles beyond what we could ever deserve, but why not complete healing? I can’t answer that… But I know and I trust the One who can. I see Him at work still. I feel His presence in a real and tangible way. He’s there when I seek Him, and even on the days I feel like running in the opposite direction, He uses His people to reach me and draw me back. I have been overwhelmed this week with encouragement and support in various ways from so many, and it has been a beautiful reminder of our unity as the body of Christ. I’m ever grateful for His continued faithfulness, and thank you to those of you who are praying. ❤️