Today marks 50 weeks. In just 3 days it will be your Hebrew date anniversary (yahrzeit). In 2 weeks and 2 days, it will be an entire year on the English calendar. To think I have had an entire year to figure out what we will do to honor the day(s) and nothing has been planned or even considered makes it even more obvious how much of me was placed 6 feet under the ground with you on that freezing cold day last February 3/8 Shvat. I gave up trying to find the perfect yahrzeit candle holder and went with this stained glass flame holder...at least I think it is glass...and it seemed better than nothing, but nothing felt like it was good enough for you.
I have spent close to a year writing all of the blog posts that are still in my mind that I wanted to share over the next few weeks, none are written, and I am still unsure I am ready to write them. I tell myself that maybe I need to just get the words out of my mind to help me move forward, but part of me knows that even if the words are written, I will relive it all every year to come. I started to think that maybe it was all in my mind, the anticipation of all of this, the weeks leading up to your actual death, and our journey on hospice, but no, it is turning out worse than I even considered.
One of the biggest issues is that today also marks your oldest sister's birthday. Can you believe she is 11 today. 11 years ago today was such a joyous day. It was the day Aba and I became parents, it was the day I looked forward to since I was probably the age she is turning today. Last year was so exciting as we anticipated her completing a decade of life...and then...you spiked a fever that turned out to be the beginning of the end of your life, and well now today is never going to be fully the same. I am really trying my best to make today the best I can for her. I set up the counter like I always do and hung the birthday cupcake on the front door. The chalkboard is ready for her picture and I even put new birthday yardstick signs in the front yard. I will do my best fake smiles throughout the day, and maybe some of them will actually be genuine, but in the corner of my brain is the dark cloud of what today meant for you, her chooper bear, the little sister she is having such a hard time missing.
50 weeks ago today on the Monday that would be January 20, 2020, was the day it started to click in my mind your relentless fever was less likely due to a cold or more specifically the flu. It was the day it dawned on me you didn't have a single other symptom besides the fever. My mind immediately went to the dark place and I told your father it was CDKL5 and I knew what it meant. He wouldn't even consider the conversation. Your poor little body began to retain fluid, it started in your eyelids and your face. The next few days were a real-life living nightmare. I want to say that I wish I could forget the events of what unfolded between the last 2 weeks of your life, but I wonder in reality if that would be worse.
There is a ton of snow showing in the weather forecast for Bear Pines this week and into the weekend and part of me just wants to escape. Your oldest brother fractured his hand this weekend, and so now I guess we don't have to fully work around his hockey practice schedule. Zoom is still an option for everyone except Noam for school, and it would only be Friday they would be missing in any case. Maybe we would head up partway through the day and they won't have to miss much? I am not sure, but I know I need to escape, even if that isn't the best or right thing to do in terms of dealing with my grief. I could use some freezing temperatures and a complete change of scenery to distract my mind.
Anyway my baby girl. I hope you are staying out of trouble and doing well. I miss you beyond words and wish I could see you through a special window.