Sunday, January 31, 2021
Saturday, January 30, 2021
Friday, January 29, 2021
Thursday, January 28, 2021
Wednesday, January 27, 2021
Tuesday, January 26, 2021
Monday, January 25, 2021
Sunday, January 24, 2021
Saturday, January 23, 2021
Friday, January 22, 2021
Thursday, January 21, 2021
Wednesday, January 20, 2021
Today is one of the more challenging days to recollect. It is the one that left me feeling in limbo and completely unbalanced on that tightrope I had been walking your entire life. It felt as if I was walking on a disappearing rope and at any moment I would plummet. Today was the day that your fever was still present and no specific flu symptoms presented, but instead, nurse Paige began to get concerned over your oxygen levels. Your poor cheeks were turning a light shade of pink and when I returned from work and checked on you, your eyelids looked like they were getting puffy and you were on oxygen. You looked exhausted, and you were just sleeping in your bed.
By the nighttime Aba went to play hockey and it was me and savta holding down the fort. You started to vomit around 9pm. I panicked...vomiting was no longer a common Sonzee symptom unless your tube was misplaced. Savta came to the rescue to help me after I literally had to call her over the phone from the other side of the house. It wasn't just a small amount of mucous either, it was a ridiculous amount of that awesome bile you puked all over Auntie A circa 2016 when we first got you on the NJ tube and those residents learned really quickly that it is best to start really slowly with you. You were so lethargic, you were so limp when I lifted you up. Your eyes wouldn't/couldn't even stay open. You looked so sick I didn't have the heart to do anything but change your clothing and blankets and wipe you down. I could tell you were not up for even a quick bath.
I rationalized that it was my fault because I must have given your meds too fast. I had not even flushed with water because I was so afraid to cause you more discomfort. For the remainder of the night, I sat in that uncomfortable red Ikea chair next to your bed switching off between working on IEPs and binge-watching the entire show of "Cheer" on Netflix. Throughout the last two weeks of hospice, I would repetitively ask nurse Paige how on earth she never said a word about how awful that chair was. I will forever feel awful for not providing something more comfortable for your nurses.
Tomorrow would be the day that I would start to go down the "what if" spiral. It would be a day where your father and I would start to butt heads over the potential course of action. It would turn out to be one hell of a day.
Tuesday, January 19, 2021
Monday, January 18, 2021
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.