The immediate words that want to write themselves onto this page are it's been another week. Yet, for this week I want to start with, How has it been so long? How does it keep getting longer? How does time on the clock continue to move on creating the absence of seconds, minutes, hours, days, weeks, months, and eventually years? How is the world still spinning without you here?
Some moments almost feel normal now. Scrolling through Facebook seeing your CDKL5 siblings and schoolmates who are still here brings me a momentary pause as I swallow the fact that it isn't my life anymore. I am a stranger to that world now. I can't relate to that group except to tell a story where it starts with, "I once had a medically complex child". To be honest I can count the number of times I have said that in the last year, I apologize for that. It is a mixture of a lack of energy and it is just really hard to bring you up.
Last week I was out and someone, a stranger asked me about my necklaces. I paused for a moment too long, sighed a deep breath, and said, "well this is going to get awkward". I mentioned that I had a daughter but she passed away, and naturally her reply was "oh I am so sorry". My mouth said "it's ok", but my mind screamed, "no it's not but don't say anything aloud, just swallow it down and don't talk anymore". She continued to talk. Some days I yearn to be asked about you, some days I beg for the conversation to continue. It wasn't one of those days. It was a day I just wanted to go about my day and not have to explain that I walk around with a fingerprint of my dead 4-year-old and her birthstone around my neck along with a hummingbird and a quote, and one of my favorite pictures of you etched into silver.
Later that day I went off to Bear Pines by myself. I almost feel bad I left aba to deal with your 2 sick sisters, but truly I needed a mental health escape, and they were coming up for the weekend anyway. While I was driving I started to think of titles of books I have never written related to you. It took me only a few hours to figure out that it was time to begin to fulfill a childhood dream of mine to become an author and have you be the muse. We will see where it goes and how long it takes.
The weather at Bear Pines was perfect. It was windy and chilly, but not too cold. Your wind chimes didn't stop singing. I am waiting for the leaves to start to grow back on the trees in front of the house. I finally hung 2 more sets of rope lights in the backyard and we folded the hockey rink tarp in a better way for storage and took down the broken ninja course. We are starting to have more renters booked, which is exciting and nerve-wracking at the same time for me. It makes me smile that you inspired an amazing place for families to be able to escape to together and relax, I just sometimes wish that I could've had you and Bear Pines.
Anyway, my love, if you could send the powers of health to our house that would be great. Noam has been down for the count for the last 2 days now, and aba, Tzvi, and I would like to stay spared.
I hope you are staying healthy and happy.
Until next time.
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