Friday, April 26, 2024

Stranger in my old home

I got off at the Thomas road exit from SR 51, turned right and turned left to enter a place that once was my second home. I couldn’t understand how I was staring at a new building that I never even saw the ground breaking of or a rent-a-gate around. An entirely new garage fabricated in what has felt like overnight replacing a building I attended meetings at while sitting on an advisory committee. When did it get taken down? When did they start and finish this beautiful new garage? We parked. I “knew” the front entrance would be closed at 8pm, but then again, maybe not? What else has changed?

As we walked to the emergency room entrance, the one built after Sonzee was born, the one that made our emergency visits a breeze, to the right I noticed another new building. What is it? I don’t even know. I didn’t see that come to life either. We entered the double doors and I told them we were checking in for a sleep study. We’ve done this before, I know where it is, or so I thought. “Go straight and turn right into the imaging area, they’ll check you in there”. My confidence returned as we walked. Sonzee’s oldest sister recounted waiting by the pharmacy (we saw this one built) and various other memories. When the tech came I “knew where we were headed”, we had plenty of EEGs in the sleep study area, it was the first place Sonzee had her first EEG, the one we learned we wanted to be “normal”, the one that “was”. But, then we headed towards the elevators. Why? What? Where are we going? Instant panic, please not the 8th floor. He pressed 3, some relief filled my body, but then I had to say, “oh it’s no longer in the east building?” It apparently moved a year ago. “Oh”. Another slap in my face. No big deal. We exited the elevators. To the right I know well. There’s a laundry room and a “garden”, but it’s not really a garden. It’s a place where the breeze blows and you can get your sick child some fresh air, IF they’re not on restrictions. We turned left. Ok. But wait. I’ve been here before, why? 2018, aka the year the Zaila Family celebrated Christmas, despite also celebrating Chanukah. Julie our incredible child life specialist didn’t care that we’d celebrated Chanukah, we were to also celebrate Christmas, and that we did. Bikes and toys galore, blankets, everything you can think of, shopped for right there in that open space with floor to ceiling shelves in its own remote toy store. I remember the tears I felt when I walked in and how overwhelming it all was. Now, there are rooms, large rooms, with new fancy parent beds in the new sleep lab. We walked into room 3 and a bear waited on the bed. Fitting. 

The night was uneventful unlike plenty of others I’ve spent as a “resident” at 1919 E Thomas Road. Her sister donned Sonzee’s special bear EEG hat as she slept with her new bear and her “Sonzee bear”  In the morning as we left my eyes lingered towards the garden. A part of me wanted to go there, but I fought the urge, turned right and we went onto the elevator. As we got off on the 1st floor at 6am the “resident” moms in their pjs and hospital socks and shoes were heading to Starbucks, a life I once lived and knew all too well, but it’s one that now remains in my mind. We turned left and headed out the double doors and walked to the car in the old but once “new “parking garage as I watched the doctors and nurses and staff enter the now really new garage, the one I assume is for them because of the code box but something I won’t ever officially know. 

It’s been almost 5 years since the last time I took the elevator up to the 8th floor. It’s been a couple of years since I closed the door to a spot on an advisory committee because I needed to help myself move forward. It may (and in some ways hopefully be) the last time I ever take those elevators of PCH, but my heart breaks as I have officially become a stranger in a place that once was once my old home.   

Monday, April 8, 2024

Moving forward

There are days that you experience during your life that you remember so vividly it is as if you could relive them in your mind. They are typically the best days of your life or sadly the worst, but there are those days that are not quite so simple to categorize. The ones that tug at your heart because they represent both a beginning and an end of a period, or an experience. Those moments, similar to the best and the worst also find a way to settle into your mind and sit forever in a crevice. The emotions that come with them are a blend of happy and sad, panic and calmness, a burst of tears and a deep breath, complete opposites like the crashing of a wave and then the receding water back into the ocean, an earthquake that comes lasting for less than a minute and then ends, or a breeze in the wind that slowly fades away.

I've learned over the 4 years 2 months and 4 days that grief is a constant battle of finding the balance of my inner ocean. For the most part, I do my best to keep the crashing waves subtle, but there are days on this journey when the crash is impossible to ignore. There are days when the balance feels insurmountable. Those questionable days become just as significant as the celebrations of her life and the honoring throughout and since her death. These days in a sense aren't negative, but it is difficult to call them positive. They are what others would call moving forward, and yes, in a sense that would be correct. But something that I have also learned on this journey is that when they tell you you won't move on, that you will move forward, that doesn't mean it will be easy and it doesn't mean it won't hurt like you just buried your child all over again. 

I remember the first day I had a conversation within my mind over not going to visit the cemetery for the first time after Sonzee died. I watched the clock tick by knowing as time passed so would my opportunity to sit by her grave. I knew when the clock read the time I needed to leave by to beat the gates closing that if I didn't get up and go I would miss my chance. I sat there and reminded myself that I wasn't going for her, I was going for me, and I was truly "ok" not going and the sadness was the fact that I was ready to not go. I remember the pain that swirled in my chest and the overwhelming sadness that swallowed me whole, the intense guilt that it brought along with it. I did it though, I watched the clock strike 4pm, and I was okay, life was moving forward

I remember the first sibling/cousin picture that happened that I "forgot" to put a "stand-in" for Sonzee. I remember reminding myself right after it happened that it meant it was okay, it was part of the process, I was moving forward. I felt panic, sadness, and tears, again with the guilt, and the realization that it was okay, life was moving forward

I remember the first time I stopped writing Sonzee weekly letters. Like visiting the cemetery, they too were more for me than her. I found a new way to communicate with her, I didn't need to send her a letter on a blog. The guilt settled in strongly paired with so many other emotions. But, like the other events, I was okay, life was moving forward.

In May of 2020 in the throws of COVID, 3 months after we buried our Sonzee Bear we ventured to Flagstaff, and like much of the things we have done in our marriage, we threw a random dart and did something crazy, we purchased a house in Kachina Village. That home became our Bear Pines, our home away from home, our family retreat, a place Sonzee's baby brother labeled "other home". That home was more than just a house, it was the place that held my sanity together and brought us so many insane memories. It was a place that filled a void and gave so many others a sense of peace to venture to. But, like so many experiences since our Sonzee left us, it has served its purpose. Our family as a whole is ready to move forward. There is hockey and gymnastics and adventures that remove our ability to go up north for the weekend. I know that life continues moving forward, I know that selling Bear Pines is the right thing to do, it is time, and we will be okay because life is moving forward

The pit in my stomach and the tears streaming down my face are not because I am sad that we are selling, it is because I know I am ready and it breaks my heart. It's how I felt when we sold 19th street, allowed the insurance company to throw away her wet furniture after the flood, and painted over her medication door. Moving forward is so hard. It is filled with tremendous guilt, questions over how she will be honored now, and fear that eventually, I will leave her completely behind. The tears, the sadness, the red eyes, and the horrid ugly crying is because moving forward is so freaking scary, and I miss her so damn much. But deep down I know, like every time before, it will be okay...because life will continue to move forward

The Mighty Contributor