My son is ALIVE.
We’ve been in the ICU for a month. At this point, I assume that nearly everyone in the unit knows the story of why we’re here because: A. People talk and word gets around, B. I have shared this story so many times that I just figured word had gotten around, and C. It’s a pretty crazy story that even the medical director of the unit, who somehow got ahold of my “Price of Being Right” post requested to share the story with the entire team for teaching purposes, and I obviously obliged. However, yesterday, we had a new nurse who had clearly not gotten the lowdown, and her lack of back story was the impetus to Giacomo hearing the epic tale of his survival, per his request. Really, the whole conversation started when she was mentioning something about taking care of the trach tube at home, which promptly brought Giacomo’s attention away from Nickelodeon, sparking his clearly audible question.
“Wait. Am I going to have this tube forever??!!”
I, the calm, yet real, tiger mama, who only applies the necessary amount of sugar to the tough things in life, just to make them palatable yet understood, replied, “Well, buddy, I think you may. There’s a chance that someday you won’t need it, but let’s just plan on the fact that you probably will have it forever.”
His face showed more curiosity than fear, more acceptance than grief, at least for that moment, especially, as the nurse continued on inquiring about our situation. “So, I’ve read a little bit in the chart, but what exactly happened that landed you guys here so long? And what was his original surgery in the first place?”
I looked at my son, who is alive, but having just gotten the news that he will likely live the rest of his life with a tube in his trachea to allow him to breathe, and I asked him, “Giacomo? Do you know the answer to her first question? Do you know what happened?” He shook his head, which actually surprised me, because, as I mentioned, I have shared the story. A lot. And I just assumed he had caught a least the gist while in and out of sedation, but clearly, I was wrong. “Do you want to hear the story, buddy? Do you want to know what happened and why we are still here?” He nodded emphatically.
And so I told it. The whole story, without any coating of sugar. He listened intently, taking it all in, again with curiosity and acceptance, and something inside of me told me that as he heard my words, he realized that he had known them before, in a state that he likely had believed to be a dream, but was now understanding was his reality. I concluded the story reminding him how courageous he was then, and is now, and will continue to be. I told him that he has been doing an amazing job of healing and that we WILL get out of this place at some point, just not quite yet today. I reminded him that he is a fighter, who is full of perseverance and resilience.
All of this talk of his surgery prompted another question from Giacomo, one that I can’t believe that I didn’t anticipate long before, and should have spontaneously offered to him as soon as he was even moderately coherent.
“Oh my gosh. Of course, buddy! I will grab you a mirror!” Of course this guy wanted to see his amazing new jaw and mouth, one that we all have been raving about but he had yet to actually see, one that he has endured so much to achieve, and one that everyone still believes will offer great benefits to his speech, swallowing, and breathing, once we get through the other setbacks he has faced. When he saw himself in that mirror–his huge smile, his obvious pride of having teeth that aligned perfectly, and now understanding and seeing the results of his surgery–I could see that he was pretty darn happy with himself and that reflection looking back.
My son is ALIVE.
We’ve been in the ICU for a month. I have walked up and down these halls and stairwells, and ridden in elevators, sharing space with so many family members and loved ones in this hospital. We exchange half-smiles because that’s all we’ve got knowing that none of us are here in a joyful place or for a happy reason. Though I am often curious, I have not once, until today, asked someone that proverbial, prison-esque question, “So, what are you in for??” This is mostly because I feel like it’s not really any of my business, and partly because I know myself, the perpetual caretaker, who will want to help my fellow ICU patron when I’m not really in a place to do so. Some people have shared their stories with me in the family lounge, or in passing, and I’m happy and willing to bond with those who desire to share, but I just haven’t wanted to pry into anyone’s heavy stuff here.
However yesterday, I did converse with someone, outside of the ICU, which initially reminded me, why I don’t ask people, “So, what are you in for?” As I was heading back upstairs, I shared the elevator with an adorable little girl, who was showing off her Ring Pop to me, so proud of the candy she had scored. I made small talk with the toddler about her excitement and the woman with her commented on how they were heading upstairs to visit Labor and Delivery. Okay, great! This is a person I can chat more with, clearly, this is a joyful visit to the hospital, and one I am very familiar with.
“Oh, fun! Are you a big sister now?? Do you have a new baby brother or sister?” I innocently and foolishly remarked.
“Um, not really. The baby passed away. We are just going to pay our final respects.”
Ugh. Heart sinking. This is why I don’t talk to people. But wait–I am also a professional get-people-through-challenging-times giver of encouragement.
“Oh no, I am so sorry for your loss,” I said to the woman. And to the beautiful young child, I instructed, “You keep spreading that sunshine of yours, little one. Everybody is really going to need it right now!”
Okay, I guess maybe I should start talking to more people in here. This IS what I do. And this was a reminder to be grateful on a very hard day, after sharing hard news with my son, who is ALIVE.
My son is ALIVE.
We’ve been in the ICU for a month. You would think that fact would be the hardest part of my life right now, but it’s not even close. I am dealing with huge stressors in every possible aspect of my life, and have more on my theoretical plate than I ever have before, all at the exact time. Though I am still confident everything will sort out, that doesn’t mean that I am not on the verge of tears at virtually every moment. I have held so much in these last weeks, and for some reason, I think sharing Giacomo’s story with him today allowed me to let go, just a little. I have been protecting his emotions right alongside my own, but now is the time for us to both start to emote, to process, and to heal. My sense is that there is a big release coming for him, especially since I started to let mine go last night, setting the emotional stage for our dyad if you will.
These last few nights have been quite restful, at least on the beginning parts of the evening have been, as the doctors have prescribed a decent nightcap of drugs for G. Once he was soundly asleep last night, I was able to take a pause and started thinking about all of the other chaos in my life, which instantaneously unleashed the flood gates. I immediately fled to the bathroom, because, on the unfortunate chance that he woke up, I absolutely could not let him see me, the tiger mama, the keeper and protector, cry.
I grabbed a wad of toilet paper to catch the tears that were pouring out of my eyes on the way in there and found myself instantly slumping down to sit on the cold tile floor, sobbing with my head in my hands. Though it felt like hours of ruminating about my life, it was really only minutes, because that was all the time I had before I heard my phone starting to ring, and I knew that it was my mother with a question about the kids’ medications or respiratory equipment, as my parents have so kindly and lovingly offered to take care of my other littles this week. The good news is, that even before she called, as soon as I felt myself going down my personal rabbit hole, a voice in my head, my own voice told me to stop and think about what really matters right now, despite all of the other problems and things going on.
My son is ALIVE.
After putting out the BiPAP malfunction fire with my mother, and sprinkling some water on some other life-fires that will continue to smolder, I was exhausted. I contemplated just curling up in my psuedo-bed/pull-out chair and resuming the bawling of my eyes out, but instead, I rolled my yoga mat out in the darkness of this ICU room. I pulled the curtain that is designed to offer a small element of privacy between G’s bed and my little personal corner of our shared area, something I haven’t desired this entire time but felt like I needed, to give myself my own protected space.
I didn’t cry. I stretched. I found my breath. I eased my tension. I collected my thoughts. I worked out the tightness in my hips that has been brought on by sitting way more than my body is accustomed to, in addition to the pooling of my emotions that have occurred there.
And then I cried. A lot.
The tears and the sobs just kept flowing, and I didn’t try to stop them. I had already made my decision to stay in my own personal space for as long as I needed to. Rounds were over and I didn’t need to talk to any doctors. Giacomo was still soundly asleep and hadn’t moved in hours. Nobody was going to call me. I was done putting out fires for the day. This was my time to release my emotions, to just BE. As I ugly cried, the tears got to an excessive place, I remembered the box of tissues sitting on this cart on our room, one that was used to transfer our stuff from his pre-op room down to the ICU, and for some reason never got moved out. In that moment, I incredibly grateful for the fact that the cart and its box of tissues–and its message of “Big Hugs” in several languages–had remained with me this entire month, and as now needed them, soaking and balling up one after the other.
After a time, the tears began to subside and my body and soul calmed. With each inhale and exhale I tried to take in all the positive energy, love, healing, prayers, vibes, and everything else that people have sent our way during this stressful time. I used all of it to remind myself of all of the goodness around me and hopes for more good things to come. At this time, my life is full of unknowns, in a way I have never experienced. However, there is one known, and I really only know it for certain at this moment, for as I have learned, everything can change in an instant, and life will permanently be altered as you know it. But for now…
My son is ALIVE.