Staying Present

I remember being in the PICU, and saying that I could only handle one day at a time. There were so many days that felt like never ending marathons. At that time, we had already experienced some of the hardest days of our hospital stay, and I will admit that until the end of our time in the PICU, I never allowed myself to see the light. It’s not that I had given up hope. Of course hope was still there! But it laid dormant while I focused on getting us through the day to day of our time in the hospital.

Arden moved units 4 times. Our first stop was the 5 day stint he spent in the Royal Alex after he was born. I like to joke that they didn’t know what to do with Arden, and they wanted him transferred to the Stollery as soon as possible. But I’m only partially joking. They had never seen anything like Arden’s case before, and they’re in the business of growing preemies, not cases like Arden’s. The next unit was the NICU at the Stollery. Arden was there until the beginning of July, when they deemed him the “old man of the NICU” (at 3 months old), and we were transferred to the PICU. We spent the next 4 months in the PICU, and it wasn’t until our last 3-4 weeks there that I started to see the hope. Or rather, I began to allow that hope to seep into my thoughts during the quiet moments. Because before then, there weren’t a lot of quiet moments. And the ones we did have often involved sedation and a precarious respiratory status. Our final unit was called 4E4. We were most independent there, and at that time, plans for the future could finally be tied to specific dates and times. It was then that things slowed down a little bit. And the quiet moments happened more frequently.

Especially in the NICU, our days were busy, and we were often overloaded by information. There were times, when within the course of one day, Arden could have 3 or more medication changes. He could have a chest x ray, an echocardiogram, and a 12 lead ECG. He could have pressures and oxygen increases on his ventilator and have a chest tube inserted. He could have visits from cardiology, general surgery, respirology, physiotherapy, occupational therapy, and ENT. Just to name a few. This wasn’t every day of course, but in the beginning, a lot of them were spent this way. 

Over the course of our time in the hospital, I became more present than I’ve been in years. I learned that each day was not given. We didn’t wake up every day and experience the lull of everyday life. We woke up and went to work. Arden worked hard to overcome his medical challenges, and I worked hard to advocate for him. To be there for him every waking hour of the day, and then some. It was hard. It sometimes meant that days were long and draining, and I often wondered, “Will this get any easier.” But it also taught me a lot.

There really is peace in realizing that the present moment is the only one that matters. We spend so much of our lives planning, and looking ahead. Training ourselves to worry and fret over what is to come. It’s not necessarily in vain. Our lives depend on us being able to plan for the future, maintain steady income, provide for ourselves and our families. But we’ve learned to expect it. We expect that our best laid plans will come to fruition. And we take it for granted. We’re so overloaded by looking ahead, that we live in a society where nearly ¼ of people have or will have an anxiety disorder in their lifetime. It may sound cynical, but I have learned that any day can go horribly wrong. It could test you in ways you never thought possible. That happened for us on many occasions. And the common factor was that in all of those occasions, I had absolutely no control. I didn’t ask for the hard days, but they came anyways. They came, and they made me stronger. They made me pay attention when the good days did happen. To slow down, and focus on what is important in any given moment. 

I learned that worrying about the future won’t change it. 

Not only will it not change, the future can’t be foretold. I’m pretty sure there’s some country song about a parent who looks into their baby’s crib, and wonders who they’re going to be. I do the same with Arden, but sometimes it makes me worry. I try not to live in this space for too long, because in those moments, my thoughts carry me away. How will things look when he goes to school? How long will he need his oxygen? How long will he need his ventilator? Will he always have a trach? Will he have friends in high school? Will he have a career? Will he find love? Of course, these are the questions that seep into a mother’s mind. 

But I can’t know the answers. Just like when we were in the hospital. I didn’t know the answers then either. In fact, I didn’t look too far ahead or allow myself to live in the joy of what could be in our future. That sounds horrible, but it wasn’t a negative, per say. It was purely pragmatic. And perhaps a little bit of a protection mechanism. I knew that if I just focused on one day at a time, we could make it through, and I wouldn’t become overwhelmed. I told myself that tomorrow isn’t given. You don’t know what it will bring. So focus on the good you have now. The moments that are right and wonderful. Focus on putting your energy into the current moment, the current day. In my opinion, it’s how happiness is chosen. I don’t believe that happiness is created, it’s chosen. The world doesn’t bend to your will, but your perspective can. When Arden was in the hospital, I began trying my best to see the value in every single day. It’s a self-taught lesson that I have continued to practice since we have been home. I try to live in the present as much as possible. 

I plan the “gottas,” as my mother calls them. Appointments and what have you. But many aspects cannot be planned for. For example, we honestly do not know how long Arden will require oxygen for. We don’t know if he’ll ever be able to go without his ventilator. We don’t know how many years he’ll have a trach for. We don’t know if he’ll learn to crawl, or if he’ll be able to walk. If I think about those things in the long term, they’re scary. Like any mother, I want our sweet boy to live the fullest, most wonderful life that he possibly can. But right now, thinking about how that may happen is overwhelming and anxiety provoking. Our survival, and our happiness from day to day, depends on my ability to stay present. 

This week, Arden has had some of his best days yet. He smiles without cajoling, and he shows us the joy he feels. He has gotten so much stronger, and is beginning to move his body in ways that he never has before. Challenges are always lingering nearby, but he’s thriving at home. I’m making plans for the spring, keeping in touch with various specialists and doctors. The “gottas” are taken care of, and planned for. But when Arden has a good day, time slows down for us. I focus in on the way he smiles, laughs, and interacts with his surroundings. Sometimes in the present moment, everything is perfect. We slow down, rest, and enjoy. We never know when the next challenge will arrive, and we won’t prepare for it. We’ll take it as it comes. For now, we’ll stay present, and cherish all the quiet moments. 

XO, Rayel