Sunday, July 20, 2014

Some Days are Harder but Sundays are Best

Sundays are family days, they always have been. Em and I make sure, even when we are busiest, to set these days aside for family, football, movies, and spending time together. Today, as we sat together in our living room and watched Inside Llewyn Davis--one of our favorite movies of all time--it is difficult to not feel a bit emotional about everything we have gone through and continue to experience. This film has a special resonance for all three of us. While Em was pregnant, we watched this movie in theaters and immediately fell in love. Apparently, Max did, too. Throughout the film, which is composed of many Dylan-esque folk songs, Max was kicking up a storm so fiercely that it was obvious he was having a strong and direct reaction to the music and the voice of Oscar Isaac. We have come to find that Max absolutely loves music and has strong reactions to many of the same songs he seemed to like in utero.

The evening after we initially watched the film, we decided to purchase the soundtrack to see if we could duplicate Max's behavior and we did--he kicked like crazy every time we played it. For the last two weeks leading up to his birth, we listened to that album everyday, each time a little more emotional than the last. Since we kept a copy in the car, we generally listened to it on our journeys to and from the hospital, which were some of the most trying times. Even now, many of the songs continue to elicit feelings reminiscent of those uncertain and frightening days and yet I love that album nonetheless.

Max seemed to have the strongest reactions to the most depressing songs, especially one titled "Fare Thee Well." It was difficult, at times, to not wonder if this was his way of communicating with us and telling us everything was going to be okay no matter how it all turned out. Even though I tried my best to put those ideas out of my mind, it was impossible to not have a the fleeting thought that he was saying goodbye before we even had a chance to say hello. Luckily, things have gone on a different course.

It has been easy to forget where we came from and just how far we have come. Just a mere six months ago, the thought of going to the hospital was vomit-inducing. Even though we didn't like to talk about it, I knew there was a very real chance that I would never be able to give my son the life I wanted to give him--this still isn't the life I wanted for him, but it is life, and for that I am eternally grateful. Since Max is doing so incredibly well and most of our posts focus on the positive, it is easy to forget that a transplant isn't a cure; it is simply a longterm band-aid. And band-aids are never permanent. It is easy to forget about Max's heart condition while I am changing the fifth blowout of the day and feeling a bit frustrated that we have been on house arrest for almost five months. It is easy to forget when it is 115 degrees outside and I am constantly reminded that I hate Phoenix and badly miss my friends, family, and hugging my mother. We talk about where we want Max to go to school and what colleges we want him to apply to, but in reality, we may never make it that far.

There is a fine balance between optimism and pragmatism and we are still trying to ease our way along that rope. We have accepted the reality of our situation but that doesn't mean we ever really talk about it. After long days, I sometimes have to remind myself that each moment is a gift. It is too easy to get caught up in the daily grind and forget that things will always have an air of uncertainty and that is terrifying. As a parent you want to be able to provide the best for your children and ensure that everything is going to be okay, which is a nearly impossible undertaking for anyone raising a child, but with Max, I can tell him all I want that everything is going to be okay, but there is little I can do to make that a reality.

There are days when I only think about Max's transplant a few times and that is a triumph. I'm not saying I wish I would constantly think about my son's heart condition and wallow in self-pity because I don't. I am thankful that on most days everything feels normal because otherwise it would be nearly intolerable to never have a break from the stress and anxiety. When you look at Max, especially with his always-happy demeanor and wise eyes, it seems like he is a healthy and "normal" baby. He is currently only on nine medications and that aspect has become so ingrained in our daily life that it feels normal. We wake up, eat, Max takes his meds, Dad takes his meds, and we are off on our day. It's normal for us. So, even with that, it is so easy to forget that Max is sick.

Loma Linda University Medical Center in California, one of the premiere infant heart transplant and research centers in the world, released a study earlier this year that was overwhelmingly positive about the future of heart transplants in children. The study said that they are seeing advancements in the longevity of transplants in children and were happy to report that 54% of their transplants patents had survived at least 15 years. 82.5% of that group had healthy heart function when the report was written. For the transplant world, that is a pretty good statistic. For the rest of the world, 54% is not necessarily something to write home about; it is hardly better than the odds of a coin flip. Luckily, we live in a era where medical technology is rapidly advancing so it is difficult to say where we will be in five years. Doctors are confident that they will make major breakthroughs in this area very soon but, like everything else, it is always uncertain. And who knows? Max is different. He is young, his situation almost feels fictional, and his results are seemingly unheard of. There is very little data on transplant cases like his, so Max is the data because his situation is unique. Weirder things have happened, especially to us over the last year, so maybe he is the one. Perhaps that is me being too overzealous and placing meaning where there is none but, for now, that is where I choose to operate from.

I have found that being overly optimistic is dangerous because it allows me to fall back into a level of normality that I so desire but then my perspective of things skews. I start to focus on my career path and other less important aspects of our lives and forget that I really do need to cherish every moment with my son and my family. It may be a overused cliche but I will say it again: every day with Max truly is a gift. I honestly believe that. Not that anyone really does, but we don't have the luxury of assuming or predicting the future of our family and that is a really difficult concept to fully acknowledge. I want to change it but I can't. We continue doing what we are doing and hope for the best because that is all we can do. We can keep chugging along, letting Max know that he is loved with every ounce of our beings, and give him the best life that we possibly can.

We do our best to accept our situation but not let it bear a heavy burden on our daily lives. In the end it is a choice: we can be sad and think about the worst case scenario or we can be positive and treat each baby step as a giant leap. We can keep our Sundays, our songs, and make the best of every day, poop and all.





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