It's all messy...and maybe that's ok

Griffin has now been in the Cardiac Intensive Care Unit for 12 days and we have no end in sight yet. Every day is a constant ebb and flow of progress and setbacks. This is the second open heart surgery he has had in his short 2 months of life, and this time the strain on his heart, put there by his William's Syndrome and us trying to fix it, is evident and a battle he is struggling with.

I was encouraged to write down 5 things I'm grateful for every day while going through this journey with him. I've been doing that daily since it was suggested, and it has helped to keep my hope afloat and the darkness away. But I think today I want to write 5 things I miss, in the hope that when this pops up in my future strolls down memory lane, I will always be reminded of the things I never want to take for granted. So this is more for me than anyone else. But maybe it will be a source of encouragement or the gentle reminder we all need from time to time, of what all we have to be grateful for that we take for granted in the mundane and grind of our day-to-day lives.

1. I miss being able to hold my baby; - the night before Griffin's episode he didn't want to go to sleep or be put down. So for almost 6 hours I held him and we stared at each other or napped together, and it was absolute bliss. I felt grief-stricken when I finally forced myself to put him in his bassinet to sleep for the night, and I couldn't figure out why and thought it was so odd and out of place. It's been 12 days since that night. Maybe some deep-rooted part of me sensed it would be the last time for a long while, and I needed to hold on as long as I could so I could get through this next part. But I would give pretty much anything to be able to walk over to his swing and pick him up and hold him whenever I want, to be able to rub his head and kiss his nose without wires, tubes, and medical equipment covering his body. I hope I never forget the sense of loss I now feel when I'm exhausted because he's been up all night wanting to be held and crying if we even think of putting him down.

2. I miss my house being loud and crazy and chaotic - I know I complain about it a lot, and I know it drives most people nuts when they come and visit, but I miss the constant rumble of boy's laughter and roughhousing. I miss baby cries, grunts, and babbling. I miss the dogs tearing through the house and terrorizing each other and me yelling at them to go outside. I miss the constant flow of people in and out just dropping in or stopping by or the last-minute barbeques with too-loud music and good company. I hope I remember this kind of quiet when the noise feels like too much and I complain and nag.

3. I miss planning things - this is probably something that in the end I will be better off for having lost, but for right now I really miss the ability to plan things with the blissful ignorance that it will (even remotely) come to pass exactly how I want, when I want. I miss the ignorant assumptions that I will have tomorrow to do better, to love more, to be fully present; and so today, I can get all that important stuff done first, so I can fully relax and enjoy all the really important things later (that's sarcasm if you didn't pick up on it). The thought that I ever believed I could plan life into tidiness and neatly organized events, or that I thought I needed to get the never ending-laundry list of stuff done before I could fully relax and enjoy my boys and life itself is laughable now, and I am grateful for fully knowing better. But I miss that I had no reason to know better in some backward sort of way. Maybe because life felt lighter than it does now, and it was lighter than it will ever be again. I hope I remember when all this is said and done, and life again becomes a game of Jenga, that all that really matters is the moment and being present.

4. On that note: I miss the me that I was - I assume that this will in some ways come back to me when this is all over and some time has passed. But I realize too that I am forever changed. I will never again live in a world where it is simply incomprehensible, no, not even a thought that would occur to me, that I might walk into a room and find my child struggling to breathe and stay alive. There's now a gravity to my heart that wasn't there before. Where it was second nature to smile through the pain and I just always knew it would all be ok in the end with blind and almost easy faith, it now takes effort to do and believe those things. Where I always knew what to say and how to pray, I now find myself at a loss and without words most of the time, depending on God to just hear my heart. Where I felt a near-constant strength and resilience even it was at times distance, I feel completely adrift and like I'm holding on for dear life at the edge of a cliff. It's not as if I haven't done hard things before, it's not like life has been a cakewalk for me - but this is a new kind of hard; this is a hard I never thought I would have to do; this is a hard that, while it will get better and less critical, will never go away in other ways. This is the kind of hard that forces you to actively battle not hardening your heart just to survive each day. I hope the changes that are being made now on my heart are the good kind and that they stick.

5. Back to a lighter note: I miss home-cooked meals - I complained pretty much daily about having to cook, having to grocery shop, and having to think up what to make for dinner. After living out of a hotel and/or depending on the generosity of other people to help me manage this part of life while I juggle the enormity of the rest, I'm pretty sure I'm cured of ever whining about such a thing. It's not just the food I miss though. In our home dinner is done every night at the table. If the TV is on while we eat it's rare, and even then it's usually just background noise or we are all commenting on the show that's playing and having a discussion about it. Usually, we are having either a deep philosophical conversation, sharing something eventful about our day or laughing way too hard at entirely inappropriate bodily functions for the dinner table (you can tell I live with nothing but boys). No matter what, though, it is without fail a time every single day my family sits down and is focused on one another and daily reconnecting and solidifying our bonds. It is a constant that I never realized how much I depended on. I didn't know how, even while it drains me in one small way, it fills me up in a much more important and needed way. I didn't see how much joy it brings me to watch my boys enjoy and appreciate a meal that, even while I complained about having to do it, had prepared it with absolute love and as an expression of how very much they mean to me. I didn't appreciate enough the ability and privilege to do that every day, and after military life and all we've been through, you would think that I would know better.

I know not everything I listed are things necessarily to be missed; that in reality, I will be better off for having been forced to grow through and out of the ignorance and foolishness (or at least have started the process). But change is hard, under the best of circumstances; and I think we all grieve, at least a little bit, that carefree inner child that gets lost a little more each day as we live more. So while I will be grateful for all that I am learning and becoming, I will also miss the easiness of life and being that was in the chapter before this one.

As I read this back and continue on, I realize maybe it's not just that I needed to list what I miss, but to acknowledge life as it was and say goodbye to it for all its good and bad qualities - because it was still my life and the normal I depended on; because our life will forever be defined as "before Griffin" and "after Griffin". Maybe I needed to bid farewell to who I was too, for all my good, bad and lesser qualities. To recognize, accept and receive the unapparent gift that: we didn't just have a baby and it didn't go as planned, and it's hard and so much and a constant rollercoaster; but that we were also (and more importantly) given Griffin - who in all his extraordinariness and seemingly infinite strength, has forced us to grow and be strong with him; to have hard conversations that hurt or require courage to say out loud, but will forever change and strengthen us as individuals and as a family; to be better than we were before and in ways we didn't know we needed to be; who brought a kind of light and fight into our lives that could never have been there before, and will change us in nothing but the best possible ways. He gave us Griffin - whose life so far has shown me that it's ok to be all the feelings all at once, because life is not neat and tidy and lined up in a row; that it's ok to be a mess and miss all the parts of the life you knew before; to understand fully that God is big enough not just to take my gratitude and faith, but to take my anger and heartache and doubt. Griffin - who made me realize I don't need to always have the answers or know what to say or do; that sometimes just carrying on and movement with purpose can be its own kind of prayer and strength. Griffin - whose fragile heart has made my own truly believe that, in the end, no matter what I miss, how hard it gets, or how messy it all is: it's going to be ok....we are all going to be ok.