No Time To Cry

I have been filled with an unfamiliar feeling these days and only recently did I understand where that feeling comes from, or better yet, what that feeling is made of. Tears. I am filled inside with the tears that I haven’t yet had time to cry. I have this heavy sensation deep inside my chest that is, at times, crushing and all-consuming. The discovery that this feeling was made up of un-cried tears came, unexpectedly, during Avery’s last hospital admission. She had been out of the hospital at that point for 4 glorious weeks and although life seemed to be calming down, I could never shake this feeling of unease that had settled deep inside me, nor could I explain why I still felt so down as things with Avery were looking up. As I sat in her hospital room looking out the window on a gray, rainy day, I saw my reflection in the glass, only it didn’t exactly match what I expected to see. It was my face, of course, only it was covered with raindrops that fell from the sky so naturally. It dawned on me then, as I watched these raindrops fall like tears down my face, that I have not cried. I mean really cried. Of course, there have been occasional moments when I feel the tears forming in my eyes, usually at the most unexpected times and over the most unexpected situations, but for one reason or another, I have always had to fight the tears that overwhelm me and get on with life.

This summer has been filled with so much chaos and uncertainty that I feel like a stranger in my own life. Somehow, overnight, we became the family of a child with complex medical needs. I know that we have lived this life since Avery was a baby, but I have never truly considered ourselves to be a “special needs” family. I was as prepared for the surgery as I could be, but nothing could have prepared me for the trauma of the 51 days spent inpatient over the last 3 months. This whole experience has been a whirlwind, filled with more anguish than I can even comprehend at this point. I remember getting out of the hospital after the first admission which was much longer than originally planned. I was so grateful to be home and I began adjusting to what was our “new normal” with all the ileostomy and g-tube venting supplies and emptying the bag 12-15 times per day and the always stressful bag changes. I reassured Mady that we were home for good and we could start the summer that we had planned. We were home just a couple days before having to go back in. After discharge on the second admission, I promised a worried and cautious Mady that we wouldn’t have to go back and once again added a little more to our routine. Being admitted for the third time was too much for my type-A, control-freak personality to handle. I stopped telling Mady we wouldn’t have to go back in. In all honesty, after each admission, I fully convinced myself that we wouldn’t be back and so I was always in complete shock when we would have to bring her back to the hospital. The realization that I no longer had any control over my own life was, and still is, hard for me to accept. I have now adopted a more passive attitude when it comes to Avery’s health complications, and I am learning to let go and acknowledge my inability to “fix” her. I think that’s why my life seems unrecognizable to me now, because I haven’t really had a say in what has been happening regarding her health. After each admission I would barely have time to get things “back on track” and we would be right back in, not allowing me time to even begin to touch on the emotional toll this summer has taken on our entire family. Each time I returned home a little more broken and beaten down, but Mady’s emotional needs would take priority and I was forced to push my pain away to give Mady the stability that she so desperately needed. There was no time to cry.

I feel like I need to have a complete breakdown so that I can start to build myself back up again, but with the over-whelming juggling act that has become my life, there isn’t time for me to breakdown. I am just learning to manage my life in hopes that one day I can be present enough to actually start to live it again. Coordinating Avery’s care feels like a full-time job. I get her up every morning, cover her PICC line which can’t get wet, and give her a bath after which I have to do a full bag change because her high output erodes her bag much faster than normal. Then I hook up her IV to run for an hour or so while I do her hair and make breakfast. Some mornings we have a nurse come for blood draws before the bus even arrives. All of this would be overwhelming with a child who cooperates, but as anyone who knows Avery intimately, knows that that girl isn’t going to do anything she doesn’t want to without a fight. And there is a fight. Every day. I get her onto the bus and then the real work begins. I have two different medical supply and home health companies I need to deal with. Her PICC line requires a ton of medical supplies that are starting to take over our home and I have to keep up on what needs re-ordering and so on. Then there’s the twice weekly visits from the home health nurse that are scheduled the day before each visit, leaving me little time to plan my days and trying to arrange for the nurse to meet me at Avery’s school for these visits. Oh yeah, and then there’s fielding calls from the delivery drivers for medical supplies as they can’t be left at the door, and having to wait at home for the driver to come pick up her blood sample to bring down to Luries on blood draw days. Avery’s sodium has still been fluctuating, so I receive at least 2-3 calls per week from her doctor letting me know her levels and advising me on how to handle her sodium drops. I was left with very little time to organize everything for her to begin kindergarten and had to attend a few last minute meetings (totally our fault because we had to keep canceling because of re-admissions) where it was decided that Avery needs a full-time, personal nurse. I am in frequent communication with Avery’s teacher, and the school nurse, and the district nurse while we get her settled into a routine at school. After school, I help Mady and Avery with their homework, but where Mady has always done well with school, Avery struggles. So now we need to add more people to the mix to get her help. I am fully supportive of whatever it takes so that she doesn’t fall behind, but it is more than I expected for her. And then there’s work. I missed a lot of work this summer and getting back into the swing of things has been difficult as these other things I juggle don’t just suddenly disappear when I put on my lab coat. I am also worried about running out of FMLA hours, because the law only allows a certain amount of hours before your job is no longer protected. I am getting dangerously close to that situation and it terrifies me to think my job is in jeopardy. It is exhausting and by the end of the day I am just too mentally spent to even consider processing my feelings about everything. There is no time to cry.

But if there was, this is what I would cry for…

I would cry for Mady. My sweet, scared little girl who has suffered in silence all summer long. I see her pain and feel it as only a mother could and I am riddled with guilt that I have not been able to protect her from it. Seeing her sister’s limp body being carried out by a fireman is only a part of the trauma she witnessed this summer. The innocence of her childhood, like her sisters, has been taken from her, but what pains me the most is the fact that her suffering has to be pushed aside to deal with when we get around to it. Although always present on my mind no matter what is going on, Mady is often made to feel like an afterthought. There is too much inequity in the amount of time I devote to each child and it breaks my heart that this is just a fact of our lives at this moment, and most likely always will be. I need to cry for Mady.

I would cry for my marriage and the toll the last few months have taken on it. There is very little time for romance when you are constantly surrounded by doctors and nurses in the hospital, and forced to watch your child endure pain and be put through one procedure after another. That takes something from you. It leaves you with little left for your partner. Out of necessity, most conversations revolve around making medical decisions for Avery, and as her only advocates, we are consumed with the weight of these decisions we make. There were too many nights this summer where Joe and I found ourselves sitting in the dark hospital room, watching Avery sleep, and, though we shared a blank, empty stare, we had no words. Sadly, we began to look forward to the surgeries and procedures that required anesthesia this summer so we could have time alone for a “date” in the hospital cafeteria where we could just talk and reconnect. It is a struggle to make our marriage a priority when there are clearly more pressing issues to deal with. I need to cry for what we have lost, and hope that, in the end, this test will make us stronger.

I would cry for myself. Looking out the hospital window at a city of millions this summer, I have never felt more alone. Despite the outpouring of support and encouragement our family received from friends and strangers alike, I felt more isolated and cut off this summer than I ever have. I still do. I know that most of it is me not allowing people in, but I also think some of it is others expectations of what I should feel. I feel like people expect me to be over it already, to move on, to be positive and look on the bright side of things. I am not there yet. Although always well-intentioned, the constant focus on the positive makes me feel like I should just keep my unhappiness inside, that my feelings are unjustified and melodramatic. I know intellectually that there is so much to be grateful for and that I should try to find joy in any small victory, but the sadness still lingers right below the surface of my forced smile, threatening to come out at a moments notice. Selfishly, I need to cry for me.

And, of course, I would cry for Avery…

It happened on day 4 of our first admission, as the wound care nurse was showing me how to do a bag change. The part that I was dreading. Avery’s realization that this was a permanent situation. As both Joe and the nurse stepped out of the room for a minute, Avery looked up at me and asked, “When are they gonna take this off of me? Do I have to do this every day?” I could tell by looking in her eyes that she already knew the answer to these questions, but it still broke me to have to smile down at her and confirm that these changes were our new way of life and not just a temporary post-op nuisance. My voice cracked with pain as I answered her and I immediately turned away as tears flooded my eyes. I quickly turned back, forced a smile on my face, and with a higher-than-normal “everythingsallright” pitched voice, I reassured her that she was going to be okay.

Though there are so many, another time I had to fight back tears was when the usually quiet, never-wants-to-talk-about-it Avery finally snapped. Sitting on the couch with a stomachache one day, she started crying, both angry and sad. The thoughts she kept so tightly inside came spilling out all at once, “It’s not fair! You always have to empty my bag and change my bag, and vent my tubie, and hook me up to my IV, and I have to wear a patch and my tummy is big and it still hurts!” Her narrow shoulders drooped in defeat and her sweet little face covered in tears brought me to them as well. As the weight of her words settled around us, I realized that these were things she had been carrying around with her for months now. I gladly shouldered the emotional baggage she needed to unload. I quickly blinked back my tears and with a lump in my throat, I said, “It’s been tough, hasn’t it?” I held her in my arms and my tears back, there was no time to cry. This was Avery’s turn.

I want to cry until I break down the wall that has been surrounding me since this all began in hopes that I will find myself again and return to a life that I recognize. But I am afraid. What if I finally unlock my emotions and come undone and at the end I am still empty, still feeling out of place in a life that I didn’t plan for and never wanted? Will my anger and sadness fall away with the tears that I allow or will it leave me empty and hollowed out? Will it take what little composure I still have left? My fear is that I will never find the person I was before all of this. By all outward appearances, I am still me. I smile and laugh and go about my life just like I always did, only now it feels forced and inauthentic. I keep telling myself that once this is actually over, I will cry and let it all out and everything will fall back into place and I will know myself again. When will that be? I keep waiting for the end, but there isn’t one. This story is ongoing.