There are moments in life that you can pinpoint as life changing. Sometimes, they are small: a sudden realization that shakes your faith or an encounter that makes you question the path you have chosen. When we are young we tend to think birthdays, graduations or promotions will be the events that will change us but often those moments come and go, leaving us fundamentally unchanged.
Your wedding day will change you... but not as much as the bottom-falling-out-of-the-earth moment that you realize you are hopelessly and completely in love with the person you have chosen - that they have become air to you and you cannot possibly live without them. Finding out you will be a parent will change you. And looking into your newborns eyes, your heart will fill with wonder and hope and terror and a new, alien love... yes, your world changes. But not as much as the day you break down and let that same sweet child watch tv for hours on end or shove a lollipop in their screaming mouth so that you can please-for-the-love-of-god-get-one-moment-of-peace... when you are humbled and doing the very things you swore you would never - EVER - do? Yes, then you are changed.
Some changes open our eyes to the universe, we find a greater compassion for humanity or reach new levels of despair.
The day they found Jason's cancer, we changed, yes. In the face of that shock and terror my world shrank and my focus sharpened. My love, lying in a hospital bed in agony, became the only thing I could see. I had a few satellites in my field of vision... our children (it is hard to admit that, but it is what it is.), our family and the people we loved. Everything else faded to black. Every ounce of frenetic energy I possessed was focused solely on making Jason Ok. And then came the moment he was diagnosed and my world contracted and expanded again. We gripped hands as the doctor's words floated in the air- dark, menacing things. I hid my head and held my breath. The moment the doctor left I climbed into the bed with my husband, careful of all these new wounds, and held him so tightly my muscles began to shake. If I didn't let go, we coud stay just like that and he couldn't be taken from me. If I was strong enough, I could make him Ok.
When he came home, I took care of him possessively. I gave him his meds, changed his clothes and blankets and endless cups of ice. I cleaned his colostomy wound and knelt beside him as he began vomiting up pieces of his stomach, wiping his face with a cool washcloth and watching, always watching. If I left him for more than a moment, I panicked. While he slept, I curled beside him and researched treatments, emailing copies of his pathology report everywhere and anywhere that might offer some hope. I spoke with doctors and patient advocates and took a blow to the stomach each time they told me the same thing. Too late. Way too late.
And then, a day after being discharged, he began to vomit blood. He was grey, disoriented and confused. I called the doctor and my friend, our nurse Nessa, who told me to take him to the ER. He fought me, told me to leave him alone. He begged me to let him stay home, let him go in peace. My heart broke again as I became increasingly frantic and shrill- pleading and then threatening. Finally, he got into the car and my dad drove us to the hospital. I hld his hands and apologized over and over, I was so fucking scared. I watched him lie back and resign himself to what was happening. I thought I was watching him give up.
He continued to lose blood, the room was a horror. Nessa arrived and gave me some quiet strength, helped me protect him from the worst of it. After they tried to force a g tube into his nose as he screamed he had enough. He or I or someone made them stop. He got more medicine and drifted for a moment and I dragged my friend into the hall. "You know what I need to know. Is this what I think it is?" I forced the words out, my brain screaming for my mouth to stop. She awnsered me with the frankness and honesty that was everything I needed and more. I knew. He knew. But we hadn't acknowledged it yet.
I went back into the room and sat, memorizing his face. He woke up and looked at me and in that very moment my whole world changed yet again. This man who I knew inside and out, who I loved from nearly the moment we met, who could always speak volumes to me with a look... his eyes told me everything. I remember whispering "You know what I asked her." He came back to himself and pulled me close. "I know." He asked me to get him a paper and pen and then Jason layed back in the hospital bed and made me a graph, a timelime of his symptoms and decline. He was always so damn logical and he wielded practicality like a weapon sometimes. I asked him what he wanted, and all he wanted was to go home. He wanted to take our children to Disneyland and give them one last memory. He wanted time to hug them and hold them and sleep next to me in our bed. He wanted to see his friends and family, even if at that point he barely had the energy to speak much. He wanted to go peacefully, with dignity and on his own terms.
Maybe I should have fought him. Maybe if I had kept searching, kept pushing for a miracle, maybe we would have had a little more time.
But, I didn't. Instead, my world changed again. Some deep part of me accepted it, just a little bit. Enough that I made the decision, then and there, to do whatever I had to do to take care of him, to ease him out of this world as gently and tenderly as all the love he had given me through our years together. He went into hospice care that night. The hospital moved us to a private room in the ICU and he was given comfort care. My parents brought the kids to the hospital since we were not certain he would make it through the night. We had talked to them already about cancer and treatments and all the possible outcomes, but we hadn't yet had time to talk to them about finality, about saying goodbye. That conversation was a whole new kind of heartbreak.
Jason grew up without a father and it had left an indelible mark on his soul... our kids and their futures were the driving force behind everything he did. He loved them fiercely. The night we got engaged he very bluntly told me that- no pressure, but he really wanted to have babies before he turned thirty... and he wanted two kids, first a boy and then a little girl. He was convinced that, his contribution being the deciding factor in thier genders, he had the power to make that happen. A few weeks after we found out we were expecting Ozzie, he cradled my still flat tummy and proudly announced that it was a boy... and then crowed like a rooster when, months later, his prediciton was confirmed. (He did the same when I was pregnant with Ivy, convinced he felt a "feminine energy" emanating from my now not so flat stomach.) If anything broke him, it was knowing he would not be there to see them grow up.
Ultimately, his death was not the peaceful and painless one that he deserved. I will save that for another time, when I can visit that horrific time without spiraling into despair. But, that is not what I wanted to write about tonight anyway. What I want to talk about are the gifts we were given in the too short time before his death. Because, in the midst of all the pain and suffering, there were blessings. And they are all I have to hold onto now.
We had a strong marriage to begin with... I never worried about falling out of love or boredom or the possibility of divorce. We were going to grow old together, travlel around like gypsies and annoy one another with stories we had told hundreds of times before. We loved each other, day in and day out, through thick and thin. But, as with any couple, the daily grind has a way of softening the passion of the heady early days of love... its so easy, when you are both working and raising kids and making the paychecks last, to lose sight of what is really important. To argue over petty issues and to take for granted that the person you love will always be there. There is always time for tomorrow, until there isn't.
But we had the gift of a little time... time to fall in love, all over again. Time to say all those things that float in your brain & your heart, stockpiled away like nuts for winter... the scary things that lay your soul bare. Neither of us ever very comfortable with vocalizing deep emotion (more on my end actually), we had the chance to tell one another how much we loved and appreciated one another. He had time to hold the kids and tell them how mu h he loved them, how proud he was of who they were and who they would become. He packed a lifetimes worth of important daddy talks into the the they spent together. He did his very best to reassure them that they would hurt, but that they would be ok. That he hoped his death would be something that would make them stronger, more compassionate people. He gave all of us the gift of perspective and he changed our world again by articulating just what the things that truly matter in life are... love, family, self respect and acceptance. He did his best to prepare me to take over the things that he had always taken care of and constantly assured me of how strong I am, that this would not break me... and that I needed to find a way to be happy again someday - that he desperately hoped I would find someone to love again. I didn't want to hear that, but I had to let him tell me. I kept the feeling that I will never love anyone else the way I love him to myself, but he knew.
We were also blessed to have an outpouring of love and support from everyone in our lives... and even some who weren't. Our family and friends stepped up and made it entirely possible for us to just be together.... feeding us, cleaning for us and distracting the kids with fun when we needed them too. There are so many of you that I will never be able to repay the kindness and care you gave us... but know that should tradgedy, in whatever form, strike, I will be the first in line to do whatever I can to help you through.
Saturday marked three full months since Jason left us. I am struggling, we all are. But I will always have these stars in the darkness and I know with time thier light will shine brighter, softening the darkness.
I love you Jason. There aren't words big enough to tell you how much, but I know you know.