Love for today . . . and tomorrow

A few weeks back, the Dragon Mom article kept popping up on Facebook. I gave a heavy, knowing sigh when I read, "finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go." I know what it is to do that, but I don't know what it is to live through my son's life knowing I'll have to do that. 

Instead, I had a really sick baby who was expected to live. There would be meds and follow-up appointments and perhaps more surgery or other procedures. There would be equipment to figure out and insurance and other programs to navigate. It would not be easy, but we worked under the assumption that Henry would make it. He'd get through the ups and downs and interminable hospital stay and be okay. The definition of okay kept shifting, as much as I tried to pin it down, but okay kept being the assumption. 

I loved him constantly, but I had to remind myself, more than once, to live in the day. Before Henry's surgery as we were struggling with the oxygen monitor's frequent beeping and trying to fatten him up, I kept looking ahead, counting down days, weeks, months til he could have his surgery and lose the oxygen and we could really start our life. Except the clock was already ticking. "I'm wishing away his life," I realized, long before I knew how short a life he would have. So I reset and focused on enjoying him as he was. I hated that oxygen monitor, but I loved my boy and our peaceful mornings. I focused on what he could do, not what his peers were doing, not what he couldn't do. And at the same time I set up Early Intervention to help him do all that he could do.

When Henry was in the hospital later, I at first refused to bring things from home—blankets, clothes, toys, music. Having stuff at the hospital felt like admitting we were going to be staying, and all I wanted to do was get my boy home. It took me a long time to realize that I was doing it again, wishing away his life in wanting to get out of a sucky situation. "This is his life," I reminded myself. As much as I hated living there, hated the anxiety and the separation from Brian and the machines and the lack of privacy, it was his life, and with that realization I changed. I read to him more and played music and set up routines and took pictures. I brought blankets and clothes and hung up the cards people sent us.

Even as I settled in, I told him about what we would do when we got out. I told him about the friends he would meet and the farm down the road. I told him about riding the school bus when he got bigger and working in our garden. I told him about where we lived and about the vastness of the ocean that he would finally see some day. I loved him for the day and believed the future for him. 

I had stripped down my dreams and expectations, but I believed he would come home. I believed he would one day go to school. I believed he would visit my family. I believed he would live and grow. 

We don't know how long we have with our children. We should love them right now, today. But, unless we know they have no future, parenting isn't just loving them here right now, part of parenting is believing they will grow up and helping them along the way. 

The idea of just loving them today, noble as it sounds, isn't possible long term. Or rather, loving my children today is possible, but acting solely on that isn't. I have to say no sometimes because things aren't safe or healthy. I have to say that I'm working sometimes, not because I'm attached to furthering my career, but because part of parenting is keeping a roof over my kids' heads and putting food in their bellies.

I try to find balance. I try to do my work and get food on the table and clothes clean and still say yes when Kathleen says, "Wanna play play dough?" or "Read a book" or "Let's put on crowns and take pictures." I love my kids today. It's why I set up a cozy corner under the dining room table and lay down with them to read story after story after story even as I felt my back seizing up with the sciatic problem that's plagued me since my first pregnancy. It's why we turn up the music and dance together as a family most nights before bedtime. It's why even when Kathleen doesn't get a story before bed because of all her stalling tactics in getting ready, I sing the "Kakeen" song to her, the song I made up that tells her how very loved and wanted she is. 

Yes, by all means love your child today. Take time to notice them as they are, as they grow, as they change. Take time to snuggle and sing and read stories and listen to them. But, unless you have a reason not to, believe that you will watch them grow and change. That belief is hope and love too. 

Remembered

Two years ago today, already and only, we said good-bye to Henry. 

Henry in October, days before we almost got discharged from his long hospitalization for the first time. He was so awake and alert and interactive this day. I remember his smiles and little noises and how intrigued he was with this little caterpillar. I had such hope and expectation for my boy.  

All month, I have been wanting to just sit, to be quiet, to have time to think or the space to not think, and it hasn't happened. But today, I gave myself that gift. I took the day off from work. I didn't hop on the computer first thing in the morning as I usually do. I didn't plan or try to do anything. When Kathleen napped, I rested on the couch, remembering lying there with Henry on sticky summer days. I remembered how perfectly he fit on my chest, how our breathing would slow together. I remembered how as he got bigger, he wouldn't just lie there anymore. I smiled at the effort he made to raise his head, the only time he liked tummy time. I rested while I could with these memories, the peace of those moments settling with me briefly. 

And when Kathleen got up, I played and I snuggled with the baby here with me. I smiled and I laughed with her. And I cried too. Cried in amazement and thanks for all she is and does. Cried with anger and sadness for all Henry never got to be and do. And yet he was and did so much. He is still so much; he's just not here. 

Brian and I went to the cemetery, standing briefly, huddled together in the bitter cold and blinding sunlight on the icy snow covering his grave. There was nothing to do there but leave the little heart shaped wreath I brought, let sobs wrack through me, hug Brian tight, and nod that it was okay for us to go, get in the car, get out of the cold. I felt so much the need to go to the cemetery today, and yet there I felt helpless and didn't know what to do. 

Tonight with dinner, I listened to his CD, filled with memories of sitting in the weeks before his surgery, tears streaming down my face, worried, worried, worried, despite what the song told me, worried that every little thing would not be alright. It's strange looking back on those fears. I was so anxious, and yet I never really imagined or believed that I might end up where I am. 

But here we are. 

I knew Henry had not been forgotten. I knew that Brian and I had been in people's minds and hearts during this dark month. Still, I have felt lonelier in my grief this month than ever before. But there were notes, emails, flowers, calls to let me know that truly we are remembered, Henry is remembered, and that we are all much loved. 

To live in this world

A friend emailed last night to invite me to a reading by Mary Oliver, and immediately I thought of these lines that I love, these lines that arrived in one of the very first cards after Henry died: 

To live in this world

you must be able
to do three things:
to love what is mortal;
to hold it

against your bones knowing
your own life depends on it;
and, when the time comes to let it go,
to let it go.
    —Mary Oliver , "In Blackwater Woods"

                   You can read the whole poem here.