Friday, February 20, 2009

Anniversary Day

February 20, 2009

To My Beautiful Baby Boy:

Dear Theo,
Today is the third anniversary of the day you died. It has been a difficult winter. It’s hard to believe it’s been three years. But as always, in so many ways, it also seems like yesterday. When I think back now, three years since the day you died, so peacefully, and with so much dignity and bravery, sometimes it’s hard to believe it all really happened to us—to you, to me, to your father, to our family. Obviously, I know it happened, but sometimes I just can’t believe that we went through it all. That something so terribly awful happened to us.
While we were living it, it seemed normal. It was our life. I remember writing about that in this blog—the normality of it all and how sad that was, how wrong it seemed that such a terrible, heartbreaking set of events could become normal. Now I feel, I suppose, removed enough from the immediacy of it all that I can look back and think to myself the same thing that so many other people have thought, that so many people have asked: "How did you do it?" I couldn’t even begin to count the many times people have asked me that question. Or how many times I have heard the similar sentiment, "I don't know how you did it.” I don't know if people really expect a response when they say those things, probably not. I think people generally ask or say those things for a few different reasons, but not because they are really looking for an answer. I think they say those things because they are thinking aloud, wondering how in the world a person could do something like that. How in the world could some one take care of their dying baby, hold that child close as he takes his last breath, and continue to go on living what seems like, to most observers, a fairly normal life. They themselves cannot imagine what it would be like to go through something like that. They don’t want to begin to try to imagine such a thing. And they cannot fathom the reality of actually living it.
I don’t blame them for that. I can barely fathom it sometimes. The reality is though, that none of us ever knows what we will be able to do when we faced with the task of doing something we had never imagined we would ever be required to do. You do what you have to do. I remember sometimes becoming very upset at those sorts of comments—“how did you do it...I don’t know how you did it…I would never be able to do it…I could never survive it”—especially that last, feeling as though the implied or subconscious meaning might be that since I was able to do it and survive, maybe I wasn't a good enough mother. That perhaps to others, my surviving was somehow evidence of my not caring as much as someone who might fall to pieces, someone else, who faced with such devastation, might just die themselves, someone else whose life might stop with the death of their child—but I know that isn't really what they meant.

I think now that our living it, being with you as you lived it, and being with you through your dying, mine and Jamie’s determination to be with you in the moment, every moment, as fully present as possible, our determination to make you our sole focus—and our soul focus come to think of it—is what a parent is supposed to do. We did everything we could to help you have the most pain-free, love-filled and peaceful life and death possible. The only way to have done that was to be fully present, to survive it all with you and to keep on surviving after you died. And not merely surviving, endeavoring to live fully the kind of life that you would wish for us.

Now three years out, thinking on what happened to you, to me, to all of us, feels surreal. It did then too, but in a very different way—then, it felt like a suspended kind of reality, a place where, for us, time and no-time existed at once. In one sense, we were kind of slaves to time—on the clock, giving medicines and formula at specified times through your feeding tube—on the calendar, as the major events of nurse visits, surgeries, follow-up appointments, pharmacy visits, home health deliveries, became major events in our lives—and of course, ultimately living under the specter of the unknown when. Waiting and wondering when and how and what your death would be like. It felt so strange, the way our life completely and totally changed focus as the rest of the world went on as usual. Just going to the grocery store where there were people buying food for dinners for families with children who were not dying, where they talked about daycare and what happened at school, and where the cashier smiled and said, “did you find everything you need today?” and trying not to cry when she asked, was a completely surreal experience. And on top of it all, was a sense of no time—of being suspended in time, of being in our own cocoon of no time at all, just being and doing until.

Thinking of it all now, it seems incredible that we actually lived through it. Sometimes when I think of it now, I feel such deep pain in my heart for what we all went through. I feel a kind of amazement that such a thing happened to us all. Three years after your death, we still go through pain, we will forever experience the grief of your absence from our lives. But thinking retrospectively about what we experienced during that time is now all on its own, a separate kind grief. A different grief, punctuated by the memories and thoughts of what our day to day life was like while you were sick and the specific memories of the day of your death and of how things were for us after you died—the moments after, the funeral, the days, weeks, the months after.

The trajectory that grief takes, I think, provides a natural kind of curve that gives us the ability to look back on what has happened with a different perspective than we had while we were in the firestorm of the actual events and in our early grief. Time has passed, and with it, a kind of smoothing over of the open wound of grief has occurred. Distance from the immediacy of that kind of raw pain allows me to see it and think about it differently —not exactly as removed from it , because those moments are still as clear and accessible as ever, and at times can bring on the same crushing pain, especially when I don’t expect it—just differently. That different kind perspective I have now allows me to feel a kind of compassion and tenderness toward who I was, for who Jamie was, in those months of such intense pain. Sometimes I can look back, and like others on the outside looking in, think, "how did we do that?" When I think on it, I can now allow myself to feel an additional sadness, not only for you and what you went through, not only for the awful fact of your death and being without you, but also for my own heart, my own life, for Jamie's life. That we sustained such devastating, horrific pain, hurt, loss, heartbreak during the months of your dying, when you died and after your dying—it is just so very sad, so horrifying, that such a thing happened. And it happened to me. To my son, to my husband, to my family.

I tell myself, quite often, that there are much, much worse things that can happen, and do happen, to millions of people all over the world, every day. That when our specific situation is held next to so many others, we have so much to be grateful for—the love, support and the care we received, the peaceful knowledge that you knew nothing but love from those around you, that you died peacefully, in a safe and warm place, surrounded by our love. I try to gain perspective this way, to not get mired down in feeling sorry for myself that such a terrible thing has happened to me, that my firstborn child suffered such a fate. But I also have to remember that to deny the pain of it is to minimize the gravity of it all and takes something away from the beauty and magnitude of your life and your death. The fact that other people and families suffer horrific events does not take away from what you went through, what we went through. Neither does it take away one piece of the pain of losing you. I can and should allow myself to feel compassion and sadness not only for the fact of your loss, but for the fact that we endured it and continue to endure it. You were born and we were happy with our little family. We had you—in all your beauty and sweetness—and then our whole world just fell in on top of us. It is so painfully sad that you had a tumor the size of a lemon in your little baby brain, so painfully sad that you endured seven surgeries. It is so painfully sad that your entire brain was destroyed by the very things we all hoped would help to cure you. It is so painfully sad that you endured all of that and so very painfully sad that you died. And so painfully sad that we are left to grieve your absence from this world for the rest of our lives. Sometimes the thought of it all is just so sad that my heart could break a million times over—and has. That my heart can continue to break, over and over, and still continue to beat, to have the capacity to love, to be open, is an amazing thing. That is what hearts are meant to do I suppose. It makes me think of the quote by Andrew Harvey that I used to have on the wall in my office—before you were even born, “If you're really listening, if you're awake to the poignant beauty of the world, your heart breaks regularly. In fact, your heart is made to break; its purpose is to burst open again and again so that it can hold evermore wonders.” Yes.

I can see how easy it could be to slide into a denial of grief—to push it aside and under, bury it beneath a bevy of busy days, loaded work schedules, errands, responsibilities, the day to day business of living. But I know that somehow or other, grief will wind its way to the surface if not acknowledged and brought out. Unacknowledged grief will fester like a splinter under the skin, and eventually the heart and the psyche, as well as the body, will find ways to spit it out. I am learning that as time goes on, the tasks of grieving come to include finding ways to continue to acknowledge our grief as well as to acknowledge the changes in how we grieve. Part of that grief should come to include the grief of losing our own innocence, it should include feeling compassion, sadness and loving-kindness toward our own hearts, that we experienced such pain, and that we will continue to experience it as it changes forms throughout our lives.

I am grateful to have an unwavering conviction that you are with me still. That one thing is the only conviction of spirit I can truly count on. There are times when that fact alone—the certain knowledge of the continuation and presence of your spirit with me and around me and throughout the Universe—is the only thing that gives me spiritual comfort. When nothing else in the scheme of creation seems to make sense to me anymore, there is the knowledge that you go on, you are with me and you are everywhere. Baby is Everywhere. Your continued presence and existence is the one thing that allows the renewal of anything resembling my faith in God. The knowledge that you go on, that you continue to exist, that you are always with me, makes me believe that God must be as well, in some form or other. And that knowledge brings me hope and comfort.

I love you and miss you today and every day. And I am so thankful to be your mother.

Love Forever,


Anonymous said...

An excellent, excellent letter.
Baby is Everywhere.

Sara said...

I just found your blog and have only read this piece so far. I'm terribly sorry for your loss and sadness; your son is beautiful. I'm contemplating some of your thoughts on grieving as I walk my own path.

Julie M. T. said...

Not even sure how I found this website other than I was looking for a reference to dragonfly. Your baby's wonderful name, Thelonious Luther Helbert, caught my attention. I once knew someone by the name of Luke Helbert and also love Thelonious Monk's music. I read through your postings and looked at your videos and cried most of the time. What a courageous and loving Mother you are. Your writings have got to be an inspiration to other parents who are suffering have suffered such a loss.

~The Helbert Fueglein Family~ said...

Julie M. I don't know if you will ever read this again--but if you do, please contact me. I wonder if the man you knew Luke Helbert might be my father.
Thank you for your comment and your kind words.
Sending love,