Friday, November 29, 2013

Torn

I am sitting in my living room while my eldest daughter, EllaGrace, sleeps. I am struck by how many things can go through one's mind at once. I set out to write about feeling torn, always, between: life and death, happiness and sadness, appreciation and anger, excitement and fear, peace and torment... But I wrote my first line and was reminded of another dilemma I will now face - how will I answer the question "how many children do you have?" - torn between privacy and truth?

EllaGrace is my eldest daughter. She is my firstborn. I used to call her 'my daughter', and cognitively I know this is still true. However, I used to use this language as a title, Daughter, my one and only. The truth is, she is no longer my only daughter. I knew my second born child, a daughter, for only a short time outside of my womb, but she was real. It seems as though I negate her existence when I call EllaGrace 'Daughter' now. On the other hand, writing 'while my eldest daughter sleeps' seems to suggest that my second one does not, as if she is awake, with me. I wish so much that this was the case. Some how, once again, language fails me or tricks me. Maggie's death has taken with it the use of the word daughter... perhaps not forever.

If I cannot sort out how to use the word daughter, then likely the answer to outsiders' questions "how many children do you have?" or "do you have children?" will continue to evade me. Maggie and Patrick were so small, innocent and their lives so short that the only word with which I can describe the experience is intimate (outside of horrific, awful, heart wrenching, etc.). That being said, although they died 36 and 32 days ago, I continue to attempt to maintain that intimacy. Few people knew them, have seen them or their images and the story of their lives and deaths is mine (and Lee's) story to share. It is intimate. Yet, I am the mother of three beautiful children. Sadly only one is living. That is the true answer and I do not want to exclude Maggie or Patrick from the answer because their lives were so precious and have had such an impact on me/us. I am torn between privacy and truth.

As I am writing this, as I began to say, I am sitting in a quiet room. there is sun, blue skies and snow outside but I am warm and comfortable. EllaGrace is sleeping. We have just been shopping where she chose one, very large and very pink Christmas ball ornament which we have hung in her bedroom window. We are preparing to decorate for the holiday season. And I am listening to peaceful music. It is a peaceful moment. The holiday season brings excitement and with it family and joy.

Imagine if you will, peeling a layer away from that image - happy, peaceful - the music that I am listening to is the music playlist compiled for Maggie and Patrick's goodbye. I am listening to "I dreamed I held you in my arms, when I awoke dear, I was mistaken, and I hung my head down and cried..." - who knew that "You Are My Sunshine" could be so accurate? Many of these songs are ones that I have sung to EllaGrace. They are now songs that I connect to all my children, but in the worst and perhaps best way possible. I can still hold EllaGrace and sing to her in order to offer her comfort, distraction and connections. I sang to and played the music for Maggie and Patrick in the last moments of their bodies' existence. I know that with the music, they also felt my love, saw my tears drop on the floor around their casket and heard my pleas for forgiveness. It is so important for me that they know how I mourn for them and how much I love them. I know that I did my best in those moments so the music brings me that peace. And yet, this music brings me back to their goodbye - I can walk myself through the entire, awful experience from seeing the casket brought into the space, others' tears, and the casket being taken away. I can feel the pressure that was building inside me as I waited to be alone with Lee so that I could fall to the floor and wail. Scream for them. Try to get the inner torment out although it will never be completely soothed.

The fascinating thing about the human experience though, is that we can experience opposing emotions. My joy in EllaGrace and planning Christmas are real. My appreciation for having carried Maggie and Patrick as long as I did and having the moments and days that I had with them is entirely genuine. When I laugh with my husband over dinner or dishes, it is a real laugh. But, I also fear a first Christmas without Maggie and Patrick and feel completely saddened that they will not be here with us. I am very angry that infection set in so early and regret that I did not have more time with Maggie and Patrick and that I did not examine and memorize every inch of their bodies. I never thought to look at their bums - and this may seem silly to others, but the truth is we take for granted diaper changes and bath times... I just imagine how tiny and perfect their bums would have been! And that fills be me with happiness and heartache, conflicting experiences, once again.

For now, I will just listen to the music...

"And you should always know
Wherever you may go
No matter where you are
I never will be far away

Goodnight, my angel
Now it's time to sleep "

Thursday, November 28, 2013

A Double Whammy

Today is a double whammy: it is both a Thursday and the 28th. Thursdays are the day by which my pregnancy weeks were being counted. I am meant to be 30 weeks pregnant today. And it is the 28th. It was the 28th of October when Patrick died. When better to try to resume blogging than a delightfully emotion-laden day like this?

I keep thinking about being 30 weeks pregnant. I would probably not have been able to even reach the laptop upon which I write this very minute due to a huge belly. But, I would still be feeling Patrick and Maggie move around. Patrick had his head to my right side and bum and feet to the left and he often stretched out. I can imagine how much more uncomfortable that would have been as he grew bigger and stronger. And my Maggie, who was all squished up, her bum sitting right above my cervix. Her movement was so limited that in my last weeks of pregnancy all that I felt was a light wiggle very low in my abdomen, as though she was trying to shimmy her body around. At 30 weeks I would have been able to see much of their movements too.

Most important of all, if I had lasted until 30 weeks gestation, the odds of survival for both Patrick and Maggie would have been significantly improved. I would have had all the reason to hold on to hope by this point. They would have needed NICU of course, but their stories there would have been less tumultuous.

I ask the universe this: why? Why could I not have avoided infection for 5 more weeks? I had already done so for 10 and I would have been happy to remain on bed rest growing Maggie and Patrick. Why have infection set in at 25 weeks? I have done my research and heard the stories, miracles/good luck happen in situations like mine, so why didn't that happen for me? Why is it that I am sitting here on a maternity leave with no children to hold? My arms are empty and my heart broken. Five weeks would have felt like no time at all, in fact, it seems as though it was only a couple of days ago that I woke up shaking and went into labour. And it seems like only moments ago that I had hope and held my children.... I was not asking for much then, just more time.... now I have all the time in the world to remember them and try to move forward but truly I would prefer that time freeze.

As I mentioned above, today is not only the day that I am meant to be 30 weeks pregnant. It also marks one month since Patrick died. I think about him every day. I picture his tiny, knobby knees and his perfect nose. I picture his blonde hair. I can still see his tiny tongue suckling on the breathing tube. Even his tongue was beautiful and perfect. I can remember how he moved. But I can also remember how much his movement changed when he began to experience pain; he did not rest, his long, thin arm waving about. And his tiny little face, beneath tape and tubes, could be seen grimacing and crying. I never heard him cry but I did see it - and I thought that was heartbreaking.... but holding him while he died and missing him was god-awful as well.

One month ago today I woke up with fear. A doctor had told us the night before that Patrick had severe bleeding in his brain. We woke up and went directly to the NICU to find his specialist. The information we gained was bad. But the doctor, like us, clung to hope and suggested we wait for the latest results and manage his pain. I am devastated to recall the moment she ran into my hospital room and explained that it was much worse: that there was more bleeding in more places. My tiny son, such a fighter, was suffering. So, one month ago, Lee and I decided for the second time in four days, to let one of our children die, rather than prolonging the inevitable. We phoned our families and went to Patrick.

I hate to relive the 28th and the 24th. I hate to think of Maggie and Patrick dead; their tiny ashes now in a hand-crafted urn by a dear friend in my bedroom. But, the comfort of thinking of those days is that at least they were still alive then. On each of those days I had some hope and I like that part. The hardest part is remembering that those were also the days that hope for them was taken away.

People often say to me that they can only imagine the pain of losing two children. I have thought about this some, and here is my response: don't. The pain, loss, sadness that I feel is all-encompassing of my emotions, energy and physical self. Patrick and Maggie are the last thing I think of at night, the first in the morning and are often in my dreams. My holidays are planned through a process of imagining that it was supposed to be different - a pregnant Christmas. a NICU Christmas - and then finding a way to include Patrick and Maggie in the celebration. I sleep with each of their stuffed animals in my arms or on my chest; the very places I would have held them if they had survived. When I cry I can feel the sorrow coming in waves from my core. It is awful. So, please, don't imagine it. Do not try. Not because you can't possibly imagine (indeed, perhaps you can), but it is simply too distressing of a thought process. Do not picture losing your child (real or imagined), do not picture their death, or funeral, or your own emotions afterwards. Just know that it is awful and appreciate that your children and family are with you still.

Saturday, November 9, 2013

Our Babies' Goodbye

I want to write this before I forget. I am listening to the playlist that was playing at the small gathering that we had to celebrate and say goodbye to our children, Maggie and Patrick. Dixie Chicks singing "Sweet dreams, little man. My love will fly to you each night on angel's wings." I am not religious, but I hope that my love finds its way to both Maggie and Patrick each day and night. I could not miss them, or long to hold them, more than I do. 

On Monday November 4th, just one week after Patrick died, we gathered with family. It was not a funeral or a service, but it was a goodbye. Our intention in planning it was to have one last opportunity to parent Maggie and Patrick. To be present during their cremation, to offer them comfort and love in the last piece of their passing. 

Many people talk about babies who have died as 'angels' or as 'sleeping'. We don't necessarily use this language, but we had treated each of their deaths as a quiet time. As each of our children died in my arms I/we sang our family's lullaby. With that in  mind, we first decided that we would read to them before singing them to sleep. We would have done the same for Maggie and Patrick and this was our last chance to do so. We read "I Love you Through and Through" and "Love you Forever" to them that day. We also played music, the vast majority of which were lullabies: Brahm's Lullaby, Twinkle, Twinkle, You are my Sunshine. We also included some songs which spoke to our love and loss - messages we wanted them to hear. 

We also wanted them to know us, our family, the lives we had planned for them. I printed photographs of us during the pregnancy, our extended families and of EllaGrace. We wrote on each of the photograph, telling the babies about how much we loved them and were excited to meet them, who they would have played with and what life might have been like for them. Then we wrote each child a long letter, reassuring them that we could never forget the precious few moments or days that we had with them and that we will love them and mourn for them forever. Writing this, although it was the best solution I could find, my heartbreaks because a letter to an infant is just so insufficient. I wanted to give them so much more, daily representations of my love as their mother in the currency of snuggles, playtimes, giggles and kisses. 

Outside of these plans, we brought photographs of the babies, prints of their hands and feet, stuffed animals which belonged to them so that others could get to know them as much as possible. 

Planning and imagining the goodbye for one's own children, in my experience, cannot truly prepare you for the experience. We entered the chapel, which is above the crematorium. There, in the centre of the room, was a small white rectangular box. It could not have been more than two feet in length and was quite thin. It stood alone on the metal frame accustomed to carrying much larger caskets. It was covered in a soft, felt-like fabric - much more suitable for babies. The moment I saw that box my legs buckled and I believe in that moment I felt my heart be ripped from my chest and my lungs collapse - perhaps my whole self and soul. I can never be the same again, my identify and my everything has changed since losing children and the moment I saw their casket - alone in a big room and world. I could not move, I just starred at that small box, which they share. I remember weeping and repeating "no, no, no... please.... no, no".  After all of it, I could not believe I was in that room, facing that small casket and another awful day. I will never be able to describe the all encompassing grief, fear and devastation that I experienced like a wall of bricks in that moment. Recalling the moment is nearly as painful, and finally my tears are flowing again, after days of avoiding it. Will my tears ever stop? 

Some how I found my physical strength and began to arrange the props we had brought with us. I laid out the photographs and letters for Maggie and Patrick on top of their casket. I stroked the casket, as though they could have felt my touch once more... I spoke to them. I can only wish that they heard me that day. 

The goodbye seems to have been an appreciated time by my family. They also said their goodbyes to Maggie and Patrick. If there was a part of them that ended that day, then they must know that the entire chapel was filled with love for them - not just my own, though I know it could have filled the space without any help. We listened to music and family members looked at the photographs - either a reminder of the short moments that they met the babies, or a first introduction. EllaGrace enjoyed handing out Kleenexes and playing with toys. She said a short goodbye to Maggie and Patrick's casket with me and blew them one single, sweet kiss. She was their big sister - is? - and she would have been so wonderful in that role. It is not just a loss for me or Lee, but it is a loss for our family, the one we were planning with EllaGrace. I read the stories as planned. 

And then the casket was removed.... my last moment of being with their bodies, a physical, real representation of my children. It was not wheeled away, or carried by pallbearers, but picked up in the arms of a single funeral home employee because it was small and light; it held the bodies of two, small, entirely loved infants. My babies. Somehow each time that someone takes them away from me - when I gave up the body of each of them after holding them, and this experience - it feels like a new, final, awful goodbye. And as I think of those moments I can feel my body tremble, I feel my heartbreak and my chest hurt and know that I am inconsolable - again. Grief is as much physical as it is emotional.. I feel them, I feel my loss...

After that I sat and stared. I stared at the metal carrier that had held the casket moments or minutes before. I waited for everyone to leave so that I could crumple to the floor beneath me, curl up, weep and never leave. I wish that I was still there now. I wish I could rewind time. Luckily, cousins and my husband distracted me enough that it didn't happen exactly like that. Now I just have to live in the present... feel the loss and find a way to move forward from something that I have no desire to leave behind. 

Friday, November 8, 2013

Change in Blog and a Change in Me

I have decided to try to start blogging again. I guess the dismal prognosis part was accurate, but I have so many lost hopes, tears, and memories to process. I think that some posts - like today as an example - my writing will be scattered, much like my own thinking. I have so many thoughts running through my mind...

Most of all, I want to acknowledge that Patrick's one week passed on Monday. I am days behind recognizing this, but the universe knows that I thought of him all day on Monday. Truth be told, I think of Maggie and Patrick all day, everyday. I keep thinking about watching him. It's amazing how much I can cherish and recall the tiniest of things: the day he and Maggie were born, while we held Maggie's body in our arms weeping, I put my hand in his isolette to touch him for the first time and he gripped my finger. I am terrified that I will forget how that felt on my skin and in my grieving heart. Or when he was one and two days old and we could watch him sleep and move his arms and legs around, so congruent with how he had felt inside me. He was so tiny, but he had the nose of a little person already. And he had all his fingers and toes, and he could wiggle them. I am certain that he would have developed into a baby who looks like a little old person, and imagining that brings a small smile to my face. But it is usually followed by deep, deep heartache and grief. My word, they were both such wonderful, beautiful children.

As I approached viability in this pregnancy I became increasingly concerned about my breastmilk. I knew that I wanted to provide it for the babies but felt so uncertain I would be able to do so when they were in isolettes, untouchable, for the first months of their lives. So, as soon as I was able after delivering, I started pumping and trying to stimulate in order to provide for Patrick. I had the lactation consultant come in to see me several times. I sat beside Patrick in his isolette and spoke to him and imagined holding him, while I held the pump to my breasts and tried to get them to produce milk. Expressing colostrum was frustrating because it was so little, but it was enough for Patrick. One day I did not produce enough and they had to give him milk from the breastmilk bank. I worked harder. And when he was three days old I felt my milk coming in - I was so glad to be providing more milk, knowing that one small bottle could feed his tiny body for days. Cruelly, my milk came in fully the day that he died. It was the one thing that I felt I could do for my tiny son, the one thing that might have been within my power or control. And I succeeded. But I lost him anyways. The discomfort of having a large milk supply with no baby but lots of grief was difficult to manage - I wished it away. But now I have barely anything left and I am heartbroken... it's as though my children are farther and farther away from me as my body heals and returns to normal.