My normal is different

Over the past few weeks I have met quite a few new people – both online and in real life. There is always the hesitation over when and if I reveal how many children I really have. The pause before I tell my whole story and the silent steeling of my heart as I await a reaction. People are kind. I have found this to overwhelmingly be the case. But I always wonder – what do they think of me now? How has their perception of me change now that they know I have a child who was lost to SIDS?

Before Xavier died, I knew no-one who had lost a baby to SIDS. In one of those cruelly ironic twists of fate, my mother told me a few days before Xavier died how she had bought a red nose pin for SIDS & Kids. She said “Can you imagine it?”. I scoffed and said “that would never happen to our family.” And I truly believed it – I did not think SIDS could be a possibility within our family. I wonder if other people think the same thing. I wonder if, behind the kindness, there remains a belief that a person who loses a baby to SIDS must have done something wrong. I would instantly forgive anyone who thought that, but it does make me hesitant to talk about Xavier’s story. I have been through the guilt and the judgement and I have arrived on the other side. Most days, I no longer blame myself. But when I tell the story to someone new, when it is fresh and shocking to them, I do fear judgement. My story isn’t a pleasant one to tell or to hear. My normal is different.

I have placed Xavier’s story in the world. I have written about him here and in other places. A quick google of my name will reveal Xavier’s story before my own. As someone who has just started a new business, this worries me. Will people judge me before they know me because my son died? Will they assume that I am less capable due to grief? Will the words that have bled onto internet cause me harm in the future? I think any blogger that writes about intensely personal things faces that question. What will people who don’t know me think of me? What image have my words constructed? Will I be seen as brave and helpful? Or as an over-sharer who should have taken more care of her online persona? If Xavier hadn’t died, I may not have returned to the embrace of words. If Xavier hadn’t died, my google search results would look very different. If Xavier hadn’t died, I would be travelling a different path and perhaps in a different career. But he did die. And I needed those words.  And I wanted to share those words with people who felt something they could not articulate. I wanted people to feel less alone. Because their normal is different.

My littlest baby is growing up fast. Toddling and talking and spending time outside of my care. He is happy and thriving and he and his brother are the lights of my life. And I am filling the time busy-ness. I am finding myself feeling anxious about what I have set out to achieve. And I berate myself for feeling this way. I feel as though I waded through the raging seas of early grief and managed to swim. That I should be able to conquer anything. But I was careful with my mental health in those early months. I exercised. I watched what I ate. I slept. I talked things out. I took time to appreciate all that was beautiful. I have let many of those things slip. And keeping my mind healthy needs all those things. Grief has no time frames. You don’t wake up and find it’s over and done with. A little over two years ago my normal changed. And it’s still different.

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A crisis of confidence

I remember it quite clearly. Driving with my sister, Xavier in the back-set only precious days old. I remember telling her how blessed I felt. How everything in my life felt pretty perfect. That there were a few little things I would change but in the grand scheme of things they seemed so minor that complaint seemed ungrateful. Did I throw down a challenge to the universe when I uttered those words? Did life suddenly notice that heartbreak had been conspicuously absent for too long? I have given up searching for reasons as to why Xavier died, but in the early days that was a big one. Life had been too good for too long and the balance needed to swing wildly in the other direction. When my son died, the world beneath my feet crumbled. And I had been so sure of that solid earth. And even now, more than two and a half years later, the ground still shifts.

I might have imagined grief as an ocean of tears to swim through. Or a staged process with an outcome. I might have thought sadness to be the primary emotion. But it turns out, that’s not how grief works. Grief is, above all other things, unpredictable. It changes your footing. Even when you think you have slain a particular dragon, it rears up and strikes again. At the moment, my self-confidence is taking a beating. There are a variety of reasons for this – I am challenging myself and pushing myself into uncomfortable and unfamiliar territory. That’s never easy, but I can’t help but think the girl who I was before Xavier died would be tackling it with more confidence. That she wouldn’t second-guess herself so much.

When I headed back to work, months after we buried Xavier, I was frustrated with myself. Tasks I once found easy took three times as long. Words that once flowed were stilted. The escape that I sought in work didn’t prove the distraction I’d hoped for. Before Xavier died, I swam easily through clear waters. After he died, that water turned viscous. Everything was a struggle. And that, in and of itself, was so frustrating. I was continually exhausted from the effort of merely appearing normal.

Eventually, I found my way. The viscous thinned, but never returned to the consistency of water. And now, as I embark on a new adventure, I find myself thrashing again. I know I am not the only one to do this – to turn on myself and become my worst enemy. I throw unhelpful thoughts and walls up. And when you are busy beating yourself with a stick, telling yourself that you failed to protect one of your precious children delivers a crippling blow.

There are so many things that change with grief. Self-perspective is a large one. Where once I believe the earth beneath my feet rock solid and incapable of movement, I now know it’s quick-sand. When life travels along beautifully, I watch over my shoulder, breath held, for the pendulum to swing the other way. And I find it hard to believe the universe will deliver simply because I wish it to be so. I know that the only way for me to succeed is to believe in myself. To realise that the self-doubt may never leave, but to walk on fearlessly anyway.

Sitting with Sadness

I was sad the other day. Not aching grief, just sad. Low. At first I wanted to reach for grief as an explanation. But I know how grief feels. I can feel it’s distinct pull. This was apathy and malaise and exhaustion and not being bothered. I desperately wanted to feel something else – I had things to do and words to write but it all felt impossible with the weight of this sadness. I tried to bully myself out of it. I am convinced that I can think myself out of any situation. That if I tell myself to snap out of it, I will. Sometimes that works, sometimes it doesn’t. It didn’t work the other day. I tried counting my blessings. It just made me feel more miserable that I was sad in the face of blessing. Sadness feels like failure. We are not meant to sit with sadness, we are meant to strive for happiness. It has become the default expected emotion.

But maybe it’s okay to sit with sadness sometimes. In the darkness of my grief I sat with sadness as a constant companion. It was not possible to think myself out of it. I could not shake it off like a skin, it had permeated my being. And I was given permission to be sad. The saddest thing I could imagine, a baby dying, had happened and it happened to our family. There was no pressure to be happy – to count my blessings and put away the tears. Sadness was to be expected and it was okay. This permission to be sad taught me something. I don’t think it’s fair to expect our emotional lives to ride on a constant high. Constant happiness sounds like a great idea, but expecting it and panicking when it’s not our reality, seems to cause more angst that happiness. There is a lot of guilt associated with being sad. Immediately my mind asks “What right have you to be unhappy?” When I had a very good answer to that question, I could let the pressure go.

There are times when sadness feels like sitting in a great big hole. People pass you, shout down and invite you to come back up. Someone might throw down a ladder or the tools they think you need to build one. And then, once in a little while, someone might come down and join you. Say “I know you won’t be down here forever, but for just a little while, I will stay with you and keep you company.” And with that kindness, the hole doesn’t seem so deep anymore.

I don’t want to feel miserable. I would prefer happiness. But pushing myself to be happy when I feel blue isn’t the answer either. I can’t tell myself to be happy. I can do things that make me happy – and that’s generally where the magic is – to find those things that bring me joy and immerse myself in them. To write, or to create, to dance, to laugh or to read. Sadness is a part of our human experience – it’s not a sign of failure, it’s a sign of humanity.

Holding onto baby

Baby Elijah is a hesitant walker. At eighteen months old he still prefers to shuffle along the floor, one leg extend out the back to provide momentum. He is surprisingly fast. He took his first hesitant steps at around sixteen months and we expected him to start running shortly thereafter. That hasn’t happened. The doctor says it’s okay – that at least he IS walking and if doesn’t move to predominantly walking within the next few months we will look at it further. We are cautiously watching. There is a part of me that is worried. There is a part of me that doesn’t mind at all. A part of me that aches to keep him a little baby. When I see him on his unsteady feet, cautiously placing one foot in front of the other, my heart catches. Another milestone Xavier never had a chance to reach. And a reminder that Elijah is leaving behind a babyhood that Xavier is forever frozen within.

When Xavier died, I ached for him and if I couldn’t have him, then another baby. I wanted my arms to be full of dimpled skin, baby scent, peach fuzz hair and helplessness. I wanted my arms to be full of baby. Then Elijah arrived, and my wish was finally granted. The aching arms finally had someone to hold. But my arms are not quite as full anymore. Life is yet again beckoning in a different direction. My days are no longer completely full of tending to a little one. Elijah is in daycare two days a week, allowing me time to set up and run a new little business. Isaac is back at school and taking to grade One like a duck to water. I am faced with new challenges and once again redefining myself.

After Xavier died, I had to figure out who I was – it was a difficult thing – to become someone I hardly recognised. But slowly the pieces came back together and we were gifted hope when I became pregnant with Elijah. I became someone else again as I emerged from the darkest parts of grief, the hope and the happiness of a new baby coaxing me from under that heavy blanket. I found a new purpose in bringing up my youngest son. He consumed me where once grief had consumed me. And now, things are changing again. Chapters in life close and new ones open. The poignancy of that seems to be sharper when you have left someone behind.

The other day, I felt the turning of that page keenly. I dropped Elijah at care. He did not cry and he happily played with a toy as I left. I went into town and met with people and for the first time I spoke about my new business like it was a realistic proposition. The wheels started to turn. I caught the bus home, feeling confident and excited, rather than scared and deluded. The lady next to me started chatting about the weather and it led to other things. She asked if I had any children. These days, I say “I have one at primary school and an eighteen month old” and then I whisper “and one in heaven” to myself. I asked her the same question. She looked at me sadly “I have one son. He died two years ago to the day and I am feeling very lost today. He was my only child. The love of my life and he died of cancer at not even forty years old.” She had no grandchildren. Her son and his wife had chosen travel over babies. She told me about her son and I asked her questions. I was going to tell her about Xavier, but she didn’t need my story. She needed to tell hers. I got to learn about her one true love and I was reminded, yet again, that each of us has a story to tell. No-one lives the perfect life. We need to be kind and mindful of each other – for every one of us has shards of glass in our hearts. And how blessed am I, that I get to see my baby Elijah grow up.

And so I will smile and clap as he shakily walks, letting go of my hand.

The true things that people don’t see

Here are some things that are true:

  • I was pregnant for nearly nine months with Xavier. It was a happy and uneventful pregnancy.
  • I gave birth to Xavier. I birthed him and I held him and I cried as he was placed against me for the first time.
  • He lived for two little weeks. He fussed and he cried and he made me laugh.  He was held by a proud big brother.  He met family and friends.
  • I am a mother to three sons.

I felt like I had to write these things down. To make them feel concrete. Because so often, those facts seem unsubstantiated and unsubstantial. Paper thin. A mirage.

When people meet me for the first time, they presume I am a mother of two. People ask whether I will have a third child. There are only two little beds in our house. Two carseats. Two little heads that snuggle against me when I hold them. I hold two boys in my arms and three in my heart. I am a mother of three, appearing as a mother of two. And very often that appearance feels more real than the truth.

In the wake of Xavier’s death, I wanted to scream about his existence. I would tell anyone who would dare ask. He was so real to me. My life was so full of him. I felt I had to advocate doubly hard for the child no-one could see. He was the largest thing in my life for a long time and he could not be seen by anyone else. There was a large and painful hole in my life where my baby boy should have been. A gaping black hole that could swallow a person. But that hole started to close. I learned to experience him in different ways and that allowed me to miss him less. I think it was the missing that made the hole so large and angry and empty.

Sometimes it feels like my life has been cut into thirds. The girl before Xavier’s death. The girl in the wake of it.  The girl who emerged from the darkest of grief.  And it’s hard to grasp onto the girl before. It’s hard to think of those people as linear. They feel more like tangents.

My life now is full – it is not without pain – but for the most part I have no complaints. There are days when I miss him dreadfully – his birthday or anniversary – and there are days that I miss him for no other reason than he is gone. But I do not feel the pull of that dark hole anymore. And here I stand, a bereaved mother but no longer a heavily grieving one. A mother of three boys in a world that only sees two. And a fading memory of a tiny boy with peach fuzz hair and eyes like his great grandfather’s. His essence, who he is now, is alive and vibrant in my life but it is getting harder to recollect the tiny baby. And so it is with time. And so it is with grief.

The Truth about Rainbow Babies and Sleep

Sleeping BabySleep and babies is a complex issue that we often make light of. We laugh in public with our friends about how hard it is and we cry in private over how hard it is. Having a baby after loss has added another dimension to an already fraught subject.

My second son died in his sleep. He died doing nothing more dangerous than taking a nap. Babies need sleep, so do parents, and yet how could I trust it? When I was pregnant, I would say, “I just want a baby that doesn’t need to sleep.”  Of course, that would be ideal if I didn’t need to sleep. In those early weeks, when I was so very sure that Elijah would be stolen away in the same way Xavier was, I did not sleep very much. But it was okay. I could handle it with my husband home and the sheer exhilarating joy of having a living baby in my arms. But it wasn’t sustainable.

Up until Elijah was five months old, he slept in a cot beside my bed. He would stir and I could comfort him. When my heart starting beating fast at the thought of losing him, I could place my hand on his and be reassured. He stayed in that cot for longer than he should – he too large for it and me not ready to let it go.

Then we moved him into his own room, with monitors and sensors and a deep-seated fear. I would hesitate before entering his room, steeling myself for the worst. He didn’t enjoy the move and at seventeen months, he still rarely sleeps through the night. He would cry, and I would immediately go to him. How could I not? How could I deny this precious little one anything? What if his life was cut short?

When Isaac was very little, and I was completely innocent of loss, I would breathe a deep sigh of relief when he finally settled. Mothers know that feeling – when your baby is finally silent and relief sinks into your bones and meets the tiredness that lives there.  When Isaac’s cries finally gave way to softer breath and sleep, I would lean back into my own pillows, exhausted and fall into oblivion. I could not do that with Elijah. He would settle and a new set of anxieties would begin. A crying baby is a living baby. A silent baby might not be. And so whilst he had the sleep he desperately needed, I lay awake with terrors I could not silence.

My fears for Elijah have lessened as he has grown older. I no longer go to bed convinced I will wake to tragedy. But terror still flares. When he is unwell, I imagine the worst. And some days, for no reason at all, I will hold him tight, fearful for his future.

I have pretended that surviving on four to six hours of sleep a night is perfectly normal. That is perfectly possible. That it doesn’t effect me. It does effect me. There have been times when I have driven and I shouldn’t have. There have been times when I have placed myself and my children in danger by doing so. Yet, somehow, the possibility of an accident is distant and improbable. Whilst the possibility of Elijah being stolen away in his sleep is plausible, and for the longest time, even likely.

Someone once described managing the sleep of a rainbow baby the following way: imagine losing your child in a plane crash. Now imagine having another child and being forced to take a plane trip with that child, several times a day. The risk of Elijah dying by SIDS is not significantly greater than any other baby. Yet, for me, it seems so probable. For the first few months of his life, I was sure his plane would crash.

We now have a child that cannot settle himself to sleep. It feels like a failure on my part. We have had to exercise some tough love and let him cry it out. Every sob is a dagger to my heart. Every single fibre of my being wants to go into his room and comfort him. I am terrified that he will not wake in the morning and his last memory will be of crying out for me and being ignored.

Elijah brings immeasurable joy to my life. He has brought healing when I thought I would never be healed. But there will always be cracks. There will always be the whisper of life lost. There will always be doubt. And I think I will struggle with his sleep for a long time yet.

Christmas and Regret: Did I give him enough?

Christmas WreathThe Christmas tree has been packed away. The lights have been stowed. Stockings no longer hang and wreaths have been taken down for another year. Christmas is well and truly over and I am a little sad. Not the usual Yuletide  hangover, but regret that Christmas wasn’t as magical as I could have made it. We had sickness and birthday parties, beach holidays and projects that all encroached upon the season. Christmas cookies were hurriedly baked on Christmas Eve. The school carols were rained out and we didn’t get a chance to go to another. I didn’t go to a Christmas Eve mass, as I was so very tired and unwell. Hand made Christmas presents went unmade. We didn’t take the train one evening to see the big Christmas tree in town.

I didn’t make Xavier a decoration this year and I didn’t place a Christmas tree beside his grave. His little Christmas area was necessarily condensed due to the reach of a curious toddler.  I didn’t get a chance to write Xavier a letter. Out of everything, these things sadden me the most. Sometimes life gets in the way of the best laid plans. And I feel like he was forgotten – not by family and friends, but by me. That he didn’t have the Christmas he deserved.  Continue reading