Anne Marie Gillooley shares the heartbreaking story of the loss of her son Max and the attempts to rebuild the lives of herself and her husband while keeping their son's memory alive

Just over two years ago I was over 41 weeks pregnant with our first son. I spent those days in January waiting impatiently for the first waves of pain that would tell me we were about to meet him. Instead of those pains, on a stormy Sunday afternoon I noticed an unfamiliar stillness in my straining bump. I didn't panic, I drank some juice and ate a toastie and when that failed to stir him I went to the hospital - just to be sure. In my memory of those moments I wasn't worried as I walked through the hospital doors. I wasn't even worried when the Doppler failed to pick up a heartbeat - I'd had a perfect pregnancy, perfect scans, I was still full of the innocence that healthy babies don't just die. Even when they placed the scanner on my belly and pointed out his perfect motionless heart, I didn't believe it. Denial cushioned my descent into the grief and horror of our loss, of the life-changing experiences that were to come.

I remember the dawning reality of those moments, the look on my husband's ashen face, the realisation that I was still going to have to go through labour to give birth to a dead baby, the horror of that, the revulsion initially at the thought of seeing him and holding him, the absolute blank at the thought of taking pictures.

In the haze of drugs and pain and childbirth I'm not sure when that horror eased, but when Max was born at 5.21pm on the 12th of January, it was not a dead body they placed into my arms. It was my son. His coolness and stillness and silence broke my heart in a way which I believe is irreparable, but his beauty filled me with a love which overwhelmed all else.

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I am forever grateful for the hours and days we spent in the hospital with him. I am grateful for the memory my arms retain of the feeling of his weight in them. I treasure each little memento we were encouraged to preserve, his hospital name tag, some clippings of his soft downy hair, the blanket he was gently wrapped in.

Mostly, I am so grateful for the photos which were taken by the incredible [charity] Now I Lay Me Down to Sleep. These photos are how we love to remember him, a perfect peaceful sleeping baby. They are our proof to the world, and some days to ourselves, that he was real, that he was beautiful - that he was not a pregnancy gone wrong but a child who died before he got the chance to live. Of course, I wish I had done more with that limited time we had. I wish more people had gotten to meet him, I wish we had felt confident enough to ask to bathe him. I wish I'd taken more time to commit every inch of his little body to my memory, I wish we had managed to get little 3D models of his hands and feet.

At the same time though, I know that even if we'd done all of these things, there would always be a lifetime of regrets. No number of items filling a memory box is a substitute for the lifetime you had planned with your child.

The last two years have passed both in a whirlwind and a crawl. In the early months I cried constantly, I wracked my brain for what I had done wrong, for how I hadn't protected him. I sat in his beautiful room and held his teddies and I wept. I am so thankful that within weeks I started to write, firstly just to give the people around us a sense of where we were, and then because I found it so healing.

My blog has become Max's legacy. I am so thankful that so many people all over the world know about him and care about him because they have read his story and seen his pictures. I am so proud that this writing has helped others in a similar situation feel understood and valid in their pain. It has also really helped people know how to deal with us.

It's not easy - I do get that. I went from being a fixer for the people around me to being so broken and jagged that people can often feel like there is no safe angle from which to approach. I remember only because I can re-read it now, my determination to become a better person because of Max.

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I imagined developing this amazing sense of empathy for all sorts of struggle. I was determined not to become bitter, to not develop resentment that in a world full of people who drink and smoke and take drugs through pregnancy can have a healthy baby while I tried to do everything right and still had to say goodbye to my son.

Two years on I think it's fair to say that I'm not quite where I'd have hoped to be on that score. I am angry, I am over-sensitive to anyone slightly complaining about how difficult it is to raise children. I have boundless empathy and love for the countless amazing parents that I have met who have had to say goodbye to their children, but if I'm honest I am more dismissive of many of the other challenges people may have.

There have been surprising beacons of light we have found in the darkness of our loss. The main one is Max, because of him I am determined to live. I want to make his life count. When I see a beautiful place, or write his name on a magical beach I feel like he is closer by, that we are seeing and doing these things on his behalf.

On his six month anniversary, we both did a skydive for the first time in his memory. My relationship with Max's dad has grown so much stronger. I know that is not always the way it goes and for that I am so grateful. Although we are very different people with very different approaches, we have supported each other through or darkest days and moments, and have managed to keep communication open, sometimes through screams, sometimes through tears, but always through love and that common understanding of what we had and what we lost.

As we were told in the very early days of loss, our address book has changed, probably more dramatically than we could have ever anticipated. In the early days people know what to do, they write cards and bring flowers and deliver home cooked meals.

We appreciated, and still do, all of their efforts so much. As time passes people find it more difficult. I think they struggle to know what more to say, how to fix this. Grief is seen in our society as finite. I probably once thought the same. I have lost other people close to me, including my father who was only 57 and died two days after I found out I was pregnant with Max. As much as I have grieved for him and as much as I miss him, the truth is that his loss hasn't changed who I am at the most core level. Max's death has. I am fundamentally not the same person who walked into that hospital innocently that day in January 2015. I can completely understand how people struggle with that, how they have waited patiently for the old me to return and then slowly backed away with the dawning realisation that the old me is probably not coming back.

I understand that being around sadness and anger is exhausting, and although I am disappointed that people have drifted away, I can't say that I wouldn't have been one of them in a different situation. I try to focus on the other side, on the people who are there, who come back again and again, who try to understand, who tell their children about Max, who remember him with us.

All I want from people is to remember Max, to not make him an awkward secret, to speak his name and to remember that he is no less a part of our family after two years than he would have been if he was running around drawing dinosaurs on the walls. It's so common for people to avoid speaking to bereaved parents about their children, often under the claim that "they don't want to upset them".

This is nonsense.

A bereaved parent doesn't forget that their child has died, they live with that reality every waking hour of every day. If you're not sure if they want to talk, ask them. If it's you that can't cope with the conversation that's your choice, but know that it's a selfish one. You might be making for a less awkward chit chat but chances are you are causing huge pain for the parent who just wants their precious child acknowledged.

Two years on, and after a struggle with infertility, we are now 23 weeks pregnant with Max's little sibling. I am terrified, but I am grateful beyond words. I treasure each little kick, each sight of a healthy beating heart on a scan. We are not replacing Max, he will be this baby's big brother, and if we are lucky enough to bring this baby home, they will grow to learn about and love their big brother just as we do.

One of the most surprising things I've learned during this pregnancy is how much pregnant people don't want to hear about stillbirth. I've been advised that it isn't fair on them to share my loss with them, I've overheard them in pregnancy classes talking about how awful it is for an antenatal class to mention the possibility of stillbirth.

Not only is it hurtful beyond description that our experiences and our babies should be regarded as a 'dirty secret', it is also incredibly short-sighted to not spread awareness. So many babies can be saved through awareness of kick counting, of various warning signs of rare but dangerous conditions.

I can only imagine that these women who want to close their ears to our stories feel immune to our loss. People who've had stillbirths are not different in any way, we have just been dealt a cruel blow by life. We are your sister, your friend, your doctor, your midwife, your teacher, your shop assistant, your accountant. We will live with the unfounded but very real guilt of not delivering our babies safely into the world for the rest of our lives, please don't add to it by forcing our stories into dark corners and whispered words.

If you are a bereaved parent reading this, I am so very sorry for your loss. I wish I could tell you a timeline when the pain will ease, but grief like this doesn't work like that. It is messy and complicated. The greatest advice I can give you is to get support. In a world which unfortunately doesn't really get it, there is a massive community of people who, unfortunately, do. We will take you as you are, broken and angry, we will love your baby with you, remember them with you.

We will never start a sentence which talks about the loss of your child with 'at least'. Your baby is no less important for never having taken a breath in this world. You are no less parents for visiting a graveside rather than a playground. I went to my first Féileacáin meeting only two weeks after Max's death and am forever grateful for the continued support and understanding of a community of parents who stand together in tears and in laughter, in good days and in bad.

To Max, who made me a mother. I'll love you forever, I'll like you for always, so long as I'm living, my baby you'll be.

* Read Anne Marie's blog at l4stars.wordpress.com.

You can also check out feileacain.ie for advice and support for everyone effected by stillbirth.

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