Now that Leo is one, I’ve been thinking back over our first year together and the practically vertical learning curve which is parenting after loss. If there is comparatively little information out there about the reality of losing a baby, and the terrifying experience of pregnancy after loss, then the chapters detailing what happens when (if) you get to take that baby home seem to be missing entirely. In the early weeks and months following Leo’s birth, I scoured the internet looking for stories about what is means to parent a rainbow baby, a user guide if you will, but found almost nothing. It felt like some of the advice out there for new mums didn’t quite fit; after all, whilst I had never had to swaddle an octopod-like newborn, or wrestled a pushchair into a lift, I already was a mother, it’s just my child never came home.
Only now, as I think back to the frightened, confused and utterly overwhelmed woman who staggered (John Wayne style) out of the hospital doors, her heart and arms finally filled, do I realise how woefully unprepared I was for what the next few months would bring. Not only trying (more often than not, failing) to get to grips with newborn life, but attempting to manage the tidal wave of emotions which are part of the parenting after loss package.
I have learned a lot about myself and parenthood this past year, and about what it means to be a mother to two children: one living, one missing.
If I could give that mother the benefit of my one year’s experience, this is what I would tell her:
1. People assume everything is ok now
You did it. You survived the devastation of losing a child, and navigated the (at times paralysing) anxiety of pregnancy after loss. You have birthed a living, breathing baby and brought them home. The end.
Except that of course, it’s not.
Yes, you have done all those things; but that doesn’t undo the fact that your child died. That there is a person whose absence is the first and last thing you feel each day; and the hurt, and guilt, and confusion, and self-doubt which accompanied their death hasn’t just magically disappeared. The birth of a sibling undoubtedly soothes a fractured heart, but your child is still gone, and that can’t change.
It can feel as though others are so swept up in the joy and excitement of a new baby that they have forgotten that you are still bereaved; and the support and understanding which you (hopefully) received from friends, family and health professionals appears to evaporate once your rainbow arrives. It’s as if your status as a loss parent has suddenly expired. People may expect you to ‘just be happy now’ failing to recognise the complex emotions swilling around in your head. They may not appreciate the impact the death of your child has on the way you perceive yourself, and your ability to parent their younger brother or sister, and this lack of understanding can make you feel fragile and alone.
2. The fear doesn’t vanish when your baby is born
I’m sure all new parents are anxious, and a little paranoid. You are wholly responsible for the care and well-being of a tiny person; who you need to feed, clothe, educate and generally keep alive and well. And you are given this responsibility without any induction, training, or even a manual. From the moment you strap your tiny, precious cargo into the car seat (which no one checks you’ve actually done properly) that’s pretty much it, save your midwife swinging by once or twice and Health Visitor clinics.
Parenting after loss anxiety is like regular parenting anxiety…on steroids. The stomach-churning fear you harboured during pregnancy doesn’t just pack up and leave the moment they cut the cord. In many ways, the weight of this anxiety is easier to carry, as the burden is shared by others once your baby is no longer in-utero, but (for me at least) it is still present.
Even now, at 12 months old, I feel compelled to check that Leo is breathing whenever he is sleeping. Those who watch my Instagram stories are familiar with the persistent beep of the baby monitor during my evening ramblings. My rational brain tells me that the SIDS risk is significantly lower now, that perhaps it isn’t entirely necessary to have Leo sleeping on the movement sensor pad anymore. But my rational brain doesn’t run this show.
And don’t even get me started on the choking fear of weaning, the mind boggling confusion of dressing appropriately for the temperature (thank you British weather) the heart-in-mouth panic of learning to crawl and climb…every bump and bruise fills me with dread and a stomach-churning guilt which often renders me a weeping mess, whilst Leo looks on utterly bemused.
3. Rainbows make the grief easier and harder all at once
Rainbows are, without a doubt, little heart healers. They can never take away the pain of losing a baby, nor could they ever replace their sibling, but they soothe the soul and bring pure, unadulterated joy back in to a world which, it seemed, would forever be cast in darkness. They enable you to live out a version of the life you had hoped for, dreamed of. Fantasies of trips to the park, lullabies at bed time, lazy Sundays reading stories and building bricks, all the things you were so cruelly denied when you heard those fateful words ‘I’m sorry…’ come to being once your rainbow baby is home.
Babies are also great at filling your time. You will never forget that someone is missing (who could ever forget that their baby died?) but those endless hours which stretched out before you in the weeks and months after their death are suddenly swamped with distractions like baby sensory classes, lengthy pushchair walks and multiple daily outfit changes. You are forced to ‘do life’ again; when the waves of grief strike (which of course they still do) you can’t crawl back into bed and hibernate because there is a small person who needs feeding, or changing, or a cuddle.
But the things which make it easier, also make it harder. Sometimes you feel like you can’t carry on; all you want to do it hide yourself away and cry at the injustice of the hand you have been dealt. Or you want to sit and think about your baby, to tenderly go through their things, or rearrange their flowers, or just remember ever tiny detail of the precious time you spent together; but you can’t, because you never get a moment to yourself.
Similarly, every wonderful experience you share with your rainbow, each milestone they reach and memory you make, serve as another reminder of all the things you missed out on with their sibling. Findlay is my first son, so I never really knew what life would have been like had he been here. I didn’t know that I could readily trade my old hobbies and interests for soft play and dates with Mr Tumble and feel fulfilled. That joy could be gained from watching your child get stuck in to a plate of spag bol. That despite the overwhelming responsibility, and at times relentlessness of motherhood, I could genuinely miss him after only a couple of hours apart. That the intoxicating smell of his head nestled in my chest could erase the day’s calamities. That his elation at taking his first, tentative steps could make my chest ache with pride. I didn’t know what motherhood would feel like, so it’s only now that I can fully comprehend the scale of what we have lost.
4. Let go of the pressure to cherish every moment
When your path to parenthood has been fraught with heartache, it’s easy to feel you need to just be thankful that you got to bring home a living baby; what could you possibly have to complain about? And of course you are, but that doesn’t mean there aren’t challenges too. Parenting is tough; the days are long and sometimes it can feel like you’re just hurtling from one unremitting situation to the next.
The monotony of eat, sleep, poop, repeat in the early days; the frustrations of weaning a child who refuses to entertain a spoon; 52 weeks of disturbed nights; these are enough to test even the most saintly of us. It’s okay to admit that some days you find yourself fantasising about getting in your car and disappearing off for the afternoon, in pursuit of a quiet spot where you can drink a hot cappuccino and read 50 pages of a paperback without interruption. You’re not being ungrateful; you’re just being human. After all, somethings are hard to cherish (I’m looking at you silent reflux. You too, epic, running down the leg of a White Company romper your boss bought whilst sitting in a return to work meeting, poonami…
5. Sometimes you will feel completely different to other parents
You know, the ones you meet at baby massage, or bounce and rhyme; those for whom (at least to your mind) pregnancy and having babies is a straightforward certainty. You will hear mothers bemoaning that they didn’t get their water birth because the pool was busy, or casually referring to ‘when’ (rather than ‘if’) they have number two, and your heart will ache with the knowledge that when your baby died, so too did your naivety that pregnancy always leads to happily ever after.
It can feel like the death of your baby, and the lens through which you now perceive the world, separates you from other parents. You may look and sound like them, but you feel like a visitor from a silent, unseen world (one which you more than anyone desperately wish didn’t exist) trying to infiltrate ‘normal’ life. The complaints of other parents seem trivial alongside the devastating marker against which you now measure experiences, and it can be hard to feel sympathetic towards Nicola, who hasn’t had a manicure since January.
At times like these, you may question how best to respond to the terrifying ‘is he your first?’ question, for fear of being ostracised or judged. And maybe you will be; the sad truth is some people don’t want to hear about babies dying (see here for more on that) and they may back away sheepishly, averting their eyes and muttering platitudes. But that says far more about them and their inability to manage bereavement than it does about you.
Or maybe you’ll find out that they too are nursing a broken heart. After all, we never know what battles people are fighting.
6. There will be times when you feel just like any other parent
Ok, so that seems like a bit of a paradox – but it’s true. When you’re frantically Googling ‘is it possible to die from sleep deprivation?’ or comparing the salt levels in sliced bread whilst vigorously thrusting the shopping trolley backwards and forwards singing ‘5 little speckled frogs’ in your best Mary Poppins voice in Morrisons, you realise then that you’re not so different after all.
For this reason, I’m so grateful for my mum tribe, the wonderful women I met at antenatal classes. Despite the variations in our roads to motherhood (and we are all unique in that respect too) we have battled through the trenches of these last 12 months together. All equally clueless. All trying our best.
Often when I feel myself succumbing to the guilt and anxiety which I know are a direct by-product of Findlay’s death, it’s amazing having this bunch of lovelies to help me pick up the pieces and feel like I’m not alone. And sometimes, what I’m feeling is actually just completely normal mum-guilt; and that’s good to know too.
7. You are stronger than you think – but not invincible
When Leo was born, I naively assumed that if I could survive the death of my child then I could handle anything life with a newborn could throw at me. I mean, how hard can it be to function on four hours of broken sleep compared to the pain of burying your child?
The answer: bloody tough.
Throw in issues with breastfeeding, OCD-like expectations of how the house should be kept and a husband with an extremely demanding job and it’s a recipe for disaster.
As I’ve said, parenting can be pretty gruelling at times, and when you’re simultaneously grieving, you don’t have much reserve left in the tank. Grief doesn’t stop when a rainbow arrives, although often it is pushed into the background where it bubbles away (perhaps unnoticed by others) until one day it boils over in a hot mess. Trying to be super mum whilst juggling the reality of life with a baby and keeping the lid on your grief is not really possible…eventually something will break, and in all likelihood that something is you.
You don’t need to prove to everyone that you can be a perfect parent; you don’t need to justify yourself or show the world that you deserve this baby. You just need to be gentle with yourself, and don’t forget to ask for help.
8. You love all your children equally
This is a tough one to write but it’s something I was so afraid of.
Would I love this baby as much as Findlay? How is it possible when my heart is SO full of love and longing for him that it aches under the weight of it all? I remember my mum once telling me and my siblings that when a new baby comes, a mother’s heart grows as big as her belly to make space. ‘It’s like I have three hearts’ she said, ‘one for each of you.’ This is something I tried to cling to but in all honesty I doubted. I was scared that Leo would be born and I would wish that he was Findlay. No baby can ever replace another, but I didn’t know how I would feel seeing him. Why would this boy get to live when the other was cruelly snatched away?
Or would loving Leo take away, or overshadow my love for Findlay? All siblings have to share their parents, but how does it work when one isn’t here to command attention, or make memories? Our time with Findlay was so brief, the memories we have finite, would having Leo somehow diminish those? All these thoughts and more plagued me throughout pregnancy, alongside the paralysing fear that we would never find out, that Leo too would be taken from us.
I feel ashamed now to admit that I ever doubted my love for either of my boys. I love them both with a depth and strength beyond measure; my heart has indeed expanded to encapsulate them both…just as my own mother told me it would.
9. There is a lot of guilt…
Guilt for the days when I’m not being grateful for and enjoying every moment. Guilt for Leo on the days when I feel sad; that it might rub off on them, or is somehow neglectful. Guilt that I can’t always be 100% happy, that even the most beautiful memories with Leo are tinged with sorrow, and what this might mean to him as he grows. Guilt for Findlay, for the times when I am happy. That he may think I’ve somehow forgotten him, or am moving on (which is an impossibility). Guilt for when I don’t have the time or space to dedicate to him in the way I could before; for the days when I don’t get down to the grave or when I haven’t looked in his memory box for a while. Guilt for those parents who do not yet have a rainbow in their arms, or those who have never carried a baby in their womb. Guilt, guilt, guilt. Basically, if there’s something to feel guilty about…you probably will.
10. But so, so much joy
This one is fairly self-explanatory isn’t it?
For all the trials and tribulations; the anxiety, the doubt, the overwhelming feeling that you might not make it through the day with your faculties (or all their limbs) in tact. The confusion of experiencing joy and sorrow, love and longing, gratitude and injustice for your life all at once. Above all else, rainbow babies bring you happiness, at a time when you never thought you could ever smile again. They are a piece of you, a piece of their sibling and their own special unique self. Someone for you to love and cherish and, in doing so, piece together the broken fragments of your heart. They bring the colour back to your days, these babies born in the storm. The sun doesn’t always shine, but they are a little bit of beauty to have and hold.
Precious little rainbow, the last 12 months have been a pleasure and a joy (as well as a baptism of fire!) and I cannot wait to see what the next year will bring.