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.

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Mothering a Rainbow

For the most part, I believe I am mothering Elijah in much the same way as I did Isaac and Xavier as babies. But there are moments. Snatches of time where everything is different. When it becomes truly apparent I am mothering a rainbow child.

Whilst pregnant, every twinge, real or imagined, sent me to the darkest of conclusions. Every time I caught his heartbeat on the monitor, or felt him kick, my breath would catch with gratitude. I get to carry this baby. I will get to hold this baby. I will get to keep this baby. How could I fathom such a blessing?

A few days after giving birth, a cocktail of postpartum hormones running through my veins, holding him tight as a newborn baby and begging him not to die. My heart aching at what was lost and the unbearable thought of further pain. Then his little fingers curled around mine, reassuring and real. He was staying. Staying.

Looking into his new but wise eyes and asking in a whisper if he met Xavier, if he knows how he is. Searching the deep blue seriousness for a flicker of recognition. Some sign of communion. He is not his brother. Yet a reflection of his brother. His brothers’ blood running through his veins.

He is softly sleeping, shallow breaths making his chest rise and fall almost indiscernible. I watch fervently, hand on his little body, willing each little breath to come. I am the guardian of his sleep. If I leave him for a little while in the hands of rest, I feel guilty and panicked. I come back to find him safe and feel like I have cheated fate. Every morning when he wakes, I am elated and overcome with gratitude. Sleep, that silent thief, has stayed faithful and not turned on us again. I am so blessed.

Sometimes I will pause before I check on him. For if he has entered a realm I cannot, I want to hover in the innocent happiness of the moment before knowledge. Then I start and I wonder if that moment would represent the chance to save him. All this inner turmoil and when I finally check on him, he is peacefully sleeping. No care in the world. He is peace, he is calm. He is balm to my wound-up heart.

Parenting after loss is a double edged sword. On one side is the almost unbearable knowledge that your child can die. On the other a level of gratitude that reaches deep into your heart. I have known the depths, so I will appreciate the heights. We have been through the thunderstorm, we have seen the rainbow and we are flying with the sun.

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Making the rainbow connection

I am not the first loss mother to be consumed and confused by the place of a rainbow baby in her family.   This beautiful gift that I have paid the highest of prices for.    I think the crux is the confusion is this:  you learn things in grief – precious, beautiful things.  We sometimes call them the gifts of grief. But every angel mother I know would gladly give each and every one of those gifts back to hold their baby again.  There is nothing you can gain in loss that tips the balance in  favour of saying good-bye.  And then another child comes into your life.  Suddenly, there is something borne of loss that is so precious that it gives you pause to reconsider.

No one is going to knock on my door and offer my Xavier back in exchange for Elijah.  I am never going to have to make that choice.  And yet there is still guilt surrounding the presence of Elijah at the expense of Xavier’s absence.   My love for Elijah will always be tinged with a longing for Xavier.  His milestones, more so than Isaac’s, paired with wondering if Xavier’s would have looked the same, been met at the same time.  And as I am granted longer and longer with Elijah, my feelings for him intensify and evolve in a way that they never had time to with Xavier.

In the weeks following Elijah’s birth I would look at him and could not fathom how I survived the loss of Xavier.  Each feeling was intensified in those weeks – the joy, the love, the fear and the grief.  Even now, I think I could not survive if we lost Elijah.  And that thought feels traitorous – could  I survive the loss of one child over another?  Am I, in some way, choosing one son?  Loving him more?

Of course, it would be possible to fall pregnant four months after Xavier was born had he lived.   Just terribly, terribly unlikely. I was breast-feeding and two children had always been our plan.   Whilst now I look at photos and think of Xavier as missing, in a way that’s disingenuous – in reality it was never the way our family would look.

And yet, how often do our families end up the way we planned?   Those that had sworn to no children may end up with a family of six.  How many third children are born in the hopes they might be a different gender to the first two?  Accidents occur frequently.   Do the mothers in those families agonise over the children they had not initially planned on and wonder at their place in the family?  Or do they not even pause to think it over – just accept the beautiful gifts bestowed on them and the fluid shapes of family over time?

When I think about the shape of my family – my boys – this is what I picture: Two boys, one much littler than the other, their faces turned towards the sunshine.  Rays of light gently settling around them, and both of them with an understanding that this light belongs to their middle brother.

Welcome to the world little rainbows

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All over the world, new parents are gazing with untold love, adoration and awe at their newborn children.   Of these, a small percentage are filled with just a little more wonder, just a touch more disbelief, slightly more  gratitude that their sweet little baby has arrived and done so safely.   They are the ones who do not sleep, but watch over each breath.  The ones who marvel at the sound of little cries, not quite believing they are real.   The ones that have to pinch themselves that so much joy has finally come into their lives.   When a midwife assures them that babies are less fragile than they look, they are the ones that regard that advice with suspicion.  Experience has taught them differently.

They are not first time parents but the baby they held first was without breath.  And at painful times, without  recognition. Midwives, doctors and friends might refer to them as first time parents, as new mums and dads.  Not necessarily because they are ignoring the baby who came before – the baby that didn’t take a breath or only snatched the smallest amount of life. But because our language has no word for a parent that loses a child, let alone to describe a parent who has lost a child and then welcomed a living baby into the world.    These mothers and fathers have had to parent in the hardest of situations.  They have had to find ways to love and connect with a child that they cannot see.   They have had to nurse aching, empty arms.  They have had to find strength they never knew possible.  They have had to fight for their motherhood, for their fatherhood.  They have kept memories alive.  Their hearts have been broken and yet swelled to accommodate the most amazing of loves.

And now these parents face a new and alien set of challenges.  How to bathe this little one.  How often to feed. How to soothe cries. How to tell if he’s too hot, is she’s too cold.  But there are other things they already know.   That the love for your child is all consuming.  That you love them a little more dearly each day.  That being a mother or father is such an awesome and beautiful responsibility.   They know the full precious weight of their baby. They know every breath is a treasure.  And they know that this little one has a big brother or sister, looking over them. Keeping them safe.  They know that their family looks a little different from others, but their first child or children will always have a place within it.  They have loved and loved and  loved.    And now they get to love a baby that demonstrably loves them back.

With much love to all the parents who have recently welcomed rainbow* babies into their families, but particularly those who are welcoming a child after losing their first.

*A rainbow baby is the term used by the loss community to describe a child conceived after loss. It refers to the hopeful rainbow that appears after a storm.  The storm does not refer to the child that did not live. But rather the very dark place that inevitably follows after loss. Nor does a rainbow signify the end of grief.  A rainbow baby brings hope and light into a shattered family, whilst they still miss and grieve for the child they hold in their hearts rather than their arms.  

Two Weeks

On the weekend Elijah turned two weeks old.  For our family this was a significant milestone.  It’s the age Xavier was when we said goodbye.  On the eve of Elijah’s 13th day – the morning we found Xavier without breath – Elijah was held all night long.  My gorgeous sister stayed with me as we watched TV and waited out the sunrise.  As the clock ticked over to 5am, I held Elijah close and wept with relief.

“You’re going to stay” I whispered, elated and sleep deprived.

N had pointed out that there was minimal chance of Elijah dying by SIDS and non-existent odds of him doing so at the same age we lost Xavier.  But the heart and head sometimes follow different paths.  Even though it makes little logical sense, I cannot help but feel that we have dodged a bullet.

The anxiety remains, and it probably will forever, but the feeling of certainty that we will lose Elijah has lessened.  I will still wake in the night and check that he is breathing, but I am less surprised now to find that he still with us.  When you have experienced the worst, it can be hard to have faith in the future.  But I am slowly finding that faith.  I do not believe our lives will be perfect from this point onwards.  I have seen too many people go through multiple losses to believe that our angel children look after us from afar and protect us from any future pain.  Life doesn’t work on a series of checks and balances, nor do tragedy and deservedness have any bearing on each other.   I cannot look into the future and know what it holds.  But I am sure there will be both beauty and pain, laughter and tears.    So I can face the future with fear or with hope and I am going to choose hope.

I wrote these affirmations to help me with my anxiety – they might help other parents too.

Affirmations

WHy I chose you

The Magic of a Newborn

As my eldest son Isaac (now 4) grew from newborn to baby to toddler, I would announce each new phase as my favourite so far.  But the newborn stage holds a special place in my heart.   There is just something magical about new life in its most infant form.  This tiny little person, full of possibility, but right now totally dependant.    Baby at breast, surrounded by my family,  offers a level of contentment that cannot be easily surpassed.  Watching N hold little Elijah – both relaxing on the couch – fills me with warmth and gratitude.   The little mewls, the grip of a tiny hand around your fingertip, those bewildered first glances until they catch your eye and gaze back your reflected love.   The cuddles at all hours of the day and night.  I can’t properly describe how much I love each moment.  I felt this with Isaac, with Xavier and now with Elijah.  When Xavier died so young, I felt particularly robbed of this beautiful stage.  So I treasure every sight, every sound, every smell, every touch that Elijah offers.

A dear friend gave birth to her first – a little girl- two days before Elijah came into the world.  When we met up for the first time after our babies were born she cried with me over Xavier.  Her absolute love for her daughter giving her a glimpse into what the impossible pain of losing Xavier might have been.   Even now, with Elijah in my arms, I wonder how I survived – and continue to survive – without one of my children.   But his love remains and my heart richer for him being a part of our lives.   I am a better, more patient and more grateful parent after loss.  And the magic of a newborn has me spellbound once again.

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