Emma Haine's first baby, Ted, suffered severe oxygen deprivation at birth

‘Nothing turns your life upside down as much as your first baby,’ warned my mum while I was pregnant. At 34 years old I was more than ready to be a parent and embrace the changes it would bring, but I don’t think either of us could have predicted just how true her words would be.

Despite my journey into motherhood beginning with a textbook-perfect pregnancy, Ted (he was always Ted to us, even before he was conceived) arrived 12 days late on 7th October 2012. His birth not only turned my life upside down but shook my whole world, every which way imaginable.

My planned home birth ended up as a hospital delivery where, unbeknown to me at the time, the midwives had ignored signs that Ted was distressed. We made it to the hospital but should have been there hours before. When he finally made his entrance there were no angry newborn cries, no triumphant cord-cutting or skin-to-skin. Instead there was a floppy baby with no heart rate, no attempt to breathe, a blue face and a white torso, covered in meconium and attended by what felt like dozens of people who were trying to save his life. I’m overjoyed to say they did.

The doctors told us that, despite the damage on his MRI scan, we needed to wait and see how he would develop. We didn’t have to wait long before he was racking up missed milestones

Ted is now three and a half and in some ways that night seems like a distant memory as I get on with the daily task of mothering. But my version of parenthood doesn’t look the same as most people’s and it never has been.

My beautiful Ted, who was healthy and perfect, treasured and loved from the moment I first felt him kick, had experienced prolonged oxygen deprivation in the end stages of labour. He spent a month in the neonatal unit, and from day one it was clear he had not escaped lasting brain damage. His muscles were tight, he cried almost constantly and struggled to feed from a bottle, relying instead on a nasogastric tube. The doctors told us that, despite the damage on his MRI scan, we needed to wait and see how he would develop. We didn’t have to wait long before he was racking up missed milestones, leading to a devastating diagnosis of four-limb cerebral palsy at just three months old, followed by epilepsy at six months.

Motherhood to me for a long time meant stress, tears, worry, anxiety and grief. It’s an incredibly peculiar thing, mourning a child who has not died but whom you have definitely lost. I know your children are never the people you imagine they’ll be and will never have the lives you dream up for them, but they will be broadly similar. You know they will learn to talk, walk, go to school, have friends, partners, jobs…

I wasn’t the right kind of person to parent a disabled child. When I wasn’t fantasising about walking out the door and never coming back, I found myself wishing Ted had died

The child I was expecting to mother was taken from me and in its place was someone entirely different. A boy who would be dependent on me for the rest of his life. The eternal baby. The ultimate burden. At least that’s how it initially felt. My thoughts grew dark. I wasn’t the right kind of person to parent a disabled child. When I wasn’t fantasising about walking out the door and never coming back, I found myself wishing Ted had died. It would save him a lifetime of suffering, for I couldn’t imagine how he could ever be happy or have any quality of life.

As I write this though, it takes a lot of effort to fully remember how despairing and broken I felt back then. Yes, my version of motherhood isn’t the same as most people’s but it’s not the awful experience I first pictured.

Three and a half years in, the missed milestones continue to rack up, but the difference is I just don’t care. It no longer feels like a knife in the heart when I see toddlers chase birds in the park or splash in paddling pools (it’s strange the inconsequential things that really used to bring up the grief). I have come to terms with not hearing Ted call me mummy or seeing him take his first steps. That’s not to say it doesn’t still hurt on some level but I rarely think about it. Ted is Ted and being his mum means I love him unconditionally.

Unlike the many medical professionals in our lives, I don’t see Ted as a list of all the things he can’t do. I forever see him as the joyful little bundle he is. For all the devastation that he will never grow up and experience life as you or I know it, a part of me is pleased that he will always be my baby and I will get to cuddle him for as long as he will fit on my knee. He can’t talk but he can communicate; he smiles and laughs and giggles and shouts. He has strong likes and dislikes and captures hearts wherever he goes. He is loving and loved and I need not have worried about his quality of life. He has never known any different and as long as he has our love and attention, his life will be happy and full.

It takes a lot of effort to fully remember how despairing and broken I felt back then. Yes, my version of motherhood isn’t the same as most people’s but it’s not the awful experience I first pictured

The landscape of motherhood for me is rocky. There is inevitable anxiety as I must work hard to keep him safe – be vigilant for seizures, be careful that he doesn’t aspirate when eating, check that colds don’t spiral into chest infections that will land us in hospital, watch his positioning to protect his body from bending and twisting irrevocably. The smallest things like getting a coat on or putting him in a chair is usually a huge fight with his uncooperative little body. Balancing out the sadness that I will never hear him say he loves me, is the relief that he won’t throw a tantrum because he wanted the blue cup and he got the green one. It’s a crying shame he’ll never run and climb, but on the other hand I don’t have to put up with the hell that is soft play on a rainy day. The sound of Ted laughing in my arms as we run through the kitchen playing ‘What’s the time Mr Wolf?’ with his dad is something I appreciate a million times more than I may otherwise have done had things been different. A giggle is something I could have easily taken for granted once the novelty wore off.

Now that Ted’s baby sister is here I am experiencing a more typical version of motherhood. I’m already finding her development endlessly fascinating. I can’t believe how much and how quickly children learn, although I’m in no hurry to encourage her to meet those milestones too quickly. Bedelia is beautiful, energetic, headstrong and her mere presence has been both challenging and healing for us all. It introduces a normality to the family after years of experiences that others do not share nor fully understand. Yet it also highlighted just what we were robbed off and how things should have been with Ted.

Parenting Ted has taught me empathy, patience, humility and the importance of asking for help. With a severely disabled child motherhood is not a one-dimensional role. I need to be his friend, nurse, advocate, therapist, PA, carer, facilitator, protector. I must be his voice and his ally. Like anyone’s experience of being a parent it is exhausting, frustrating, challenging, but also joyful and exhilarating. Above all it’s a privilege and I wouldn’t have it any other way.

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