Living Truth with Charlie Mitchell
The Truth About Labels
Our gorgeous son Thomas was born so beautifully on 13th January 2017. Jason and I had been sat in Cheltenham treating ourselves to an all-you-can-eat Chinese buffet when I suddenly felt a wave of emotion. While this was Jason’s first child, it was baby number three for me, so I knew what was going on. Jason looked understandably surprised as I still had 2 weeks to go until my due date and my other 2 children were born a day either side of my due date, so we had ages to get yet, right?!
Well, driving home was an adventure and I wondered if he may be born in the layby. Luckily, I made it home, managed to call the midwife and make plans for our home birth. I had my other 2 children at home, so felt comfortable doing the same with Thomas. A few hours later after a birth that Jason later described as ‘very underwhelming’, Thomas was born. I remember counting his tiny fingers and toes as I did with my other two – I’m never sure why that seemed important… symbolic perhaps?
And yet while Thomas did have all his fingers and toes, it quickly became clear that other things weren’t quite as expected. He wasn’t latching on properly, despite my best efforts, and I had breastfed my other two so this would be fine – right? His temperature was low, sort of unnerving for someone so tiny to also be so cold. And no amount of blankets or skin to skin was making any difference. The final piece of the jigsaw at that point was that Thomas only had two lines on one of his palms instead of three. The midwife explained this could be to do with a chromosomal difference. I couldn’t fully take on what that meant at that moment. I did know when I looked at Thomas, his eyes looked a little different, but I didn’t care. The love was flowing and I just wanted him to be ok.
The midwife gave us as much time as possible to get little Thomas warm and fed, and she explained the chromosomal difference wasn’t enough in its own right to take us into hospital, but his temperature and lack of feeding was. So off we went, all bundled in blankets, with our overnight bag in circumstances very different to those we had imagined.
I found it so tough to see Thomas in an incubator. The urge to pick him up and remove all the wires was so strong. Every cell in my body wanted to have physical contact with him and it felt like a kind of torture. Parts are now hazy, as I don’t think I slept much for several days. I remember handing my sister a leaflet and saying ‘The doctors think he may have this’. I couldn’t even bring myself to use the word. Down Syndrome. It felt like some kind of life sentence. Or death sentence? I wasn’t even sure. It felt like someone had taken the little boy we had plans for and replaced him with this amazing little person who was fighting for his life and I had no idea about. How could I support a child with Down Syndrome? What did it actually mean? What did it mean for him and his life? What did it mean for me as a mother? For our other 2 children?
And yet amid this confusion, Thomas’s condition was getting worse. He wasn’t feeding, his temperature wouldn’t stabilise and when they took blood out of an artery, because they couldn’t get it out of his vein, it came out like jelly. I am not a medical professional and I knew Thomas was in serious trouble. In one of the worst moments of my life they decided Thomas needed to go from the standard maternity ward into intensive care. Far more monitoring, less contact with me, I couldn’t even have him next to my bed and the medical staff were very concerned about his deteriorating health. And in that moment, none of the labels mattered. I couldn’t have cared less what conditions he had, what support he might need, what might happen. Down Syndrome paled into insignificance. I just wanted to be able to take my baby home.
It took a week for Thomas’s health to stabilise and start to improve, and another 2 weeks before we could go home. And by that point the fact Thomas had Down Syndrome seemed irrelevant.
Our consultant was amazing and was able to be quite clear about priorities: ‘Thomas is a baby first. We will treat him as a baby. Thomas may need extra support when he is bigger, and some things may take him longer, and that is no different to your other children. We will look at the support he needs when he needs it and until that point, don’t worry about the Down Syndrome.’
Something clicked into place for me. I could be a mother. I had done it before. I knew about babies, what they needed and how they worked. It was fairly simple really. Put food in. Deal with it when it comes out. Repeat. And actually, once Thomas’s little body got up to speed, he really was no different to any other baby. Except that he started sleeping through the night at 6 weeks old. And wakes up happy and chatting.
One year on and I find him to be a complete delight. I’m thankful he wasn’t my first, because he makes having a baby so easy I would have found it really difficult to have my daughter after him. He is engaging, loves people, is delighted with his new waving ability which makes people smile even more than they usually do. He regularly has people crossing over the road to shake his hand and say how beautiful he is, and he smiles kindly at each person, giving out as much love as he regularly receives.
Far from being a disability, Thomas has shown how having an extra sparkle as we now call it, can bring some much joy to a family. He adores his siblings and lights up whenever they are near. They in turn adore him, with my daughter already starting to teach him to read and my son showing Thomas how to crawl. Yes, things might take longer, and actually I’m all for life at a slower pace. The fast dash isn’t all it’s cracked up to be, and Thomas shows me the delight in this moment right now. We don’t know what the future holds for Thomas, just as I don’t know the future for myself or for my other children. And I do know whatever happens the journey will be worth it.
When I having a conversation with one of my colleagues about Thomas having his extra sparkle, he mentioned a mutual contact of ours who works at a university. ‘Oh, Down Syndrome’ our mutual contact had said ‘One of my PhD students has Down Syndrome…’
So, what does the label even mean? Honestly, there is simply no way of knowing, as each person with an extra sparkle is completely unique. And there is tremendous freedom to having a label with no real expected pathway. Freedom to have an amazing life. That is a freedom I wish for us all.
Due to the birth of her third child and untimely death of her partner, she has taken time out to grieve, heal and learn new ways of living. She is currently writing a book about surviving crisis and living bravely. She has a private Facebook group where she shares she skills and experience to help others use challenges as a catalyst for positive growth. She does live videos and webinars as part of the process.
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