“I was only 7 weeks pregnant when I found out I was expecting twins. Shocked is an understatement but I soon got used to the idea, and in all honesty was probably a bit smug as I felt like super mum even before my babies arrived! My pregnancy was fairly uneventful, and I never felt healthier than I did in the months I was pregnant. I had the text book glow and I immersed myself in an online forum for mums of multiple babies (yes, we had our own club! Go us!) and the baby advice programmes on TV. I was all geared up to be THE best mum these babies could ever need.
I think because my partner Mark and I found out I was pregnant when I was only 4 weeks gone, by the time my water broke at 32 weeks I wasn’t so much worried about the premature arrival of our children but excited to finally meet them. I was adamant I wanted a natural birth but twin 1 was breach and so in the end I had to have an emergency caesarean. I told myself that it didn’t matter really, as long as my babies were healthy and delivered safely. I was on the brink of becoming a mother and I was wheeled into theatre riding a wave of elation.
I look back now on the morning my babies arrived and sometimes it still feels like someone else’s excitement, someone else’s life.
My boys, born weighing 3lb 9oz each were whisked away to the special care unit and a few hours later the pediatrician came to deliver the news that would change our lives forever.
He told me that twin 1 (Oliver) was fine but twin 2 (Harry) had been born without an eye, eye socket, ear, nostril and a short jaw on the left hand side. The syndrome is called Goldenhar syndrome and there are other health issues such as spine development that he warned us about. I couldn’t process it.
Suddenly I was plunged into a pool of guilt for something I was convinced I had caused. The life I had planned for us all disintegrated before my eyes. I wasn’t sure I was the right mother for this baby but I never said that. Over the months ahead I perfected the poker face smile, disguising my inner torment for fear that people would judge me. I did all the things a new mum was supposed to do but I felt detached from a reality I still couldn’t comprehend was mine, all the while, slowly imploding.
I had planned to breast feed the boys but with them being so tiny it was tricky. For Harry having just one nostril it was impossible and so I expressed my milk for the boys like someone possessed. I felt like it was the only thing I could do for them while they spent 6 weeks in special care, but I went over the top. The nurses told me to slow down but I wouldn’t listen and ended up with awful mastitis. I remember sobbing with aching and sore boobs feeling like a complete failure in all respects. My self-esteem was rock bottom.
Also, splitting my time between the boys was incredibly hard. They both needed me, but Harry’s needs were so much more complex that he ended up with more of my time and I constantly felt guilty. Bad that I was with him when Oliver needed me or bad that I was enjoying time with Oliver and enjoying a ‘normal’ experience for a while. I felt guilty all the time. It was so hard physically and emotionally.
When Harry was almost 3-years-old he was also diagnosed with Autism and my guilt and grief intensified. By the time my boys were 3 and a half years old, my marriage was over and I was a single parent. Still smiling on the outside. Still crumbling inside.
I was teaching full time, raising the boys as a single parent (although the boys Dad and I still got on well and shared custody) and was functioning on the 4 or 5 hours sleep a night that Harry would allow me. I was running on empty but I still didn’t talk to anyone about it other than my mum.
By the time the boys were about 6 years old I was at breaking point and my mum finally dragged me to the doctors where I sat like a naughty child with my head bowed and shoulders hunched. I admitted defeat and began some antidepressants in a bid to save myself from my own hostile internal monologues. Slowly the cloud lifted and peace returned where a heavy sadness had lived for such a long time.
Although the stares, whispers and curiosity from strangers were so incredibly painful at times when I was out with the boys, I knew I couldn’t live a life hiding or scurrying away. I needed more. My boys deserved more and so I started being more proactive with those who looked our way. I soon found that in answering questions and offering the first smile, I was able to engage people, answer their questions and show them how beautiful both of my boys were.
I can’t tell you the moment I stopped hating myself and forgave myself for something that was never really my fault but over time, the love I felt and received from my boys filled the gaping hole in my heart.
Looking back over our journey there are definitely parts that make my heart ache now; I was so blinded by grief I never saw how incredibly beautiful the right-hand side of Harry’s face was. I was so lost in my own darkness; I forgot to celebrate the perfectly healthy, gorgeous boy I had in Oliver. That the smile I wore as armor only kept the pain in and the support out.
Now, almost 13 years after my boys birth I feel nothing but love and pride for the boys I have. We certainly have our challenges. Harry has recently had more reconstruction surgery and to date has had more than 20 procedures. His autism does restrict us somewhat as a family and his meltdowns are fewer but stronger nowadays. Oliver is dyslexic and has battled with anxiety and chronically low self-esteem. But we have gotten through it together. I have a new partner now and our trio is a six (seven if you count the dog) and we are a brilliant team. Finally, I can say that I am the mother my boys deserve, not in spite of my challenges but because of them. I was a broken woman but my boys put the pieces back together and made a mosaic picture that I love.
I published our story ‘Our Altered Life’ in 2017 after 9 years of writing in the hope that a mum, lost like I was and in need of reading the things she might be afraid to admit, would read it and know that an altered life can still be an incredible one. I then continued our journey on our social media channels where our followers have fallen in love with my boys. Many of our followers came to our channels through curiosity but as soon as they ‘meet’ Harry, they soon forget his differences and see the boy he is and I feel very humbled by the messages of support that I get all the time.
I have also just set a charity up so that I can visit schools and educate young people on facial disfigurement, the consequences of their reactions and some proactive advice for the future. I introduce them to my boy (via YouTube) in a bid to encourage them to see each other for the people we are and not just what we look like. They are the next generation and I am painfully conscious that one day I will die and not be here to protect Harry. My hope is that his differences will be accepted, celebrated even and that he can have the life he deserves. I am so proud of my boys, of our journey and of myself. I should never have doubted that I could be the best mum for my boys. Sometimes it just takes a little while to realise but when that love and knowledge comes, it’s absolutely worth the wait.
To the parents out there who may be reading this. Please don’t be too hard on yourself, take it one day at a time and talk! Don’t keep things bottled up as it only damages you more.”
This story was submitted to Love What Matters by Charlie Beswick, 39, of Staffordshire, England. You can follow their journey on Our Altered Life here. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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