“When my water broke at 32 weeks, I didn’t once worry that the babies were arriving so early. I felt like I had been pregnant forever, having found out at just 7 weeks that I was expecting twins, so I was excited to finally meet them. I had a feeling I was having at least one boy but wasn’t sure about the other baby. When people asked, as they do, I just said, ‘I don’t mind as long as they’re healthy.’ I never thought about the impact of having a baby who wasn’t healthy.
My boys were born by emergency caesarean weighing only 3lbs 9oz. Oliver arrived first, and then Harry. They were whisked away to the special care baby unit as I knew they would be, and I drifted off into an exhausted but content sleep.
When I woke a few hours later, my partner and I were met by the serious face of one of the pediatricians. When a sentence starts with, ‘twin one is fine but…’ you know your life is about to change. He told us Harry had a rare craniofacial condition called Goldenhar syndrome which had never been detected in utero. He had no eye, eye socket, ear, nostril and a short jaw on his left side. We were also told that Harry may have spinal problems and brain damage and so, at that point, his future was uncertain and he was being transferred to a larger hospital over 20 miles away for tests.
There is no other way to explain how I felt at that moment other than devastated. I was convinced that I must have done something during my pregnancy to cause the syndrome and even though the doctors told me I hadn’t, my head ached as I dissected my pregnancy looking for ‘the’ moment that made the difference.
When I finally saw Harry almost a week after his birth, I could hardly process the absence of his left side. It was a totally blank and featureless canvas, and all I saw was my failure to give him the very basics in life. Looking at photographs now, it breaks my heart that I never noticed just how beautiful his one eye was, but I make no excuses for the way I felt at the beginning. I always loved both of my boys, I just hated myself.
Over the next few weeks and months I battled with the guilt and the fear of not knowing whether I was the right mom this baby needed. I doubted myself in every way possible and looking back now, I realize I was grieving for a life we would never have. The life I had subconsciously planned for me, my fiancé and our boys. A life that Harry may never ever experience. I felt robbed, angry and exhausted. And yet, I smiled and let people believe I was coping, that I was strong, when all the time I was broken and changed forever.
It took months for me to feel confident in taking the boys out and about, not helped by the reactions of others when they saw my boy. Adults would stare into our double buggy before being visibly stuck for words. Children would point, stare and sometimes cry. For a while, I stayed inside the safety of my own home, only leaving to walk the boys around a local reservoir where we were undisturbed. It was my best friend Caroline who eventually convinced me to go to baby groups with her, and with time and support, I was able to ease myself back into a world I no longer felt I belonged in.
When the boys were 18 months old, I was reading a women’s magazine in the hairdressers and read an account of a mother whose son had been born with the craniofacial condition Treacher Collins syndrome. She said she had felt an overwhelming surge of love and protectiveness as soon as she held him, and I remember thinking that while I was pleased for her, my experience had been very different. I knew that if I had read her account after just having Harry, I would have felt even more of a failure than I already did. I started to document my thoughts. I recorded my deepest thoughts and fears, my hopes and dreams, our trials and our successes. I found it cathartic and it gave me somewhere to release the things I wasn’t saying out loud. I did this for almost 10 years.
During this time, Harry was diagnosed with severe autism and started at a special school while his twin went to mainstream. I found this transition incredibly painful. I felt like I was failing Harry, giving up on him somehow by not giving him a chance in mainstream. Looking back, knowing what I know now, those feelings were about me and my hopes for my son rather than being about what was actually best for him. Watching him thrive at his school, there has never ever been a day when I have regretted his placement there. My then husband and I also separated and divorced, for many reasons, but one of the main reasons I feel was the fact we never openly talked about how we were feeling. We never cried together, comforted each other, we dealt with our altered life separately, and it was our undoing.
In 2009 I became a single parent, full time teaching with 3-year-old twins, one of which only slept for about four hours a night. I was exhausted, physically, mentally and emotionally. I decided that the world, and my boys, would be better off without me. At that point, my mom literally dragged me to the doctors where I hung my head in shame and admitted I needed saving from myself. The antidepressants he prescribed saved my life.
Fast forward a few years and the network marketing business I was running had given me more free time. I turned back to my trusty diaries and notes. I read back about my frustrations for Harry as a non-verbal toddler and child, trapped in a silent world, with no way to tell me how he was feeling. I revisited the incredible moments that I celebrated many things that most people take for granted; eye contact, a smile, some recognition, a new food. I remembered the times I sniffed my boys’ hair and hugged him to me before he went for yet another reconstruction operation (over 20 to date).
I relived my journey from a terrified and lost mother to a warrior mom who would do anything for her children, and has become a proactive force in engaging other children with my son who looks different, but is so very much like them too. I realized I was a better person and mother for having my boys and I felt sad that I had wasted so much time doubting myself and worrying. I remember thinking that if I could have only read my notes at the start of the journey, it would have made such a difference. So I compiled it all together and sent it to a couple of friends for their honest critique. They both came back with a resounding ‘publish it!’ and so Our Altered Life was born and an Amazon best seller for a time. Having been bitten by the writing bug, I then started blogging over at ouralteredlife.com, but still felt I wanted to do more.
Using my experience as a teacher, I founded More Than a Face, a charity to raise awareness and promote acceptance of facial disfigurement with children and young people. The feedback has been incredible and I finally feel I am making the difference I was born to do, thanks to the boy who changed my life.
Yes, Harry’s birth changed me forever, but it changed me for the better. And now, the life I never expected is one I wouldn’t change for the world.”
This story was submitted to Love What Matters by Charlie Beswick in Stoke on Trent, Staffordshire UK. You can follow their journey on Instagram. Do you have a similar experience? We’d love to hear your journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
Do you know someone who could benefit from this story? SHARE on Facebook to let them know a community of support is available.