If you are a regular reader of my blog you will know that I never expected the life I have today when I was pregnant. For those who are new to me and this page I’d direct you to my account of how life changed forever in a moment and ‘what not coping looked like for me‘ to understand the background to my story but basically I expected two healthy babies and had no reason to suspect otherwise. When Harry was born with essentially half a formed face due to a congenital cranio-facial syndrome my life turned upside down and I felt so many things; sadness, shock, grief, guilt and anger. I felt so angry.
Recently, I had a message on Instagram from a lady who follows me. She has a son with down syndrome and said that she’s been struggling for while feeling angry with the world and it got me thinking about the reasons why I felt so angry (and still do sometimes). As always, I hope in sharing my thoughts today, a mum like the one who contacted me, knows shes not alone and there is light at the end of what feels like a very dark tunnel.
So who or what was I angry at and how did I work through it?
God / Universe / Life in general.
Why us? Why me and my baby? Of all the millions of people in the world, why was it our lives that were changed forever by Harrys syndrome (and later, his diagnosis of autism). This anger was repeatedly on loop for the first few days without any let up. The unfairness of it all felt horrific and it manifested itself as a physical pain in my head and my heart. I don’t remember consciously working through this and all I can think now is that as I was presented with facts to consider and decisions to make, I simply didn’t have time to question the ‘why’ and had to use all my energies on tackling the ‘what next?’ Now, I can honestly say that this question (and the anger that accompanied it) doesn’t ever cross my mind. As I got to know and fall more in love with my boy, I actually feel so grateful that he’s mine.
Harry’s syndrome affected the formation of his skull and there is no way that it should have been missed when I had my scans. But it was. At first, I was so angry that I was feeling the shock that could have been avoided if I had known but over time I asked myself would it have made a difference if I had known anyway? The answer is yes and it’s no. I would have been more prepared but I would have still loved the face that I cherish now and kiss as often as he will let me. Sometimes, when feeling like blaming every man and his dog, you just have to have a word with yourself and tell yourself that you’re being unreasonable or in my case “Charlene, stop being a knob” The sonographer wasn’t to blame. No-one was to blame. It took my such a long time to realise that and let the anger around it go.
Doctors with no answers.
As I wrestled with the ‘why’ of our situation, I looked to the doctors for the answers but there were none. There were only more questions and that made my head spin. I wanted them to tell me that I had caused the syndrome, or genetics were the culprit. I wanted to hear that it was something I had or hadn’t done. Anything so that I had someone or something to blame. That anger consumed me for such a long time. Eventually I realised that the doctors were as clueless as me and in time, I became the expert in my boy and I learned that the questions would be answered in time anyway. Acceptance and patience were the forces that dampened the anger.
People with questions
As soon as people (including family and friends) saw Harry they were full of questions. What had caused the syndrome? How common / rare was it? What would the long term implications be? Would he need surgery? What would that involve and where would he go? The questions came thick and fast and not only was I angry that the doctors didn’t know the answers but I was positively furious that I had to say “I dont know” a hundred times. This anger was irrational. The doctors themselves couldn’t tell me what I needed to hear and yet I was angry with myself for not having the answers for others. As if there should have been some Wikipedia injection that I could have as soon as the boys had been born to help me give others the answers they sought. I beat myself up for anything and everything in the beginning. Some anger was justified, some was misplaced. This sort just exhausted me and made my weary brain and heart even heavier. In time, as I learned more about the syndrome and specifically how it affected Harry I was happy, keen even, to share information with anyone who wanted it but again, it took time and patience.
The smoking mums
This one, oh it got me for a long time. I took care of my body and its precious cargo so well through my pregnancy and yet Harry was still born with the syndrome. Meanwhile, Mothers who were drinking and smoking throughout their pregnancy, aware of the potential risks, had perfectly healthy babies. I watched them puffing away on cigarettes at the entrance to the hospital as they awaited the arrival of their child and I watched them taking perfectly healthy babies home a few days later. Oblivious to how lucky they were. Blissfully unaware that another mother who had been so careful to take care of her twins in utero was breaking in half watching them enjoy a life she would never know. Of course, people told me that Harry had come to me for a reason. That I was chosen and special. I didn’t want to be chosen and special. I wanted to be ordinary. I wanted the life I had expected, the one that the chain smoking mothers took for granted. I was venomous for a long time and again, I don’t know when or how that anger left me but in time is dissipated like cigarette smoke in the wind.
There were times at the beginning that I would study the beautiful perfection of Harry’s formed side and be positively furious that the syndrome had robbed him of his symmetry. That years and years of countless operations would try to replicate (often in vain) what the syndrome had prevented mother nature from doing in just a few weeks. It all felt so unfair. It also meant that I couldn’t do things like breast feed Harry in the same way that I did Oliver and he needed watching constantly over 24 hours as his airway could be compromised. I was physically, mentally and emotionally exhausted. Then, when Harry’s diagnosis of Autism arrived, I knew that life would be taking another detour. For me, Harry’s lack of communication was the hardest aspect of his condition. He would get frustrated and hit himself time and time again while I was unable to predict his meltdowns or soothe away his hurt. As the operations have given him an element of symmetry again and we have developed an understanding that doesn’t always need words, I realise that I love him regardless of the way he looks and communicates and I am rarely (but occasionally) angered by any of his medical conditions now. In fact, his autism protects him from much of the hurt that would have arisen from the other thing that annoyed me…
The children who stared and cried
When the boys were toddlers my best friend dragged me out to play centers with her and her young son. Together we would watch children approach Harry and grimace, cry or run away. If the children were older they would gather friends to come and point and stare at my boy like he was some sort of fascination to be discussed. I hated that. I hated that they never gave him a chance, never said hello. That they curled their lip in repulsion before a smile. That their parents looked flustered and embarrassed and ushered their children away as if Harry’s face was contagious (read my blog on explaining facial disfigurement for some tips). Of course, now I know that the parents just felt awkward and rather than explain in front of me, they would more than likely have a quiet word with their child and tell them that it wasn’t nice to stare at children like the little boy with one eye. Now, I preempt any questions and try to introduce Harry at the point where curiosity is setting in. If I have learned anything at all on this journey its that being proactive means you feel in control of the situation, empowered even and proud of a boy who is so much more than a diagnosis. Anger doesn’t have a place in that arena.
I am lucky in many ways when it comes to fighting for the basic rights of my child. Many parents of children with SEND (Special Education Needs and Disability) have to fight for diagnoses, medication, appropriate care, education and reasonable adjustments. Hell, some are even having to campaign for toilets so their children can have some dignity. But one thing that has angered me is the issue of transport to and from school (which is a blog on its own really). Ill qualified or experienced chaperones, inappropriate and unfairly long travel routes and safety issues are just some of the things we have dealt with. The care for my son starts as soon as I hand him over to the transport to get him to school and yet so much of that is comprised because of council budgets. The message here is that safety, emotional, physical and mental well-being all come below cost in order of priority and it gives me the absolute rage. I have argued with councils until employees have refused to speak with me but I will never apologize for ensuring that my child is safe and I will never, not feel angry that this is a basic right that I have to fight for.
Finally, I felt angry at myself
Initially it was because I was utterly convinced that I had caused Harry’s syndrome. With no answers to confirm otherwise I found morbid comfort in the (incorrect) belief that I was to blame. I created a reason and I hated myself beyond words. As my grief subsided and I realised how wrong I had been, I stopped feeling angry at myself but that has been replaced by a different reason. You see, as I manage Harry’s needs and often during his meltdowns, his twin brother will need me and, exhausted by life in general, tired and working full time to reassure Oliver’s anxiety and answer his constant questions, I will snap at him. And I will see that I have hurt him. Sometimes, even before the sentence has left my mouth I will regret not digging deeper to find more patience and I will apologise. Again. As much as I try to find those reserves of tolerance and patience, it seems that Oliver is the one who gets the brunt of my frustration and I feel so angry at myself that I could, and regularly do, weep. As I have been able to work through so many of the reasons for feeling angry over the last 13 years, this remains an issue that I want to address and until then I reserve the right to feel incredibly angry with myself. Because my boy, the unsung hero of our story, deserves so much more than the sharp temper of a weary Mum.
I often wish that I could go back in time and sit with the lost woman I was sometimes and tell her what I know now. To reassure her that everything would come together in the end. To implore her to have patience and to promise that things would get better. To beg her not to let the anger, guilt, grief and sadness rob her of years she would never get back. I have written to that mother in the past in the hope that a mum who needs to read it now, finds it and doesn’t have the regrets that I do. They say love is blind but so is anger and grief. Hindsight, on the other hand has 20/20 vision and so I hope that my blog, today and always provide new eyes on a life that a new mum is struggling with. If that’s you, please try to see your life through my eyes for a moment and know that however lost you feel at times, you will be found again.
And chances are, it will be your child who saves you, just like mine saved me.
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