We were parents! Our lives had changed forever. Mark had gone to make all the customary phone calls to announce the safe arrival of the boys and I, apparently, was snoring like a warthog on the ward. Sexy!
When Mark came back, the Doctor joined us with a midwife in tow. They both looked nervous and I began to think that they were bringing something other than good news and congratulations. “Twin one is ok” There we go. There’s a ‘but’. I could hear it hanging in the air. “Twin two has some problems”. He drew a line down the middle of his face as he continued to talk and swept it across to the left. All I heard was “no eye socket, no eye, no ear, no nostril, his jaw looks short. Golden something or other and hemifacial something. Might have affected the spine. We don’t know if he will walk. Not sure on brain function. Two arteries in his umbilical cord instead of three. Need to check his kidneys”
This wasn’t happening. Doctors came to tell you your baby’s weight, that they were ready for cuddles, not that they only had half a face and a fractured life. What were they leaving us with?
Tears rolled down my face and Mark says that I just kept whispering “I’m sorry”. All I felt in that moment was guilt. What had I done to my baby? How had I caused this? I don’t smoke and hadn’t drank. I had looked after these babies so well but I was sure now that I must have done something wrong. The doctor assured me that it wasn’t due to anything I had done but I wasn’t buying that for a second. Grief followed. We’d talked to the babies, imagined their lives, planned their birthdays, talked about their schools and futures. We had two of everything (thanks to those who gave me that advice) and our house was waiting for two ‘normal’ babies. Now I was being told that I had only got one and a half!
We had no idea about the quality of his life, how he would function physically or mentally, how long he would live. I wasn’t prepared for this. This boy needed a better Mother than me. Our lives had changed forever – derailed at the point of arriving at our destination only to leave us stranded elsewhere. So many thoughts raced through my mind and yet I sat frozen to the bed in disbelief. Please not us. Not me. No. It couldn’t be happening. I wanted the babies my bump had promised me. Not this. Just no. Forget 16 year old unrequited love, THIS was what heartbreak felt like, a physical pain beyond words.
I would love to tell you that I snapped out of it a few minutes later. Saw sense, gave myself a talking to and my maternal instincts kicked in. That I decided to love him regardless of what lay ahead for us all. But I can’t, because none of that happened. Over the next few weeks I was so consumed with the guilt of damaging my innocent baby, and don’t forget recovering from surgery and the usual baby hormones anyway, that I just got more and more lost in a maze of emotions.
But back to the Doctor. He asked me if I wanted to see the boys. Did I? No I did not. I wanted to stay on the ward with the other mums who had the babies they had dreamed of. I dearly wanted to be one of them. And I was scared to see what the Doctor had just described. I wanted to go to sleep and wake up to find this had been another pethidine hallucination. I didn’t want to see my boys so what did I do? I did what all people do when they are ashamed of their thoughts and too afraid to voice them. I forced a smile and said “yes ok”. We were parents. Our lives had changed forever.
P.s If you abandon the blog at this point because you think I am a disgrace (and don’t worry – plenty have said it) then just know that my boys are my greatest achievement in life and I am hoping that my honesty in sharing my journey will help other mums which can then become my second greatest achievement. The truth shall set you free (after some cyber abuse and judgment of course ? )
If you are the mum of a child with a diagnosis and/or additional needs and you would value hearing from another mum who truly ‘gets it’ and often says what you feel too nervous to admit (plus a great community!) then sign up to my newsletter now!
Wow Charlie, your honesty and your love for your boys is so clear throughout your blog. I love the way that it is written, the humour that is dotted throughout, it’s fab. You are a breath of fresh air both for your honesty in sharing your feelings and your humour.
I am sorry that you have been judged and treated in the way that you describe…. its so very wrong of those people. You are certainly not a disgrace, just human.
I think sharing your feelings in the way that you do will help others in sharing theirs.. or even make them stop and think… yes it’s ok to feel the way I feel or felt. thank you. X Michelle
Thanks so much for your lovely comments. I always knew that by being honest I would encounter judgment and opinions but my mission is to help others know that its ok not to be ok for a while, to have the pity parties if they need to, just not to unpack and live there. I’m thrilled you are enjoying the blog. Please stay with us on the journey 🙂
My best friend had twins 23 years ago. My god son has Down Syndrome. Your honesty is beautiful. I look forward to reading more and congratulate you.
Thanks so much Josa. Not everyone appreciates my honesty but I know the ones who need it will. Thanks for your comment 🙂 x
I think that what you felt at that time was perfectly natural. You were no doubt in shock and grieving for the baby you thought you’d have. It doesn’t make you a terrible person. It makes you human and anyone can see you adore your boys. You just needed time to process it. Your boys are beautiful x
Thanks Cat, thats exactly how it was. I love when people ‘get it’ not because it makes any difference for me now but because it gives me hope that another Mum like me will know they can be honest if they feel like I did x
My son is 9 weeks old and has some features of golden har (we are waiting on genetics, his presentation is not that of your beautiful sons). When we found out that my “perfect” little boy, after a beautiful,uneventful pregnancy, had the issues he has… My world screeched to a halt: I wanted to run away and hide. I swam in guilt for the first 4 weeks he spent in NICU. He is now sleeping on my chest and even though I still have cloudy days, the sun shines brighter and stronger every day.
I spent hours searching for people that would share their story openly and honestly. No one can tell you you’re a bad mama — we are allowed to grieve what “should have been”! In fact, in order to be amazing mamas it’s important to do.
I know your boys are now much older, but thank you. Thank you.
I cannot tell you how much I absolutely love your comment Laura. I am so glad you liked it and that it has helped a bit. My darkness lasted much longer than 9 weeks but the love I feel now will last an eternity. If youre on facebook then follow my page there and you’ll be notified when my book comes out (be warned, its a bit dark but its the honest account you have looked for and it shows that even the most lost mommas can find their way home again) Stay in touch if you can. I’d love to know how you and your little man get on. Much love, Charlie 🙂 xx
Wow! I just had a baby with Apert Syndrome 6 weeks ago…… the words you said were exactly my words, feelings, thoughts! Thanks for sharing and making me feel human! I love this little life God has given me, but the grief has taken time…..
Heather, thank you SO MUCH for your comment. My whole reason for blogging is to reach Mums like you, like I was. My book will be out this year so please do stay in touch (my facebook page is also called Our Altered Life) as you’ll probably read the things you have thought but not wanted to say. It gets easier. Love to you and your family <3 Charlie xx
How can anyone say you’re a disgrace????
You’d be surprised at the comments I have had over the years. This rhino-skin I wear has developed as a response lol
God Charlie I just think you are amazing. I’m a mum of twins myself and having been a special needs teacher for years I had an overwhelming fear that one or both would have difficulties. I’ve always loved the children I worked with but didn’t know how I’d cope if I was one of those mum’s. I was blessed my babies were ok. I think your honesty is admirable and will help so many others. God bless you and keep up the good work x
Thanks so much Kerry. I think thats really honest of you to say too. Honesty is so important for any mother but more so when your child is as unique as mine. I really do hope that other mums drawn some strength from knowing its not just them. Thanks for taking the time to read my blog and comment. C x
Oh my goodness I cannot even imagine what that must have felt like or for your family to go through. Do not ever think you are a ‘disgrace’ – You’re amazing. Your honesty is refreshing and relatable. Keep being you xx
Thanks so much. I needed to read that today. Great timing C xx
I don’t understand why anyone would presume to judge you. I have nothing but admiration for you and your boys. Good luck to you and them.
Thanks so much for your lovely comment. Support means a lot x
I just found your blog today and will already be a new a lifelong fan… you write with such candour and searing honesty as well as evidencing a great sense of humour n heartbreaking circumstances.
It’s hard to believe people would vilify you for airing your innermost feelings and trying to give support to other parents going through tough times, but sadly I don’t doubt it is true.
I have 2 sons (now in their mid-20’s (oh dear, that makes me feel old!). The younger one had (eye cancer) Retinoblastoma as a baby and lost his left eye aged 10 weeks.
Despite the fact that we didn’t have the other complications to deal with that you are confronting, I empathise with your emotions and spent 12 years as a family support worker for other parents whose children were diagnosed.
As a toddler and young child, my son used to visit families with me to show them his artificial eye, and I wrote articles for various charity publications in an effort to provide a vision of the future for those struggling with the present.
Please ignore the detractors!! You are providing not only a worthwhile catharsis for yourself, but also shining a huge, bright light along the path ahead for others in similar situations and I wish you continued strength and humour to carry on. I will certainly be “following”!
From one ‘altered life’ mum to another thank you so much for your lovely comments. We sound like very similar people and mothers and I love how proactive you were in supporting others through their journeys. I only hope to help as much as you clearly have and would love to connect with you on Facebook if youre on there? C x
whatever we have is a gift from God, and we must be grateful and guard it. Although it is difficult but realize that this is our test and we must be patient and enthusiastic
Thank you Sonya C x
Wow. This is very tough reading…..mainly because it resonates so well! Almost 12 months ago to the day I was sat in the Neonatal Unit sobbing “I’m sorry” to my husband following confirmation of our daughters rare chromosome disorder. What a year its been since! The biggest rollercoaster in the world has nothing on our ride i tell you!
Looking forward to delving into your altered but beautiful life! Thank you for taking the time to write it x
Thanks so much for your comment Lorraine. Knowing that other mums are feeling as lost as I was once gives me the motivation to keep writing. Much love to you and your altered life from me and mine C xx
I have only just come across your blog and I could have written this post! Different scenario as we were told at our 20 week scan that our little boy had Spina Bifida, but I spent the remaining half of my pregnancy working through the same things as you – guilt, grief, questioning why this and why us, guilt that his big brother would end up neglected. And, in complete honesty, the awful nights where I wished I’d never gotten pregnant.
I felt like the worst mummy in the world at the time, but they are valid and important things to work through, it’s such a huge thing to process. I’m so sorry you were met with negative responses; those people had no right to tell you how you should feel or react.
My beautiful boy is now 4 months old and doing really well. I think grappling through all those feelings and fears has made me even more sure that I can love him fiercely and completely, despite any challenges.
Much love to you and your boys, from me and mine x
I love your comment Catherine and I am so glad that you found some common feelings and comfort from my blog. I truly believe that in sharing our thoughts and feelings, we are just giving a voice to the unspoken pain of others as well Cx