It’s not easy when your child has been diagnosed with a rare condition. One mother has shared her personal diary to look back at the difficult emotions she experienced at the diagnosis of her son’s chromosome condition. Ten years on, she shares the love and appreciation she has for her incredible 11 year-old boy who is showing the world that it is OK to be different.
“I’m going to burst, fucking burst, if I don’t get this off my chest. I think I can truly say that I hate motherhood - it’s all hard work with no rewards, or not much reward from my son anyhow.
I know I’m horrible for writing this, but I need to write the truth. I’m HATING IT ALL. I’ve also got PMT at the moment, so I know I’m not myself, but after seeing a friend today who kept going on and on about how much she loves being a mum: “Isn’t it amazing?” “I never want to go back to work.” “I can’t believe I’ve got a baby…” On and on she went…
It made me realise I’m the opposite to her in every way. I couldn’t wait to go back to work, I dread my days off. I pretend it’s all good, when it’s not. I wish I had my old life back. I have more bad times then good times with my son. I analyse everything he does to try and suss out if he has mental problems or not. I ask my husband all the time if he thinks our son is ‘normal’?
I feel claustrophobic. Some days I could become hysterical, I could jump under a train, run away. Anything just to forget, for a moment, that things are this hard, this difficult.
I cannot get my head around my son’s condition. I’ve tried for 19 months now and it’s not got any easier. All I have learnt is how to put a brave face on better – I’m truly breaking up inside and nobody can help me.
Would it all have been different if he was a girl? I think it would have helped because smallness in girls is easier to handle then in boys - the macho thing and all. But it’s not just that, it’s the lack of speech that’s driving me insane. I just want to go away for a year on my own, and come back again to see where he’s at then. I just can’t wait for another year to go by. Twelve more months on the edge – looking at him through hard eyes, through unloving eyes – yes, that’s how I feel.
I’m sure I don’t love him like my friends love their children. I did before we were told the news. I remember when my son was about a week old and telling my brother that I’ve never felt love like this, that I’d die for him and I cried when I said this because I’d never meant something so much. Now it’s different because nobody can tell us what quality of life he is going to have, no doctor can give us any insight in to what the future holds for us. All I can see is misery and gloom. I’m sorry, but I do. I can’t see any future, I can’t even think about the future because I don’t know what he will be able to do.
I know if somebody ever read this, then they would put me in a mental home. Doesn’t anybody realise that I need counselling? I need to talk to people who know. I need doctors to be more specific. I can’t live in this no-man’s land that we’ve been in since 2007.
My problem is that if there is something wrong with my son, that he is mute, autistic, hyperactive, disabled, then he will probably be on the cusp of it, which is a good thing but again there is no definite answer. Maybe there will be when he is four?
Friends say to me, I can’t believe how quickly the babies are growing up and I agree - I’m pretending because it’s not like that for me. My little boy is still the size of a baby, he hasn’t grown up and the time has gone super slowly, dreadfully slowly.
Sometimes, when I look at a photo of my son and his peers, I put my thumb over the face of another child and pretended to myself that I’m the proud mother of a little boy who is big, strong, able, heavy, prominent…. But I’m not. I dearly love my son but I wish, wish, wish he didn’t have this problem.
My mum turned up to my house one day, at a bad time. I was on the floor crying and I shouted at her that I didn’t want him anymore, that I didn’t plan this life, and she scooped my son up and shouted “Right. I’m taking him then, he’s coming with me!”
And it was then that my love and my animal instinct kicked in. I leapt up and shouted “No you’re not, he’s mine!” and burst into tears. It was then that my mum said something to me that turned me around and made me realise that maybe I’d be able to cope with this. She said: “He’s not just your baby, he’s OUR baby.”
I felt my shoulders drop. I felt relieved that my family were prepared to take on his challenges whatever they may be and that his life didn’t just depend on me.”
I wrote these exact words in my dairy in 2008, a year after our was diagnosed with a rare chromosome condition. It’s so rare that the doctors couldn’t give us a single answer about his life span, his health or his cognitive abilities.
Eighteen months later, we finally found out that his condition was only going to affect his growth and - touch wood - not anything else, but as you can imagine after a year of no answers and doctors scratching their heads, I didn’t believe a word the doctors said to me. So, I spent the next seven years studying and analysing my son to make sure everything was working as it should, and I therefore didn’t enjoy or even remember much of his toddlerhood.
When my son turned 7 I finally let myself breathe… He was at a mainstream school and learning. He was a good head size smaller than his school friends, but so cute and everybody loved him and wanted to be his friend. I was happy and so relieved.
I’ve had counselling since and learnt that I was grieving for the child I had planned, the child I imagined I would have. I wouldn’t let myself make plans for us as a family, as I was frightened it would all be taken away from me. I wouldn’t, and still don’t believe, what doctors tell me, so I use my instinct to evaluate a situation with my son and take it from there. I’m normally right!
I’ve just shown my husband this piece and apologised before he read it as it’s the first time he has read my diary extract. He said he didn’t realise I was clinging on for dear life as much as I was and that he actually felt the same. One thing he said to me when we were in the thick of it was “as long as my son is happy and smiling, then that’s all I need to know.” And by god does that boy smile!
My gorgeous son is 11 years old now. I read the words above and feel guilty for even feeling that way. I cannot believe I got through such a dark time and have come out the other side.
I’m embarrassed to share this with you all, but in doing so I hope that it helps anyone struggling with coming to terms with a life they have been thrown into unexpectedly and know that it’s OK to feel those wretched emotions. It’s in our human psyche to plan ahead and imagine what our child or life will be like and when that all goes tits up, so does your brain - for a while anyway!
I can’t believe we’ve been blessed with such a beautiful, kind-hearted, bright son, who only sees the positive in anyone or any situation. He’s taught me so much and keeps teaching me. I thank god every day that my husband and I were the ones chosen to be his parents. We love you my darling, you are our angel and our life.