I had never ever imagined life as the mother of a special needs baby. My pregnancy was a great and healthy one and I expected nothing but two happy healthy bundles of joy when I delivered my twins (by emergency c-section, 8 weeks early but that’s a whole other blog)
The reality of a life I had no time to prepare for was scary and I did not cope well at all. Looking back, there were a few things I did that helped me and there were things that I did later which I now realise would have given me the boost and support I needed at the time. This is by no means an exhaustive list and maybe what would have worked for me, might not work for everyone but I hope there are a couple of things in here that might help a parent who is finding their way through the new terrain of disability or special needs.
I do want to make it clear though before I am bashed again for being called ableist (which I am not but read my blog to find out what I definitely AM when it comes to discrimination) that I am talking about the feelings experienced when faced with a different life you are unprepared for not the children we create.
Believe the doctors
I was absolutely convinced that I had somehow caused Harrys condition (Goldenhar syndrome). I was utterly consumed by guilt and remember at one point being so tormented by the accusations in my own head that my thoughts just felt like white noise. It was physically painful. But it wasn’t true. My family and friends tried to tell me it wasn’t my fault but I believed they were just saying what I wanted to hear. It meant more though when it came from a specialist. They had no need to be kind and I knew that it was their job to be honest with me. If you, like me, feel that your baby’s condition is the result of something you did or didn’t do, all I can say is that those feelings robbed me of some pretty crucial early bonding experiences and damaged my sanity. Maybe you think there’s a genetic link, or a result of some medication you took. Whatever the reason, unless you deliberately acted in a way which would harm yourself or your unborn baby then please don’t torment and blame yourself. You will only suffer more in the long run.
Its ok to think and feel how you do
There is no text book response to the news that your baby has been born with a condition which will affect their (and your) life forever. You are entitled to feel anything and everything you want to. Know that it is all completely natural and those thoughts do not make you a failure or a bad mother. Merely human. At the end of the day, parenthood is a learning curve for us all and we all struggle at times! Don’t be too hard on yourself.
My biggest mistake was bottling all of my emotions up and not talking about how I felt. Particularly with my husband and I believe that to be one of the reasons why our marriage failed. Saying words out loud somehow has a way of reducing their power and hold over you. Voicing your concerns and worries means that they stop circling your mind like caged wild animals. Airing them sets them free. At worst case scenario, you might feel differently about them once they are out in the open. Best case scenario is that the person you tell just might be able to help. ‘Better out than in’ might not be a phrase that works for cheese but it definitely works when it comes to discussing your feelings.
While I do accept that all children are a gift, at the beginning of our journey I felt cheated. Robbed of a future I had planned in my head for my son. I grieved for the life he might never know and the experiences he would never have. I also grieved for myself. For the carer I didn’t expect or want to be. For the mother I would never become. It turns out that I am a better mum than I ever thought possible and looking back, that grief paralysed me and hampered my ability to bond with my boys. Grieving is natural but wallowing in it as I did for a while, is dangerous. I wish I’d had someone who had been in the same situation who could understand that I needed to grieve but could also reassure me that life would still be brilliant and give me the kick up the arse I needed to give me some clarity and focus. That’s my advice now. I am the person to say “yes, its crap but as much as you have lost a life you dreamed of, you will gain an incredible one and you can’t begin to imagine now how much you will love it”.
As soon as the doctor told us that Harry had Goldenhar syndrome he followed it up with ‘but don’t google it’. Of course, the minute he had gone that’s exactly what I did and I am glad. Associated with Goldenhar syndrome can be spinal issues which impair mobility. We were prepared to hear this news so when we found out that his spine was fine it was a massive relief. For me, I needed to know the potential catalogue of issues that could face us and work backwards. It was a relief to know the worst-case scenario and know that we wouldn’t have to deal with aspects of the syndrome which could have made life even more challenging. Equally, if I had been aware of further implications of the diagnosis and it turned out that Harry had been affected in those ways too at least I would have had time to prepare mentally for the news. I don’t think being prepared for the worst makes me a pessimist, just a realist.
What I didn’t do at the time but have benefited from since was joining Facebook groups. Whatever your child’s condition, I am sure there will be a group or community of other parents who have been through exactly what you are going through. Even if you just join and don’t contribute for a while. There will be comments you have thought as well and questions you never even thought of yet. These people will become your tribe and you will identify with them so much in time. For me, I know it would have helped me to be a part of such groups and now, it’s a huge indicator of how far I have come when I am able to offer advice to other new mums. It’s always great to be able to give support and advice as well as receive it and you will be amazed how soon you are able to do that for others.
See your baby first
This could just be me but when I first held Harry a few days after his birth (he was transferred miles away from me and so I didn’t see him for a while) I struggled to see anything other than the fact that I had failed him so massively. I didn’t notice the fact that the one eye he did have was incredibly beautiful or the cute way that he slept on his hands under his face (he slept like that for years afterwards). For me, I failed to see the baby behind the label in the early days and weeks as I tried to process the news of Harrys syndrome. I fight hard now to help others see the boy behind the face and if I could hold my own hand through it all again I would be making myself consciously aware of all the gorgeous features of my child. If I was holding your hand through a similar time, I would ask you to do the same.
Take one day at a time
Worry and questions can consume you like quicksand. If I have learned anything over the last 12 years it’s that the future will be here before you know it and worrying alone won’t change the outcome. At the end of every single day, find at least one thing that has gone well or made you smile. Something to be grateful for in the small moments and trust me, the seeds that you plant in your mind of the good times will be the garden you rest in when times are tough. The good seeds you plant in your mind will be the garden you rest in when times are tough Click To Tweet.
When times are tough, remind yourself that life is still good. Get the friends around that make you laugh till your sides ache, watch the films that warm your heart and cheer you up. Take photos of happy moments and keep them in the favourites on your phone. Try to find some joy in each day (see point 8) Gratitude journals help some people, including me, but things like that are like suppositories, you only tend to give them a go when things get really hard. Trust me, it’s worth it. And far less uncomfortable that a suppository (apparently!)
Take care of yourself
Post-natal hormones are the enemy of rational thought. You need to be match ready!
Eat well and make sure that you are getting the nutrients your mind and body needs to recover both physically and emotionally. Get enough sleep. I know that’s easier said than done but try your best even if it means recruiting family and friends to babysit while you have an hour or so. I was too stubborn to ask for help on that one and only made things worse for myself. Get out in the fresh air. I was at my happiest in the first few months when I walked my boys in their buggy around a local reservoir and just enjoyed the peace. You need to look after yourself more than ever now. Make yourself a priority.
Repeat after me “I can do this”
People used to tell me that Harry had come to me because I was the mother he needed. I hated hearing that in the beginning but now I know it’s completely true. Our own negative talk can be really harmful and the conversations we have with ourselves are incredibly powerful. The old saying “If you can’t say anything nice, don’t say anything at all” is as true for ourselves as it is for others. I don’t know many of us that can’t say anything at all though so I prefer to say “don’t say anything to yourself that you wouldn’t say to your child”.
Be kind to yourself, trust that you ARE enough and know that you’ve got this.
So, there you are. My top tips based only on my experience and opinion. Less practical tips would include eating your own body weight in cheese and enjoying a lush rhubarb gin every now and then but work through the others first. Cheese and gin can be your reward! (You can take the girl out of teaching but you can’t take the teacher out of the girl!)
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!