Followers of my social media pages over on Facebook and Instagram will know how important it is to me that I show our lives honestly. That means showing the bad days and the challenges as well as the great days and the successes.

Recently Harry has struggled with toileting after a UTI earlier in the year left him in a bad way. I was explaining in a post this week about how hard it is to watch him in pain and received a message from a young guy who follows the page. He has a couple of disabilities himself which has made life particularly challenging for him and his family and he wanted to ask a question that had been tormenting him for a while.

Outlining his conditions and treatments over the years he explained how much he had been through and how much he had watched his parents struggle and worry. He asked me if I had ever considering an abortion when I was pregnant or if I ever resented Harrys’ conditions. It is something he dearly wants to know the answer to but fears that he won’t get the truth if he asks or that asking it alone will upset the people he loves the most. It was a brave question and it got me thinking. If he is thinking it, then how many other children with or even without disabilities, watching their parents cry, fight and worry for them, wonder it too. I cant say that I speak for all parents. Everyone journey is as unique as the child they raise but these are my thoughts on the question and maybe it will reassure someone else in the same way that I know it helped my follower.

My answer

Life has been challenging for Harry and I right from the beginning. Together we have travelled unfamiliar terrain and had to navigate our way through a few twists and turns on what’s an otherwise straightforward path for many others.

He has been so incredibly brave to endure all he has gone through and come out smiling. Every operation for him brings another wrinkle and grey hair for me as I watch helplessly on. There have been days when I have cried for him, worried about him, fought for his rights. He may not be able to discuss it with me but I know he sees and hears it all and that’s so hard. I hope he always know I am in his corner and there is nothing that I wouldn’t do to protect him and ensure that he has the life he deserves. I hope he always know that no matter how tired I am, I will never stop getting back up for him. He gives me a purpose in life but I’m not going to lie and say that it’s always easy.

If I could go back to the time when Harry was still an unnamed squatter in my uterus and be given the option to avoid all that we have been through since his arrival; all the sleepless nights, pain and stress, I can say, hand on heart that I wouldn’t have changed a thing.

You see, once you have children they become this incredible extension of yourself. Their successes are your joy, their challenges are your pain. In honesty, there have been times when I have dearly wished that Harry’s autism would allow him to talk to me particularly when he is unwell or in pain. The days when Oliver is upset that he doesn’t have the relationship that some of his friends have with their siblings have been hard too. But I never wish a different life for myself. The challenges are bloody hard at times but I never feel anything but privileged to be Harrys Mum and I know for a fact that I wouldn’t be the person I am without him. He has changed me profoundly and I love him for that.

Harry loves a kiss

Of course, If I could take away all the pain and trauma that he has experienced over the years then I would do it in a heart beat. I would gladly have it in his place but to go back in time and change the rollercoaster ride of life we have screamed and cheered through together would mean I had a boy who wasn’t him now or a life with a Harry shaped hole in it. I cant imagine anything worse.

I can’t speak for other mother’s but I’m sure they would say something similar; that they would take all the pain and trauma away for their child’s sake but that they love them for the incredible person they are and the mother they made in them.

No life is easy and raising any child is the hardest job in the world but the rewards are incredible. And on the days that are tough, theres always gin and cheese to get me through!

Chat soon

Charlie xxx

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! 

If you enjoyed reading this blog you may also enjoy reading these…

Do I wish I had known about my baby’s facial disfigurement? 

5 reasons why my neuro-typical son is the hero of our story