My Dearest Harry,
When I was carrying you and your Brother, I never imagined the life we live now; a life full of words like ‘craniofacial syndrome’ or ‘autism’ or ‘respite’ that I never expected to use.
I have made no secret of my struggle to cope with our new reality once I found out about your conditions but please know that the issue was always my own and never with you and your beautiful face and wonderful heart. I grieved for a life I thought you had lost, for the mum I would never be. Now, I know that we were never meant for those things anyway and that the life we have, and the Mum I am is exactly what we both needed all along.
My path through Our Altered Life has been an emotional one at times and always at times of transition I have regressed back to that place of shame, guilt and loss.
As infants, you and Oliver attended the same nursery and I loved dropping you off and collecting you together. Then I was faced with the reality that while Oliver would attend mainstream school with the other toddlers you had both spent time with, you would be educated in a special school; transported half an hour away on the ‘special bus’ that I had laughed at with my friends as a naive child myself. A tiny little person in a big world without his twin or his Mum. It broke my heart and I had to come to terms with the fact that what was the very best decision for you was a sad reality for me. My twins had been separated and I had agreed to it. I felt like I had failed you, let you down somehow. Now, I know that I was so wrong to believe this and that even if I could choose now, I would want you to be in the school you currently attend where you are adored and supported in ways I could never have imagined.
So we have bumbled along this merry path of life for years. Oliver living his life at High School, you living and loving yours at Special School. I know that different schools are only the start of your very different lives. I know that Oliver wants desperately to travel and see the world. I know that this isn’t a realistic dream for you but that you will find happiness in our part of the world we are creating for you. I know that you won’t live with me forever. We have had the house extended so you have your own bedroom and wet room for a future when carers will need to come into the house and help me care for you. I don’t want you to live in assisted accommodation before you are ready. And when you are, I know I will regress again and I will grieve for the Harry shaped hole in my home and my life. Sleepless nights are torture but sleeping without you here will take some getting used to and make my heart hurt. I feel a premonition of the pain when I even think about it yet I am slowly getting prepared and I expected this to be the next transition point in our life. I never considered respite.
For so long, respite to me has meant admitting that I cant cope with you, that you are a burden to me. That nights of full sleep mean more to me than having you in your own home. Respite to me has felt like the enemy. And yet now I am considering it..and I am sorry. But not for the reasons you may think.
While it is true that a part of me feels duty bound to be the one with you every day and night, during the rough and the calm of a very unpredictable life, I am sorry that I haven’t thought about ensuring that you have a mum who is well rested and not snappy or weepy in the middle of a very long night. You see, your happiness means more to me than my health and now, that is catching up with me. Its not your fault, not at all. Don’t ever think I blame you for even a moment of a life being your mum. But I am tired and you need a mum who can give you the very best of herself. I never thought that it was equally hard on you to have me being a miserable cow at times! I also never thought, until a teacher at your school mentioned it today, that had you not had your autism, you would by now be out at sleep overs and parties with friends and that the connections you make and experiences you can have at respite with people who are fully charged and prepared for a nocturnal circus, may replace those things. The fun and the friends you deserve. I never thought of what I may be depriving you of, only what I couldn’t bring myself to lose so I am sorry.
You should know that considering respite is the hardest thing I have had to do in years and getting to this point has made my head and my heart ache. I adore the very bones of you my boy and you are the blood and life in my veins. I hope that on some level you know that this is something I am doing with your very best interests at heart and that without some sleep, your Mum won’t be the suitcase you have come to adore and rely on. So the ball is rolling. I have agreed to look into the options for you to have some time away from me, to spread your wings and begin to get used to being cared for by someone other than me. After all, thats another reality we will have to face one day (not today though hey, Im still crying about this decision!) And yes, I have regressed to that place of sadness and guilt but if being your mum has taught me anything its that it always works out fine in the end and that we love each other no matter what.
I know that in years to come I will look back and wonder why on earth I never considered respite before but for now I am sorry that its even an option for us in a life I never expected and I am sorry that I have waited so long to introduce you to a chapter of your life that may help you in so many ways. I really do hope so but as always, I am here. You are my sunshine and I am your suitcase. Time or distance will never change that.
Love Always, Your Mum 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 this blog you may also like to read…
Dear Harry, when the time comes, it’s ok to forget me.
I love you to bits. You are one remarkable lady.
Ah you’re too kind xx
You are a wonderful mom and always put your needs aside. I know it’s a very difficult decision but it seems it will be a good experience for Harry. I’m sending you big hugs as you go through this difficult decision. 💕
Thank you Gina Cx
Respite will do you both so much good I know it’s hard and you’ll feel awful for doing so but your doing the best for him and yourself! I work with the most amazing autistic adults as part of resources for autism we do respite but not over night but clubs and weekend clubs and over the holidays! It’s a small time parents get a break! He’ll love it :)!
Thanks Dani. I am sure youre right 🙂 Cx
You are a wonderful and dedicated mom and you need some rest for yourself and the rest of the family. Harry will be with people who are trained and knowledgable with Harry’s condition, it’s not that you don’t love him with all your heart if you make the decision for respite it is because love him.
Yes Doris, because I love him so much, you’re right. Cx
My heart, love and prayers are with you! I know this is an extremely difficult decision but best for you both… ❤️🙏🏻🙏🏻🙏🏻❤️
Thanks Judith. Its a long road but we are on our way Cx
You know charlie that a tired mum of any child is not a happy one .think of it as a sleepover he’s at his friends .I am a tired mum but I don’t have the complications of a child that has different needs .be happy you have 2 wonderful boys a loving partner and even a loving ex partner who would do anything for his boys
Thank you Karen x
There is no doubt in my mind that you haven’t considered respite before, it is simply because it just wasn’t the right time for you, or for Harry. And now it is. We all absolutely feel real pain when we have to let our children go, although we have spent years preparing them to do just that, although without the realisations always that we have been doing it. We send them off to Scout camp, etc., and that is just what you would be doing in different circumstances. You are so right in doing what is best for Harry, and he will always come home to his precious suitcase, to a smiling, rested Mummy who will as ever welcome him into adoring arms. X
Thanks so much for your lovely words Sandra! Cx
I think you are an awesome mom and you make all your decisions by always putting Harry first. If he was like Oliver, he would leave your home to travel, work, get married etc and you would never think you’re a bad mom for letting him go, so in letting Harry move away several days a week makes you no less the great mom you have always been.
Thanks so much Cynthia Cx
I’ve been following you for a while. I live in the US but I’m British. I have so enjoyed your posts, your ups and downs, your sense of humor and your utter love and devotion for your son. Everything will be alright. Take care of yourself you are the only person who can. With lots of love and hugs.
Thanks Cathy. I love your line “youre the only one that can”. That touched something within me x
This was Beautiful and I know done with a heavy heart! Thank you ..You & Harry❤️I love seeing what I call “Your Adventures”. I take care of a young boy who when I started was 7 now is 16! He has autism & other issues. I love him like my own sons and always try to teach others who show hatred towards him. I am excited to buy your book & read it! Looking forward to the next chapter of Harry ‘s life. He is a Beautiful young man .. glad you are so proud of him. As you should be❤️❤️❤️
Thanks Tanya. That gives me hope for the kind of consideration and affection I hope Harry will find with his respite caregivers 🙂 Cx
Letting our kids go, whether it’s on their first sleepover, a day out with mates, to uni or to respite, is always hard. It’s our instinct to keep them close, with that invisible umbilical cord we always retain not stretched too far. But we need to let them go into the world, that’s our job, because we won’t always be here for them, such is life. My kids are adults now but I still remember the stomach churning fear and the worry until they were home safe again.
New experiences strengthen our children, broadens their world and brings new ppl into their life. You’re a great mum, we all are, we do our best and hope for the best. Bless you all
You are so right Debra! Thanks for your comment Cx
I’ve just stumbled across this now & have no idea where you’re up to with Harry’s respite journey, but it is 100% the best thing I have ever done for Sam. His respite carer is like the grandma he never had. Her husband is the grandad he was deprived of, too. Sam loves going to their house for sleepovers, his eyes light up when he sees them, and they adore him equally. I’m crossing everything Harry finds respite carers as wonderful as Sam’s xx
Ah this is wonderful. I hope for all of our sakes that Harry has a similar wonderful experience! Cx