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
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