Why Rufus’s diagnosis wasn’t the end of the world for us
Rufus’s diagnosis wasn’t the end of the world for us. It was the end of one world but it was the beginning of a new one. Don’t get me wrong, we cried, we grieved, I took time off work and didn’t actually go back, we isolated ourselves, felt angry and it took a long time before we could admit to ourselves and the world that this was the new ‘normal’ and that Angelman Syndrome wasn’t going away any time soon. But what we didn’t do is stay in that place of sadness.
Rufus three days after he was diagnosed with Angelman Syndrome, still the same boy as he was three days beforehand.
Becoming a special needs mum wasn’t something I ever saw coming and I wasn’t prepared for it at all. Yes it caught me off guard, tripped me up and left me face down on the floor for a while but then I got up. I was determined to make the best of what I had been given and I knew that, although this was so far from the mum life that I had envisaged, I was still Rufus’s mum and I could draw on the capacity and ability to do the job from somewhere deep in my bones because I loved him. My love for him was exactly the same as it was the day before he was diagnosed with Angelman Syndrome.
Rufus at two days old.
I guess this is where my faith comes in. Let’s start from here (and I know this is where we may differ but hear me out): I believe God is good. I don’t believe he purposefully does bad things or makes bad things. I believe that God made Rufus and didn’t make a mistake when he was on the chromosome bit. He wasn’t distracted or tired. He allowed Rufus to grow in my womb with a missing section of his 15th chromosome and knew exactly what he was doing. No mistakes. No errors. This is what I believe. God is good and Rufus is not a mistake. Rufus was chosen to grow inside me and I was chosen to be his mum.
A lot of people like to use the phrase ‘God only gives special children to special parents’ or something along those lines. I think they say it because they don’t know what else to say but I absolutely don’t buy it. My distaste for that phrase is one of the main reasons that this website is called The Unspecial Mum because there was nothing special about me before Rufus came along. Sorry to say, but there was nothing particularly special about you either. You are no more special than the next parent. We’re all amazing and we’re all absolutely average. Children with special needs are born to all sorts of different parents. Some do incredible stuff for them, spend thousands of pounds on private therapy and devote their entire lives to finding a cure for them. Some simply cannot cope with the weight of it all and give up or give them up. Most are just somewhere in the middle, getting through each day and trying to do the best they can with what they’ve got.
I believe that God is able to give me every single resource I need to be the best mum I can be for Rufus. By drawing on his resources - his love, patience, kindness, rest, energy, wisdom, grace, resilience, joy, peace... I can do this. His resources are so deep in my bones and my soul that even on the weariest of days I can still be Rufus’s mum. His love for Rufus and his love for average old me fuels the fire in my belly that keeps me going, that keeps me getting up in the morning and doing it all over again. Not only do I believe that he is good and that he was well impressed with Rufus when he made him but I also believe he has great plans for Rufus’s future and for our future as a family. I don’t believe he’s abandoned us and left us to get on with it by ourselves. I believe he’s in it for the long run, sticking around, cheering us on when we do well and helping us get out of a pickle when things are hard.
If this is where you switch off and leave me on my merry way because you don’t buy it, fair enough, you do you but I honestly don’t know where I would be without my faith. I know for sure that my personal bank of resources would have dried up on about week two of his diagnosis and I would’ve found myself in a slump, feeling resentful and bitter. I’m not saying it’s easy. My goodness it is still really hard work every single day but I know I am not alone and I am raising him in partnership with an incredible husband and and even more incredible God who is with me all the way, with Rufus all the way and always will be.