An Open Letter to My Family
Firstly I'd like to thank you for your patience, your kindness and your help. All four of you try to make life easier for me, and it's sad that this has become the norm in our house.
You'll pick items from the floor to save me bending, you're always willing to climb the stairs to get me something, and you understand why, everyday, I spend a full hour in the bath. It's appreciated. It really is but it shouldn't have to be like this.
I'd like to apologise. I want to say sorry for the NHS who can't seem to cure me. I want to say sorry for all the things I can't do because I'm poorly. I want to say sorry that there's a high probability you may grow up without me and I want to say sorry that I'm sometimes fuzzy when I take my pain relief.
I'm stuck between a rock and a hard place and find myself worrying everyday. I know the disease is hurting me, but I worry the medicine hurts me more. I don't want you to have a druggy for a wife or mum. I want to be clean, to be free, to enjoy every second of your wonderful lives without mind altering pain relief and it worries me that I'm missing out on this through the fog these drugs produce.
I want to give them up but I know if I do, I won't walk, I won't talk, you'll see me in agony and those daily tasks you enjoy with me, (those few things I can still do without a walking stick or crutches) will be no more.
I won't be able to bake, to swim, to garden, to walk. I won't be able to play in the bath, have water fights or paint murals on your walls. I won't be able to dress up, go to theme parks or play on the swings and I won't be able to do a lot of seemingly normal things. I'm sorry.
Last night my baby girl, my beautiful little cherub, looked at me with anger when I explained I couldn't bend to the floor to make my character talk. I explained I could play on the bed, without running around the room, but still you seemed so disappointed for having just half a mum. I usually try to hide this, and I'll battle through the pain as I bend and become a Disney character again. Last night I couldn't, it was just too much and my heart broke in half when you cried and gave me a pitying look. I let you down and I hate myself for that.
Tonight, I know, I'll take an extra dose, just so I don't let you down again. I used to be your superhero and I think, with enough tramadol, I can be again. I don't want you to see me weak, or as half a person, you're an amazing human being and you deserve an amazing mum.
My eldest son, you didn't complain, but you did sigh when I asked for your help with the shopping. I used to shield you from any housework and now you find yourself with chores as I do less and less. You have to make your own food occasionally, tidy your rooms, clean the kitchen and Dad will always ask you to "keep an eye on mum" in his absence in case I do something silly, like try to lift something that could cause more pain or ruptures. You're just 16, you have autism, you don't deserve it, you deserve a proper mum.
Do you remember just two years ago, you and I prepared the barns for the pigs? We cleared the garden together and made you a space for a little outdoor privacy. We'd go for hikes to find ancient ruins, just the two of us. Up and down hills, we'd giggle and run, and discuss history and politics, just as we should. Now we spend our time together playing minecraft or gaming. I love every second, as I don't care what we do, it's your company I need but I've noticed, as I've become less energetic, you've followed my lead.
My eldest daughter, with the most common name, I'm so sorry that our shopping trip was ruined by my pain. I took enough tablets but still my body refused to move until I'd eaten into our time alone, by delaying our shopping start. You coped so well but I saw disappointment, and I tried to pretend I was fine. Some days it's easy, I can fool you all but this one, particularly, was hard.
I hope I made up for it when we saw your crush and followed him into the shop. We caught his attention and giggled and laughed and thoughts of a substandard mum were gone.
Do you remember when we played netball together? When we walked for miles and you had wibbly bones because you couldn't walk anymore. Do you remember me helping out at school and being the active, fun, energetic mum? I do. My god, I really do love you all.
My husband, you've endured so much and your future looks bleak with me being screwed up. You spend your life putting me first and make way for an illness that doesn't play fair.
Intimacy has waned but you haven't complained you've just waited for good days to get jiggy again.
You've kept up the affection, the hugs and the kisses, knowing that you have just half a missus.
You've Googled and researched, you've taken time off. You've adapted your whole life and it's still not enough.
You want to fix me, to make it ok and you want to take the pain away.
Without you I'd falter, you're my strongest support, but it's not your battle that needs to be fought.
You need to live life, and enjoy your health, get out there and move, look after yourself. Your life isn't over, it's anything but and you should be living a life that is fun.
I'm sorry I snap when it gets too much or that I look at you with envy when you run.
You're my soulmate, my hero, my rock, my best friend, and you deserve better, not a premature end.
A life full of sickness, of doctors and worry is not what you signed for when we married.
I love you all so much that it physically hurts, that I'm putting you through this; it's really not fair.
While I try to leave memories, I write down my thoughts, I pass on the funeral plans and fill in note books, I scold myself, for being so morbid, but then in the next breath, I don't want to leave you wanting.
I want to be there, through all your triumphs, to wipe the tears and to plan my retirement. The realist kicks in and I realise with clarity that living like this is my chosen destiny.
It's not your fate though, you can still get out, you can travel the world and say bye to the guilt. I care for you, as much as I can but it's still not enough, I still drag you down.
A life half lived is no life at all, yet you've all made this sacrifice, you've given your all.
I'll keep trying for you, to look for a cure, I'll search high and low, and Google it all. In the meantime, I will, try my best to be normal, but if I disappear, please pretend I'm not broken. I'm just taking five minutes like all other mums, there is nothing wrong, there's no reason to come.
We can carry on playing, let's pretend, and maybe, just maybe, we'll see this through to the end.