Tuesday 29 December 2015

Turning 12.....

Immi turns 12 tomorrow. Yesterday she spend the whole afternoon playing with a 3 year old on her level. Not lowering herself to her level you understand, she just is at that level. Today she drove me mad in Sainsbury's running off.  Not sticking with me. Not listening. Not following instructions....toddler behaviour, even down to the tantrum when she couldn't have her way. 
But tomorrow she turns 12. 

If truth be told, there is joy in her turning 12. I love my daughter and the beautiful young woman that she is turning into, but there are other emotions running high in me too. 
Grieving: grieving for the growing up that she may never do.  To look from outside, at the age of 12 I guess I was expecting girly shopping trips just before Christmas, the odd ice skating trip, films as a family... But so many of these things will never happen.  Trips into shopping centres are meticulously planned and very short and sharp.  Ice skating, epilepsy and hemiplegia don't really mix, so that one is out.....when she was smaller we did manage it once with the little sit and push alongs they had,but she is a bit big for that now! And films as a family are getting more rare as Jed's tastes grow up but Immi's stay at very much cartoon, slapstick stage. In fact as our children grow the expectation is for life to get easier, but in reality for those with children with special needs often the opposite is true. No longer do the children get away with "odd" behaviour by being cute, they aren't anymore. The gap between siblings grows as do interests, but there is still a residue of sibling rivalry; the "it's not fair" brigade. Throw a little bit of puberty hormones in the mix, along with still have to pack a changing bag, deal with behaviour expected in a two year old and it is easy to wonder if the toddler years will ever end.  And maybe they won't.  Which leads me into my second emotion; fear. 
Fear, as I've just mentioned that the toddler years will never end. That perpetual feeling as a parent of constantly being on high alert for breakages to either self or property, of behaviour that needs correcting, of ensuring we have everything we need.  As a parent of a toddler I knew (or I thought I did) that this point in time was hard, but I needed to keep on top, be determined and consistent, especially in instilling manners and politeness. I knew it was only for a couple of years and then they grow and we are into the next stage. And with one child this was true, but with the other, I am still there, daily trying to instil that politeness, reminding to look both ways before crossing the road, to not pick your nose, to sit like a "grown up girl", to share and play nicely because he/she is "much smaller than you" etc etc. I'm tired. Parenting a toddler is tiring, ask any parent and after 10 years of it I'm tired. I want her to be 12. I want her together dressed herself, to brush her hair and choose clothes to wear, to clean her teeth (I don't even mind reminding her I'm not expecting miracles, just to not have to fight over it every single day), to know who her friends are, to be able to lay the table when asked, to walk the 100metres to school with her friends instead of her parent. And those are the present things I grieve, let alone the future.....
But they are fears based on my own well being, my fears for her are bigger and far reaching.  I fear for her vulnerability, that somewhere along the line there won't be a parent or TA watching out for her and someone will take advantage of her innocent, naivety.  My strange, beautiful and poignant something year old in a 12 year old body. The mismatch between internal and external is scary because it has so many expectations that go along with the external. We make so many judgements and assumptions the minute we lay eyes on someone. We all do it, it is how our culture works, and most of the time we need them to read the subtle social cues we all use. But Immi smashes through all those cultural assumptions. She cannot help it, her body tells the world, "I'm 12, I'm beautiful, I'm happy, I'm nearly a teenager". Her life declares, "I'm 12, but I cannot see your point of view. I cannot keep up. I need your protection. I need your help, but sometimes equally I don't want your help because despite my body letting me down with seizures and hemiplegia I am one strong willed independent miss!"
So in just a few hours I will celebrate with my daughter all that it means for her to become 12. With her two friends, that the TA helped chose, coming to her movie party, we will rejoice and celebrate all that is Immi. For despite my fears and worries, I believe there is a reason and a value to her life that is far greater than the sum of her parts. For she is teaching me that what we do does not give us worth, it is that we are.




Sunday 15 March 2015

Happy Mother's Day....What might have been.

It is Sunday morning. It is Mother's Day. My husband and son have already left for church and we need to get ready and leave. Everything is going well, then suddenly, like a switch being flipped, everything changes. The peace of the morning shatters and the illusion of the perfect family vanishes.   
It is teeth cleaning time! No more "I love you Mummy! Are you enjoying your special day Mummy?" 
Suddenly she becomes the master of avoidance. Time is ticking away and I see myself missing a third week of church in a row. I feel the pressure, not because I think God would mind (I'm certain he is cheering me on in this), but that I am one of the leaders and I feel the pressure that others will wonder if I have left or if I'm avoiding the place!
The more I try to cajole, bribe, give choices (teeth or shoes first?), yell or beg, the more the heals go in, and we get to a point where she is sat on the floor refusing to move. 
This is like most days, and most days I am ok with it. 
But today isn't most days. Today is Mothers Day. Today is the day we are celebrated and the mothers of us look at our children and give thanks. 
Suddenly it hits me. 
It wasn't supposed to be like this. 
Call me naive, but I thought by 11years old both of my children would be dressing themselves, getting me breakfast on Mother's Day, we would go for a walk together, swim or play a board game together, enjoying each other's company. But we don't. We can't. We don't manage things together - it is a good day if she eats at the same time as the rest of us!

And I go downstairs, call my husband and explain we may not make it, and cry. Cry out what might have been, the friendships she might have had, the country we might still be in, the life we might have been leading.
But then it hits me....what might have been.  When her stroke hit, it could have killed her. The area that the damage is in is a very dense area and the doctors likened it to a bomb going off in a city rather than the countryside; the devastation is much greater. She may not be with us. 
I may not have the exasperating mimes and clue giving that she puts us through to give us an answer when we ask a simple question. We may not have the laughing like a drain at some comment in a film. We may not have the refusal to buy a Mother's Day card because she already made the best one I could possibly get! We may not have the off key rendition of "Let it go" or the hug that threatens to knock you off your feet. 
I am so blessed. How dare I look at my life and think "what if..." We have so much in this world and in this country. We only have to look at the news without our desensitised eyes to realise how blessed we are. Earthquake, hurricane, ethnic cleansing, bombings, beheadings, Ebola, war, displaced people, so much sadness. 
So, if I'm late...I'm late. Sorry church, sorry school, sorry world, but sometimes I just have to go at Immi pace and remember my blessings.