Tuesday, 4 March 2014
Well, these last few weeks in the Jonty household have been interesting . It's been a time of 'firsts'. Trying new things are fab! I love it that FD pushes herself, despite her fears, to get something done. Yes of course we have the 'pre-first meltdown' and then we have the 'post-first meltdown' and then I drink wine! All in that order! We are very predictable!
So, just what has FD been getting up to that has had me reaching for the wine bottle more in celebration than in an 'oh God beam me up Scotty' way? Gosh, there is so much to tell you I don't know where to begin so I'll do it in separate blog posts! (Sneaky plan to keep you coming back for more!)
Well, a few months ago we learned that FD would need braces on her teeth. We did not relish this prospect because given that FD has some sensory issues, we knew that having the brace fitted would be difficult for her. That, combined with the fact that she suffers from regular and severe mouth ulcers would further complicate how she would cope. Of course, we still had to get over the huge hurdle of her actually lying on the dentists chair long enough to get the thing fitted in the first place.
So, the day of her appointment it was with some apprehension that we arrived at the orthodontist. However, once in the chair, FD was given the option, by the dentist, to have me wait outside in the waiting room. I nearly had a heart-attack. But, obviously the woman knew what she was doing. She had enough faith in FD's ability to cope that I realised that I had to have enough faith in her ability to read the situation correctly. To my shock and delight FD ordered me out of the room! So, for the next 30 minutes I sat in the waiting room. I tried to read my book. I couldn't concentrate. I tried to read the newspaper. I felt sick. I asked the receptionist to switch off the radio so I could hear if FD was getting distressed. Finally, I was called into the dentists room. And what sight was before me..............FD sitting up and smiling a big smile with a pink and purple sparkly brace on her bottom teeth!
Words cannot describe how proud and slightly overwhelmed I felt. FD was looking suitably smug. As was the dentist! Not only had my daughter undergone a procedure, albeit a minor one, but she had done it without me hovering over her worrying. What the experience has taught me is this............sometimes we just have to trust someone else to make a judgement call and shove us out of the room!! Quite often, as parents of our wonderfully special kids, we find it hard to let go. Hard to give them some ownership of a situation. Hard to let them grow up. But, in the wee dark recesses of our brains and our very fragile hearts, we know that we have to. It just hurts to have to!
So, how is my little superwoman doing? Well, she did find it very hard to adjust to the brace for the first few days. Her poor mouth hurt a lot and she got upset. She is taking all the instructions she was given about looking after the brace very seriously. It now takes us half an hour to brush her teeth every morning and every evening! We have to go back and get a brace fitted to her top teeth in a couple of weeks so I get to do this all over again! I'll be wearing my super strong superwoman knickers that day too!
Posted by JB JOHNSTON at Tuesday, March 04, 2014
Saturday, 8 February 2014
This week has been one that has left me feeling really exhausted both emotionally and physically. The travelling demands of my new job have left me drained. In 4 weeks I managed to clock up over 1000 miles. And, to top it all off, we've been told to expect more hospital visits for FD as she now has to have Iron infusions on a regular basis. So, feeling very low yesterday I decided not to go into work and 'worked from home.' In other words I went back to bed for a while. Cleaned the house, cried a fair bit and generally felt sorry for myself. After a good old cry which left me looking like a panda with conjunctivitis, I felt slightly more rejuvenated. Who knew that a day in the house, lounging around in ripped jeans and a baggy jumper could make one feel so great. What was even better was the fact that I knew FD was being collected from school and being taken to respite for the entire weekend. Oh the plans I had!
Like any parent who has the prospect of a child free weekend looming in front of them, I had quite ambitious plans which included lots of beautifying myself and consuming illegal amounts of wine! I'd initially thought I would have a fairly quiet weekend to help my body rest. But then I thought better of it and decided that it was going to be a weekend of much fun, wine, choc and sex! Wohoooo! There was no stopping me! The giant superwoman knickers were rolled into a ball and thrown into the corner of the room and the 'Oh wow' knickers were dusted off in preparation for a weekend of lurve! I even contemplated booking us into a nice hotel for the weekend!
And so, waking up at a leisurely 9.30am I opened my eyes and looked lovingly at my hubs. I tried to ignore his morning breath and he tried to ignore my bed hair and the giant zit growing on my chin. The morning was filled with such promise. And then it happened..............the phone rang. It was the respite unit. They were concerned that FD had had a seizure when she was in bed as she was disorientated, very pale and weepy. They let me speak to her on the phone and she sounded a bit confused but very adamant she did not want to come home. After another chat with her care worker it was agreed that they would keep a close eye on her and phone me if they continued to be concerned. 10 minutes later they phoned again to tell me that FD was crying for me. How could I enjoy my weekend knowing that my baby needed me. So, I pulled my jeans on over the top of my PJ's and, still wearing my pink fluffy slippers, I raced out the door. I wasn't even wearing socks. My hair wasn't brushed and I looked a mess. But, I needed to get to my little girl.
When I arrived at the unit, which is thankfully only a 5 minute drive away, FD threw her arms around me. She was pale and weepy. Once in the car she burst into tears. My heart broke. I am pleased to report however that after an afternoon of watching crappy movies on the TV and eating choc chip cookies FD is absolutely fine now. In fact, she has just devoured a pizza!
When we were first offered respite for FD we were convinced that it was just going to be one of those things that we wouldn't be relying on too much. It is only when it is taken away from you when you were so relying on it to recharge your emotional and physical batteries that you realise how much you needed it. Of course its not FD's fault that we didn't get to have our weekend of 'partying' or to have some good one to one time. But, if I am honest, there is a small part of me that wants to cry. A small part of me that wants some time away from a poorly child. Some time away from a child who relies on me so much and gets every last ounce of energy from me. And, with those feelings comes such guilt that it almost floors me. Guilt that I am being selfish. Guilt that I am feeling resentful. Guilt that I had wanted to dance about my bedroom naked and eat chocolate out of my husbands navel! (I'm kidding).!!!!!! Honest. Well...............................
Anyway, I suppose what I am trying to say is that parents of special needs children suffer disappointment more than other parents. The opportunities to have some time alone as a couple are rare. The chances of even the best laid plans coming undone are pretty high. But, this is what our life is. This is us. So, I will put my Superwoman knickers back on. I will pack away my 'oh wow' knickers for another day and I will give my daughter the biggest hug ever. And, eventually, I will stop feeling sorry for myself and think of other ways to eat my chocolate!
Posted by JB JOHNSTON at Saturday, February 08, 2014