It has been a while since I sat down and wrote a blog post. The Butterfly Room has become increasingly busy, and between this and my work within the NHS , I have not really thought about it. Of course life just simply gets in the way sometimes.
The main reason I am writing this post now is because , ironically, tonight I am killing time. My youngest, Noah is going through an intense separation anxiety phase and has also stopped sleeping, mainly through to being without his sleep meds for almost a month..however tonight we attempting to give them to him , and low and behold - he now won't take them.
Noah has begun to refuse food, drink and meds through fear of being sick. I'm not worried regarding food and drink - mainly because I know he won't starve himself. But the meds...I had high hopes for a night sleep after a month of surviving on 3-4 hours. The seperation anxiety means that if he wakes and I am not there he has intense panic attacks and meltdowns lasting for hours through the night; so I have been sleeping on his floor for the past 3 weeks. My back aches and stings daily now. I recently turned 30 and my husband suprised me with a trip to NYC and this week I realised that its a pipe dream to consider Noah managing me being away from him for 5 days ..so we cancelled the trip. So I needed a good nights sleep to bounce back.
And then this evening...I had been in bed all of half an hour when Noah woke just before midnight and I realised that I was in for another sleepless night I had another realisation. My eldest son will be having his first day of Christmas holidays tomorrow. He will be excited and he will be restless. But - I will be tired. I will be exhausted. As will Noah. So where does this leave me?
Without meaning too I began to compile and realise all the things that I have sacrificed since I started on this journey as an Autism mother and then with it, things I learnt to combat these or the little things that make it worth it. And then, I thought I would share it with you...
So now as I write this , its just turned 1.30am and Noah is happily watching Bing Bunny whilst the Christmas tree lights twinkle and he is at peace, He is cuddled into me, and has told me he is smiling because he is happy (he is a therapist's son after all so we practice lots of emotion recognition!) and that makes all of the above worth it. Knowing that I, and I alone am his anchor , in turn gives me peace. We're a team Noah and I. As we drove to the hospital today to pick up his medication I played Christmas songs loudly and sang along, Joshua and I did some great duets and talked about what Joshua is excited for, which made Joshua happy. Tomorrow it is my day off , as I am on annual leave from NHS for Christmas...so I will drink red bull , I have arrangements to collect Christmas treats from a local bakery, I will make gingerbread houses with Joshua like I promised and put Christmas lights around our front door because it will make the kids smile. And that's worth it. And that makes me happy. I will take time when my husband gets home to lock myself in the bathroom and have a hot bath and watch Netflix for an hour. I may take the time, when the kids are sitting quietly to call a friend and talk about our weeks for 20 minutes. I may even look into getting someone to treat my back pain.
We loose a lot of ourselves as SEN parents, as working parents, as parents in general. But its important to ensure that your doing little things to make it work. To balance the scale. So that we can still find the peace and happiness in the little things.