Peaks and troughs

Today has been one of those days.. Toby has had an ok day in terms of seizures but not as good as last week. I am blogging today because I don't feel particularly strong about life. Usually I have a good cry at the end of the day a hope that the next day I'm stronger. It's on days like these I don't turn to family or friends as I don't really know what it is I seek from them. The reality of my life usually triggers off thoughts of the future and that is what's been whirring round in my head today, sad thoughts, unanswerable questions and worry. When I see Toby physically he's not the boy Im familiar with the steroids although have stopped have left Toby so much bigger it's not a problem and I'm in no way ashamed or embarrassed by Toby I'm just somewhat frustrated as I've been to four or five shops to buy him some smart trousers to go to his cousins birthday. All of the trousers I'm buying are aged 2-3 and barely fit his thighs he cannot bend or climb and is even more inhibited than usual consequently affecting his development. That's a small thing you may think but added to other small things it builds up. I'm so physically tired as to keep toby Safe and help him get about I have to carry him by 4 o clock a journey up the stairs seems like climbing Everest with Toby on my hip, on days like these I wonder when he'll be able to do these things if ever? Is hypotonia going to stay with him because of his seizures in the past? I then wonder if so what will his future hold? So you see our daily lives aren't just controlled by seizures but by the missing blanks and uncertainty of basic future planning. Most days I'm happy to take each day, enjoy the good and cope with the bad but on days like today it feels impossible. It makes me sad, then I feel guilt for sometimes wanting to get off this bus ride at the next stop, that feeling doesn't come often but it does come, it doesn't last long but it's there. I usually have thoughts interrupted by Toby or Hallie and I realise that if I give up, if I fall apart then so will my whole family that cannot and will not happen, and in my heart I know I'll get through it even if my heads having a blip! So having shared these feelings I hope for those who feel similar I've helped. Let's see what tomorrow brings..... Xxx