This morning I cried. This morning I put my head in my hand, and let the tears fall.
I’m not grieving.
I haven’t been seriously hurt.
I don’t feel unloved.
Or any other obvious reasons to weap.
I cried because I’m tired.
No not just tired, it’s way beyond that.
My body is screaming at me.
I feel like my body is shutting down bit by bit.
Tiredness so severe it hurts.
I’m 10 years into this life, as a parent to a disabled child.
I’m 2 weeks into the summer holidays. And my body is failing me.
Imagine running for hours and hours every day of your life, even when you need to stop because your legs are weak, but you can’t.
You do it day after day, year after year.
Then a period of time comes (7 weeks long ) when you have to run 20 hours a day on your already weak leg’s , you push and push because you can’t afford to stop.
Being a parent to a disabled child is running from eyes open to eyes closed, and some in between.
We can’t just ” get a good night sleep and feel better in the morning ”
We can’t have a pj and movie day to rest.We can only push and push. ‘ come on body, we can do this ‘ I cry.
I saw this on Facebook just an insight to special needs mums lives.
Well I don’t know how I’ve done it but we are more then half way through the holidays and I’ve survived on my own for 4 weeks. Now my husband has some time off he can take over a little and I can relax a little bit. I have a review on Tuesday with my support worker and I have a girly day planned with V. Looking forward to it as my hubby is having the boys while I go to lunch.
My counselling session on Tuesday was emotional and draining but talking about difficult things it’s expected to make me feel like that. I got through it and I was able to feel a bit better Wednesday with a busy day with the kids. I’ve been referred for other counselling but it’s not in my home town. It’s a bit further away and I’d have to travel by train to get there and I’ve looked into child minders for my boys. To be honest it’s always in the back of mind, how will I afford the childcare? Who will I find to look after the boys? How will I tell my husband that I need to find someone to look after them and explain why I’m going out of town to see someone. He might think I’m bloody having an affair. I can’t talk to him he’s not the most understanding he turns thing back round to being about him.
I guess my biggest worries about the new counselling is starting all over again with someone different, travelling alone, going to the session alone, coming out alone and travelling home alone. I’ve done all the previous sessions with support I don’t know how I’ll do it alone. Something I’m going to have to find out I guess.
I don’t know what people see that I don’t, I tell people I’m struggling, I tell people I’m not coping and they tell me I’m doing fine and I’m doing great. What can they see that I can’t? I suriving the last 4 weeks but barely and relying on other people for help and support. That to me isn’t doing great. Maybe I’m too hard on myself?
I decided after my counselling on tuesday that I would create a mood book. Not just writing things down but drawings, quotes, song lyrics things, person I want to be and the person I am now. It’s something I can create that can be positive and show what obstacles I’ve got to overcome. Every sketch has a meaning and although they aren’t brilliant I think they look ok. Just a few of the drawings I’ve done for my book.
I have a meeting at school for my 5 year old on Friday with his school teacher, SENCO, my support worker and key worker from the county council. I’m nervous and anxious it’s the first meeting with everyone in the same room as each other. I’ve spoken about these people to each of the people going but they are all going to be there on Friday. I’ve asked my son about things that worry him at home and school. But my main concern is looking completely stupid in front of all these people and breaking down in tears when I go through my concerns.
I’m ashamed of these people knowing I have depression and anxiety. I only have depression and anxiety because I’ve been through hell since April last year. I need these people to know that it’s not just because I had a baby and now I’m depressed. I had a heart baby and he had surgery to fix his tiny little heart. I don’t want them judging me thinking I’m a terrible mother. I also don’t want them to see me cry if I can’t handle it. I need them not to see me vulnerable I can’t cope with it. I’m so afraid of them thinking badly of me. I need them to see its been hard work but I deal with it the best to my ability. I put on this facade like I’m coping brilliantly like I did this time last year before the referral to the support charity I’m with now.
I’m sat with my sleeping baby next to me crying over the anxiety of this meeting. Wondering who I can talk to to ease my mind. Do I call a friend or just deal with it alone? Do I call my support worker tomorrow to go through it or do I cope alone? What do I do? I don’t know but I’m hoping someone does.