This is a difficult post to write as it is about me, and I’m scared.
Today, I was in the shower and I cried. This is not a sympathy post, the last thing I need is sympathy unless you want me blubbering all over you. My family and friends may well find this difficult to read and, for that, I apologise. The purpose of this is to let all the special needs families out there know that it is OK to be scared. Being scared does not define us. What defines us is what we do despite being scared.
When I turned 30, I had a crisis. I went and got my first tattoo and I had my tummy button pierced. When I turned 40, I had another crisis and I went and got another tattoo. Why am I telling you this? Because I am approaching 50 and I’m scared. I’m not scared about what I am going to do, obviously I’m going to get another tattoo – it’s what I do. Don’t judge me, we all have our quirks. I’m scared because, as I get older, I can’t help wondering what is going to happen to my son.
We are a year down the line following diagnosis and I feel like we are going backwards. He is still out of school. Access to Education (A2E) were sending in a tutor and she was great. Unfortunately, his mental state meant that rather than moving forwards, we were moving backwards. We now have a mentor coming in and, as yet, she hasn’t been able to have a face to face conversation with him. Her job is to work on his emotional and mental health and they have only managed a conversation via text. She informs me that this isn’t unusual but I can’t help wondering, what is going to happen.
I feel like my life is on hold. I can’t work because I can’t go out without him. He finds it virtually impossible to not be with me. I need to make a doctors appointment but I can’t take him with me. Our surgery isn’t very helpful and my husband works shifts so, finding a convenient time, isn’t easy and, when you are dealing with an unhelpful doctors surgery, it’s just easier to forget about myself. It’s just what us mothers do. We put the needs of our kids first.
If I think about myself, I feel guilty. I know that’s stupid, but, that’s just the way it is.
What do I do to try and remain calm? I take antidepressants and I buy stickers and washi tape for my planner. I’m hoping that my wonderful husband will laugh at that, I know that he doesn’t get it but, he does understand that it helps and, for him, that’s all that matters.
I also sit here and take funny photos……
All the time that I do these things, I know that I’m ok. I know that I’m still me and that I’m still here fighting for my son and my family.
What does the future hold? Now isn’t that the million dollar question. I know, without a shadow of a doubt, that it will hold many more days during which I will feel scared. But, you know what? That’s ok.
I will use my planner. I will use my stickers and my washi tape and I will keep on fighting.
To all the special needs parents out there, you are all completely amazing. Don’t you ever let anyone tell you otherwise. Together we are all strong and we will keep on fighting.
If this post has struck a chord, for whatever reason, let me know. Meanwhile, I will continue to feed my washi tape addiction.
Love to you all.