As part of my ever growing mantra of trying to give my daughter as many opportunities as possible to lead a normal life and have as much of a normal childhood as she can I do at times feel anxiety, fear and tear’s. Its daft maybe to some people that I feel this way but having spent the nearly 11 years raising her, learning as only a mother can and also learning sometimes the hard way how to care for her additional needs I suppose I feel guilty that I am sometimes not the one that she will need or turn to. We are in a particularly stressful part of our lives at the minute what with the inevitable transition to high school (Blog to follow) and the fact that she is quickly turning from child to teenager, I sometimes wonder what the hell I am doing, am I doing things right and am I actually giving her the opportunities she needs or am I holding her back!!
What has started this train of thought….My daughter’s first Scout camp.
Now first things first this isn’t an ordinary case in any sense of the word. You see my husband is the scout leader and a part of me feels that if this wasn’t the case then I wouldn’t feel comfortable letting her do something that to others would seem mundane, a part of growing up. In fact I hate that I am not in control of her wellbeing. Instead of relaxing and feeling like I have a weekend to spend being me I feel worry and anxious even though she is with her Dad. Does anyone else feel like this?
I know that through choice I am my daughter’s main care giver. I attend all the appointments, make most of the decision’s, ensure she is cared for, has what she needs. I am not saying my Husband doesn’t do anything, he is there when I need him, to talk to, care, give a supporting hand, earning money to allow us to have nice thing’s and holiday’s but I do selfishly feel like it’s my job alone to do what needs to be done. I work tirelessly as many other mothers of disabled children do to give the best I can and to ensure that all my daughters with additional needs get the love and support they need to be the best that they can be. To the outside I can appear as an overbearing protective parent, but isn’t that what we are suppose to do regardless of wether we have disabled children or not?
I also very often feel the stigma of having a daughter with an invisible condition. I feel the ever present need to explain my daughters actions and prepare people. Its exhausting never mind the phone calls, meetings and appointments that go hand in hand with any disability. So you would think I would take this weekend to relax and take a step back but I can’t, here I am writing poring my feelings into this blog in the hopes that even just one of my thoughts or feelings helps another parent who may be feeling the same. Its my way of coping and even though some may feel I am airing my dirty Laundry I am not ashamed. I am not ashamed of my children or myself. I think of it as a way of helping my own mental health cause I can tell you that sometimes when theres no light at the end of the tunnel I could well feel like I am descending into a pit with no way out. My children are my light and I keep going to be the best parent I can be for them.
So my daughter is armed with medication, her Dad the scout leader and two of her sister’s who are fellow scouts and is of enjoying camp fires, late nights and amazing activities like kayaking. Her every need will be met but I will still worry until she is back here with me. Like I said I am daft….
x Leanne x