A Little bit of Madness.

I was asked not so long ago why had I suddenly started blogging – what was it’s purpose and to what end? Like in everything I do I began to think about the question and then think some more. As my intro page states; it is my hope that perhaps other families who are faced with what we were faced with, would be able to relate and find encouragement in my words and experiences. I remember twenty one years ago yearning, at times, for someone or something to come alongside and reassure me it was ok to feel the way I was feeling.

When we finally got Beth home I went into complete overdrive. I was her mum so my sole purpose was to ensure all her needs were met over and beyond anyone’s expectations; those not only of my family but also the entire medical profession. I have come to realise now many years later that the only person I was trying to prove a point to was – Myself.

It seemed our lives and that of Beth’s had become an endless stream of appointments, meetings, medical tests but never a diagnosis. I independently carried out the intensive physiotherapy programme at home with Beth, I monitored feeds 24 hours a day. I spent hours studying her to see if I could reveal some sort of sign, that would shed some light on what was wrong.

So I can remember one morning, Beth was back in hospital due to breathing difficulties. We had only just got her home for a few weeks and my husband and I were once again doing hospital shifts, whilst juggling work and family life. I was leaving Beth’s sisters to school and nursery and as I was standing at the school gate I observed how all the other yummy mummies were leaving their children into the Primary 1 class, the majority of which were avoiding making eye contact with me. No-one knew what to say but they gave me a smile that I interpreted as, oh I heard something was wrong – I don’t know what to say – I am so sorry, thank God it isn’t me in that situation. I know their smiles came from a place of love but I honestly could not bear their pitying expressions.

So what did I do? I came home and went to bed. I climbed in under the duvet and told myself: that’s it, I am opting out, I am not getting up. I didn’t feel anger or sadness, I just felt absolutely nothingness, I wasn’t even interested in praying. In my heading I was telling myself I wasn’t equipped for what life had handed us. My life was ordered?: I had two beautiful girls, a loving and hard working husband, a great Mum and dad, my life was sorted. Now everyone that knows me and knows me well will most likely say that I am a realistic, practical, “tell it as it is” individual. I face problems head on, I do not bury my head in the sand, I see a thing through to the end regardless of the outcome. So this behaviour was totally out of character but I didn’t care. As I lay in bed it suddenly came into my head: well you can lie here forever but life is still going to go on around you, whether you want it to or not. The sun will still rise and set. Beth will still be your Beth, so you have a choice – do what you do best by getting on with it, or, hide from it. So I got up!

Was I going mad? Probably. But then maybe there is a little bit of madness in all of us.

My family eventually managed to sit me down and suggest that it was time to share and let us help with the physio, the feeding and the worrying. You can’t do it all on your own, as a Mum you have nothing to prove to us. Open up and let other people help. So I did!

I look back now and realise with such clarity that to accept support and allow those, who love you, to help, is not an admission of failure, it is an acknowledgement of solidarity and hope. So for all the mums out there and not just mums of special needs; Don’t do it alone, let your barriers down and allow those who love you to help you.