April 21, 2020
Thomas graced this world with his presence on 19 September 1997. He was just a gorgeous bundle of love and joy, perfect in every sense.
18 years on, Thomas is still that bundle of love and joy with a smile that sweeps you off your feet and warms your heart and remains perfect in every way. Thomas is quite the flirt, so I often catch him eyeing up and down beautiful woman giving them that look and smile that just melts your heart. He just has a way, his way.
So why am I writing about disability?
Aged 9 and half months, life threw Thomas a life-threatening challenge called pneumococcal meningitis resulting in numerous issues for Thomas such as profound bilateral deafness, epilepsy and global developmental delay.
Likewise, this event threw me challenges and altered the direction of my life significantly. From being an accountant to now an author sharing my life experiences especially around Thomas’s and my lives. My dreams and aspirations were altered. Initially I wasn’t happy and accepting of the challenges we had to face. Once (note this took years) I came to a place of total acceptance for who he was, perfect in his way, I found a new level of peace and serenity in my life.
Indeed, I can’t imagine life without Thomas and all that he brings. My life with Thomas brings so much joy of priceless interactions and moments where nothing else exists to observing him whilst in hospital, him helplessness waiting for medication /surgery to assist him and me helplessness, fearful, angry, not knowing what to do other than be present for him.
I found huge support from parents especially mum’s who were in a similar situation…similar in that their children didn’t fit into any box or bell shaped curve…Those children who are different in behaviours’ and yet ultimately the same as any other child with their own “special needs” and wants. I am fortunate to have found these special mum’s wherever my life and travels have taken me. Sometimes I have been so motivated for the support, a few of us have set up and run the support group.
Along the past 18 years, Thomas and I have explored numerous therapies, some mainstream, some alternative and some totally off the “beaten track”. All of them have played their part in Thomas’s and my life whether I deem them successful or not…so very thankful for what the practitioners/therapists have shared, explored over these years. There are a few therapies Thomas and I continue with as part of our wellbeing maintenance programme. I find this so beneficial as I continue to navigate life’s challenges as they occur as they do continue.
Strength and self-confidence have been gained from my self-exploration into spirituality and the purpose of life. This exploration has satisfied my need to understand things and allows me now to rest peacefully in the knowing that all is meant to be and that everyone and every situation is perfect just the way it is.
I guess what I would like to share with other parents is to see the beauty of what is happening here and now as being perfect in the continuum of life. When you see the beauty of your child just in this moment, the striving to fix falls away. And if this isn’t the way you view life, trust that you are doing everything perfectly for you and your child. Know that you are not alone and don’t have to do it all alone. Ask for help. And if they can’t help, ask someone else. There will be someone who will be able to help.
Also having a supportive husband, partner, family and friends does make a huge difference too.