Having a disabled child does not mean you do not also share perfect days. I celebrate each day with my children no matter how hard situations become particularly as Callum’s needs grow and he has grown up fast into a beautiful 15 year old loving son and younger brother. I refuse to let the additional life challenges and barriers experienced through having disabled child bring me and my family down. We focus on our positive experiences and enjoy our precious family moments which are priceless memories shared. Perfect days and moments strengthen our hope and faith.
What is a perfect day? Recently we attended a family wedding yes a Big Indian Wedding and I was so relieved that Callum was well enough to attend. There have been many family occasions where Callum has not been well to attend as he has or is recovering from an episode of epileptic seizures.
On the Friday evening prior to the wedding day Callum’s hands and feet were clammy and we did not attend my nephew’s pre-wedding party.
I thought best to be cautious as I hoped he would be well for the following day of the Wedding. I looked at his new blue trousers and waistcoat with his stripped shirt and matching blue tie and hoped he would be well to attend and enjoy the celebrations with all the family as we have missed so many celebrations due to Callum being unwell.
Thankfully Callum was great on the morning of the wedding he was very excited and as our weddings are such long days we were going to join our extended family at the reception.
We planned to arrive earlier to settle Callum, in the new environment as he is visually impaired and needs to adjust to changes. Planning is crucial as is arriving early which gives me an opportunity to familiarise myself with disability access in the building. There were a few stairs and with both his brother and my support we were able to assist Callum. My highlight was the disabled toilets which were great as they were clean, spacious and practical.
My extended family were amazing as always, never judging us for missing occasions or family gatherings due to Callum being unwell or due to unpractical logistics. There are always the exchanging of lots of hugs and we are always made welcome as they accept and understand Callum’s additional needs and the way Callum expresses himself as he can be very vocal. I was delighted to see Callum enjoying the music he was going back and forth in his seat at the table to the beat of the music. With support from family Callum danced on the dance floor, sharing his dance moves. Callum does use a wheelchair however I continue to try to keep him as mobile as possible, he can walk short distances. I have to lead him by placing his left hand on my right arm helping him navigate his way around places. Callum is very aware of new spaces and places and is very cautious but always willing to explore. I find myself saying to Callum, ‘Trust me hon’ and he knows he is safe as he holds my arm and at times (when he needs more assurance) both my hands as I lead him to walk on different ground surfaces or down a small set of stairs.
Callum needs all his personal care needs supported including feeding and drinking. Family were there to assist at this celebratory family occasion and I smiled as strangers exchanged smiles with Callum and I. Fortunately Callum loves his food and music, and during Indian weddings there are plenty of both, a great combination for a Perfect Day for Callum, let alone the beautiful Bride and Bridegroom whose day was truly prefect.
I feel so much joy knowing Callum is aware he is loved, he is very innocent, trusting and loving. I continue to pray he will always be loved and safe as every parent I worry what will happen when I am not there.
Our perfect days admittedly warrant a lot of preparation but I continue to count our blessings as a family as we continue to live as ‘normal’ a life as possible.
Last week we had a further blessing which has made us more determined than ever before to increase disability awareness and understanding. I am Callum’s mother, his advocate, his voice as he holds my hand and guides me on his life journey. I was overwhelmed last week at the GG2 Leadership Awards where I was privileged to have won the Inspire Award. Coincidently the category was Inspire and Callum is and will always remain my greatest inspiration and my teacher, the reality is my son was the youngest winner that evening at Park Plaza in London, as he was the true recipient of this award. I will never give up and will continue to support the vision my son Callum has inspired a Disability Friendly world where everyone is included and valued.
Winning the award means my dearest Callum, your message is being heard! A perfect day is when we share our children’s happiness and smiles and where disability is not a stigma or barrier but where it is embraced and accepted.
– Parmi Dheensa