My son Callum was born on 2nd May 1999 at just 28 weeks. He was in the pre-mature babies unit for several months. I remember the doctors decided there was no time to give me any pain relief as Callum was struggling and they could not wait. I remember screaming as they cut me to help my son into this world. I remember wanting to see him and seeing nurses and doctors rushing him out the room. I remember looking at his dad and asking if our son was okay. I remember the terrified helpless look in his eyes; I remember how unreal it felt for us both.
Everything had been so simple with my eldest son, an easy pregnancy and birth. Nothing prepares any parent for a child when they are born so early.
I was in hospital so many times over the next few years that his older brother who was two years old called me Dr Parmi.
Callum came home in August 1999 during this time he was in and out of hospital as he kept having ‘blue episodes’. Callum’s lungs were still under developed and he would go blue whilst having a bath or during feeding and seemed to be upset all the time as though he was in pain. The hospital would do checks and observe his oxygen levels in his blood stream, and once they were at the correct level we would be sent home each time, this happened on several occasions. On October 1st 1999 I woke to see my son not moving, I had checked on him not to long ago and screamed ‘No’ as I quickly scooped him up in my arms, he was so cold and stiff his dad got up with disbelief. I could just about hear what felt like his last breath, quickly we got him on the bed, dad tried to breathe in his mouth as I grabbed the phone and called 999 and got put through to someone who talked us through how to administer mouth to mouth. The ambulance arrived I held Callum in my arms, praying all the way to the hospital, as he had various equipment attached to him. We reached the hospital this time through the emergency double doors, surrounded by more doctors and nurses. The next 24 hours are a bit of a blur, I remember our consultant paediatrician coming over to us to say the next couple of hours would be crucial for Callum’s recovery, he should be okay. They warned us that due to the lack of oxygen my precious son may have seizures because the brain is in shock but these should soon stop once the brain has recovered.
I remember having to go home at 5am as the hospital staff said they would sort out a family room and we could get some things. I remember Callum in this huge room full of machines monitoring his every breath. I did not want to leave him but I also knew both me and his dad had to go back to the house full of the haunting echoes of that morning and neither of us wanted to do this on our own. We only walked in and already had decided we did not want to go upstairs to get our things, when the phone rang. The hospital told us to come quickly as Callum’s condition was deteriorating. We ran out the house, reached the hospital, and ran into the room to see my son for the first time in so much unbelievable pain he was having several seizures. Imagine seeing your precious five month old baby’s body shaking violently and feeling so useless as you cannot do anything to stop this.
Within hours which felt like seconds, our consultant paediatrician entered the room and said to us the words no parent is ready to hear. She told us if in the unlikely case Callum survives he will be severely brain damaged. The floor beneath me gave way as I took in this statement. We were devastated and what went through my mind were all the books I had read preparing for a baby, supporting the first years of your baby’s life none of which had prepared me for this. The media and society generally were so negative about disability. No matter what, my son was perfect, he was perfect no matter what he would or would not be able to do. He had to fight I would fight for him I promised I would be there no matter what.
Callum was put on a life support machine and thankfully he fought hard and pulled through. I remember the first time in hospital I met the many professionals who would support Callum, physiotherapists, sensory, vision impairment team, hearing impairment team, various consultants specialising in certain areas all trying to support Callum and his family. That’s when I realised our family journey was going to be very much different than what we had originally planned.
Callum has severe learning difficulties, dyspraxia, vision impairment, epilepsy, is non verbal and for the rest of his life all his personal care needs need to be supported. Callum is my son, my miracle, my inspiration.
Callum came home towards the end of November 1999 and was on several medications and would have several follow up assessments and tests as well as brain scans. I was looking forward to having his first Christmas at home as at one point we were looking at the real possibility of having Christmas at the hospital. A week before Christmas my marriage ended. It was an extremely painful time and many marriages come under strain under the circumstances we had gone through. For a long time I felt saddened because I had not only lost my husband, but my best friend and the father of my children. I refused to become bitter and be seen as a victim of circumstance because we had had two beautiful children together and they were precious to me; they were and always will be my world. I only wanted my ex husband to one day understand what I was and had been going through at the time and yes of course to realise the priceless treasures he had let go.
How can I explain what it is like to be a family with a disabled child? Well for us it is like we have been channeled into a different frequency where you appreciate the very simple things. Callum loves the breeze on his face, the feel of sand and grass under his feet, swimming, having baths (which I am sure he sees our bath as a miniature swimming pool just for him!), music ranging from bhangra, mainstream music including The Beatles and classical. He certainly loves his food, huge hugs and cuddles and above all his family.
I heard of a lovely belief that prior to any of us being born into this world our spirit chooses the mother, the father and the family they will be part of. I shared this with my eldest son many times I remember telling him about this belief when he was three years old.
‘Cairen how lucky we are that Callum chose us to be his family, you as his big brother and me as his mom. Callum must have seen something very special in us to choose us to hold his hand and support him in his life. He must have believed in us and believed we could be as strong and brave as him. He must have known we have so much love to give. I am so glad he chose us, we are very lucky to be his family’.
Every single day is a blessing, Every single birthday is so special. Callum had a fantastic 15th birthday and one of his latest adventures was going to Ash End Farm and meeting the horses. Many disabled children really benefit from horse therapy and the interaction, Callum certainly enjoys their company. Here are some pictures of the day.
– Parmi Dheensa