I once read ‘Parenting a child with a disability can be a challenge, and often those challenges feel like a tidal wave coming at us, threating to make us lose our balance, to fall, to give up. But we don’t. We never do. ‘
Parenting Brady has been a roller coaster of emotions over the last number of years with incredible lows but matched with incredible highs. It has been a journey of many tears but equally as many smiles.
“When life gives you a hundred reasons to cry, show life you have a thousand reasons to smile”.
When something goes wrong….
Brady Chambers arrived on the 18 January 2006 weighing 7lb 11oz after spending 39 weeks and 2 days being carried by his mummy. He was an angel of a baby and for the first 12 months we were in a bubble with this gorgeous boy completing our family. Around 14 months Brady took his first steps but by 18 months we began to worry as although his other skills were developing his walking didn’t seem to be getting any better, he stumbled and fell after a few steps and walking any distance was a struggle for him. We decided to take him to the GP and for the next 18 months we visited numerous GPs, Podiatrists, Physiotherapists, Orthopedic Consultant and eventually a Neurologist.
During the Neurology appointment in June 2009 the consultant watched Brady move around the room but paid particular attention to Brady playing with his little toy car as he constantly took the little black tyres on and off. ‘Does he do that a lot’ he asked my response was’ Yes it drives me mad finding those little black tyres over the house’. There seemed to be some confusion over why Brady’s upper limbs caused him no issues but the lower limbs did so he agreed to an MRI scan for under GA to get a more in depth look at Brady’s brain and spine. The MRI was scheduled for August 2009 2 weeks before we went on holiday to Florida so we focused on getting the scan over so we could enjoy our family holiday.
Scan day came and Brady did amazing and as we left the hospital the nurse advised us that results would probably take a few weeks to come through and consultant would then make contact with us –no problem to us we were looking forward to Florida. 48 hours later the phone rang, it was Brady’s consultant the conversation started ‘Mrs Chambers I just wanted to check have you had you baby yet? As I stood holding my 8 month old Riley in my arms I called to David to speak to him with this feeling of dread and fear washing over me and my heart racing. I remember thinking what terrible news was he going to deliver for him to ask me that question? What terrible thing was happening to my little Brady? Then as I watched David face his voice changed and he smiled and put the phone down. The Neurologist had confirmed Brady’s brain was clear with no damage but they had noticed a potential block in his spine we felt it was a miracle that this was something they would be able to correct. This was a Friday and the consultant had asked us to bring Brady into hospital on Monday for further tests and investigation work.
After a weekend of speaking to family and friends we got little Brady packed up and off we went to be admitted to Paul Ward in The Royal Victoria Hospital for Sick Children in Belfast. We arrived and got Brady settled and as I looked around the ward I felt this feeling of gratefulness there was my little 3 year old sitting up in bed drawing and colouring whilst the other patients in the ward had to lie in their beds crying out in pain with many non verbal and couldn’t express their feelings. We spoke to the Ward Sister and asked innocently ‘Do you think Brady will be out by the end of the week as we leave for Florida in 10 days?’ She took David and myself to the side and explained that if we looked around Paul Ward at that moment in time Brady was the highest risk child there. I remember looking around the ward seeing all these children lying in their beds in so much pain and then looking at Brady sitting on his bed colouring in and watching TV –how could it be high risk? He looked perfectly healthy and content sitting on the bed he was not in any pain? I look back now and think that nurse must have though David and I were a little crazy asking about going on holiday when are child had something in his spine that could have killed him at any stage. We really did not understand at that point how our life would tangle similar to those blood vessels in Brady’s spine.
This is just the beginning of Brady’s journey with the rest still to unfold…..
Until next time, L