Category: Blogs

“The simplest questions are the hardest to answer~

“Mummy do you wish I could walk like other children?” -Brady

“Mummy what age will Brady be when he can walk?” -Riley

These are the 2 questions that come to mind when people ask me what is the hardest thing about accepting Brady’s disability. I don’t know why these two questions trump the endless hospital appointments, medical procedures, hospital stays, medical operations, physiotherapy appointments, OT appointments and any other appointment where someone feels the need to review Brady.

Brady asked me this question was he was only four and half and we were sitting in a play park in Kildare Shopping Village in Dublin watching his daddy and Riley play. As he sat on my knee he turned round to look at me with his big blue eyes and asked the question ‘Mummy do you wish I could walk like other children? How do you answer that question? How do I put into words what the reality will be for Brady? How do break his heart and tell him that will never happen? These and many other questions raced through my head as my heart thumped, the sinking feeling in my stomach deepened and my brain attempted to barricade the tears welling in my eyes. With a deep breath and pushing those feelings deep down I looked at his little face and decide to be honest by replying ‘So do I sweetie, so do I’ to which he threw his arms round me. I think for me this moment was when I knew this child of mine was strong enough to deal with whatever life threw at him because no matter what he would always have me, his daddy and Riley at his side.

The littlest Chambers was 7 years old when I had to break the news to him that Brady would never be able to walk and run like him. The question came completely out of the blue one Saturday morning as I was cleaning his bedroom as he chatted away to me talking about his school friend and activities he did with his brother then bam came the question ‘Mummy what age will Brady be when he can walk?’. As those innocent blue eyes looked up at me I knew what I had to say but would I be able too? Would I be able to crush his dreams of playing football with his big brother? The realisation hit me that although Riley has grown up with Brady and his disability he did not really understand what it was or how it would affect him long term. I sat him down on the carpet and explained that Brady would never be able to walk like him but there were still lots of things they would be able to do together. I waited holding my breath for his response which after a minute was ‘Ok I’m going to see if Brady wants to play Lego now’. After he left the room I remained on the floor pondering over what had just happened where was the onslaught of questions? Where was the demand for answers? Where was the anger? Then it hit me Riley wasn’t angry or sad he just asked a question and accepted the answer given to him. He didn’t change how he felt or looked at Brady he was still just Brady to him.

I think these words are so very true-

“While we try to teach our children all about life.

Our children teach us what life is all about.” 

It is amazing to think how those questions have haunted me but to Brady and Riley they have never given a second thought. To them the questions were asked, answered and then forgotten as everyday life continued but to me they made me wish for the answers to have been different or in fact for the questions never to have to be asked in the first instance. Our children sometime truly do teach us a simpler pathway through life, a path where you ask questions, accept the answer given and move onto to the next day.

For now its time to chase 2 boys into bed and begin the prep of school bags, sports bags and lunches for tomorrow…… you know the drill!

Until next time, L

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

 

Hello world!

I thought our first blog post should be an introduction to the names behind Custom Crutches.

Custom Crutches if the brain child of my husband David coming from the years he spent sourcing and designing crutches for our son Brady. Brady is 11 years old and suffers from an extremely rare Spinal AVM which has left his lower body disabled and he cannot mobilise without a walking aid -I will write a separate blog about Brady’s condition and the impacts on his everyday life.

David has spent the last 4 years designing and making custom crutches to suit Brady and allowing him to decide what type of crutches he uses. David is extremely passionate about designing these crutches and the joy they bring to children. David’s custom crutches have become an extension of Brady and allowed him to feel a sense of pride as the attention these crutches create has been only positive not negative. He thoroughly enjoys meeting people and talking about his crutches not shying away embarrassed to have 2 plain grey crutches at the end of his arms.  He also finds them very useful when playing football with his younger brother Riley to stop many potential goals!

And me? I am Louise mummy and writer of this blog.

At Custom Crutches, we understand first-hand how difficult it is for your child to feel different to their peers and how much they want to fit in not stand out. We also understand how important it is for your child to know their place in the world and alongside their peers. We have seen through Brady how having a mobility aid designed for you becomes an extension of you not just something you need to use.

If you have any questions, queries or comments please get in touch I would love to hear from you!

You can get in touch with me through the website just click on contact us section or email me at

David@customcrutches.co.uk

Until next time, L