I was never given a book about to be a mother. You learn as you go along; washing, feeding, caring - giving all your time, but when you give birth to child with a limb-difference, how do you cope?
Twenty-three years ago, I was a proud mum to be. My second baby on the way, having nearly lost him three times throughout the pregnancy. Fortunately, I managed to carry him for thirty-five weeks before going into early labour and on the 24th January, with him weighing three pounds and four ounces on arrival. He was classed as a premature baby because of his low weight and the redness of his skin, with no fat around his body.
Due to this, he was taken straight to the special care baby unit for two weeks to gain weight and do tests. It was then that the shock of mine and his father Alan’s life came. We were told he was handicapped. No one knew if, along with the limb-difference, he was mentally handicapped also. Tests were carried out and results were waited on for months. These were the longest three months of our lives. Thankfully, he was alright.
The next hard time was questioning myself as to why this had happened to me and why it was not picked up on my scans. I started to doubt myself as to what I did during my pregnancy to cause this disability. Specialists said it was ‘just one of those pregnancies’ and couldn’t explain why this happened, whereas I was worrying if it was something I did as I didn’t drink or smoke. Was it the fertility tablets I took? I just couldn’t work out how or when all this happened.
When I was allowed to take Harry home, it was a great relief. As time went by, we attended many hospital appointments with a fantastic hand surgeon. Harry went under many surgeries to try and straighten his hand. We tried everything possible including a metal apparatus, similar to a frame placed on a broken leg to mend the bone, which unfortunately failed as a solution.
Following on, we tried having a pin inserted to straighten his fingers. As luck would have it, they came out and had to be removed by yet another operation. I was hurt as my son had gone through so much pain and many operations that, after a couple of years trying to make his hand/arm look cosmetically normal, it was said that it will never be. The specialist claimed there wasn’t enough muscle, ligaments or fatty tissue to work with to make a difference.
In the end, the person to ask if he wanted to carry on with these operations was Harry. It was his choice. The next big question was how will Harry cope with this disability, being different from the other children especially when he starts school. Will he be bullied? Picked on? To our amazement, Harry coped extremely well.
As Harry started school, little things like fastening his buttons on his shirt were a struggle and as time went he got very angry and frustrated, but never gave up and sat on his chair and said, “Look, I can do my buttons,” with a huge smile. All we could do was give him a smile and a huge hug. I could see he was not letting his disability get in the way of doing things.
Sometimes it was hard to step back and let him do things himself. All that frustration and anger would slowly disappear and no matter how small the achievements were to me, they were absolutely massive to Harry and his confidence grew.
He learned how to swim - a massively important step as he now could then swim with his friends. Just for his father and I to see that mega smile light up on his little face brought me to tears. He went from strength to strength, demanding to do everything himself; playing football and climbing frames in the park. I would be on tender hooks watching him fly up that the frames, but felt so proud.
As he grew older, he started training at his dad’s MMA gym with his older brother. That scared me as he also has a neck condition called Klippel-Feil syndrome, which affects the mobility and movement of his neck, meaning any movement that could shock the two remaining discs could leave him paralysed from the neck down, but Harry made the decision to carry on training under his father’s tutelage.
With his father Alan taking a lot of time to help arrange ways to avoid any tumultuous circumstances, he took great care not to get injured. Harry then blew me away, going on to have a boxing match against a fully able-bodied boxer and winning. Harry has achieved a lot in not letting his difference stop him and all I can think of is what an unstoppable young man and son I have.
As parents of a limb-different child, myself and his father always struggled to help him figure out tying his laces. We offered all the help we could in helping step-by-step, but it was ultimately something he adapted to figuring out himself. While coaching at NubAbility Sports Camp in America, he was helped by someone similar to him and finally figured out how to tie his laces. He was so excited to show us all on his return home. I was totally amazed and again so proud.
It just goes to show you have to take a step back and let them work things out for themselves. They will have their mood swings, bad tempers, shouting and screaming but it will all be worth it. Let them find their own way to do things, no matter how much you see them struggle. It makes them stronger and a much better person for achieving their own goals. They’ll know to never ever give up. If they want help they will ask for it, but that has to be on their own accord.
I hope many parents can relate to my story this Mothers’ Day. In my final offering of advice, to mothers and fathers; be there with love – sometimes tough love - hugs, encouragement and support and they’ll remember it forever.