Blog from a mum’s perspective
Emma Joy-Staines, Founder, UK
20 September 2016
Ok so I have been very nervous about starting these blogs but I’m just going to write it as it comes and hopefully it will help some others or at least perhaps you can identify with it too 🙂
I met my husband in June 2007 on a girls night out we had an absolute ball getting to know each other and we went on various holidays partying and having fun, we loved to have a good time !!
In January he was booked in for a very ‘simple’ operation, as his doctor told to us, to restructure his club foot. Unfortunately, it went quite wrong. The doctor had failed to take his notes into the operation and also he had not done an angiogram which would have shown Leigh only had one artery in his foot.
Due to negligence the doctor severed Leigh’s last remaining artery and it was not discovered for many hours because of poor overnight nursing care. So after months of excellent doctors trying to save the foot it had to be amputated 10 weeks after the initial operation. Leigh spent a lot of time in hospital and was extremely poorly and weak.
At the time we had only been together for 6 months, I was at University studying and with the their consent I was able to be at the hospital with him each day whilst completing my masters degree with Leighs help. At that point we were never considering marriage or children we were just happy that once the amputation took place Leigh would be getting better.
Foot in the sand Pixabay
Our first born, Teddy came along as a huge surprise after doctors had been concerned there may be issues following Leighs complications and we may not be able to have children. To discover we had a baby on the way was a massive joy to us it really completely changed everything for us. We were able to focus on us as a family and really start laying out roots in our new hometown, Newmarket.
“When Leigh had his leg amputated we called his little leg JOYBOY and so even when Teddy was very young he got used to it”
Daddy often needed help from the doctors and sometimes daddy’s leg hurt so he needed to rest it. That helped a lot in allowing Teddy to see that JOYBOY was referred to almost like another member of our family who needed care and attention to ensure Daddy could be the best he could be.
In 6 years Leigh has undergone 6 operations on his legs. Teddy has been very familiar with hospitals and doctors. We have always included Teddy and explained things to him from the start so that he didn’t feel left out. Until he went to school this seemed enough.
Teddy was always kept informed
Photograph by Pixabay
Upon Teddy going to school, he experienced children asking him questions about his Daddy and even saying “why is your Daddy not as strong as mine.” Which of course is total codswollop, Leigh is the strongest man I have ever met but also anyone who has overcome adversity is made of pure strength.
Unfortunately, these things are not as easy to explain to a 4 year old and of course this also impacted on our daughter who was 2 at the time. We soon realised that as a family unit we knew very strongly where we stood and what we needed to do. The problems arose when outside influences and other people began to get involved which was inevitable as they moved forward in education.
Connected image from Pixabay
My primary concern was to ensure Teddy and Sally were never sad at these questions or comments but knew exactly how to reply with dignity, but also to enable the other children to understand why people are different. It was not that the children were being nasty they just had not ever encountered this type of situation.
So we made sure the school we’re aware and whilst I do love my son’s school they weren’t quite able to give him the right support to deal with it. My thought was to have the nurse or teacher speak to the class on why people are different and why is important to accept them all. It is a catholic school so these themes are apparent throughout but I felt given there was an amputee parent it would have been good to allow some awareness around this as its very much Teddy’s reality.
However it’s a fine line as we did not want to draw more attention to it and I find this is probably the most tricky part of dealing with anyone who shows ignorance or nastiness towards an amputee. You do not want to rise to it but you do wish to educate and raise awareness.
So without hearing anything further from the school we spoke to Teddy ourselves and explained some children will never have seen a poorly person before and they won’t realise that your daddy is stronger than most. He battles daily with pain and anguish and he is still there to do homework with you and take you to school when he can.
Teddy seemed very happy at this but this led to a series of questions over the next few weeks from both Teddy and Sally:
‘When will your leg grow back?’
‘Where has the leg gone?’
‘Who did that to daddy’s leg?’
‘Why did it have to leave?’
Our replies were:
‘Daddy’s leg isn’t coming back as it was too poorly and daddy is much better without it’
‘The leg went up to heaven’
‘Daddy’s leg was very poorly so it had to go and the doctors made sure it didn’t hurt daddy when they took it off wth magic sparkles’
‘Daddy’s leg was very poorly and it was making daddy very unwell so it had to go’
They became very sad at the fact that the leg wasn’t coming back they said that’s not fair our reply is we know but rather daddy be better.
So there were lots of questioning and talking over many weeks and there still is now, not as much but I think the most important thing is that I was always trying to find the right and best answers racking my brains to know what’s best.
I realise there’s no right or best answer and every single family is different so it’s about finding what works best for yours. For us we wanted to ensure they asked every question they needed to and they felt they could talk to us. As with any amputee, Leigh is in and out of hospital a lot so they needed to be aware that whilst it’s a little crazy it’s important daddy is getting the help he needs.
Teddy is a silent worrier and is incredibly close to his daddy so it was very important to us that he knew the doctor was excellent and we explained what was going to happen in operations and why it was so important. Sally was then able to follow Teddy’s lead and whilst it’s never perfect, they felt safe and secure in knowing whatever was going on. We knew it was right and also they knew I was there to protect Daddy and I wouldn’t let anyone ever hurt him.
A lot of people said to us let them stay with us or keep them away whilst Leigh recovers, for our family that doesn’t work. We made sure their school/nursery wasn’t disrupted but it would not have felt right to not have them with us or apart of helping daddy get better. Again it’s a fine balance as you do not want them to worry but the children have always been our source of joy and a fantastic focus for keeping things stable and maintaining that routine. Without them I think we would be in a very different place to now.