One step removed - a Grandparent’s view

What are all these new conditions we keep hearing about, Ehlers-Danlos, hypermobility, classical - is our granddaughter not just double jointed?

Years ago, we often saw people on television shows bending themselves into strange shapes and putting their shoulder joints out - it was considered entertainment, but this is different, this causes our beautiful granddaughter to cry with pain and frustration.  

Eight years ago we had a panic phone call from our son to say that our granddaughter had dislocated her knee and was being treated in hospital - his panic spread through to us, but we were assured that the doctor treating her would soon put the knee joint back in place and that after a few weeks rest she would be right as rain.  But just as we think that things are getting back to normal - shock, panic it happens again, then her other knee dislocates too.

Over the following months, while waiting for an appointment at the children’s hospital, she is forced to ‘bottom shuffle’ upstairs to bed or to use the bathroom.  Whilst doing this, her shoulder dislocates and suddenly our independent, fun-loving grandchild can no longer even use crutches, she is in a wheelchair - one that she can’t even push herself, because her shoulder will not take the strain.  Wheelchairs are something my wife and I have seen but had not had to face before - in our minds wheelchairs are for old people like us, not for teenage girls. Having a family member in a wheelchair, when you are new to it, brings many new unexpected problems. We have to be brave for our son and daughter-in-law’s sake, as well as for our granddaughter, but we were heartbroken. Little things like finding out how difficult it is just to get her into our house (we have a double glazed front porch and a step and narrow doorways) for Sunday lunch reduce my wife to tears when in private.

Finally, she is given a diagnosis - a condition none of us have heard of - Ehlers-Danlos syndrome. So we start to research and find the HMSA website and helpline and, for the first time, somebody really listens and understands. The HMSA team helps us make sense of what is going on - to take back control when the world feels like it's off its spun off its axis. 

Over the years, other symptoms such as severe scoliosis, PoTs, and SVT appear, the dislocations become more frequent and physiotherapy, despite helping strengthen, does not stop the dislocations or undo the damage which has left her with severe arthritis and chronic pain.  We have had to prepare ourselves for her needing four separate appointments with the operating table and long periods of recovery afterwards. Through it all, we know that the people we have become involved with at the HMSA will be there for our family, however, this goes in the future. We try to remain strong, knowing her mum and dad dread these surgeries and need our support, but I don’t think people realise how it feels being ‘one step removed’ from what is going on - the parents don’t want to worry you, and you don’t like to keep asking questions - there is no rule book, no protocol. We hold in our own problems, trying not to complain about our own ills - knowing that she is suffering far worse.  So we sit together awaiting news, another operation is over - dare we ask how it went - should we phone, should we wait? - Oh, please phone ring - let us know it was a success. We finally hear that it went well and, for now, we relax.  --------------------------- The HMSA Helpline, Social Media Team, Group Leaders and staff work hard to make sure there's always a listening ear when family members are worried and don't know what to do - to donate to our work helping people understand what is (and is not) going on, reassuring them and the people around them. It's important work, every penny makes a difference, so if you can, please do donate click here to support our work.

Published: 27th February, 2020

#Ehlers-Danlos #hypermobility #hypermobilitysyndromes #children #unitedkingdom

#kidswithEhlersDanlos #bendykids #grandparents