As a parent, you just want your kids to be happy and healthy and to enjoy life. There may well be ups and downs along the way – the usual childhood accidents and illnesses counterbalanced by uplifting and sporting and academic achievements that make you so proud – but you kind of expect and hope that they will make their way through life without too many major mishaps, going on to meet that special person and carving out their own future.
Unfortunately, for many parents things don’t always go to plan. Sometimes, we get a jolt that turns every expectation upside down and we find ourselves facing a very different reality.
Our daughter Sophia had a healthy and enjoyable childhood and blossomed into a bright and sporty teenager (don’t get me wrong, she wasn’t a saint and we had the usual parental challenges!). Sport was important to her and she dedicated many hours, weeks, months and years to synchronised swimming training as well as enjoying running and later boxing at uni.
Ever the perfectionist, she excelled in her GCSE’s and A levels and went on to study speech & language therapy at Sheffield uni after taking a gap year travelling in Australia and Fiji. She knew what she wanted to do and was about to make her mark on the world.
Our world began turning on its axis when she started to experience unexplained nerve pain in her leg during the first few months of her fresher year. Over the coming months this spread into her hip and back and eventually into her other leg. Despite numerous appointments with specialists and consultants, many scans, tests and x-rays, her pain increased and no-one could provide an answer as to why.
Somehow she got through 4 years of this, often tolerating extreme pain during lectures and exams because no form of medication seemed to help, and achieving a very creditable 2:1. Yes, we were immensely proud of her but the excitement, anticipation and joy that parents feel on their child’s graduation was taken away from us – replaced by worry and concern when the excruciating pain and accompanying anxiety kept her up ALL night on the eve of the ceremony.
(We have since found out, after more fruitless consultations and scans here in the UK and through private testing in Germany, that she has lyme disease and a range of complex infections. As a result her health has deteriorated so much that she had to give up her job as a speech therapist and is severely restricted by debilitating fatigue and pain.)
Graduation Day in 2011 marked the first of many family celebrations that would never be quite the same again. The next 5 years of birthdays, Easters, Christmases and New Year’s Eves have been very different for us as a family – precious moments of mutual celebration stolen from us by a chronic condition that allows no planning and creates distress – and often resentment. Family celebrations have to be carefully managed, paced and minimised to protect our daughter’s frail health.
It’s fair to say that, as a family, we have faced more challenges than most – and sadly I know that we are not alone in this respect. The future we anticipated for our daughter is definitely panning out very differently from what we ever could have imagined. But there are still some huge positives to draw from our experiences and from watching her adapt, cope and deal with this new situation.
Despite the many life-changing limitations that have befallen her, her ability not just to accept these changes but to cope so well with them is astounding. We cannot fail to be amazed by her inner strength and resilience and the fact that her positivity always shines through. That perfectionism is still there and manifests itself in everything that she creates, and in her determination to always do the best she can, even in such trying circumstances. Her selflessness and desire to help other chronic illness sufferers with her blog (spooniesophia.com) is admirable.
And, despite everything thrown at her, she did meet that very special person and they are happy, making the absolute most of the small things that the illness permits them to enjoy. Most importantly, she is surrounded by unconditional love and support which she never for one moment takes for granted.
As we embark on a long and difficult journey towards treatment for and recovery from this debilitating disease, she will continue to make small steps towards that better future. We know that the fighting spirit that has remained constant throughout this illness, will keep driving her forward and for that we are immensely grateful – and proud.
“Nothing can dim the light that shines from within”– Maya Angelou.
If you would like to help Sophia with her fundraising for lyme disease treatment, please go to www.gofundme.com/sophiafightslyme