Sammy is the mum of RAiISE Founder Sophie. On this World Lupus Day, she shares her experience of being a parent of child with Lupus.
Lupus crept into our family so slowly that at first, initially it was hard to notice as small changes trickled into my daughters’ life. At first the odd strange pain in her shoulder, knee or back was put down to her being tired, overdoing it, or even that she had somehow strained something. Within a couple of weeks her symptoms had got worse and so we went off to the GP hoping for a bit of reassurance. At this time as a mum, I was concerned but not worrying unduly as all of her symptoms could be put down to something that we believed could be explained. Ironically after seeing the GP I was actually more worried, he tried to put breathing problems and all the other things that were starting to affect her everyday life down to a phase, her age and even suggested she would grow out of them. As a mum you know when something is wrong and as she had never had any major health concerns apart from the usual childhood illnesses I began to worry that he was totally getting it wrong.
In just a couple more weeks the symptoms had grown dramatically including hair and weight loss, and severe pain in her joints and chest with incredible exhaustion all of the time. We were quickly back to the doctor and this time saw a different GP. He listened, he actually listened and took in every word my daughter explained to him which was a huge relief. Blood tests showed there was inflammation and for the first time I heard the term JIA or Juvenile Arthritis. The doctor was concerned and so we were referred to our local hospital and my daughter was given some much stronger pain killers.
By now I was extremely worried. I felt totally useless as my beautiful 14 year old child cried herself to sleep, asking me what was going wrong and why was this happening to her? All I could do was promise that we would get to the bottom of it and that we would not stop until we had. The consultant appointment at our local hospital some weeks later proved disastrous, instead of a paediatric rheumatology specialist we saw a nice but ineffective registrar. She decided we needed to see somebody else and so the wait for some real answers continued… but just two weeks later with symptoms now at their worst it is safe to say I was worried sick. A phone call to try and establish the date of the appointment ended in total frustration as I was told she would have to wait three more months! Three months doesn’t sound like much if you are waiting for a holiday, a birthday or something fun. Three months when your child is having to miss school, cries regularly with pain all over her body, is losing weight rapidly, with her hair is failing out, and is now limping and sometimes having to be carried upstairs to bed and is fading before you and your husbands’ eyes, actually seems like forever. There was no way I could sit by and wait and luckily the helpful GP was as angry as me! When I look back at that time, I turned into a crazy, protective mother lion as I felt it was a huge emotional scary battle that we had no choice in, we just had to start fighting to find answers.
I am a big believer in sliding door moments, the times in our lives when one sometimes small decisions or choices change our path in a much larger way that we realise. The day when I rang the GP to say we simply could not wait three months was definitely one of those moments. As I suggested travelling to London to see a specialist at Great Ormond Street, he asked me if I would consider Alder Hey Children’s Hospital in Liverpool. Of course I said yes! Within forty minutes we had an appointment for literally the next week.
Less than a week later I more or less carried her into Alder Hey as her walking was so dreadful that day. It was early April and for the first time since October when this nightmare had begun, I felt that my daughter was finally in safe. I still remember feeling so emotional as we met the fantastic consultant who reassured us that they were going to help and give us answers. The word relief simply doesn’t touch it. Over the course of a long day she visited so many departments and had a huge amount of tests. Every single part of her body was looked at carefully and thoroughly. At the end of that long day we were told that they were concerned it could be JIA or Lupus. My knowledge of Lupus was practically zero and so my husband and I looked into both diseases over the next week. The day we went back to Alder Hey for the official diagnosis was a mixture of relief and devastation. As a mum who had felt sick with worry for months I was relived to finally have answers. The reality of being told your precious girl has a lifelong diagnosis of Lupus was very, very hard. A specialist nurse was totally wonderful, answering questions, bringing tea, listening and passing tissues. The support of the whole rheumatology team was beyond words. They were amazing, caring, professional, supportive and kind in equal measure. I would though have given anything to have swapped places with Sophie in a heartbeat and still would without any hesitation.
Over the last four years the support from the whole Alder Hey team has never changed. My daughter has had countless appointments in many departments, lots of hospital stays and many days hooked up to a drip as part of a management plan to keep Lupus as controlled as it can be. Slowly we got our daughter back and we will never be able to thank the team at Alder Hey for everything they have done. We have become involved in research and the wonderfully supportive charity Lupus UK. We have become friends with people along the way who have shared our journey who I know will be life long as they have played such an important part in all that has happened over the last few years and an amazing support to Sophie and our family. We have tried to turn the most frightening, scary and heart breaking thing to hit us, into something that does some good for others with the start of RAiISE and other work we have become involved in. The most important thing by far has always been to keep Sophie and her health stable and safe.
As a mum I still feel like so many other mums who have children going through a life changing diagnosis. At times I am ok, but often I am really angry and ask why did it have to be my daughter that has to go through all of this? This was not what we ever imagined when she was growing up so healthy with so much to look forward to as she became a teenager. Even when things are stable and being managed, life is never the same, you are never totally off guard. You want your gorgeous teenager to have a normal life, to experience all the fun, laughs and joy you should be having at that age. But the reality of having a teenager with Lupus is that you are always waiting for the next flare or bump in the road. I worry about what is going to happen in the future and sometimes wonder will Lupus throw us a curved ball when we are least expecting it? I know that no matter how much I do worry about the future it won’t change anything, we will just have to deal with things if or when they happen. I think what I have learnt is that you will always have times when things go wrong, you do however find strength to get through, you don’t really have a choice!
You learn how to bite your tongue when someone’s response to you talking to them about a bad Lupus flare means they feel the need to tell you how their child has also been ill with a cold or bad cough… hardly a comparison. Trying to explain Lupus Fatigue is also a good one, most people have no idea that a good night sleep is not going to make it go away, if only it was that simple. People can look at my daughter and all they see is a happy girl with a smile on her face. They can’t see that sometimes that is just not the case, inside she is feeling horrendous and even doing the smallest and most normal of things is draining and impossible. It can be upsetting when you think that lovely and very close friends and family just don’t understand. I have to ask myself, would I have understood four years ago before all this started? Probably not but I think I have definitely learnt many things along the way. I know how important it is to talk things through with people who really understand and are going through a similar experience. I don’t think I will forget meeting for the first time a mum who also had a daughter with Lupus. I knew just by looking at her face that we had so much in common and it was so important to talk and listen to each other. I have also learnt how empowering it is for me personally to get stuck in and try and help others who are going through experiences like ours. It makes you feel that although you can’t change what this horrible disease continues to throw at your child, you can in some tiny way try and make it better.
I have learnt how having a child with Lupus impacts on a whole family and how there is no perfect way to get through this, you just have to keep trying your best. I have learnt that sometimes I am strong and ready to take on the world to support my daughter but on other days, usually when I least expect it, I am emotional and can cry at the drop of a hat when I think that everything is unfair. A long walk with my dog can usually clear my head!
By far and away the most powerful thing I have learnt and continue to learn is the unbelievable strength of my daughter. The way she has come to terms with everything that has happened from that very first day of lupus diagnosis has totally blown myself and my husband away. She has achieved so much whilst battling a long term chronic condition that is at times overwhelming and would defeat even the strongest person never mind a teenage girl. As an undergraduate at university with a fantastic future ahead of her she has so much to look forward to. We are so proud of her. With her passion for research advocacy and charity work, plus an ambition of a career in film production, my daughter has a good future to look forward to. Lupus will sadly not disappear but I can say with some certainty it most definitely will not determine the whole of Sophie’s story, she will write that herself.