It was 4am early hours Sunday morning. Pitch black. I had been struggling to sleep and was feeling restless, and anxious. Lillie burst into our room, yelling that Charlotte was having seizures and I needed to come. Not knowing what to expect we tore upstairs. Sure enough, Charlotte, whilst being fully conscious and aware, was having whole body contortions. They lasted just a few seconds and did not cause any confusion or distress in Charlotte…but they were happening every few minutes. I asked Lillie to get Gary. I tried wrapping my arms around Charlotte to see if pressure might stop them. No. I had never seen anything like it. She seemed so well in herself, yet had been shuddering violently and intermittently for the past four hours. Should I take her to A and E? Phone 999? Wait until tomorrow and take her to the GP?
Gary ran upstairs and watched in horror. He suggested we phone 111. Of course! So we phoned them. Now bearing in mind, we had phoned 111 just a few days ago for another child to get advice and they hadn’t got back to us until 3am the next morning, we were expecting a long wait. The triage person asked lots of questions and told us to wait by the phone as a doctor would be calling us back soon. We weren’t terribly convinced their soon was the same as our soon, so we all hunkered down under covers, watching Charlotte’s shaking every few minutes. The doctor phoned back within three minutes.
Ten minutes later they had arranged for an ambulance to come and assess her. We got her downstairs. By this time, I think anxiety was causing the shudders to come every few seconds and poor Charlotte was getting unbearable pain down her right side and her left thigh. Big fat tears were rolling down her face. I felt useless. Impotent. There was nothing I could do but sit with her. At this point all of upstairs was awake, and we had woken Ads (who sleeps downstairs) and he was comforting her on one side, whilst Lillie was on the other.
The ambulance crew arrived. They were so lovely and calm and did lots of tests to check it wasn’t her heart or her sugar levels. Her blood pressure was very high but everything else was normal. They were as flummoxed as we were, as the doctor on the phone had been. They’d never seen anyone fitting (which is what they called it) so much but without any loss of consciousness. They decided to take Charlotte to the hospital.
I went with Charlotte, and poor Gary, Lillie and Ads had to stand by and watch us all leave in the ambulance. The hospital did an array of blood tests and scans but nothing showed up on any of them. The A and E doctor said Charlotte was having myoclonic jerks but they didn’t know what was causing them and therefore couldn’t treat them. By nine we were back home again, with an urgent referral to see a neurologist.
For the rest of the day, my gorgeous daughter was having myoclonic jerks every few minutes. She found that if her mind was taken off them they occurred ever so slightly less. By nine she was exhausted and went to bed, and blessedly fell asleep. Poor Lillie couldn’t though. She spent the night watching her twin, who was jerking every fifteen minutes or so, in her sleep. Monday came and she was exhausted.
I made Charlotte a bed on the sofa, and there she stayed for the rest of the day. I could see both she and Ads (and Lillie and Abigail and Becca who were all at home) were struggling. Charlotte was in so much pain in her left thigh that she could hardly move, yet every few minutes she jerked uncontrollably and incredibly painfully. Pain relief was not working.
I can’t describe the desperation I am feeling. I have done lots of research, and we have also got her a private appointment with a rheumatologist to try to get a firm diagnosis of all her symptoms, which seem to be increasing each day. My heart is slowly breaking as I lose more and more of Charlotte to this illness.
And then there is Charlotte. Yes, Charlotte. My Charlotte, who smiles through the pain, even though I can see how scared she is. Charlotte, who has us all doing the Mexican wave with her whilst she is jerking, renaming it the Mexican jerk! Charlotte, who still makes plans for the future, a future which is so uncertain. Charlotte, who told me Sunday, before the ambulance arrived, that she felt like Job in the Bible. That she would suffer through whatever life throws at her, knowing she will have the abundant blessings of God when she comes through the other end. Charlotte, who when a friend texted her and said how much in awe she was of her and how brave she thought she was, said in a small voice ‘People think I’m brave?’
Yes, my darling daughter, you are as brave as they come. You’ve been ill for three years now, with absolutely no support from the medical profession. You’ve lived through constant pain, extreme daily exhaustion, crippling anxiety, your hair falling out and now myoclonic jerks. Yet your indomitable spirit, your super human strength in the face of adversity, your ability to face each day with enthusiasm and determination… you have no idea how brave you are, how amazing we think you are and how completely and utterly loved you are.
You said yesterday that you were sorry you were such a burden to us. You are not. You are like one of those Amazonian women we read of when we did ancient history. You toss back everything which is thrown at you, with the same attitude of strength, faith and determination. You still manage to care for others and think of others even though it would be easy to turn inward and only think of yourself. You rarely feel sorry for yourself, instead thinking to the next thing to do, to achieve. And you love like there is never enough love in the world, fiercely, with the knowledge that your love can and does make a difference. You are no burden. You are incredible.
A Proverbs 31 woman, who can find? I can. She lives with me. In my house. She is my daughter. And she belongs to God.
For all my praying readers, please could you pray that the fits stop. Please could you pray that Charlotte gets a diagnosis which explains all her symptoms, not just the tiredness. And please could you pray that a Peace which passes all understanding will rest on Charlotte’s heart.