It was Lola’s first day at reception and she waltzed straight in, bold and bright as a button, but that didn’t last long, and as soon as she realised it was a long term thing she started getting upset and screaming every time I left, which is normal right? Of course, it is – she’s only a baby. Some things were normal. Other things were not and once again her behaviour at home deteriorated, quite dramatically. Stanley was settling in well in year 2 and he liked his new teacher, and so did I.
During the summer holidays, Kenny had been sent for a cord scan, and the results were back in. We went to the appointment full of nerves and apprehension and I honestly couldn’t get cancer out of my mind! We still hadn’t spoken about it. It was just there like a third body with us everywhere we went. It was In bed with us, in the car, it came on holiday and when we went shopping this thing wouldn’t allow us any space, we didn’t know what it was, we couldn’t get rid of it. Nobody invited it to stay but it did. It didn’t care that we didn’t have time for it. Apparently it belonged to us. We weren’t getting rid of it anytime soon and it was only going to get worse!
Primary progressive multiple sclerosis is what was pre-diagnosed. Going by the symptoms and how long it had been there for the consultant was pretty certain on the pre-diagnosis and suddenly this thing had a name. It really wasn’t something we wanted to hear. I’d heard about this disease, I knew what it was capable of. This is why my world was crashing down. I could see into the future with just four words. I knew what was going to happen and it wasn’t going to end happily and I felt sick right in the pit of my stomach. I actually felt that my body had floated into the air somewhere, leaving this silhouette behind using all my bodily functions, my voice asking questions that my floating body didn’t want to hear the answers to.
Practicality overcame me and I needed straight answers, again my head wanting cold hard facts and my heart screaming ‘No, this can’t be happening, they’re wrong, I know it’ Kenny, on the other hand, didn’t have a clue. He didn’t know what the prognosis was. He was walking out of that appointment blind. I never told him. I just said it wasn’t nice. And then I let Google do the talking. We walked out of the neurologist’s office in a daze, hand in hand; no words were spoken between us. We didn’t need words. The neurologist had just apologized to us. It was serious. The walk back to the car is a bit blurred. It felt like an out of body experience. Like someone had a remote control for us and we were just doing what was expected.
What was expected? Where do we go from here?
I couldn’t help but think the worst. It was impossible to imagine anything else other than Kenny becoming totally dependent on me, where he the most independent and proud person I know this would kill him. Wheelchair-bound, potentially bed bound? I couldn’t get these images out of my head. I was afraid. How on earth could I explain to my children what was going to happen? Every single night that big elephant was back in the room again. I said it was a pre-diagnosis because the consultant just wanted to confirm things with tests.
So he was referred for an MRI scan and lumbar puncture.
In the meantime, Stanley got a bout of tonsillitis, so I took him to see a GP and, whilst examining him, she noticed some birthmarks over his body and asked if he had any more. When I said yes, and showed her, she said that I needed to go to my GP and request a referral to the children’s neurologist for a condition called Neurofibromatosis Type 1 (NF1). Again when I got home I googled – even though she warned me not to – and god I wish I hadn’t, I was so scared. He had symptoms that seemed to relate with this as I was also noticing some ASD and sensory signs. It wasn’t because he was copying Lola, it was because of Lola that I had researched and realised he’s been doing things since way before she could. So I now had another member of my family under some sort of doctor. You’ll now understand why when Connie was 2 1/2 I didn’t turn up for her toddler check-up.
Remember I had to go on a parenting course? Well the time had come and I started my parenting course in September 2013 and I have to say – and excuse my French for my parents reading this – but what a load of bollocks. I was not a bad parent! Every technique they’d suggested I already did. This course was not for me but I had to do it, If I didn’t I would be taken off their lists. So I carried on. The second week in, there was a note on the door of the crèche saying there was a case of Slapped Cheek, so I questioned them about it as I wanted to know if it was clean. Connie-Mai had a place there whilst I attended the course. They probably thought I was being an overly paranoid parent, but Connie was so poorly, even if I had a bunch of flowers in my house she would instantly have a high temp runny nose and a cough; this is no exaggeration – she was seriously allergic to flowers of any kind. Her pollen allergy was unbelievable – worse than mine and that’s saying something. They told me it would be fine, the case was in the nursery and it hadn’t travelled this far.
I should have trusted my instincts, which were to turn around and go home. But I couldn’t, I had to see this through for Lolly, she needed this – even if it was a ridiculous hurdle I had to jump over, I had to do it. That night Connie Mai – my poorly little baby started coughing. It came on so quickly, that by Wednesday morning, 24 hours after the course, she was covered in a rash and boiling hot. After taking her to the Doctors they said it was viral – as always. She was having maximum doses of Calpol and Nurofen. She was completely naked and had a temp of 40 degrees, which I was struggling to bring down. I was circulating air in the room with open windows but she was very poorly.
By Thursday, I took her back to the doctor who again said just viral and on Friday I phoned 111 because she was gasping for breath and she had a rash. She couldn’t breathe; her breathing was very laboured. She kept coming up in really weird looking red blotches under the skin. They were almost like scald marks and she just slept, taking little water and not even opening her eyes, she was just laid on me exhausted, lifeless. At this point, they sent her an ambulance, and we were taken to the hospital. She was being sick where her temp was spiking constantly and when we got there they examined her and kept her in for observation because of the rash. Of course, she was all smiles when we got there, and overprotective mummy overreacts again. I was on my own because we needed Kenny to pick the others up from school and after a while my mum and sister turned up. I had already told the Doctor that I wasn’t confident enough to take her home and that I wanted them to keep her in for observations at least until late afternoon and she agreed. Once she saw I had other people there she basically forced me to leave with Connie and, under pressure, I agreed. Stupid mistake; as soon as we left Connie deteriorated once again, and by Saturday morning I took her to the walk-in centre. She was being sick everywhere from her temp spikes and even with Calpol and Nurofen her temperature was spiking every hour. So even the medicines weren’t working.
It was about an hour and we were seen again and sent home. The journey and disruption had woken Connie and she was all smiles. Typical. Once home she slept all day, I mean all day. She didn’t feed, she didn’t wee, she didn’t do anything at all, just squirmed around on the sofa, asleep for hours and hours. I had seen over 5 doctors this week and not one of them thought she was of any concern because not one of them could be bothered to observe her for longer than 30 minutes. By midnight on Saturday, I’d had enough; she was practically lifeless and limp. A temperature of over 40 degrees after having both Calpol and Nurofen and she wasn’t drinking and was not waking up for me. I went and picked my mum up and we took her to A and E where once again we weren’t taken seriously; doctors were just wandering around, not even concerned we were there. She was being sick, burning, and lifeless and some prat of a teenager had decided to take ecstasy and so had 5 doctors all for him. By the time they got to my poor baby, her blood pressure was through the roof! She was severely dehydrated and incoherent, they inserted a canula into her arm and she didn’t even wake up. I was fuming!
When the doctor came around to see her, she was poking and prodding Connie-Mai and sitting her up and Connie was just falling down back onto the bed staying asleep. They ordered tests for her ASAP.
A lumbar puncture is what they were going to do. I was terrified. She looked so tiny. Just lying there in a massive cot all wired up. I’m so thankful that my friend was working that day and I asked her to hold Connie during the lumbar puncture for me as they wouldn’t allow me in there. Walking down the corridor in those first minutes after she was taken was the 3rd worst time of my life! Remember the other 2? I could have collapsed; all my energy was zapped out of me. My legs went to jelly and I have no idea how I even made it back to her room. Within 15 minutes it was all over and she was back in her room.
It wasn’t meningitis. It was tonsillitis! Can you believe it? All that for tonsillitis, if they would have just given her antibiotics in the beginning then I very much doubt it would have gotten that far. Another experience I left feeling very bitter and annoyed about.
So Kenny’s results from his brain scan came back clear and we were overjoyed. After talking about it and reading it through we never believed it was Primary Progressive Multiple Sclerosis anyway, Doctors are always wrong they could be with us too? Couldn’t they?