October 2021 – the time I became a Mummy. As a young girl, I had dreamt of having a baby when I was ‘super old’ at the grand age of 20. I’d hold it, love it, feed it and change its nappy.
As I grew older, (the grander age of 32!) I still had this perception but social media gave me the impression that maternity leave consisted of play dates and lunch and coffee catch ups. Since becoming a Mummy, I’ve realised, that what people choose to share on social media, is a very small snap shot of what being a Mummy is really like.
I’m not just a Mum. I’m a teacher, nurse, physiotherapist, chef, taxi, housekeeper, diary organizer, hairdresser, crafter, story-teller, comforter, protector and much more. Being a Mummy is hard. I was more than prepared for this but I wasn’t quite prepared for being a Mummy of a little boy with such complex needs.
The early days were tough. Really tough. Luke was born in the October so we were just heading into winter. The temperature was dropping and the nights were getting longer. I was recovering from an emergency C-section whilst having a new-born in special care; not to mention sore and massive boobs!! When Luke was discharged, we had two weeks at home with Daddy. Those weeks were fine. We were taking things in, working together and getting used to being a family of three. Then came the time when Daddy had to return to work. That sunken feeling when you hear the door close and you realise that you are completely on your own. For the whole day. What do I do? Where do I go?
Over the next couple of weeks, Luke cried and cried. A high-pitched cry. I was fully prepared for a crying baby but something was telling me that it just wasn’t right. I rang our health visitor, who could hear Luke crying on the phone, even though I was upstairs. She came around the following day and got us in to see the GP. From then on, it was always ‘reflux’. Every GP that we saw, who examined Luke, all said the same thing: ‘healthy baby’.
Healthy baby?! Luke was far from healthy!
Months and months went by and we finally got a referral to see the Paediatrician. As the referral was due to reflux that’s all she seemed to go with. Although nothing changed with Luke, my immediate thought was ‘They must be right – they’re the professionals. They’re the ones who have spent years and years at university. Who am I to tell them?’ Turns out, my intuition at that point was worth more than a medical degree. Our health visitor requested another referral, but to investigate anything other than reflux. This referral was a further SIX MONTHS away! This just wasn’t good enough. It was breaking my heart to see my baby in so much pain, knowing there was nothing I could do.
So, I got an urgent same day GP appointment. Again, as with the previous GPs (and Paediatrician), I was being told to use Calpol when needed. He could tell that I wasn’t happy with the outcome of the phone call and asked me why. My response was:
“You can hear him screaming. This is what he’s like all the time. He’s in pain. I can’t take much more, it’s massively affecting my mental health.”
At that point, he said that he would contact the hospital. They said to bring Luke in and the ‘on call’ Registrar would examine him.
I couldn’t get to the Children’s Ward quick enough. Deep down, I knew what she was going to say. I’d never shared my thoughts/ suspicions with anyone other than family. The feeling of not wanting to know what she was going to say, vs desperately wanting the help for Luke…
The Registrar came in to examine Luke. I gave her his history and told her that I had an idea as to what it was but I was very interested to know what she thought. I admitted that I thought that Luke had reflux but there was something more to it.
After examining Luke, she too agreed that he had bad reflux but there was also something more to it. She said a possible stroke or something neurological.
I asked if Luke had Cerebral Palsy and she indicated that this was her suspicion. FINALLY!!!! SOMEONE WAS LISTENING TO ME!! I no longer feel like that obsessive first time mum! Luke’s referral was fast tracked.
Several weeks later, we had an appointment with a Consultant Paediatrician. She too, examined Luke and listened to us. I felt a little underwhelmed at first because I wasn’t sure what the outcome of the appointment was. She did say that Luke had GDD (Global Development Delay) but that was all.
About an hour after we returned home, we had a phone call from the same Consultant Paediatrician. She said that she wanted us to bring Luke back so he could be admitted. She’d arranged an urgent EEG for the following morning. What a turnaround! We were also scheduled for an MRI, which we managed to have after the EEG.
The image of two paediatricians coming towards us to give us the results of the EEG was something I’ll never forget. The EEG confirmed that Luke had Infantile Spasms (a form of epilepsy) that was causing damage to his brain, the longer it went untreated. This had been going on for months. Luke was having seizures, which was being misdiagnosed as reflux. IS is so rare that a lot of medical professionals haven’t had any experience with it. How can something so damaging be so unknown?? Luke was given a high dose course of steroids immediately along with anti-seizure medication. These were given orally. As with his other meds, Luke didn’t take well to them and projectile vomited. My heart was breaking. I couldn’t take seeing my baby go through this anymore.
Since then, Luke has been diagnosed with CVI (Cerebral Vision Impairment) and Cerebral Palsy. CVI is so complex and hard to assess what can be seen and understood, especially at such a young age. We’re not sure what Luke’s vision is currently like, or what it will be like in the future but he definitely reacts to light. His MRI and ERG (which took place at Bradford Teaching Hospital has shown that his eyes are perfectly healthy, as are his visual pathways but the damage to his brain has meant that he is unable to process the information he receives. We are currently working with a Teacher of Visual Impairment and learning to see singular, solid colours against a black background.
Several months later and our days are filled with numerous medications, physiotherapy, CVI therapy, therapy chair time, stander time, sleeping (only in Mummy or Daddy’s arms) encouraging feeding etc. Luke is 16 months old and doesn’t have full head control or core strength to sit unaided. Luke is carried and held most of the day otherwise he becomes distressed.
On reflection, I now realise how much I actually do. As mothers, we’re so busy and on auto pilot that we just do these things. But let’s take a step back and really appreciate all the things we do.
The dedication that I have towards Luke is unreal. I would do anything for my little boy. They’re so many times when that feeling of wanting to hide away comes into my mind but I look at Luke and see such an incredible, strong boy who has conquered so much in such a small time. He’s such an inspiration, who has taught me so much and I will do anything I can to help him continue to shine.
From the very start, my little boy was always by my side. We went everywhere together. He was (and still is) my best friend. I love the bond we have, although this made it incredibly tough to leave him. I was so anxious. Even popping to the shops. It’s taken a lot for me to relax and after he had his first sleepover at Grandma’s house, I realised that a break was just what I needed. Yes, I still worried but we video-called and I could see that he was settled.
I realise now, how important ‘Mummy time’ is. It allows me to take some time out and come back, refreshed and ready to give Luke the energy and time he deserves. Taking time out of the day can sometimes be impossible. But my message to all the other amazing Mummies out there, always trust your instincts. No-one knows and loves your baby more than you. And finally; make sure, at least half an hour out of your day consists of ‘Mummy time’. You deserve it and so does your little one.
Happy Mother’s Day!
A big thank you to Natalie for submitting this story about her beautiful baby boy Luke. It has a really important message to all parents, with a special nod to all the warrior Mummy’s raising children with complex needs. Natalie has a page dedicated to creating accessible books for Luke and also shares updates of how he is progressing called Luke’s Journey, you can find it by clicking here!
Here is the new Mother’s Day themed book Natalie has for Luke – if you are interested in finding more inspiration to create your own at home please visit the page:
Visit Luke’s Journey on Facebook
Visit Crafty_cvi_mummy on Instagram
Learn more about accessible literature here