I recently connected with a woman named Amanda Bate on Twitter. She’s a freelance copywriter, social media marketer, a Crohn’s warrior and a mom from the United Kingdom. Amanda was blindsided by the diagnosis of Crohn’s disease after giving birth to her son, Matthew. She sheds light on what it’s like to raise a child, while battling an invisible, chronic illness. This week, it’s all about Amanda’s story. I know it will inspire you, just like it’s inspired me:
School’s out for summer and we’re busy planning days out, trips to the cinema, walks in the park – you know the usual mum and son stuff. Fourteen years ago I never imagined life returning to some kind of normal – so this is a big deal to me.
Parenthood is full of the unknown, mostly exciting, sometimes scary. But the one thing every mum and dad have in common is the change in lifestyle. We adapt to having a new person in our lives. We learn new skills, learn we can love more, learn how to teach. Life is never going to be the same. It’s going to be wonderful.
Along Came Crohn’s
When Crohn’s came into my life it threw my plans for motherhood left, right and center – just like bowling a strike, only there were no whoops of joy. During my pregnancy I grew ill, experiencing inexplicable pain. Steroids stabilized me until Matthew was born, then invasive tests confirmed that I was suffering from this chronic disease. I had to adapt to life with a new baby and an illness I knew nothing about.
My body struggled with the pregnancy and Matthew was born six weeks early September 25, 2003. He spent his first weeks in an incubator in the neonatal department. My symptoms got worse and I was admitted to another ward. I was in the same hospital as Matthew, but to me it seemed I was 100 miles away. Someone else was watching over him – that wasn’t part of my plan.
Talk About Emotional
Crohn’s is stubborn and awkward when it comes to drugs – some work for a while, others don’t work at all. Getting the medication right took time. Oral drugs weren’t doing the trick, so I reluctantly turned into a pin cushion. My body was being treated, but what about the negative thoughts in my head? It became apparent that I needed counseling, I was spiraling into a dark place… all triggered by guilt. I wasn’t the mum I wanted to be, I believed I wasn’t going to be good enough.
My amazing counselor lifted me from that dark place and made me understand what really matters. So what if I didn’t have the strength to go to the park, to push the swing, to race to the top of the slide – all a child needs is fun, laughter, joy and love.
As Matthew grew so did my understanding of Crohn’s. Matthew has been with me every step of the way. He is my reason to keep going, to fight, to get stronger. He came to every appointment with me, every blood test, visited me when I had to stay in hospital, and kissed my scars after surgery.
My doctor involved Matthew and gave him the same job to do at every appointment; he loved our visits – glad one of us did! When I started to self-inject medication at home he would help prep the area and watch with fascination. To him, this was normal. I was normal.
On my bad days we’d invite teddies to a picnic on the lounge floor, snuggle and read together. We were incredibly happy.
I never hid Crohn’s from Matthew, there was no point. It was important to me that he knew why we were a little different, why some days he had to be gentle with me and let me rest. I explained as soon as I knew he could understand that my immune system is faulty and thinks my guts don’t belong to me – we make fun of it – silly immune system!
The more we learn about this disease, the less scary it becomes.
So here I am 14 years later with a full-time job, hobbies, and lots of time for my family. Matthew, now a tall teenager, has watched me grow stronger. And there was me worrying I wasn’t going to be good enough – I’m a mum he’s proud of!
Matthew has run the Junior Tough Mudder and I’ve ran the Manchester 10k in scorching heat, both to raise money for Crohn’s and Colitis UK. At the start of our journey we were both finding our feet … just look at us now!
Crohn’s Is Our Teacher
Together Crohn’s has taught us not to judge, to care, to listen, to understand, to be patient. But most of all to enjoy life!