September's guest bloggers are focusing on parenthood. This week, disability campaigner talks about being a mum with Crohn's Disease.
It took my (now) husband nearly six years to propose to me.
Why? Well, I have a very rare form of Crohn's Disease; on bad days I am bed ridden and have to take very powerful medication including a chemo style regime every two weeks. Doctors had no idea what effect this would have on an unborn child. So trying for a baby was not recommended.
As it became clearer and clearer that I was extremely unwell and unlikely to get any better, my partner found himself trapped by the most terrible decision : marry the woman he loved, but accept he would never have children or choose children but lose me.
One night, right before bed, he asked me to be his wife. Just like that. He finally explained the agonising dilemma he'd had, and told me he'd decided I was too important to lose. It wasn't a Caribbean beach or a fancy dinner, but nothing could be more romantic than knowing you are the most crucial thing in someone's life.
A few years later, the universe sprinkled a little magic dust. There was a short window following surgery, where I wasn't on any strong medication and - whether by miracle or accident - I fell pregnant. Despite all the surgery, meds and malnutrition I had experienced over the years, that determined spark of life chose me.
Pregnancy brought a magic of its own. It is quite common for women with Crohn's to improve drastically during this period ... and I felt amazing. I was healthy, my steroid-weakened hair shone and I had a level of energy I'd never known before.
Post pregnancy, even the act of breastfeeding my baby boy seemed to keep the magic going.
But, oh dear, when I stopped feeding my child, the hormones melted away and Crohn's came back with a vengeance. It was only then that the reality of being a mum with a disability set in.
When I finished breast feeding my second child (yes, magic can strike twice...) the reaction was so violent that I was rushed almost immediately into hospital.
My tiny perfect baby boy went from the comfort and security of the breast to nothing. No mum to sing him to sleep - I had been taken to a specialist centre 130 miles away.
My 11 month old son suddenly had to learn to drink cow's milk from a cup. He was forced to rely on nana and nanny and daddy as stand ins for me.
But I was so ill. I was delirious and dosed up; I could barely speak, clinging so fiercely to life that nothing else mattered. I could only just feel the guilt remotely, as though behind glass. I saw my boys just twice in 6 weeks.
Finally, after major bowel surgery and the added complications of a stroke, I spoke to my four year old on the phone one evening. In a quiet voice he whispered "mummy, I don't think I can do this anymore."
I made my husband drive me home to the children there and then.
Everyday life with a disability and two lively young boys is harder than I could ever have known. I don't get to nap when fatigue drains the colour from my face. I can't pick them up very often now when they scrape their knees; they're just too big and I'm too weak.
I often have to rely on others to do things for my children, things I want to do, and my house is always a chaotic jumble. But the joy of every single day makes it all worth it. We adapt, we laugh and we never waste a "Mummy good day".
Blogs I like
, a campaign blog against benefits cuts.
, a long-running blog concerned with all things disability.
, by a mum, about her own disabilities and her son who has autism.
• Crohn's disease is a long-term illness that causes inflammation in the gut. Read more about it on the Βι¶ΉΤΌΕΔ Health website.
| 12:47 UK time, Friday, 30 September 2011
