Parenting pre-stoma surgery: my daughter has always known me as some degree of poorly
I’m a parent of a 3 year old little girl called Lyra-Beth (fondly referred to as Ra-Ra). For her entire life, I have been varying degrees of poorly. When she was young, I could be found crawling around on all fours, crying, to try and look after her through the debilitating pain of Ulcerative Colitis brutally attacking my J-pouch - definitely not how I envisioned being a parent! But, before I had my lifesaving stoma surgery, it had to be done.
I always preferred to suffer through the day whilst I was parenting on my own, rather than take my morphine and risk an accident happening to her. I remember one time, sat on my kitchen floor rocking in pain, and desperately needing the next 10 minutes to fly by until my husband (00Steve) came home from work. Ra-Ra was sat with me and gave me a kiss on my tummy; we all know the amazing power of healing kisses from a loved one.
Choosing to have stoma surgery gave me time to plan for preparing my daughter too
As I made the decision to have my surgery myself, I was lucky enough to have plenty of time to think carefully about my parenting plan of action too. I bought an Ostobear from Stomawise (teddy bears with little stomas on their tummies and a detachable bag, designed for children having stoma surgery). What is really cute about these bears is you can buy one and have it donated to a child that needs it. So I figured it would be a great tool to use to explain my surgery to Ra-Ra and help her to come to terms with it. Even though she was only 2 at the time, I sat her down and told her that Mummy had to have a bag on her tummy to poop in like her teddy (which she calls Mummy Bear)! Considering she was super little at the time, I felt she took it really well and did seem to understand what was going to happen.
I was lucky enough to have family helping out after my surgery- especially my parents and two of 00Steve’s brothers and their partners. I have to take a moment to thank them. When 00Steve had to go back to work, my parents looked after Ra-Ra and me, practically every day, for at least a month.
Starting to feel like a proper parent again – being able to do things with my daughter
When I started feeling better, my Mam would take us for days out to the sea life centre, the local woods and historical sites. This not only helped me become more mobile but, more importantly, I started to feel like a proper parent again. I could do things with Ra-Ra myself, at last, without having to say “no baby, go to your dad” or “not now, Mummy’s in too much pain” - which makes you feel like a total failure.
I’ve been able to keep promises I had made to her before my surgery. I took her up our local “mountain”, both with 00Steve and by myself, we’ve been hiking and even for a weekend away in the lakes. This is despite the everlasting fatigue I seem to have gained as a side effect from my surgery…I haven’t let it stop me. When the fatigue does get the better of me, it’s given me extra time to snuggle and read to Ra-Ra, recite songs and the alphabet. Letting her perform to me has enabled me to see just how much flair she has with singing and drama. Although granted, if I hear “Let It Go” one more time, I may go insane!
Becoming a parent with an ostomy has given me some hilarious and heart-warming moments. Ra-Ra has posed next to me whilst I have taken ostomy-themed photos for my blog; once home from my surgery she popped my slippers on and covered me in my blanket before gingerly snuggling with me. But I think her telling her dad he is the one with the stinky bum, not me, is the best experience of the bunch!
Learning to parent both before and after stoma surgery has definitely taught me a lot about myself as a parent…and about my daughter as her own person.