"My beautiful boy..
..you have a long road ahead. You were born with the strength of a warrior and the fight to overcome more than most do in their whole lives within the first few years of life. You need stoma surgery like Mummy did when she was born. The word stoma is the opening made in the tummy to divert stool out of the intestine. It is like a rose bud sitting proudly on top of your skin. It moves sometimes like a wriggly worm and can be a bit naughty and poop when you don’t want it too. You are the same as Mummy you see. We were both born with Hirschsprung's Disease. It is a rarer bowel disease than most and not many people talk about it. Mummy talks rather a lot and I have a sneaky feeling you will be the same! I will use my voice to raise awareness and make sure any stigma people may have about your special difference will be challenged.
I want you to know how proud I am already.
You won’t think it at the time but it will give you so much freedom. You can make lots of friends, play in the park and climb, run and roll down the hills. The tubby hill in school will become your favourite. You will need to make sure you don’t forget about your little stoma and if you get the dreaded itch signalling a leak, ask me or the adult looking after you at school. Problems will occur but that’s ok, because the stoma is what helps us get rid of our waste the same as others use their bottom. It's just a different way of doing something and it makes life more interesting that way. As you grow up you will meet lots of people that have differences like us. Some might have glasses, braces, missing limbs, invisible illnesses like ours that you can’t see. We all have something and this just happens to be ours.
But we both have it and we are in it together.
We need to make sure we are drinking enough fluids, staying away from foods that might make our tummies poorly, and rest when our bodies feel tired. I will look after your stoma until you are ready to try doing it yourself. You will come to trust and feel safe with friends mummies who become our support network and provide distraction and counsel for us both during the hard days. We will be so grateful to have them in our lives. I will start sharing our story on Instagram and meet other ostomates who have a bag like us doing the most amazing things all over the world. Our friend Ru runs a lot, Angelina designs jeans, and some lovely people at Pelican and Comfizz will ask me if I would like to share our story and support others in accepting their stomas. One day you will help other poorly children in running for the hospital in a Superhero Dash and raise lots of money for charity and Batman might run with you! You will be so proud wearing a winners t-shirt and medal!
But still my little man you will have no idea how incredible you are. How proud you make me and the rest of our family. When you were born we were all huddled around the cot, a few hours old and worried for your future. But the future's so bright. It is glowing with the light of a trillion stars. Your teacher will tell me one day how you have lots of friends and you love being in school. You won’t have to stop playing because of your bag, you will be playing BECAUSE you have a bag. You will have some lovely Teaching Assistants who will help you be in school and enable me to go to work.
We will both be in school and be happy and hopeful for the future.
Sometimes your bag will decide not to play ball. It might be because your skin decides it simply doesn’t react well to it anymore. You might have leaks and sore skin but I will find a new one and we will muddle through. There are lots of hard working people out there that are designing new bags all the time making them different colours and lovely and soft to wear. Our friends Owen and Claire at Pelican will plan a surprise factory tour and we will meet all the hard working people who spend every working day making the bags we come to rely on everyday. They will spoil you rotten and Claire will play Minecraft with you in the office while you run around looking for the baddies! You find joy in everything and make people smile. Keep being you, fighting, being loud, loving and cheeky my handsome boy. Mummy loves you always xxxxx
To my fellow Carers..
Watching your child put to sleep in the arms of a stranger as they usher you out of the aesthetic room and to go into theatre, is unfortunately something I am used to. Don’t get me wrong, it's not like I'm fine with it - quite the opposite. But I know the score, what they will do, how it works, and what they will say to me. I have done this 10 times now. That’s not counting the umpteen medical interventions that have been done while he is awake. The guilt I feel is unimaginable with my little ostomate inheriting his condition from me. It is something I will never make peace with. How could you? Watching your child suffer is one of life’s greatest cruelties. All the words, cups of tea and hugs won’t take that away. This has been our lives since our little man was born nearly 7 years ago. A few days old he had his first ostomy surgery. Weighing 7lb 2.5oz he was so precious and small. We all want our children to have similar traits to us, but this was one I did not want him to follow me with. There is little intervention for parents who have babies with the need for a stoma in the first few weeks of life. Unfortunately, most hospitals don’t have psychological support to help deal with such a shock if it wasn’t in fact inherited. If you have never seen a stoma or heard of one it can take a long time to take in and accept, before even thinking about how you will manage it in your everyday life. Be kind to yourself and reach out if you would like to talk. You are not alone."
Until next time, Rach x
Disclaimer: As always, this post is from our blogger, Rachel's, experience of living with an ostomy & Hirschsprung's Disease & from what she has researched. Nothing in our blog posts should be taken as medical advice. It's always best to consult a medical professional if you have queries or concerns.
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