I’m Holly, I’m 23 and I’m a single parent to a little girl called Poppy who is four. To look at her (now) she’s a healthy, active child. But it wasn’t always like that. You see Poppy was born with a life threatening Congenital Heart Defect.
It led to two open heart surgeries, over 100 nights in hospital, a nasal feeding tube, developmental and growth issues, and down the line a long-term feeding tube placed directly into her stomach as well. Not to mention the blocked bowel due to feeding tube slippage and a new tube!
All of that is behind us, she eats and she’s healthy and she hasn’t been admitted to hospital since 2015, but her journey isn’t done yet.
She still needs at least one more open-heart surgery before her teens, and MAY need more surgery in adulthood. And she’ll be on medication her entire life. But it is what is.
We’ve made it this far, we can make it the rest of the way.
One thing that has made this journey bearable is the people who have helped us get this far. The friends who have stood by us.
I know if your child has typical health needs, it can be a bit of a minefield dealing with our “normal”, so I wrote this little guide based on mine and Poppy’s experiences.
Do… treat my child the same: No matter what a child with health issues is going through, and no matter what their difficulties are, they are still children.
Sometimes yes, they need a little help, and sometimes they need developmentally appropriate toys…but just play with them and treat them as normal. It’s all we want for them as parents, and all they want as well.
Don’t… let my child’s illness define them: Children with health needs aren’t who they are because of their diagnoses, they are who they are in spite of it.
Do… offer to learn my child’s cares: Children with health issues often need a lot of extra supervision, especially when they have “attachments” (Feeding tubes, breathing apparatus etc) because attachments can unfortunately slip, or be pulled out in a lot of cases.
If your friend’s child has attachments offer to learn about them and learn to use them when you visit.
It takes some of the pressure off us and allows us to shower or clean without having to drag our child around the house with us. And honestly, sometimes it’s just nice to be able to switch off for an hour!
Don’t… stop seeing us: Being a parent to a child with health needs is lonely and isolating at times.
Going out often involves a lot of pre-planning and pre-packing. Spare tubes, spare feeds, emergency kits, medications…and then all the baby stuff…and then the baby and the pram etc.
Sometimes, going out to crowded places is too risky because of the number of bugs involved.
If we say we can’t come out, please just ask if you can come in. We do want to see you, I promise. It’s just hard sometimes!
Do… visit when my child is admitted to hospital: Hospital stays aren’t pleasant at all.
They can be stressful and scary, but most of all they’re just boring and lonely. We really appreciate visits of any form, it gives us an opportunity to socialise, and takes our mind away from the grim surroundings and medical talk!
Don’t… be afraid to ask questions: If you have questions ask us!
Honestly, it’s not an issue, the only way we can learn about something new is to ask, and we’re not afraid to tell you if there’s something we don’t want to talk about.
Although that won’t happen often!
Read more advice from other young parents on the links below: