For many parents, the time around pre-school is filled with positive memories, new friends and rewarding interactions with our children as they grow. However, some parents’ experiences are different due to their children’s health complications. Here Gemma tells us about her experience, and how our Little Stars group helped her develop her own treasured memories.
You picture how you’re going to be as a mum before it happens… and it suddenly wasn’t the picture I expected. My daughter is two and a half now and spent a lot of time in hospital when she was born with a heart condition and a serious abdominal condition.
She was premature as well, which was difficult as the surgeons told me she was the smallest baby they’d ever worked on and, although the surgery went well, it was a lot for her body to take, and she was knocked out in the intensive care unit for months.
By the time she’d got home she’d missed a lot of the development time children should go through and she was also diagnosed with hypotonia, which means she’s got low muscle tone and is really flexible – which has had the long-term effect of preventing her walking even now – so she had to see a physio about that.
Getting her home was amazing and scary at the same time… she’d been in and out of hospital so when we finally made it home my partner and I were thinking “is she finally ok?”
When she was in the neonatal intensive care unit it was so normal for her to be monitored all the time, and it was horrible not to know about it at home – so much so that we ended up getting a home monitor so we could check her oxygen level and her heart rate.
She was on a lot of medications and was tube fed for about the first 18 months but, even so, I don’t think it took long for us to fall into a routine. The 18-month milestone…that was huge for us; getting her tube out. It was really difficult, but it’s harder looking back now than when I was going through it.
At the time, it was just like I was on autopilot, doing what I had to, but it’s a bit sadder when you’re looking back on it all – I did feel lonely quite a lot of the time.
Finding the right support group for us
You picture how you’re going to be as a mum before it happens; I knew I would stop working for a while after her birth and I wanted to be the one who would take her to the groups and do all those things with her and it suddenly wasn’t the picture I expected. We worried about taking her, and it was sad that we had to keep her sheltered.
I took her to a few baby groups to try but, because she was far behind in development, I felt like she would be completely out of place at them. Also, because of her health she ends up in hospital if she gets a cold, so we worried about taking her, and it was sad that we had to keep her sheltered.
Occupational Therapy referred us to Family Action’s 0-19 Child and Family Support service during this time to help with play. At the time she couldn’t hold her head up or sit up or roll over so it was trying to find things she could play with and get something out of.
I had mixed feelings about the sessions initially – I was really excited because I wanted help bringing the best out in my daughter, but she still had a lot of appointments, and we didn’t want another one. But we found that it helped so much and ended up being the best thing for her.
The sessions were one on one, and they were great, as Family Action’s Child and Family Support Coordinator just felt like a friend giving you good advice. She would bring different sensory things and games which were designed to help my daughter with her hand eye coordination and fingers.
It was hard at first as when we first brought my daughter in she was scared of everyone, as the majority of people she’d seen were nurses or doctors and they were all messing with her. She was really quite isolated, and it took her a while to even warm to my mum and dad. But the Support Coordinator was so patient and over time my daughter realised that she wouldn’t get hurt and could have fun; it helped her confidence and even helped around other people because she had that experience.
Little Stars – the place I feel most comfortable
I was quite excited by the idea of joining Little Stars support group, and nervous… and then only one other family turned up at the first session in the end, as I think a lot of other parents had hospital appointments. Although I was sad that more people hadn’t been able to come, it was nicer for me that it was quiet as I got the chance to talk to another carer about things like feeding tubes.
Our Little Stars group has remained intimate – I think the most there’s been there has been five, but that’s due to our situation – I’ve missed a couple recently due to my daughter being poorly or having another procedure.
This is the place I feel most comfortable. It’s a free group so my daughter can go off and explore what she wants to, and there are different parts set up for messy play and sensory stuff. But for the parents it’s good because it helps get people out of the house when they might struggle to normally.
It’s just a good place for her to go out and have an adventure in a safer environment. It’s a great opportunity for the children to see others who might have difficulties like they do, and it’s just a good place for her to go out and have an adventure in a safer environment.
I think the nerves at the beginning are what stops people going to sessions like this but once you’ve gone to the first one you just see how nice it is for them and you realise there’s nothing you should have been worried about really. It’s FOR her.
