Isolated from the World
Isolated from the World.
Firstly I want to make sure that I’m making it perfectly clear that I love our kids. I love them so much and I am so proud to be their mum. They are the cutest, cheekiest, most hilarious little people ever and they make me so happy everyday. But that doesn’t mean that I don’t have times where being a CF, twin mummy doesn’t make me feel completely isolated from the world.
At the Beginning.
I was so excited to be a mother. It was something that I had longed for for such a long time. I had looked after so many other children as an early years educator, but I really wanted to have our own. This made it so much harder for me when the start to motherhood was not what I had expected.
Jumping Ahead.
I’m going to skip past the bed rest, the premature twins, the Cystic Fibrosis diagnosis, the 4 week hospital admissions where we were all split up (when the babies were only a few months old), the possible Cerebral Palsy diagnosis and when I collapsed in a heap and ended up hospitalised myself….and jump to the now.
Now we are doing well. The kids are happy, we have a great routine, they sleep through the night, but some days are still hard. Not hard necessarily because the kids are having a bad day, but because I feel lonely. Yes I’m never alone, but sometimes I just feel so isolated from the world.
Getting out and about with Twins.
I understand that lots of people have more than one child. It’s not just families of twins (or more) that need to be super organised when leaving the house. It gets especially tricky when you’re on your own and are outnumbered by the kids. I do find myself wondering though; is it harder to have two children at the same age, or two children of different ages? I will never know….
What I do know is; getting out of the house with two babies is hard work. It’s not as simple as chucking in some nappies and a bottle and being able to hold one little baby when they become unsettled. If I didn’t have someone with me, I didn’t leave the house. It was too hard. It gave me such anxiety.
Getting out on my own now is manageable. I will admit, I don’t do it very often, but when I do, I do feel pretty proud of myself. It is getting easier as they’re getting older. I don’t need to worry about timing outings around bottles and naps anymore, but now we’re running into new challenges. I guess that’ll be the case for every stage of parenthood.
Twins + CF
In all that talk about getting out with twins, I didn’t even think about the additional CF things. Not only did I need to pack bottles, formula, nappies and all the other bits and pieces you have to take with you for two babies, I had to take all of Norah’s extra stuff. I had to pack her enzymes, puree apple, plastic spoons, syringes, salt, hand sanitiser and Losec. Now, that’s just second nature to me. It’s ‘normal’ and I can organise it quickly. Then, when they were still babies, just thinking about that was a big enough reason for me not to leave the house. It scared me and it was unfair.
Feeling Isolated from the World because of CF.
As I write this, I’m realising more and more that it’s not the twin thing that makes me feel so isolated from the world (now that they’re a little older), its Cystic Fibrosis. One of the first pieces of advice we were given from the hospital when Norah was diagnosed, was to let her live a normal life. That is so very hard to do when it it’s the health of your own daughter that you are talking about. When the ‘grey’ area of what is safe and what isn’t is just so huge. It’s often suffocating.
Germs.
Germs are everywhere, there’s no escaping that and I know that. I’m not silly. But… I worked in childcare for nearly half my life before we had the twins and that means that most of my friends still work in childcare. We all had kids close together and the plan was to bring them all to work and watch them grow up together. And then there was Cystic Fibrosis.
Not only do we feel uncomfortable putting Norah in care, but so often the children we are meant to be having playdates with are sick. They go to daycare and they pick up all those scary bugs that could do permanent damage to Norah’s fragile lungs. I worked in the industry long enough to know that unfortunately children do go to care sick, their parents have to work, the educators get sick and they still have to work. it’s a vicious cycle, which is frustrating to most, but could be life threatening to Norah.
I used to see my friends 5 days a week. We’d even go out for dinners or catch up on the weekends outside of work. That part of my life was cut short suddenly and even after 2 years, when I think about it, it makes me teary. I don’t have mummy friends that I can be with often and our kids aren’t growing up with other children.
I know that not all CF families live like this and that others take that advice from the hospital and live a ‘normal’ life. Hopefully in time we will feel more comfortable to do those things too. It just doesn’t help that my circle of friends are mostly from daycare.
Adjustment Disorder.
I was labelled with adjustment disorder when the twins were only a few months old. All that time ago when I longed for our family, I had a vision of what that might look like. I watched my pregnant friends work up until a couple of days before they had their child. They had one healthy baby and they were able to take the baby home from the hospital with them. My friends took their babies to mother’s groups and swimming lessons. I missed out. This was due to a mixture of both premature twins and Cystic Fibrosis.
Back then I was so worried about how Norah’s diagnosis was going to affect our lives. I was upset by the things we weren’t going to be able to do or the extra things that were put into our lives that others don’t have to think about. I guess now I am adjusting. We have our own ‘normal’. Doing physio, counting fats, going to the hospital and worrying about germs has just fitted into everyday. I am no longer worried about how Cystic Fibrosis affects what our life was or could have been, but more worried about what Norah is going to have to go through in her life. I am worried about keeping her healthy, not what I am missing out on. That doesn’t stop the feeling of being isolated though. That doesn’t stop me sometimes wishing it was different and at times I still find myself asking, “Why Norah?”
