If you’d asked me to describe our daily life with Jessica, I would have said it was pretty normal. All the things that came with having a child with a complex heart condition were just part of our everyday life. We did them without really thinking about them and never really noticed their impact. It was just our normal. It wasn’t until we lost Jessica that I really noticed how different life with her was, how many little everyday things suddenly disappeared from our lives and how much I miss them.
For six and a half years, we had a daily routine of giving medication. For most of that time it was four times a day. It was an instinctive part of our routine. Occasionally when there were extra meds (antibiotics or inhalers) it became so complicated, I’d have to write it all out and put it on the fridge to keep track of it all though. It seems so strange that we no longer need to give any meds. The little box of syringes and medications is still in the kitchen where it always was; the pouch with supplies for when out and about still in my bag. I have moments of feeling like I’ve forgotten to do something because I no longer have to give them. I also feel like I should be dropping repeat prescription forms in whenever I pass the doctors’ surgery.
There are other unexpected moments when the lack of meds for Jessica has an impact. For instance, I went to buy liquid paracetamol for Sophie and suddenly realised I could also buy ibuprofen for her if I wanted. Jessica wasn’t allowed ibuprofen due to being on aspirin. It was hard sometimes when she was unwell to not be able to give anything other than paracetamol as the effects would sometimes wear off before I could give the next dose. We never had ibuprofen in the house as I worried that I might give the wrong thing when sleep deprived. With other over-the-counter meds, I always had to check whether they were ok to take with her other medications. None of that is part of our normal life anymore.
I miss pushing Jessica around in her buggy. The boot of our car seems so empty without it. Sometimes I still instinctively go to get it out. Then I realise that it’s not in the car anymore; that we no longer need it. During the last week of Jessica’s life I’d worked out how to fit it in the car if we had all seven seats up. I’d already thought about how we could use a sling for the new baby so we could manage getting out with a new baby and Jessica needing her buggy. I was happy that we could manage the changes needed with Peanut’s arrival. Now it all becomes simple. No need for extra seats up in the car and we can just use a baby buggy for Peanut.
I still look for the accessible route on days out; still notice when paths are not buggy-friendly. Each time I walk to preschool with Sophie, I remember how Jessica would be with me on the days she was off-school. I remember which bits of the pavement were hard work with her buggy and miss those walks with her. I miss tucking her blanket around her and making sure she was comfortable.
Grief has strange triggers sometimes. Seeing the disabled toilets was an unexpected one for me recently. I still sometimes think twice about which toilets I’m heading for when out and about on a family day out. I remember that last week on our holiday when Jessica noticed the disabled sign on the toilet door. She asked about the wheelchair on the sign and I explained that her buggy was her wheelchair. I still carry the radar key on my keys even though I don’t need it now. I guess it will still be useful after Peanut arrives for those times when the baby changing facilities end up being in a radar key controlled disabled toilet.
It’s strange to no longer have regular trips to various hospitals for check-ups, visits from the community nurse or open access to the children’s ward. I miss that part of our life; the familiarity and the reassurance of it all. It’s funny how you get so used to that environment and how safe it can feel.
The loss of our community
For seven years we were part of a community of other heart families. The loss of Jessica has also meant the loss of the heart family community to some extent. When you have a heart child and hear about a fellow heart family losing their child, it brings home that fear that constantly lurks at the back of your mind. Jessica’s death is particularly frightening for our heart family friends. It came suddenly and unexpectedly. Being faced with such a stark reminder that tomorrow is not promised is too hard for some to cope with. I understand that, but it is hard to lose friendships and to no longer feel part of that community in the way we once were.
At the same time, we’ve also become part of a new community – the one we never wanted to join, the one no-one wants to join. A community of bereaved parents. There are so many lovely people in this community and getting to know some of them has been helpful. I just miss being part of my old community too.
I haven’t been on a plane in over seven years. Jessica wasn’t able to fly due to her heart condition. In all honesty, I never missed it. We were happy with UK-based holidays or a road trip around France. Although this restriction had just been lifted post-Fontan, we hadn’t started to think about flying anywhere. We would have had to also check whether there were any extra considerations for Jessica, e.g. whether she might have needed to take oxygen. Now we could just fly somewhere on holiday without any extra things to think about; not to mention the fact that travel insurance suddenly becomes much easier to obtain too.
Camping is another one. We never went camping with Jessica. I was always worried about the difficulties with her regulating her temperature. She always got cold so easily and I wasn’t sure if we could keep her warm enough. This isn’t a worry with Sophie.
The loss of identity
Losing the restrictions we had has also come with a loss of identity. Am I still a heart mummy? Part of me tells me yes, I am, and I always will be. And yet, in many ways I am no longer a heart mummy. I am no longer a parent to a child with a complex medical condition. Nor am I a “normal” parent. Our life may now appear normal, but it isn’t normal and never will be normal. That emptiness that is forever there is invisible to those on the outside.
Other day to day considerations
As well as the things above, there are all the little day to day things that were just automatic. Always making sure I had extra layers for Jessica as well as spare clothes. Staying reasonably close to home during the day in case school phoned with any concerns. Constantly being aware of Jessica’s colour and energy levels and the little ways in which that had an impact on the activities we did (such as swimming).
Suddenly we have so much more freedom in our day to day life and I hate it. I never resented the restrictions we had and the removal of them is unsettling. The price for this freedom is too high. I would rather have the restrictions back; or even increased, if it still meant having Jessica.
Our daily life has changed in so many ways. We miss Jessica – her smile, her laughter, and the joy we brought to our lives but we also miss the little things that were part of our everyday life with her. We have a new normal to adjust to; a new normal to try to accept. Having to accept that new normal, and the freedom that comes with it, is incredibly hard to do.