Last week I was having a conversation with someone about emotions. Of course when Pudding was diagnosed with Hunter Syndrome I went through all of them – anger, guilt, desperation. I was drowning in the strongest emotions that I’d ever felt. When you first hear that your child has a condition that may kill him, your world comes to an end.
But now? When asked how I felt now, I was at a loss. My first reaction was ‘I’m fine.’ I’ve mentioned before the ‘new normal’. It is a phrase used to describe what happens to us after diagnosis. For a while everything is rocked, and then gradually we get used to our new life – it becomes normal.
Yes, on the surface of it I am fine. Life continues with its little triumphs and annoyances. I plan meals, pretend to be a superhero on the school run, tut at clothes left on the floor. Yet that isn’t really the full answer.
Hunter Syndrome bubbles along under everything. Even when I think it is all is going along swimmingly, the bumps are only hidden just under the surface. It doesn’t take much to make me wobble. Sometimes just a kind act lets the tears flow. And I know that I may have to get used to a new normal many times.
There are so many worries that beat around my head. Whether I give enough time and attention to Twiglet. Whether the clinical trial will have provable benefits and whether it will be made available as a treatment on the NHS. Whether the next general anesthetic will go well. Whether gene therapy will come in good time. Whether, if Pudding reaches adulthood, there will be the support in place that he is bound to need.
And yet… and yet because of the friendships I have made and the blogs I read I know what other parents have to deal with on a daily basis. We are luckier than many.
So it is sometimes a surprise to me when mums in the playground show amazement at our new normal. A normal that now includes regular prescriptions, weekly treatments, and trips to Manchester children’s hospital every month. And these are things that I am so grateful for, though none of it is ideal.
If I stopped to think about it too much myself, I’d probably be amazed too. And overwhelmed. And when there is shopping to be done, and washing, and a family to care for, overwhelmed would not be a good thing. I just couldn’t live with such heightened emotions for month after month after month. So for now I continue on this new road and try to look out for the bumps on the way. I’m still not entirely in control but hopefully I can steer around the worst of them.
How do I feel? It’s ….complicated.