Being Enough… — Our Nemaline Journey

Being a mum is hard work, it’s demanding but it’s so rewarding. Being a mum of two amazing girls means everything to me, but I have to be two types of ‘mum’.

Am I enough? Am I doing enough?. I feel guilty if Penelope is on her iPad longer than she should, or Amelia has mainly been in her cot all day, as I can’t move her too much for fear of her throwing up. Am I doing what other mums do? Should I be doing more? It’s never ending this constant worry of being a mum. I feel so guilty when Penelope wants me to play outside or hide in her tent and play in her car, I can’t be as carefree as I would like too. I need to be near Amelia in case she starts to aspirate or choke. It is really tough but then I need to remember the basics?. Are my children loved? Yes. Are they happy? Yes! This is all they need.

I have had a bit of a downward spiral in recent weeks, thinking that I am a failure to my family. I used to think that my body failed me while I was pregnant with Amelia, I would think it’s my fault that she has this condition. It took me a while to stop thinking like that, but I know now there is nothing we could have done to stop Amelia having this condition. I remember thinking I had to have another child because Amelia wasn’t ‘normal’. Now I feel horrific for even thinking like that, but there are so many emotions when you are going through the NICU stint that is like a surreal world you are thrown into. Now it will not be as easy to have another child. We will have to go through genetic counselling if we ever want to have another child. It’s not as simple as before when we could just say ‘oh lets try’. Every time we get pregnant there is a 25% chance that our child will have the same condition as Amelia. The only way we could be 100% be sure that any child of ours will not inherit these genes is if we were to go through IVF. I couldn’t put my family and I through an Amniocentesis at 20 weeks to be told that it has happened again. I am strong but I am not strong enough to go through it all again. It breaks my heart that I can’t just get pregnant like I did with the girls, I feel like a complete failure. As much as I know that I am not a failure, it doesn’t stop me from thinking it. I know that there are some who would just try again and see what happens, but my husband and I cannot do that. I couldn’t go through it again. We have our girls and we are so grateful for them.

Penelope’s needs are different to Amelia’s, but the one thing they both need is my love, and that they have in abundance. It can be really tough navigating my way through motherhood with a child who needs a lot of help and a toddler who needs a lot of attention. I can never switch off, there is always something to be done, or I will find something that needs to be done because if I am left alone with my own thoughts it can get really dark.
My mental health has been pretty bad in recent months, it’s very difficult to be present, I have to really remind myself. It’s that ‘shadow of death’ that I’ve spoken about before, it never leaves, it really is like an unwanted guest. I worry all the time, about Amelia and Penelope and how we will be when that time comes.

Every time I see siblings playing together and laughing and fighting, it breaks my heart. Penelope will never have that with Amelia, she will have to grow up a lot sooner than most. My girls won’t be running around together, chasing each other. They won’t have all of their lives to be together and it completely breaks my heart.

So I am constantly trying to come up with things they can do together, Penelope loves her little sister so much, she helps with her tapes and her feeding. She always wants to kiss her and care for her. There is so much love and admiration between them, they really are best friends. This is my happy place when I have them both together, but it can take me a while to realise I am there.
When I see this it completely fills my heart with pure love and joy, but then I find myself in the dark place again. How is this going to be for Penelope? How can we explain to her, when the time comes, that Amelia won’t be here. Honestly it’s a constant battle that Paul and I face every day.

I really can’t wait until we can have some socially distant days out as a family of four this summer, just to make as many memories as we can.