Hayley has two beautiful daughters with PRS, Amelia and Grace. The below letter captures Hayley's thoughts and feelings about how tough the everyday aspects journey can be, and is something that so many PRS parents can relate to.
This is a letter I have written to myself and thought I’d share it, so here goes….
It’s days like today that I grieve for a ‘normal’ baby. I am extremely grateful that my baby is alive and beautiful and I wouldn’t change a single thing – life just sucks today, and that’s okay.
As I sit and listen to other mums talk about sore nipples from breastfeeding and troubles settling their babies, or even the happiness they express when their child is eating, it’s times like these that I can’t help but feel a little sad – jealous even. I sometimes wish I too had those problems – not the problems of projectile vomiting at every feed, reinserting tubes (sometimes daily) and listening to every noise when my baby is breathing to make sure she is okay and not obstructing.
Instead I make sure her breathing isn’t compromised while she tries so hard to drink 10mls from a ‘special’ bottle. Making sure she still gains weight every week because of the energy it takes just for her to breathe. I calculate – to the exact ml – how much to feed my baby each day.
While you may go out with a nappy bag and a bottle- I go out with tubes, syringes, PH strips and a breathing monitor. I can’t travel alone with my baby in the car because if she stops breathing, then how will I know? Instead I put that responsibility on my eight-year-old and six-year-old. All the baby photos I take feature tubes and tape attached to her face.
You don’t see that I’ve cried all morning, dreading coming out with a tube-fed baby who has been unwell. Instead you see me smiling, with my makeup on and hair neatly brushed. Then when I go, after struggling with my baby while out, I quietly cry to myself – just because that was hard.
While you glance over to me tube feeding my baby girl, not being able to nurse her because I don’t have a free hand, you give me a sympathetic smile which makes me just that little bit sadder.
Don’t get me wrong, I wouldn’t wish an unwell baby on anyone and I am thrilled that yours is happy and healthy, but for us, we just feel that little bit more isolated. My days are filled with appointments, tube feeding schedules and the extremely fine line I walk between starving my baby enough to eat but still ensuring she puts on enough weight for surgery.
At night you will snuggle up to your husband after a long day with your baby, while I sleep in a separate room to mine, listening to my baby’s breathing. This will be the way it is for the next two years.
Even though life has dealt us this card twice, it’s days like today I don’t want to hear ‘things happen for a reason’ or ‘this will only make you stronger’ or ‘life only gives you what you can handle’. While they may seem like the right things to say, all I want is a listening ear and for someone to say it’s okay – it’s okay to feel the way I feel. And some days life just sucks.
What can help?
Even when it looks like a PRS parent has it all together, it's really important to understand how difficult everyday life can be.
Ask questions, really listen to the answers and empathise. Don't try to solve the unsolvable problems, and try to avoid saying things that - while well intended - may sound dismissive. Instead, ask what you can do to help. Sometimes just knowing help is available makes all the difference.