My name is Hayley and I’m a mummy to four wonderful children. Our youngest has a rare genetic syndrome which at the moment is nameless as he is the only person in the world that they’re aware of with these certain genetics. This has caused him to aspirate on liquids (the feed going straight to his lungs), has caused him hypotonia and development delays as well as failure to thrive.
We have spent his whole life in and out of hospital and his future is completely uncertain all we know at the moment is that he will have a neurological disability for life, which is heartbreaking. He has all of his nutrition through a feeding tube and I want to shout from the rooftops how amazing he is and how this hasn’t stopped our lives. I’m currently writing a book to document our journey and after some really tough times in the beginning with a consultant accusing me of imagining all of this I think it’s really important for parents to go with their gut instinct or our little man would not be here today. I’m documenting our journey as writing is therapy for me.
I’ve taken the decision to not use my baby’s face in photos at the moment. He is the only child in the world at the moment with this rare genetic disorder. We want to tell our story our way rather than be hounded for him to be used as a case study.
It’s normal to grieve the life you thought you would have. You’ll grieve the milestones you were excited to celebrate at and things that are the norm to most parents - I grieved not being able to ever give him a bottle again. That grief is so important for you to move forward and focus. Just remember to keep moving forward with small steps at a time and celebrate every milestone no matter how small.
It’s so so important to have you time - a twenty minute run, a shopping trip on your own, having your nails done ... Anything that gives you five minutes to breathe.
It’s important to remember your partner is feeling everything you feel even if they are trying to be strong. Work hard to make sure you don’t allow the pressure to put cracks in your relationship. Remember you were a couple first and you have to work on it every single day. Don’t let your emotions build up!
Remember your other children are struggling too - they weren’t expecting it and they probably don’t enjoy spending so much time in hospital. This can often manifest its way through behaviour - children can’t always tell us exactly how they feel because sometimes they simply don’t know what they’re feeling. Remember to give them plenty of one on one time and try and keep their routine as normal as humanly possible
Remember you are doing your best. Even on days when you feel like a failure you are the best mummy or daddy for your baby. All your baby needs is to know you’re right there along side them through this journey.