Graysen's Story
Graysen is three-years-old and is such a happy boy. He almost never cries and he’s a really sociable little fella, so curious about the world and eager to explore. My partner Vali and I love Graysen with all our hearts, and every day it feels like such a miracle to have him with us. The first three years of his life have been such a rollercoaster, there have been times where we didn’t know if he would make it. You see, Graysen was born unexpectedly two days before Christmas in 2019 at just 26 weeks gestation – more than three months early. He’s faced some very serious health issues and spent the first six months of his life in our nearby Neonatal Intensive Care Unit (NICU) in Cork. He came home briefly in the summer of 2020, but before we knew it, he needed more urgent and long-term care.
That’s when we went into Children’s Health Ireland at Crumlin – a truly amazing place. Graysen ended up spending six full months there, during which my partner Vali and I became full-time residents too. That whole year was such a scary time. Graysen is my first child, and my hopes and dreams for his early years definitely hadn’t included all that fear and worry, all those confused nights in hospital. It was heart-breaking to see how tiny and vulnerable he was, and how little I could do to help him.
The doctors in Crumlin found that many of Graysen’s most serious issues stemmed from his narrow airway. This meant his developing brain couldn’t get enough oxygen and he has developed cerebral palsy. It also led to deeply distressing incidents, both in Cork and in Crumlin, where Graysen ‘crashed and coded’ in the hospital – truly terrifying moments where he had to be resuscitated. There was such a dizzying range of help that Graysen needed, and every single day the fantastic team there blew us away with how dedicated they were. I’ll never forget their kindness – they understood what we were going through, and their compassion and reassurance stays with us to this day.
Children's Health Ireland at Crumlin became home for six months!
I’ve lost count of the number of ways the staff in Crumlin helped Graysen. The surgical team gave him the tracheostomy he needed to breathe properly. The ophthalmologists have worked with his vision, the cardiac specialists have examined his heart – there’s hardly an area of the hospital that hasn’t worked with him!
And it goes way beyond the medical help. There are so many caring therapy staff to help make the experience less scary. Graysen loved the play therapists and music therapists. I have a memory of him being on the ventilator in ICU – very, very sick – and the music therapist coming in and playing her guitar and singing songs over him. It’s amazing how a beautiful moment like that can make you feel less afraid.
Vali and I have had so much training from the team in Crumlin in how to care for Graysen at home, especially how to tend to his tracheostomy – keeping it clean and changing it when necessary. I still find that so daunting, I have to count to three before I do it! But I’ve been trained by the best which gives me real confidence.
Every time we go back to Crumlin for check- ups and appointments I get this rush of memories and emotions. Some of them are difficult, but there are plenty of warm ones too, It’s wonderful to see the staff, all their warm welcoming smiles. I love seeing them again. You never forget the people who have really helped you!
Throughout our journey with Graysen, I have met countless other parents and children whose lives have been changed by Children’s Health Ireland hospitals, like Crumlin and Temple Street. And I know there are so many more out there who may need this level of care in the future.
We’re so grateful to have Graysen at home with us now, we’ll do whatever we need too to keep him home. Thankfully with age he is getting bigger and healthier which means he’s able to manage a lot more at home. We love going on adventures as a family, we’re often at the Zoo, and the beach over summer and swimming. Graysen is so social, he loves coming to town with us and going to Tesco and Penneys!
I’d also like to add in case there are parents in the same situation as us reading this – just know you’re not alone! There have been families that came before you and there will be families that come after you who are all in the similar situation and we all believed we couldn’t do it and here we are home two years now, so it’s all worth it and to just believe in yourself you know what’s best for your child! – Rachel & Vali, Graysen’s Parents
