The day after Michael was born I decided I had to get discharged from hospital as soon as possible, so I set about achieving the steps that I knew I had to take before they would let me go; take a shower, stop taking the hardcore medication, walk about a lot. I visited Michael for a few hours that day, but to be honest, it was all a haze of tears and snot and foggy head. I know we met the surgical team and the nurses who would be looking after him, but I couldn’t tell you what they said.
I also started breast pumping with vigour. My little darling couldn’t feed, but after the operation the hope was to tube feed him, so I needed to get my milk on. Having this job, this purpose, gave me a focus and stopped me from losing my mind I think.
On Day Three, The Fella and I and our two Mums squashed into the glass room that had been assigned to Michael and waited for him to be called for surgery. The doctors would be cutting out the blockages in Michael’s bowel, and connecting it to the top of his intestines. Even though Michael had this horrifyingly scary time ahead of him, he had already performed the first miracle of his life. Duodenal Atresia, this mouthful of a condition, is a mimic disorder, and often a child born with it will have other problems in their kidneys, heart and lungs. One third of all babies born with it have Down Syndrome. Michael was showing no signs of having any of the problems that we had been primed to expect – this nugget of positivity got us through those first days.
It was the longest day of our lives. When the time came for him to go to theatre I honestly thought that I would cease to exist. Jessy, our amazing nurse, wrapped his impossibly tiny body in a surgical gown as the Fella and I looked on, incapable of words. As she scooped him up, along with his lines and tubes and told us it was time to go we just cried. There’s no other way to say it. We clung to each other, heaving ugly tears. Ugly, ugly tears. Our Mums waited outside the room, and as I bawled into the Fella’s shoulder I caught a glimpse of them, both facing away from us, both sets of shoulders shaking with the tears we could not see.
We followed Jessy down to theatre and amidst more crying and shaking, we handed our son over to the surgical team and began the longest wait of our lives. The surgical wing in Crumlin is a horror show of parents bawling in corners and the tiniest of children crying as their parents say goodbye, trying to be strong.
Four hours have never been as long. When they wheeled him back from theatre, the teensiest thing on this giant gurney, the relief was palpable. Yes, he had drains everywhere, but he looked calm, and so so peaceful. We were on the road.
Michael spent twenty one days in Crumlin Hospital. During that time he defied everything that the doctors expected of him. He took his recovery into his own hands, ripping feeding tubes out so that we had to push him a step forward sooner than expected, yanking out his nasal gastric tube so that we had to begin to feed him before the surgeons advised. He is a medical miracle. A child who by all rights should be far sicker than he is, who refused to accept his fate, and fought every step of the way to get better, and pave his way home.
Our families stepped in to help out where we couldn’t. Having to hand over the care of the Little Fella to our two Mums was one of the hardest things I have ever done. Spending time without him, not getting to kiss his gorgeous head goodnight broke my heart. I had to choose Michael, at least for this time, and that choice – the fact that I had to make it at all – was devastating. We are all home now, and my Little Fella has been loved through the trauma he experienced as a result of Michael’s birth. The simple pleasure of having my two boys in the same room will never be underestimated, at least by me.
Michael’s arrival changed my entire family. We have seen so much, and felt levels of emotion that we didn’t think possible. We have watched the Warrior Mums of Crumlin fight for their children’s right to LIVE, and to love them better. I am a proud member of this tribe.