Being a parent is hard.
Being a carer is hard.
Being both is a chaos that is unparalleled.
Whether you learn you’re going to be a parent to a child with additional needs before your baby is even born or, like me, life has incomprehensible plans that put you in the position of having to relearn how to take care of your own child who now has complex medical needs.
It is overwhelming, it makes you feel like you’re drowning, and it doesn’t come naturally. It makes you feel like less of a parent for not having an instant capacity for infinite medical knowledge and the ways to navigate healthcare for your child.
You never expect it to happen to you.
It happened to us. We went in 48 short hours from a happy mother and a happy, healthy, cheeky little boy to doctors urgently asking me to make a decision to allow surgeons to perform permanently disabling surgery in an attempt to preserve his short life. I had to choose to have 2 further disabling surgeries afterwards to allow him comfort and relief from tremendous pain.
We were an active family, one where he would play soccer in the morning before riding bikes with his friends in the afternoon, then absolutely sprinting ahead in the evening when we walked the dog. We became a family where he was so fatigued that getting dressed in the morning was a major and exhausting event.
Parenting a child who is discovering their pre-preteen independence is complex. Parenting that same child as they traumatically, progressively, and permanently lose that independence is unimaginable. It’s still unimaginable, and yet we lived it.
It made me long for the days of nuclear level meltdowns in Sainsbury’s because my truly wonderful and darling toddler wanted green grapes for when we go home, but not those green grapes. Hell, it made me want to throw my own tantrum. Right there on the hospital floor. I want to take care of my child. I want him to always need me. But not like this.
This is why Children’s Hospice Southwest exists. It takes those children born with additional needs and life limiting conditions, whose parents have never known parenting without also being a medical carer, and those children who are thrust into the fray of life limiting illness and injury. CHSW learns about each child, each family, and provides them respite. Where we can be parents and allow the amazing teams at their houses to be carers. Where we can network with other families, and share the unspoken bond of being parents to children who will leave us too soon. We can simply enjoy the time we have left with our children in these homes, and make memories that we will cling to for the rest of our lives.
It allows families a serene and calm place to allow those children who are at the end of their lives to pass. For families to be together and grieve among some of the strongest, toughest, most caring, and most understanding people in the world.
I stood by my son every second, and I stand by him still.
I stand for the love he had and has around the world, in a community of truly beautiful souls.
I stand for the chaos he loved to be a part of. The hype and the light hearted teasing.
I stand for the place that will continue to give families just like ours everything they possibly can in order to give us the most precious gift. The gift of simply being a parent to our beautiful children.
Please. Stand with me. Stand with these warrior children and their families. Stand for Noah.