Ger Renton talks about the reality of school mornings with her son Ethan, who was diagnosed with Hunters Syndrome.
I stand over his bed. He stretches his arms out to me. I tilt the bed using the remote control. His arms are still outstretched to me. I kiss his head and tell him “one minute”.
He watches as I roll up his window blind. He starts to babble. Sometimes he laughs, other times it feels like he’s telling me to hurry on. I sing to him but he no longer sings along.
I get his clothes and leave them outside his bedroom door for his younger brother to bring down the stairs.
I do have a husband but he leaves earlier for work and I even have home help but I need to entrust her to get my son into his wheelchair on time for his bus pick up as I have a half-hour walk to school with my youngest son and cannot be at home to ensure my eldest gets on the bus.
It is a balancing act - if I am late in my morning routine, like most parents, little things are forgotten and all hell breaks loose. Honestly, I morph into a full-blown version of a marine mum, screeching orders while trying to frog march two tired boys down the stairs while cleaning another’s dirty bottom.
I check the time.
I call each of my other boys names and wait a beat before calling again. By my second call, they are both out on the landing. The youngest son knows he has a job to do too as his older brother grabs my eldest sons clothes and trots down the stairs.
My youngest is six and has mastered the art of pouring cereal and milk into two different bowls perfectly and precisely. He takes his own bowl and leaves the other one in the kitchen for his older brother. My middle son can be found in the dining room setting up his older brothers changing area and the TV for him.
Yes, we are a team, all my boys and me.
I let down the sides of my eldest sons bed, which often gives me flashbacks to when he was a baby; helplessly lying in wait for me to pick him up. “You ready?” I ask, as he once more stretches his arms out to me.
I bend my knees, I take a breath and I scoop my 17-year-old son up into my arms. I hold him close and securely before I make the 15 steps down the stairs. He cuddles into me, which always makes me smile.
He is heavy but that cuddle into me makes it all worthwhile. I forget about his weight, I concentrate on getting him down the stairs and through to the dining room safely, all while feeling his body next to mine. I remember how affectionate he once was.
I know I won’t get a cuddle or a kiss but I know every morning when I scoop him up into my arms that I will get his little arms around me and his head will nestle into my chest as we make our way downstairs to continue our morning routine.
As he ages, I too am ageing and every day, little by little, my back hurts that bit more. We have been applying to extend our house now for over two years with no luck yet from our local city council. They simply do not have the budget to help.
My eldest son needs to be sleeping downstairs in a bedroom designed for him and his needs. He needs access to an adaptable bathroom as our home has no safe place to bathe or shower him in. For three years, my son has been unable to shower or bath at home and for three years I have been carrying him down the stairs.
This February, we will be applying to purchase our house and then somehow, we will find the funds to knock out our dining room wall to make Ethan the bedroom and bathroom he deserves while still giving our other sons a sitting room and a smaller dining room.
2020 for us will be the year Ethan has a safe space in his own home and it might even be the year I can carry him because I want to cuddle him, because I want to feel his little head resting on my chest.