It’s finally Saturday, finally the day when round 1 of 18 finishes and he can come home.
I cannot begin to explain how slow this week has gone and how much I miss him.
Because I have been speaking to him via FaceTime all week, I was kind of prepared to see him looking pale and weak. But it was still horrible. He was excited to see us and to go home so he had more energy than he had had all week but it soon started to wear off as the sickness crept back in.
We were given his medications, all TEN of them. They explained what needs to be taken when, which I weirdly took in. My 1 year as a student nurse was coming in handy!
We live 2.5 hours away from the hospital, so I made sure he had his home pillow and blanket for the car. For nearly the whole journey home, he laid his head on my shoulder. He was so eager to get home, whereas I was secretly enjoying the moment. Rare time where he not just needed me but wanted me. He was my little boy, just for that small journey. I almost didn’t want to get home.
As soon as we got back he went straight up to his bedroom where I helped him take off his shoes and get into bed. Being an almost teenager, he has a double bed in his room which made it simpler when he asked me to sleep in with him. He said he didn’t want to be alone.
So I’m laying in his bed with him, jumping up when he’s sick to help clean him up, hug him and tell him I’m here.
He may be as tall as me, full of attitude and a teenage grump, but in this moment he’s my boy.
He’s got a long road ahead of him, we all have. I am now a carer as well as working full time, being a mum to the others and a wife. I have to manage all his meds and his huge sheet of instructions, Organise new appointments when they come in and liaise with the community nurse team, who will visit daily for his injections.
But we have done week 1 of 29.
28 to go.
We’ve got this 💪🏻💛