Looking for a shooting star

They say time is  great healer. It isn’t true. Time just goes on, selfishly, uncaring, with no regard to what’s happened. I guess with time, you might get use to something, your normal has changed and time may mean that you have no choice but to get on with it. But time pushes you further away. It wasn’t yesterday you were here, or last week, or even last year. I can no longer refer to you as being here last year. Time makes the memories fuzzier. Time makes you doubt yourself. It plays games. Sometimes it feels like you were just here, you were here yesterday in my arms. And then sometimes it feels like it was such a long time ago that you were here. Sometimes it can feel like you were a film I watched. Maybe I imagined you. But then it can feel that you only left us yesterday.

I know when people hear our story. Your story. They feel sorry for us. Their chest tightens and for a quick second they allow themselves to consider the possibility that they could lose their child. They watch us while we talk, looking for the damage. Wondering how we are not sobbing, still able to smile, still able to function. When I meet new people and the inevitable question comes, ‘do you have any other children’, I dwell on what to reply. I don’t want to deny you, but if I say that I had another son they will ask me about you, I will have to tell them about you and I will have to see their pity. It’s what they will think about when they next see me. They will feel sorry for me, for us. I find that so frustrating, because it ignores the four years we had with you. It’s always about the fact that you are gone, or that you were pretty hard work at times when you were here. It’s not about the good stuff. The love. Oh the love and the cuddles. The effect you had on people. It was like magic. The way people were visibly stunned when they noticed those ridiculous eyelashes of yours. I remember a lady standing next to us in a lift staring at you. When she went to speak I was dreading the thoughtless comment she was about to make, but instead she told me that you were the most beautiful child she had ever seen. She said you looked like an angel, too heavenly and beautiful for this world. How right she was.

I miss our special world. I miss all those words we said every day. Medicines, syringes, feed pump, carers, wheelchair, physio, I miss it all. I miss special needs. I miss special needs children and their special magic. I miss that pride I felt when I wheeled you onto the ward, or for an appointment. Seeing the effect you had on nurses, doctors, school staff, your professionals. Seeing how your neurologist always seem to go weak at the knees for you. Watching those nurses care for you on the ward. The way they talked to you and couldn’t do enough for you (even having to be reminded they had other patients to look after). I miss looking at them with you and thinking proudly, he’s MY boy.

Every night your little brother says goodnight to you and blows a kiss to your photo. Sometimes he says, ‘see you soon’, sometimes he calls you, ‘big brother Sam’. I wonder what he thinks. How he thinks about you. I suppose to him it’s just really normal. There is this person, this little boy that people talk about, that he sees in photos every day, but he never sees properly. He comes to your resting place with us and by his own accord blows a kiss to your plaque and waves. I wonder how he computes it.

I do feel sometimes that you are here with us. By our side, on our shoulder. I will always grip on tightly to your Dad because I see you in him. Not just that you had his features, but because I know you are there in him, in his mind all the time. It’s like we have a permanent film running in our brains of you. Our minds, our brains have been tattooed with your face. We can be talking about a new microwave, but your face is there in the background of our mind. Always.

It’s impossible to put into words how much I miss you. It’s like losing a leg and having to walk again. I feel like I’ve lost a big part of my body, of my physical being. I am a mother of two, but with only one child here. I know some people will say that it was a bizarre thing to do, but that’s why I had to get that tattoo on me. I needed to physically change a part of me. I needed a physical scar to reflect that I was no longer the same. I had all my limbs, my face was the same, but a huge chunk of me was missing, and the remaining parts felt damaged. It may make no sense, but none of it does really.

I want to do big things in your memory. I want to help other families with wonderful children like you. I want to do so many things but I can’t just yet. I’m not ready. But one day I hope that Samuel Luke will be part of why a child smiles or has something that will make their daily life so much better and easier. One day we’ll do it son, I promise………..