The moment it dawned on me…

For the last year since we’ve had Samuel, we’ve been very open and honest about the possibility of just how limited he might be. At the moment he is very much a baby baby, doesn’t have eye contact, smile, hold his head up, support his neck, roll, reach for things (I wont go on if you don’t mind) but we of course hope that this may improve and he does show some progress.

But it dawned on me last night, that this could be it, this is all Samuel will do. For as long we are blessed to have him, this is it, he will always be a baby baby. That realisation does feel incredibly strange. Sad and very strange.

When I was at college I did some work at a local special school (one afternoon a week to mainly fill up my college timetable) and I remember more than anything the class of kids who were really limited. They didn’t do anything or appear to communicate in any way. I remember putting tissues in their hands for them to feel. I remember now that the children were gastrostomy fed like Samuel. I remember one girl, she was really pretty, and I remember feeling really sad but then thought that despite everything her mum and dad must love her so very much and she is probably the light in their life even though she might not smile at them, tell them she loves them or run outside and play with her friends.

My friend I was with didn’t seem to be able handle this class so we ended up helping out in a more ‘active’ class of kids. But I often think about those children in the first class we were in.

So I guess what I’m trying to say through teary eyes, is that yes Sam may be very limited in what he can do but he is so very  beautiful and he really lights up my heart when I look at him. I just love the way he sighs, how cute it is when he yawns (particularly when medical bods are talking to him), the sound he makes when he sneezes, the smell of his skin, his fingers and toes, the shape of his mouth, his eyes, his beautiful blue eyes and the longest eyelashes in the world, the feeling I get in my heart, in my stomach when I hold him and the way he snuggles in to me when we cuddle.

He is my world. x


9 thoughts on “The moment it dawned on me…

  1. This is a very beautiful blog. You are at the beginning of your journey and I am going to be following you all the way……
    Never forget that there is a large community of mums who are here when you need us.
    Your little boy is beautiful…..
    Keep writing.

  2. I have that exact same feeling. H’s progress is painfully slow, we’re finally getting to the 6-8wk Mark (he’ll be 2 in march) but he could be regressing so a little tiny weeny bit of progress is better than going backwards! I try to appreciate the good things about him still being so baby-like. He gives (or let a me give him) THE BEST CUDDLES EVER! What other nearly 2year old would be still long enough to let me cuddle them for hours. And he is so soft and squidgy still, just like I imagine Sam is. Give him a great big big cuddle from me and H. X x x

    • I think it is easier for us because Sam has never developed, always been a baby baby. I think it must be incredibly hard if your child has been making some progress development-wise and then stops or goes backwards. We’ve only ever known him this way. I do treasure the fact that we can scoop him up and give him a good old cuddle whenever we fancy! Sending cuddles back to you and H! x

  3. of course he is your world and he will teach you about life with ARX – he will get you through each day, he will guide you and he will bring you joy during the difficult times. and when you struggle, just as Di said, we’ll be here for you too

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