United front

Samuel’s Dad and I are often told that we are very brave and strong with how we deal with Samuel and his condition. We aren’t really. We are just like any other parents. If you are a parent reading this, wouldn’t you do everything for your child? Wouldn’t you fight tooth and nail for them? Just because you don’t see me in tears, doesn’t mean I don’t, we don’t, have dark moments.

But together, as a couple, as Samuel’s parents, we are very strong. We have been together a long time, for about thirteen years actually. We met at university in my first year (we were flatmates) and that was that. We’ve always spent an enormous amount of time together. At the risk of sounding cheesy, we like each others company, we know each other so well it’s just so easy to be together. In some ways we are really quite alike, but then our differences make it work too.

I think I find our ‘situation’ easer to deal with than Sam’s Dad because it is my life 24/7. Whereas he has a busy, demanding job, Samuel is my job. My whole day (and night) is about him. I go to every appointment, meet every specialist and have to discuss Samuel’s condition weekly, sometimes daily. Very early on I got use to explaining ARX to people. I got use to having to tell people that Samuel has global development delay and is just like a very little baby. I also got use to being around fine and healthy children. ‘Normal’ children. Most of my friends have children now. Being at home all the time, I see them quite a lot and spend a lot of time playing with and admiring their little ones. There are times when it kicks me in the gut, you know, that feeling that Samuel will never do some of the basic things they can do. When they say ‘Mummy’ and ‘Daddy’. When they smile and giggle. But I’m ok with it. I accepted it a long time ago. I had to. But Samuel’s Dad doesn’t see our friends children as much, so he still has those moments. He still has that feeling of being kicked in the gut. But I think it’s getting a lot easier for him.

But we are a good team. We have formed our funny little bubble around Samuel and it’s very cosy. If you were a fly on the wall here you’d probably laugh at us. When we listen to music we often change the words to the song to make it about Samuel. We have a wide collection of what you may think are very obscure nicknames for him. We are just crazy for our boy.

I don’t think we could do what we do if our relationship isn’t how it is. Don’t get me wrong, we squabble, we annoy each other, we aren’t perfect. But we never really fall out. We make each other laugh. We hold each other when we cry. We would even give each other our last Rolo (well I might let him have a lick of it!).

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4 thoughts on “United front

  1. i have to say i agree with everything you have said. Sometime i hate having to explain GDD to people because alot of them just dont understand no matter what you say but like yourself im with Dylan 24/7 were as Lee works full time so when he is asked or if we are around other kids he finds it so hard and sometimes he wont even say there is anything wrong cause he just doesnt want to explain it, which is really annoying at times, but at the end of the day we have each other and Dylan and that makes everything a lot easier to deal with.

    Let me just say i love your blog so much give Sam a big hug and kiss from us xx

  2. Love this. You have basically just described me and Alan. We’ve been together for 16 years and we work well as a unit. We have daft nicknames for Cameron and change words to songs. We’re very lucky to have each other and together we can conquer anything. Thankyou for your blog xx

  3. What a great post.

    I’m finding it hard to condense everything I want to say about it into a comment sized shape.

    “God only gives you what you can handle.” I think anyone with children like ours has heard this so much that it becomes nauseating, but I also think that this crazy universe of ours works in mysterious ways. Whether God had anything to do with it or not I do think that Karin and I were destined to be lucky enough to have Liam in our lives because of how strong a couple we are. I believe that’s also true for you and Chris. Samuel was going to need some pretty special parents to take care of him which is why he’s with you two. The universe may not always be fair but in matters like these I think it gets most thing right.

  4. Pingback: Next to me | Tricky Customer

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