Friends

A lot has happened in the last few days since Seiya's tonsillectomy/adenoidectomy, but I wanted to write about this first, and especially before the game day event where I'm going to be thanking everyone as well.

We have amazing friends and family (note to family, everytime I mention friends in this post that includes you too).

I think about it a lot, of course, but I hardly get a chance to say it.

Having Seiya has put us in a bit of a vacuum. We've met new people by virtue of having nurses, caregivers and meeting families and children in similar situations. Some of them have become friends as well of course. But at the same time we haven't been very mobile, and the things we can do - while increasing - are still limited and very scheduled.

It's often mentally exhausting to even think of "going out for a day". So we don't really do it, and when we do it tends to be just the four of us feeling like we're finally getting to spend time together.

We've missed a lot of our friends' lives. Me in particular. Some friends have had children, some have gotten married, some have new homes, new jobs... birthdays have come and gone as have other events. We miss almost all of them.

We have withdrawn ourselves, in a sense, as I have heard any families with complex care children do. Half of the reason is logistical and due to exhaustion as mentioned above, but the other half is that - and I speak for myself here, my wife may feel differently - I don't want to put this thing we're going through on anyone else.

Going to an event means I will talk about Seiya. I will update people who haven't seen him or heard about him in awhile on his progress and I will explain what's going on with him to people who weren't aware of it. I'll talk about all the appointments, the operations, the highs and lows. I'll explain our time in hospital for almost a year, the constant nursing in our house now, that our living room is basically an ICU and so on and so forth.

I don't mind doing that. I don't feel it's wrong to talk about it and I don't feel ashamed of it and I don't want to pretend it doesn't exist. I never have, and I have always welcomed the conversations.

What I dislike about it is that it has the potential to overshadow any event I or we go to, and I also don't like putting all of this stuff on other people. The other part of it is that it's extremely difficult to talk about your child without talking about - and making it about - yourself.

I do not have Trisomy 18. I do not have nursing support, hospital visits, surgeries, and so on. My son is going through that, not me. I am supporting him as much as I can, the way everyone else in our world, in their own way, is also supporting him. The way that I'm sure many people would if they were in a similar situation. That's important because while I do have my own ups and downs because of his situation, my ups and downs are different and don't really compare to Seiya's. I need to vent it off sometimes for myself, like anyone would, but at the end of the day I don't want to make Seiya's situation all about me.

So with all that, I withdrew into my own little world. When you're physically and mentally exhausted and your whole perspective on life has been so monumentally shifted, you take the easy way out sometimes and find yourself not being as social and not as involved in the world outside of your own.

That brings me back to friends.

During the past few weeks as times have gotten a bit more desperate for us, I've started allowing more people in again. A bit out of need and a bit out of want. We've been living in our own isolated world for over two years now and although we've been doing well in my mind at least, it's unhealthy for us all really.

As more and more people have started reaching out to help in one way or another, or even just talk, I see what I knew before but haven't paid enough attention to lately: my friends are pretty amazing.

They don't care about our situation except to know if we're doing well and if there's any way they can help. They understand that there's a reason we haven't been around. Picking up conversation after two years is no different than if we had just seen each other yesterday. They're sympathetic to what's going on and always there if we need them, but give us space if we need it.

Sometimes we don't invite people over because we feel bad that they always end up coming to us and we don't have much of a chance to go out to them, but I think overall our approach has been wrong.

We're always looking to go back to "normal", and this is a part of it that needs to go back too.

Thanks friends, for everything you've always done and reminding us without even trying that - even if it happens bit by bit - it's time to get out of our shell.