Long and lonely journey

Parenting these boys has always been a bit of a lonely journey.
We learnt that was the way it was going to be as W's quirks became more obvious and various friends drifted away - some ran rather than drifted! Clearly it was too scary to see how easily you could have a different child.

Loneliness, being the 'other', being one of those parents with one of those kids, not fitting are all common refrains from parents with kids who have extra needs.
I knew that, mostly accepted that, over the years.

I know, and would be the first to acknowledge I've been a crap friend to people.
I'm tired much of the time from the long nights for T, usually got a plethora of appointments so on a free day I just want to be at home or not have people coming round. Life is pretty stressful much of the time. Stress, I thought I was handling until I discovered what it was actually doing to my blood pressure. Trying to find the quiet to make phone calls is hard enough, thinking of something else to say harder again

I know that babysitting the kids is a big ask - feeds and allergies for T, meds, challenging behaviour at times and formula for N.

I know my social circle has got smaller and smaller as I couldn't manage to get out to sing any more, then the Parish Council meetings went due to fatigue and babysitting issues because of T's feeds.
I tried to widen it by finding a group of local mums online - but could never make it out to the get-togethers. I tried to take part but the never ending succession of disasters/challenges round here took their toll and I couldn't fake 'normal' enough.

We tried inviting people round for dinners and get togethers since getting out is harder - we've heard lots of "We must do dinner some time", "We'll call and organise lunch sometime!" Even "We must do coffee!"
But nothing ever eventuates and after a while it gets harder and harder to push people - or ourselves.
I was in contact with another mum recently who is finding things a bit hard and lonely. I suggested coffee and all was fine until I suggested suitable days and the conversation went dead.

It's brilliant on FaceBook - loads of friends, communication, interaction. Just nothing IRL.

Due to lack of babysitting P and I have been out together 4 times in the past nearly 4 years since T had his feeding tube placed. Twice have been daytime lunches which have been lovely but nearly 4 years without going to a concert he's singing in, meeting the people he interacts with and talks about, receiving only the reports of what went well or badly is hard.
Harder still is staring down the barrel of at least another year of tube feeding.
Another year assuming all goes well with T.

I've had a wonderful trip to my sister's wedding - by myself, and 1 other time I've been out on my own.
6 events in 4 years - that's it.

I've now got to the point where relatives contact me for other relatives details to invite them to events I'm not being invited to. This has happened more than once.

And so I'm faced with the horrible situation of turning 40 next year.
Traditionally you have a big party with all your friends - P did and we had a wonderful time.
I've actually been looking forward to it, wanting to invite those who have been a help, a support, a friend in that time. Looking forward to being special, being me not a 'nurse' for the kids, a wife, a mother.
Those are all important roles - and ones I cherish. But I wanted something different.

But either I'd have family and a few friends who don't know each other and so the party wouldn't work.
Or I could invite a mountain of people - and have a virtually empty room in the end. I daren't actually do one of those open-ended "We'll be in such and such at this time, come along" for sheer and utter fear of no one showing.
So - no 40th party.
Maybe by 50 things will have come right and I can have the big bash then.

In the meantime I guess I should be glad I'm the "reliable, trustworthy, E will know how to do it, organise it, how to contact them" one.

I know that others have it much worse than we do - and at least there is an end in sight.
I know that our situation is not unique among other special needs parents, although we are unusual in having 3 with extra needs.
I know that I haven't help the situation as much as I might and I apologise to my friends for that. I am also incredibly grateful for the interaction I do get on FaceBook and other online places.

I'm so glad I do have P by my side and we're walking this long and lonely journey together.
We are doing it for the best of reasons - the kids.
But in infamous words - "Eh by gum, it's a hard 'un".