Off routine

Hi,

While all of you are planning for a fun filled time of gorging yourselves at a family gathering later this week… I am all prepared to face multiple days of off routine life, many of which I will need to juggle kids and cooking and well- everything.( you know- MY normal!)

There is no attending a family gathering and kicking back to sit and relax and chat with the other adults. I have multiple kids who require 100% supervision in that environment. And while family says we will help- they don’t truly grasp the full need. And in the past the idea of keeping an eye on each others kids worked…. It doesn’t so much for my kids. And we have to guard other peoples nice things to prevent them from getting broken. There are lots of “unsafe for Isaac” foods at most family or most group gatherings. And needless to say- it is rather difficult to keep him away from food…. 

But I am not saying these things to make you feel sorry for me. Or to pity me. I am simply asking if you are aware of another’s struggles? And if so- do you just sit back or do you step in and say- I miss you- what can I do to make this workable? We have had times where that was offered and was an option. And there were times it was was offered but it still just wasn’t going to work out. No one was at fault. It is just the way it is for my family.

So we do most celebrations like that just us here in our home. That way as they lose interest they can go off to their comfortable, familiar place.

And I figure I already have gaping holes in my walls and packed up anything important that is breakable. 

Maybe you think I’m overreacting? 

Yesterday it was a battle just to try to get enough food into Isaac to keep him calm. No joke. And then at some point one wonders- does he ever fill up? No, seriously- does his brain tell him he has had enough?  In discussion with doctors about that. But he tends to not be able to control his behaviors when he is hungry… So, um, like– always?! 

But even though things are rocky in this home. I fight for my family. I fight to instill tradition and positive memories. I fight to present as much of a normal routine as possible for the whole family. We have neurotypical kids who grasp that our life is not normal. But that I try to give them as much normal as possible. But we are a family. We are us. We do life together. Much to the disgust and distain of at least one of my kids.:) ( you’re welcome!!!)

So this weekend while you are out partying, we have 4 straight days with NO outside support. No therapy. No break for mom. When was the last time you were on call 24/7 with NO break? And with the messed up daily routine- we get messed up sleep routine. And mom can’t be all to everyone all the time. Yet– I have to be.

Many many days we tag team life. Mark and I are a team. We never dreamed when we said yes it would look like this. But God did and we trust HIM.  

Many people don’t understand some of how PTSD affects our daily life… The extreme levels of exhaustion and fatigue mess with ones thinking. My doctor feels I have care givers PTSD. It is just the dailyness of this life that wears on a person. And no- I truly don’t want pity and I don’t expect you to fix it or keep my kids so I can get away. I know none of that is real. 

Mark struggles with the noise, the number of workers in the home adds to the number of people in the home and it gets to be a tight fit and we are tripping over each other. And the kids behaviors cause other kids to be set off so it is this bad version of a ’round’ song 😉 

So- what will we do?

Hopefully enjoy some family game times, wesco popcorn and some movies, maybe even a random drive out for slushies from Wesco so we can listen to Christmas music or adeventures in Odyssey and all the kids are captive 😉 

I look forward to the kids draining the power on the kindles and complaining that we have no books and no movies. While I laugh and say– we could just sing and act something out for you?? Suddenly what we have isn’t all that bad.:) (you’re welcome kiddos!!)
But in all seriousness– please please please pray for me. For us. Offering to take my big kids for a visit isn’t always helpful– because then I have NO one to count on to help do their own jobs. While they deserve chances at nomal. My other kids are aware enough of life and they know it isn’t fair… So while you offer to take one of my typical kids- or one of the easier kids… I am left with no real break! 

All this to say this– 

If you have a family member with anxiety, or issues with crowds, or noise…. Don’t take it that they don’t love you and want to do stuff with you. Just realize that for the most part…. My kids are doing their best! They are pushing themselves. And for that-  I applaud them. I love my kids and my family. In the midst of craziness and chaos I know I am blessed. Tired, beyond tired- but I am well aware that I am blessed!

~one tired momma:)

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