Is It Worth It?

What a year… 

It’s funny, I have literally never in my life been at a loss for words, but here I am. Telling myself for months to write. That it will be good for me. Writing has always be therapeutic for me. My escape. My ‘me’ time. 

I think it’s because writing has always been my way of finding hope in tough situations. I am REALLY struggling to find the hope this year. Recap, since I haven’t really been sharing. 2 hospital visits, one for each kid… mental health scares and major medication mistake due to lack of understanding of basic cause and effect… ALWAYS.be.on.guard. Things that should be simple are just never simple in this world. I think that is breaking my heart the most. Major aggressions, manipulation, threatening, lying. We’ve been on lock down and have had to lock up our lives. So sharing is hard. We started, and stopped, ABA. We’ve been riding the medication roller coaster. We’ve had blood tests come back bad and are still waiting on appointments to see what that means. We’ve called the police and we’ve gone through a glass window. We burned out. I burned out. 

We stopped ALL the things. We moved. In two months time we made the decision to move, sold our house and found a new one. It was fast. We LOVE our new place, but it was fast! It was something that needed to happen. For our sanity, our future, and our family relationships.

We are still settling in. Working on a routine. We’ve had a few “good” days. I really struggle this time of year seeing all the families post their summer vacations. The exciting places they get to take their kids. That’s just not how our world works and I get so caught up in emotion. Even the small things we try are just SO hard. I have found that it’s just easier to stay home, not plan anything. Less screaming, less frustration, less disappointment. Don’t get me wrong, I feel plenty of disappointment, but the disappointment of not doing something is less than planning something and have it blow up in your face. 

Okay, see…this is why I haven’t shared lately. No one wants to read my pity party. Don’t get me wrong, we’ve had good moments. But what I am finding is we don’t have good days. We have good moments. So for now, as we have everything on hold, we are learning to cherish those moments. Fleeting as they may be. We are celebrating the small adventures. Like yesterday, when we went out for ice cream and my husband commented that the boys were actually having a conversation with each other in the back seat the entire way there. How afterwards, they couldn’t stop giggling. It was a glorious sound. The went into Mr. Man’s room and watched a movie…together, like brothers do. Tonight we sat on the patio, in the 100 degree heat and had a picnic. We taught the boys to play corn hole. We got one game, one game before the frustration hit. I feel like Dory in Finding Nemo “Good feelings gone!” 

I guess I am learning that whatever we do, whatever we plan, we do for as long as it lasts. Even if that is just a few minutes out of the day. Because when we are done, we are done. If I try to make the moment last longer, I typically regret it. 

I am not there yet. I am still learning. Dang, if it’s not hard that everything is always SO hard. Even the simple things are hard. If you are a ASD parent, I know you know exactly what I mean. The constant questioning of is this worth it, because we know it’s going to be hard and it’s going to be exhausting. The feeling of always being ON, no matter what you are trying to do. How simply sitting around relaxing on the weekend can change dramatically without warning. It’s like you are never able to really breath. 

If you aren’t a special needs parent, be patient with your friends who are. They don’t want to miss out. They don’t want to feel shut-in. They are most likely just REALLY tired and asking themselves…is it worth it?

Deep in my heart, I know it is. It is worth it. But wow, I am tired!