The Perpetual Grief Series

I’m not sharing about the concept of continual and on going grief to gain sympathy or pity. But to bring awareness to a state of being that some may have no concept about. My life is not continually sadness and depression. There are SO MANY AMAZING things…..starting with the 6 most amazing people that I love more than life itself.

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But, I am living this life that has been hard and there are aspects of grieving that I never seem to get beyond because certain situations are brought up again and again and again.

Parenting a child (or children) with special needs is an interesting endeavor. There is a certain loss of dreams and ideals that you come up against time and time again.

For many reasons, my 2 older boys – both of which have Autism, ADHD, Learning Disabilites and Anxiety, as well as Sensory Processing Disorder – have never done very well in group activities. Whether its the social aspect, or the inability to focus, the lack of verbal or written output, generalized fear and anxiety; or even the chaos, and sensory input from an organized activity.

We tried to put Jeremy in Karate, and Soccer when he was younger. The karate instructor was positive that he could whip Jeremy into shape…..and eventually asked us to leave when all Jeremy was interested in doing was spinning in circles while laying on the floor. The soccer league was specifically a no rules, just play league and we figured the lack of standing in lines waiting for your turn to do the drills would be amazing for him. We were excited to have him ask to be in net every week, until we realized that the ball almost never made it to the net and that he spent the majority of his time laying in the grass, looking up at the sky and rolling around. We attempted to put Josiah in a parkour class but after getting spoken to by the instructors because he wouldn’t stay in the lines and wait his turn, we removed him from that activity as well.

The only activity that has been somewhat tolerated has been swimming…..and I’m not surprised because my boys spend about 50% of their awake time in the the bath……It’s a sensory heaven…..the perfect temperature, perfect amount of pressure, they can float if they want, still play with lego, and can hide under the water and its so quiet.

Even so, we got notified by the swimming instructor, last week, that maybe Siah would benefit from private lessons as he struggles with listening to the teacher and following the rules. And I grieve….

I see parents all around me putting their kids in different activities and I grieve the loss of normality. I see parents sharing excitedly of how their child is excelling in this activity or that activity. Hear parents talk about how their child got a scholarship to this college or university and while I’m so happy for them and would never begrudge their child’s success…..

I grieve. I grieve because I celebrate differently.

I celebrate days when we have “only 3” meltdowns. I celebrate just getting my children to school……without tears is a banner day. I still haven’t been able to celebrate just dropping off my kindergarten-er and having him run inside happily. I celebrate days where the teacher hasn’t had to talk to me about an issue. I celebrate days where bedtime doesn’t take 3 hours from start to finish. I celebrate my children eating……something……anything……I celebrate when my child uses the bathroom without fear, tears and pain. I celebrate when we can find the “softy pants”.

But I grieve the loss of dreams…..the dream of normalcy…the thoughts and ideals I had of life looking a certain way. Of being able to put my son in soccer. Of having my kids involved in sports or an activity…..of having them excel at something.

And they do excel……just differently.

In the grand scheme of things, I’m raising my children to be kind, compassionate, understanding, aware…… and I think I’m succeeding. But that doesn’t mean that somewhere underneath it all, that a part of me doesn’t feel the loss…..

And I grieve……

The Perpetual Grief Series 

We’ve had a lot of hard moments, recently! 

This past Sunday, neither of my little boys wanted to go to their class at church.  I know that once they are settled, they enjoy themselves; but transitioning from being with mom and dad to being in their class has been so difficult.  Sunday was no exception.  We managed to get Judah settled – but he wasn’t happy about it.  And Jon took Siah up to his class.  He sent me the picture up above, saying that Siah was pretty pissed to be there and was refusing to join in.  He was just standing in the corner, glowering at everyone.  

He finally worked his way through whatever transitioning he needed to do and realized that he could “improve on” what they were doing for the craft. At that point, he quite happily joined in.

When I spoke with him later,  he mentioned that getting  a”list of what was going to happen” would help…………and that explained everything.  He was feeling anxious and out of control.  His need for security and comfort displayed itself as defiance and opposition.  But the reality was that he was scared and insecure.

I suggested that maybe the calm Josiah needed to write the nervous Josiah a letter so when he had forgotten how fun class was; I could give him the letter so that he could remind himself…….because even if you won’t trust me, you’ve got to trust yourself, right?

He giggled for a long time about that.  

But it breaks my heart to see him stressed beyond the ability to reason.  He is such a smart, capable child as long as he’s not in “fight or flight mode”.  Once he hits that…..basically we hold the course until he can come to a realization by himself.
And yet, the longer he stays in that space, the harder it is on him –  physically, mentally and emotionally – and I hate that.  

I grieve the loss of normalcy.  I grieve the loss of ease.  I was looking back at pictures from when I had only the older three kids and while life back then wasn’t easy….it was different.  It seemed simpler.  It wasn’t easy.  Jeremy wasn’t an easy kid but he as only 1 of 3 and at that point I had no idea of the world of pain I was headed into.
I grieve the loss of self.  I grieve the loss of competence and confident capability.  I grieve the loss of innocence.

I feel like a part of me is stuck in that dark space of grieving.  Like it’s been so long that grief has been touching me that it’s infused itself into me.  Not overwhelming, just subtly changing……..winding tiny bursts of sadness here and there. Not enough to overwhelm, but just enough to never forget………

  

Daily Photos

Daily Photos

I have a black notebook that is essentially my external brain. I write lists and notes and journal entries and anything else that I need to be able to remember and access at will. I CANNOT FIND IT and it's driving me nuts. So I'm starting a new one in the hopes that the old one will turn up. But I hate starting a new one when the old one is unfinished…… #ihaveissues
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