Tired of being tired...

It's been a while since I have sat down to write and I've actually been craving it lately.  Composing entries in my mind of what I would like to write and what I'd like to get out of my head. 

Writing for me is so much more than just 'sharing a thought'.  It's literally getting it out of my head.  When I write, I do it primarily, for me.  So the thoughts, concerns, worries, anxieties stop bouncing around and echoing in my mind - they are out - on solid ground, being in black and white on the paper...or er, screen. 

Lately, I've been tired.  Not like, I went to a party and now I'm a bit hungover, tired.  More like, the newborn woke up 7 times last night and my bones hurt to move kind of tired. 

What has me so tired and weary?... I'm sure you're wondering.  MY HEAD.  It must be a woman thing to get all caught up inside your head.  The plans, the lists, the emotions, the worries, the schedules, the chores, the to do's, the activities, the appointments, .... need I go on? 

But what I'm MOST tired from is the thought it will never change. 

With our neurotypical kids, you know that "this too shall pass".  But I'm tired, like really really tired, from the thought that what if this doesn't pass?  What if this is the full potential our son with special needs will ever reach?  Waking up and walking the therapy dog, training the therapy dog, making breakfast, helping him get dressed, making lunch, making dinner, going to therapy, going to activities, explaining why he can't be in the same skating or hockey program as the other kids.  

I'm tired of being his playmate.  He doesn't get invited out to play.  He doesn't get invited out to parties.  And now I can 'blame' it on COVID, but the truth is, no one wants the kid with special needs at their birthday party.  And that kid is MY kid.  

And then I get frustrated too.  The monotony of it all.  And then I get sad.  How could I have these feelings for someone who is so good?  So innocent?  So pure.  

The ironic thing is that I started this post on January 15th...and this morning I woke up early just to write.  (I wanted to get some movement in there too...but we'll see what we have time for)

I know now why families with children who have special needs get respite care.  Because it truly is exhausting.  

I'm also tired of being alone.  I have my husband with me and that we are solid - even though that is a statistical miracle.  But I'm tired of not having another mom who I can relate to, someone who I can say, "don't you hate it when..." or "isn't it totally amazing that this happened?"  Our totally amazing's are just someone else's every day - from three years ago.  

And then comes the guilt tired.  How could I ever EVER feel this way about a kid who is just so honest and pure.  He can't lie.  Because he's afraid of going to hell if he does.  He wants everyone to be happy and carefree like he is.  Even as a young toddler, if he saw another child crying, he would go over and rub their back in the hopes that would fix whatever was bothering them.  When he was about 5 years old, and still not struggling with being verbal, I asked him why he did that.  

"They know they be not alone"

In his own broken words, he wanted them to know that while they were suffering, they were NOT alone.  

The thought of that alone makes my eyes water.  He can barely speak.  People pass him by all the time for playing with him, choosing him, or just even talking to him.  But when someone else was suffering all he wanted was for them to KNOW that they aren't alone.  

Sometimes I'm annoyed and a lot of the time I'm tired.  But most of the time I really think that I am not worthy to have such a wonderful and kind soul as my son.  

Wouldn't it be wonderful if during this time of COVID, no matter what your beliefs are, antimasker, antivaxer, pro-mask, earlybirdvaxer, WHATEVER you believe, wouldn't it be great if at the core of it all, we just were WITH people.  Said nothing but just were WITH them so that they knew they were not alone.  

Let that sink in for a little while.  

Kiefer's Superpower

Today's blog post is written by my husband.  It was an email he sent me and I immediately wrote him back and said, that's the next blog post!  

Read below: 

I was thinking about Kiefer.  Through some miracle of sperm meeting egg, he developed a superpower.  We think of gene abnormalities as being something negative.  Many superheros go through a genetic mutation to become 'super-powered'. The Hulk, Spiderman, etc.  

That's what happened to Kiefer.  His superpower is kindness, endless capacity for love, giving without any need for reciprocity, and the ability to bond people together.  He is pure innocence.  He calls out language injustice ("language!"), heals broken days ("hug?"), and brings people together ("will you be with me forever?").  

It's not that he won't be able to have a productive, happy, adulthood...it's that we and others will judge him with our lens.  It is not he that's at the disadvantage, it's us.  We cannot understand his level of happiness and his desire to be around us.  He is more content than anyone I know.  He asks for almost nothing, he's happy with the smallest of gestures.  The question is not 'will Kiefer have a fulfilling adulthood?' the question should be "how can I be more happy and content like Kiefer?" 

I love him.  I love all his little quirks.  "Fun fact!", "Can I ask a question?", "Did you know...".  He's a walking encyclopedia of information and misinformation.  He's an interesting person and it's a privilege if you get to know him.  

The issues that I have with Kiefer, I've discovered, are actually my issues.  I sometimes lack patience, not because of him, because of everything else that is going on.  I sometimes get frustrated when he spills or gags.  Then I think, "really??  You're frustrated that his seizures made him spill milk?  You're frustrated his condition gives him a strong gag reflex?"  My lack of empathy surprises me and shames me.  

We still have to raise him to be respectful of social norms.  He needs to learn to be patient when he wants to share a fun fact.  He has to learn to be appropriate in a world where appropriateness is a nuance, based on calculating many factors to get it right (who's in the room, how close a friend/relation they are, what are the feelings and beliefs of the people in the room...)

As neurotypical people, our brains interpret so much of this virtually instantaneously allowing us to tailor our content to the audience. 

With Kiefer, it's just innocence.  "I like Maive.  I'm going to hug and kiss her and I'm going to buy her a diamond.  Because I like her and that's what people do."  

My pledge is to try and be better.  Understand that the issues, mostly, are mine.  That I'm tired.  I miss my wife.  I'm stressed about life stuff.  The other kids get it and I need to do better.  Kiefer is teaching me how to do better.  

I love you and I love us.  We are going to be great, all of us.  

❤❤