wishing I could skip Christmas and stuff

Remember Atreyu and Artax?  Do you remember how the sadness of the swamp won and Artax was lost.  The Nothing, just like in The Never Ending Story is something most of us fight daily, all in different ways, but we all fight the nothing.  Honestly, if I had no kids, I would be somewhere at Christmas.  I am not a Bah Humbug kind of broad, I am just not feeling it.  It is a life goal of mine to actually do something Un-Christmasy at Christmas….somewhere far away from here. It’s also a life long dream to live in The Keys, Hey a girl can dream …right??

Chris has lost almost 20 pounds in the last few months and his behavior at home has changed considerably…super lethargic.

So we went for blood work.  Upon entering the hospital I walk through a security-type set up they have now…Placed my keys and cell in bin and walked through the metal detector.  Chris walked immediately after me….The guy starts yelling at him, Chris has no idea.  The guy said in a British accent,” it clearly states green when you can go”  I said,” He is autistic and doesn’t understand this process”

After we got through all of that it wasn’t too long before they called his name and he was being held down by 4 people and myself to get the blood drawn.  I explained to the techs…..and

they were actually really awesome and got it done.  I had been showing him videos and trying to explain…..the doctor even gave him a light sedative to chill him out prior and he still freaked.

We have a follow up about this blood work on Monday, and an appt with a neuro.  His blood sugar was elevated even fasting and his liver enzymes were super high.

We got to bring Maxwell home for Thanksgiving and it was pretty good.  He did well.  When we got him back to the group home.  My heart hurt, he was happy, back in his routine….I have seen him once since this visit home with us.  Many people ask me, ” Can Max come home for Christmas?”  The answer is YES, Max can come home whenever we are able to bring him home.  He is not there because he was taken, he is there because he needs this care.

As a parent, it is so hard.  I can’t really put it into words, and only if you’ve been in this situation can you comprehend not having your child with you.  Realizing you can not give him everything he needs.  One’s heart and brain usually aren’t on the same page anyway, but when you do what’s right for the child and his quality of life, the other children and their quality of life, it doesn’t always mesh with your heart.  Every time I leave him there, its as if my heart is literally ripped from my chest and thrown to the ground.  Typically it takes me 10-15 minutes after I leave to compose myself enough to even drive, and usually that is because he is crying.  He wants to come with me.  He wants to be with me.  I want to be with him.  It’s as if my soul is literally aching until the next time I kiss his freckled cheeks.

I am going through some other stuff too just needing to breathe and can’t find air.

Needing clarity

Still climbing the rock wall of life barefoot, covered in baby oil..

 

 

 

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