Memories - oh so different

I remember fondly taking Micah on Thanksgiving and Christmas errands.  He would be my little helper making decisions about color, size or type.  It was great and oh how I miss it.  Not only do I miss that my baby is almost 13 years old and he’s not as interested in being my little helper anymore, but I especially miss not being able to do the same with Caleb.

BK tells me not to think about the things Caleb can’t do but what he can.  And I agree with that – most of the time.  But not right now!  I want to take him with me to Build A Bear to pick up a cute little Christmas outfit for a bear.  I want him to help us put all the ornaments on the tree.  I want to make Christmas cookies and let the boys frost them.  I want to buy some Christmas candy to put out for a quick treat.  I want a lot – more than I can have or expect with Caleb.  And it hurts!  I think right now I’m personally hurting because I know what fun I had with Micah and I want to go have that fun with Caleb.  But I also know that I hurt for Caleb because HE won’t have those experiences or memories.

I get angry and frustrated at this disease – whatever it’s name is!  It has taken away his ability to have kid experiences like other “typical” kiddos his age.  I get angry and frustrated that he can’t find contentment and desperately seeks out that one, unknown item to hold that will bring him comfort.  I get angry and frustrated that once he gets excited because he’s having fun that he loses control of his decision making skills & impulse control (and sometimes hurts someone).  I get frustrated because mere words don’t explain his struggles appropriately!  I get angry and frustrated at how this disease has challenged our family – typical disagreements can turn into full-on aggressive meltdowns (and someone usually gets hurt – both physically and emotionally).

It’s a tough day – can you tell?

PS ~ I wrote the above 24 hours ago and after thinking about it, I really want Caleb to have typical childhood experiences like Micah did.  So off we go to Build A Bear last night.  It did not go well.  I’m angry and frustrated that taking him to Build A Bear was just as difficult experience as I thought it might be.  Bless his heart – he doesn’t know any difference but his momma & daddy do L