With Christmas fast approaching and “Fire, Ready, Aim” being 5 and now REALLY understanding Christmas I had 24 hour to get it together. Don’t get me wrong, I had a list, checked it twice, removed stuff that I realized in the end would drive me crazy due to 100 pieces or the piercing sound it creates and, of course, used my lunch breaks to get it together on Amazon. But it still, unfortunately, required me to do a few visits to the shops. With FRA’s (my son with autism) need for a COMPLETELY silent house for sleeping there is no way to “just do a little bit each night” as someone once told me smugly. Solution? My poor husband did a 24 hour trip to/from his Mom’s house who live about 4 hours away.
After I slept in a little bit, because autism Mama’s need fuel, then took a quick bath, because chronic pain requires you to unfurl, I made a list and was ready to attack (after 4 coffee’s)!!! First, I dragged everything out of the hiding places to make an inventory. Then from 12 PM – 8 PM I shopped…which took a little longer than planned. I live literally across the street from my parents house and we have lived in the neighborhood since I was born. I can’t go anywhere without seeing someone I know and I can’t pass up a good conversation! Especially when I can talk to someone without 2 preschoolers dragging everything off the shelves and tugging on you saying “Can we go?”, “Can I have this?”, “But I need it!”, “When are we leaving?” and the one only mothers of kids with autism/aspergers can appreciate “Why is she so short?”…oh, the joys of complete unbridled honesty. But I digress.
After a super long, and sadly enjoyable, trip to the grocery store my card was declined. Turned out, they weren’t used to me making so many purchases in one day that weren’t online – ha! Once I dragged everything inside, put it away, then took my pain medication I had to organize everything in piles. This required another shot of caffeine and streaming Love Actually from Netflix (for the Christmas spirit)….followed by 3 other movies recommended by Netflix. I then had to YouTube how to make a big bow for that ridiculously large bear in the corner that my husband got for Queen Kong. The rational side of me knows it will get in the way, but the Daddy’s Girl in me overrides it by seeing how sweet it is that he wants her to have it! OH! And don’t forget making deviled eggs and mini sweet and salty cheesecake bites for our first family Christmas celebration the following afternoon. Am I the only one who tries to do TOO much? I mean, we are women. Working women. You know, #WomenCanHaveItAll! <sarcasm>
Finally at 4:30 AM it was time to sleep before the kids and hubs came home at 11 AM. And then it happened…the beep. The beep that sent our Boston Terrier into hysterics. The first one I ignored, but it took 15 minutes to calm Maizie (the dog) down. The second one came right as I was dosing off and made Maizie even more upset. The third required me to drag a chair around the house and remove the fire alarms. The fourth time I finally found it. A dying carbon monoxide detector in one of the kids rooms. I made the mistake of hitting one of the buttons which sent the dog over the edge!! I FINALLY convinced Maizie we weren’t under attack and went to bed at 7 AM.
The point is, long ago, in my single super organized days, when I imagined being the Mom of little’s I thought I would have a room like this to be so organized that I could do holidays with ease!
That room in our house which had the potential now has a “child proof” cover on the door handle and we have it under lock and key. It actually serves as the place where toys go for timeout and where we quickly put things when we are frantically cleaning before someone comes over. #sigh
I know I’m in “the days you will miss one day”, but right now it feels like I will be looking back “lovingly” at a 5 year hurricane. It’s exasperated by not having enough time, being in constant pain and fear that cancer will come back. We are still fresh off my second round with cancer/major surgery and still mourning the diagnosis of autism. Each of the those diagnosis’, especially contained in one year, carries the feelings of loss. You watch other families and see the things they can without little thought. Go to the grocery store without having to prep for hours about the noise and purpose of the trip. Going to a birthday party, which again, takes a week of discussion and careful planning so your ABA Therapist can come to assist him through interactions other children never have to even think about. The meltdowns over slight changes that leave you feeling angry and sad. Angry because it’s so frustrating to try and calm someone down over something you think is silly. But sad, because you know he is coming from a place of fear and is still too young to express it with words. The isolation because people don’t always want to deal with your families “special needs” at their house, a special event, their vacation home, etc.
My little family loves each other fiercely. My son and daughter still run towards each other and bear hug when they see each other at their day school…every day! But the advice given with the best of intentions from others cuts like a knife. So I just smile and nod so I don’t scream “YOU DON’T GET IT!”. My hope is this blog will help us find other families dealing with the same situation. I also hope that it will help those trying to support families like ours on ideas of what to say or do. The truth is we aren’t just isolated due to our situation, but sometimes we isolate ourselves so that we don’t have to be rude and say “You just don’t get it and I don’t have time to explain it to you”.
I’ll sum it up by saying I’m mourning the life I envisioned and am doing the best I can….even if it takes me all day and night with a skitzed out dog at my side. #ThereIsLoveInOurMess