Meltdown Hangover

I am 99% of the time firmly in the autism is beautiful, never easy, but beautiful camp. I never presume to tell you how the autism in your house should make you feel. Ever. That’s not my job. I know Big’s autism isn’t about me, but it kind of is. I’m his mama. He walks around everyday with a large piece of my heart. So, when his heart breaks, mine rips open. Today I feel like autism is brutiful, to steal a phrase from the great Glennon.

If you follow our Facebook page, you probably know about yesterday’s meltdown. If not, you can read about that here. It was a doozy. The important thing on his end is that he made it, he moved on. He ended his day and night on a positive, joyful even, note. He woke this morning bright eyed and bushy tailed, ready to take on the day. 

Here’s the part where it’s about me. I have a meltdown hangover. My head and stomach hurt. I’m tired and feel like one of those nights from long ago when I took tequila shots. My chest has a tightness and anytime my phone buzzes, I panic just a little. I start looking toward the future distant and the one that is creeping up at a pace I can’t stand. I’m scared of puberty and what it will bring for my kind and gentle boy. Teenagers aren’t exactly known for taking care of the ones with fragile hearts and spirits. I’m scared of impulsivity and boys and adding autism to the mix of an already combustible cocktail? I don’t know if I’ve got it in me. 

Yesterday Big said, “It is all too much mama. I can’t do this anymore.” At that moment, my heart shattered into a million tiny pieces. Fighting through tears on the phone, I said, “yes, baby. Yes you can. You can always do this.” His little voice over the phone was so unsure. So scared and tired. I did the best acting of my life in that moment, not sobbing. Sounding upbeat. 

Today, I can’t shake it. I can’t have some hair of the dog and Tex-mex for this hangover. Time. I just need a little time. This weekend we are due for heavy rains and flooding which means couch time and seeing my boy be himself, naturally happy and silly and getting on my last nerve. Maybe by Sunday. Sunday morning over cinnamon rolls and coffee I’ll bet my hangover leaves. 

I made this photo today saying Big might very well be the picture of resilience. Maybe that’s the beauty of his autism today. No matter the challenge, he comes back. I should learn from him.  

Pardon any errors here. I’m blogging on my phone while the WeeOne dominates the computer. 


Handing Him Over

It doesn’t matter how many times I do it, it never gets easier. For the record, it’s been more than ten times that I’ve handed my baby over to a surgeon. Every time, my eyes fill with tears. Every time, my heart breaks open. Every time, my mind races. Every time.

The first time I handed my beautiful boy over to a surgeon was perhaps the hardest and most dreaded experience of my life. It was going to change him. Not just in the “he’ll feel better way.” In the very real way of every time I looked at him, he was going to be different. I’d grown fond of his little smile. He was beautiful and whole just the way he was. He was perfect. Because he was only four months old, he was one of the first scheduled that cold, January day in 2005. He couldn’t have his bottle that morning and had never been able to use a pacifier to soothe. We drove to Austin, me in the back seat with our boy singing “The ants go marching one by one…” and Daddy driving. We got our wrist bands; I signed forms. They put one on his tiny little pink wrist. I wanted so badly to cut it off and take him away from that surgical waiting area. But, I resisted. Because I knew this is what has to be done. The wait was both an eternity and a split second. As surgeons, anesthesiologists and nurses came and asked the same questions, I teared up. I signed more forms, never reading about the “what could go wrongs.” Then, the moment came.  A nurse in her cartoonish scrubs, took my tiny boy from my really firm hold. She cooed and sang and walked through the double doors. I think I sank to the floor in tears. The rest is a blur. Two days in the hospital, syringe feedings, no-nos. I mistakenly wore a white t-shirt. I remember that. I remember the tiny crib with metal bars when all I wanted was to crawl in there with him. I remember rocking him in the rocking chair and vowing I would never do this to him again. But, I have. Nine more times.

The years where he was aware of what was happening but before he understood were the hardest. The meltdowns, panic and pleas of help were too much to bear. But here we are eleven years later. Guess what? It doesn’t get easier to hand him over, but it is more bearable. I have less panic because he understands the why. With his last surgery on Friday, he had his turbinates reduced in an effort to postpone a more major septoplasty. He rocked it. He didn’t cry, he didn’t plead for them not to take him, he didn’t even need the versed (aka goofy juice). He woke with out pulling out his IV. During previous experiences, he’s woken screaming (before they bring your child to you, they go to a recovery area) and pulling out anything that may be attached to him. I may or may not have gone into a restricted area when I heard him yelling and terrified. But that DIDN’T happen this time.

We still have surgeries in our future: Jaw Distraction, septoplasty (maybe) and anything else that creeps up between now and when he’s an adult. But, there’s one thing I know, my boy is a survivor. My boy is strong. My boy will handle it, like a boss. Me? I’ll be over there in the waiting room, being inappropriately silly with my husband in an effort not to curl up in a ball. But, make no mistake, even though I’m laughing, part of my heart and soul will be in another room surrounded by machines and anesthesiologists and surgeons and nurses. Another part of my heart and soul will be cared for by people who are not me. I will be over there in the surgical waiting room, with tears in my eyes, counting the minutes until my baby is back in my arms.