Fine, we don't need no stinking surgery.

After having the lengthy pre-op well-check, taking off work, driving up to Dallas at 6:30am and sitting in the waiting room for 3 hours with a hungry baby... the surgery was postponed. Long story short, they screwed up and tried to blame it on everyone else. Their facts don't add up so I'm not buying it. Regardless, this Ophthalmologist is the best at what Garrett needs, and the one Dr. G recommended, so we're sticking with him. I've always said, if I have to choose between the doctor with the best medical skills or the doctor with the best personality, I'll pick the skills every time. I'll just swallow my pride, frustration, expletives... and plaster a big ol' dumb grin on my face till it's all over.

The following day more than made up for it. He had one of his quarterly check-ups by his TCS team and they all agreed; Garrett is about 3 months advanced in all 5 areas of development. That's not 'advanced' from what they were expecting, it's 'advanced' period, in spite of his postulated set backs and hurdles. Boo-ya.

For my own recollection: He says good, mama, bu-bye and "hey dada!", he pulls to stand (even against something flat like a wall, which I'm told there is a distinction) and cruises. He uses the pincer grasp, makes lengthy social eye contact with good interaction and plays well with 'purpose' toys, like ones that have push button, fitted and stacking features.

Like the 100 other times we've been to the International Craniofacial Institute, we mingle with families managing similar syndromes. But for the first time, I was on the other end of an awkward situation. For the first time, Gus was nervous and afraid of the other kids.
There was an extremely vivacious, animated, loud, 7 year old girl with a tracheostomy. We weren't able to understand 90% of what she was saying through her trach, and the sound frightened Gus. He kept trying to hide behind me. I distracted her and we chatted about her favorite TV shows. Then a bright little 5 year old boy came in, and Gus asked The Dreaded Question,

"What happened to your face?"

There is so much pain in those 5 words. No matter how centered and forward we live our lives, that question is like a kick in the gut every time. A time-stopping reminder that instantly drains all the happiness and color out of the room, if just for the few moments it takes to catch our breath and shake it off. And now we were the offenders.
After all these years, all this time to think about it, after all my talk and hypothesizing... I didn't know what to say. As the parent, the one with the info, I've always taken the lead, explaining exactly what it is that make my children look different; "Do you feel that bony ridge under your eyes? It's your cheek bone! My little boy was born without his". But this little boys parents didn't say a thing. There's always the chance no one heard him, right? I didn't know what syndrome their son had. I didn't know what to explain. I froze. Gus saved the day with a shrug of his shoulders and invited the little boy to play with his Spider-Man and Venom action figures. His new friend was just as nonchalant, and off they went. I still don't know what would be the perfect thing to do/say. Maybe by the next time I'll be ready. We better.

But now we're home and recuperating from the excitement of the last several days. We even broke ground on our garden...


But soon it became all about...


And eventually it was more like...

I guess the squash, corn and tomatoes will have to plant themselves.

Spring Forward

Today was one of those days that's so good it makes you feel cliche. We had plans to go to the zoo but when we saw the winding line of impatient preschoolers stacked at the entrance, I simply turned around and told the kids "Sorry, Zoo's full today". The expressions of shocked disbelief and dashed hopes killed me, but without missing a beat Ben cheerily suggested ice cream shakes and an afternoon at the park. They perked up pretty quickly.

At the park, spring had sprung and the Bradford Pears were picturesque, but there was a trash dumpster upwind so I couldn't get any good shots without Gus making a 'stinky face'.

Brenna and Gus ran off in two different directions, which made it harder for Ben and I to keep watch but it was exhilarating to witness the confidence and independence of out oldest two. Brenna hesitated a bit with the big wind-ie slide but when Gus made his way over to that side of the playground, he offered to assist her descent. He first suggested she get on his shoulders but after I made it clear that wasn't happening, they both settled on the traditional one-in-front-of-the-other approach. All it took was that one lesson from her big brother to make her reservations disappear. From then on she was all solo. And very proud of herself, saying
"I'm so bave and tong and tuff."
And modest too!
Well, she did look the part in her pink tutu, ruffled socks and flying eyeball tattoo on the inside of her arm.

Ben and I met two parents whom (whom, not who, right?) had experienced the exact same disappointed pouts as we had. They too planed on a trip to the zoo but decided it was just too crowded. One family had 3 children, all boys. Their oldest had Autism and was dressed in the brightest tie dyed shirt I'd ever seen. The other family had one precious, dog loving, brown haired little girl around 4 with Downs Syndrome. I'm ashamed to admit that people who are different used to make me a bit uncomfortable. Like so many others, I didn't know how to behave. While talking to their parent, do I acknowledge the situation, or completely ignore it? Do I only ask questions of the parents or do I engage the young one as well? Would that make them uncomfortable? Where's the happy medium? But today it was so different. I reveled in the ornery-ness of the older boy. How he critiqued Brenna as she played with her big bouncy ball, trying to represent the behavior of an Emperor Penguin.
"You're doing it wrong. They hold their eggs on their feet not between their knees. And really it's the daddy penguins that hold the eggs. You're a girl. She's doing it wrong, mother."
"Well someones seen Happy Feet!" I giggled. He glared at me and shrugged his shoulders. His mother and I just giggled harder.

I wish there was something I could share, some piece of wisdom I've learned, that could help people who are like I was, be more comfortable around 'us'. Even enjoy the refreshing differences. But it's just not some simple tid-bit of information that will make everything click. It's not a practice or philosophy. For me, it only comes from being immersed in this imperfect life to realize how perfect and normal it is. Well, not normal. But, Why Be Normal?

There was a big black shaggy dog being walked at the park and the little almond eyed girl wouldn't let go. She was attached, one way or another, the entire time we were there. Her dad talked about how her differences don't really matter. How he believes these kids are still essentially the same people they would be with or without any air quote disability. Maybe so. Or maybe they're more.

Were these families always there and we just didn't notice? Are we magnetically charged to attract each other now so we can sit and talk comfortably without having to worry about how the other is feeling.

We get our fair share of stoppers-by. While Ben sat with Garrett, little girls would run up and ask about his BAHA, his small ears, his eyes. We don't mind. So far, it's been innocent questions from people with a healthy curiosity. I think they were interested mostly just because little girls love babies. They want to fawn over him and tickle his fatty fat legs.























Garrett said mama on the 1st, crawled on the 5th and today he's cruising from one piece of furniture to another. NO! Stay a baby! Any tips on how to slow him down? I've heard about putting a brick on their head but I'm afraid that might damage the BAHA.

Earlier, We were all sitting on the floor when Gus leaned in and gently said "I love him. He's special to me." and I got all teary eyed, savoring the moment. Then Gus looked at me and said "Do you smell that?" So I sniffed. And gagged. He laughed and said "I burped."

Just before bed, Ben handed me a love poem he'd written about me.

It was a great day.

Gag me with a spoon, right?