My week of awesome.

 

“A hero is somebody who is selfless, who is generous in spirit, who just tries to give back as much as possible and help people. A hero to me is someone who saves people and who really deeply cares.” Debi Mazar

Through my journey as Grant’s mom, I have been touched by the kindness of many people. This week, one particular person kinda blew me away.

She’s this itty bitty thing with cute brown curly hair. She is a mom of five little ones, including three triplet boys. She is a super fast runner … like the kind of girl who can outrun boys – which ya just gotta love. Our friendship is pretty new, as I have only known her a little over a year. Of course, I met her on a trip to Vegas to run a half-marathon, so that bonds people pretty quickly.

The thing I have noticed about this particular chick is she seems to not realize her insane fabulousness. She is so beautiful on the inside, and equally so on the outside. She is hilarious and quite the blogger. She is also an awesome mom.

Here is what this amazing woman did for me … every day this week I had a special card with a handwritten anonymous note. All of the messages were uplifting. There was a gift card enclosed in every one. I don’t want to say specifically because I know she would be embarrassed, but I do want to say she picked places that were so awesome. For example, the movies and my family’s favorite restaurant.

While I loved every card, my favorite was the one with the Boston Terrier that said, “Times are tough. Yesterday, I had to sniff my own butt. This stinks, I hope it gets better soon.”

People often ask me what to do for a friend or loved one going through a hard time, such as a medical issue. From now on, my answer will be to read this blog. Every single day I felt like I got a big bear hug when I opened the card. It was so much fun. I felt so loved. It was like my crap sandwich had a chocolate shake with it. With whipped cream. The real kind. Like at an old-fashioned malt shop.

CHRISTY BOCCONE you are all that and a bag of Sun Chips – with a side of fucking awesome.

Love you girl.

Grant’s Scoliosis Story – Diagnosis and Brace Fitting

For readers of my Crap Sandwich blog, I wanted to update you on Grant’s scoliosis journey. I also blog on a hospital’s blog community, so I am including that link here. I chronicled our experience with Grant’s diagnosis of scoliosis and the molding of his brace. If you subscribe to me here because of my special needs parenting topics, you might want to subscribe over there as well. You will find my posts a little less “colorful” (ahem), but still with some crap sandwich flavor.

Not to worry, there is more crap coming soon. But for many of family and friends that want the latest Grant updates, I didn’t want you to miss this post.

And just for fun, here is a list of all my blogs written on the hospital’s community blog. Happy reading!

Curvy spines really piss me out.

I have to warn you, this post is totally like my brain threw up. With that out of the way, here goes.

As you may know, one of my favorite Grant memories is when he told his dad (after being told no about something), “Mike, you’re really pissing me out.”

And truth be told, I am totally pissed out myself. Today was our appointment with Riley Orthopedics. We left here at 10:15 a.m. to give ourselves plenty of time to get all the way to Carmel for our 11:30 appointment. And even with the Garmin, I got lost. Which is saying a lot. Who does that shit?

But we made it in the nick of time. To wait. Forever. And I lost my cell phone. But really, it was in the car, where it had slid to the very back on the floorboards. And I had to search frantically for it because I had typed in question for the doctor and they were in my memo app on my phone. Stupid phone. Stupid technology. Stupid Garmin. (In all fairness, I love my phone and the Garmin, and it was user error on all of the above. But I am still pissed out, so I am throwing some blame around just for the hell of it.)

We finally get into the exam room about an hour and 40 minutes later, and it goes from bad to worse. Grant and Lily, who were teetering on the edge by this point anyway, totally had meltdowns. And when the specialist finally walked in, they decided it was a perfect opportunity to begin arguing over a drawing game and literally kicking each other. Well, Grant was trying to kick Lily, and she was running around the exam table attempting to get in a few good kicks as she passed him. It was fucking lovely.

Now onto the ‘ologist. I give him props. Instead of glaring at the children or looking at me as if I am a horrible mother, he smiled and pretended all was serene. Love him for that. Then he pulled up Grant’s scans and proclaimed they were not detailed enough and we needed to redo them. So we did. Meanwhile, the children are still behaving like monkeys that have had too much sugar. Which they had not, I might add.

He begins to look over Grant’s medical history. His exact words were, “Wow, he has had a bit of a … ummm … packed health history.”

No shit.

And God bless him, we recapped as fast as we could, and he got onto the nitty gritty.

What are we going to do about my kid’s jacked up spine that is growing to the side while the rest of him grows straight up?

Unfortunately, the options all suck.

So, we are going with the less sucky option. Grant’s curvature is significant at 33 to 36 degrees. His scans show that although he is already 5 foot 10, he has significant growing left to do.

The choice of “waiting and seeing” is a bad one. He and I agreed completely. To not act would be, according to him, “playing with fire.” If his curve reaches 50 degrees, surgery would be needed to prevent major health problems such as respiratory distress. And Grant is a very bad surgical candidate due to his immunodeficiency and and other health conditions.

So a rigid brace is the only option. And there are no studies on how autistic children/those with sensory disorders handle this. The specialist is worried and so am I. But there is absolutely no choice. I am going to have to rely on my peeps on Grant’s team to help desensitize Grant to the brace and to give me skills/techniques to help him as well. We will have to work up to 23 hours a day of wearing the brace, likely until he is done growing.

OMG. Deep breath.

Another twist (no pun intended) is the fact that Grant’s curve is not a typical one (why would it be?). Instead of side to side his is kinda front to back (that is totally not a proper explanation, but hopefully descriptive). I asked if that could be because of chemo/steroid use during cancer treatment or perhaps Grant’s very low muscle tone he has had since birth, and he thought perhaps the low tone could have contributed. He wants to do a full neurological work-up to make absolutely sure we haven’t missed any other issues with his spinal cord. I am totally fine with this and happy he is being so thorough. We will be doing a spinal MRI under anesthesia as soon as we can get in.

Next steps include going back to AOI, who made Grant’s shoe orthotics as a toddler. They are very skilled with scoliosis brace fittings, so that is our plan. Then, after he is in the brace for two weeks, we will go back to the specialist. At the time, we will have all of the diagnostics back and can make a plan for moving forward.

Tomorrow, I am going to know that this too we can handle. That Grant has been through so much worse and came out smiling on the other side, drawing penguins and platypuses and loving life. That he is a total rock star that rode a horse for the first time at Camp Little Red Door this week. That handles medical tests like a champ. That says he loves you even though he won’t ever remember your name. That gave every boy on Avery’s basketball team a fist bump after practice last week, yelling “You guys are great at football!”

Tomorrow, I will know that it will all be fine. That we got this.

But today … today is not tomorrow. Today I am angry that he has one more thing to deal with. And I am sad that he continues to have challenges thrown his way.

Today I am just completely, totally, overwhelmingly pissed out.