Another Chapter: Working to Maintain

As we made the drive to Riley yesterday, I couldn't help but feel as though it was taking longer than normal. My mind was racing -- yes, a bit more than normal, and my heart was heavy. 

I shouldn't have had a heavy heart -- the past four days had been amazing! We had a wonderful 4th of July and Walk for CSF -- our first event as a soon-to-be chapter of an amazing non-profit organization. The boys had a blast and Phil and I felt relaxed.

Still, I couldn't sleep the night before; there were storms and my mind wouldn't turn off... all instigators to the anxiety I woke up with.

I'm sure most of the nervousness I felt came from having to meet yet another doctor. No, I'm positive...

Yesterday marked 4 weeks since Graden's surgery (Wednesday is the official "month"). And, while I will never forget what he went through, there are certainly moments when I let it slip... when I feel like it was years ago - not weeks.

His scar is almost uncovered from the glue/adhesion (remember, he didn't have stitches or staples). It's still difficult for me to look at, but it's just another reminder of all that he has gone through, which is exactly what got me through yesterday.

When we finally arrived at Riley, we checked in, and waited to be called back. 

In those moments in the waiting area, my mind always goes through a series of questions:

"What will she look like?" (As if it makes her a better doctor...)

"How will she sound?" "What if I don't understand her?" "What if she doesn't understand me?"

"What if she doesn't agree with what's been done so far?" "What if she wants another surgery?"

"What if...?" "What if...?" "What if...?"

Thankfully, I didn't have long to consider all these questions, doubts, worries; we were called back within a few minutes. Graden went through the motions of the "check-in" like an old pro: height, weight, blood pressure, and questions... 

The nurse asked minimal questions, which was surprising because this was our first visit in their office, and left us to wait for the doctor, who would "be in shortly."

The doctor came in minutes later, and I immediately began sizing her up... Isn't that horrible? Am I the only person that does this? (Phil admitted he did the same, so I guess I'm not completely alone.) 

I didn't have too much time to compile a reaction; she got right to work asking questions and developing our relationship. It was clear she had done her homework; she knew about most of Graden's history. 

As we started from the beginning and caught her up on details, she made notes and provided explanations instead of just writing and nodding at us. I was really very happy with her willingness to talk with us instead of to us... She was so thorough and gave us an even deeper understanding of Graden's Heterotopia -- the cause of his seizures. 

It felt good to finally be able to focus on the other of Graden's two brain abnormalities... With the attention being on his Chiari Malformation these past several months, I was thankful for her thoughts about the seizures and how the two affected each other. 

So, what did she say?

Well, the jest of it is pretty straightforward at this point... 

First, we will add a vitamin to his current medication in hopes of helping his mood swings, which is the result of his current medication. The medication is working well, so we don't want to change it; we just need to see if we can help him work through his frustration/emotions.

Next, we wait for the results of the two (possibly three) upcoming tests to determine any changes in his Chiari (after surgery). The surgery of the Chiari *hopefully* altered Graden's Central Apnea, which in turn will improve his seizure activity (sleep deprivation is a huge factor in the types of seizures Graden has). 

We will work to notify others - family, friends, teachers - of how to respond to seizures and work to prepare Graden for Kindergarten. In fact, Landen and I may attend a class that offers scenarios and information. (The doctor also sent me home with tons of reading material!)

We will meet with her again in October to decide if we need to add a medication or if his current seizure activity is "under control." 

Lastly, we talked about Graden's restrictions, which we've always known, but we also always ask. :) As we expected and have known, no football, and no other sport that uses their heads (soccer). She did clear him for baseketball, unless they start using their elbows, which we'll have to address as he gets older. She suggested golf and told us he could play baseball, but he must wear a helmet. Basically, with sports, we'll have to play it by ear and "better safe than sorry." 

We must be careful with heights (climbing, specifically) and water - because in the event he has a seizure, it could be most dangerous. Driving may not be an issue if he's seizure free for six months, but, of course, that's way down the road... And, we will always have to be mindful of his head because of the Chiari. So, we'll see how our surgery follow-up goes on Wednesday.

All in all, we think it went great; she seems positive we can work to keep his seizures under control - not just the large ones, but the minor ones as well. The next few months will bring us more obstacles in the testing, but let's hope we can get to a point where we are "maintaining" and not "fighting." 

In honor of Graden's love for basketball, I leave you with this quote... 

"If you're trying to achieve, there will be roadblocks. I've had them; everybody has had them. But obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it."
-- Michael Jordan 

"What if they don't like me?"

We've all wondered this before...

A new school. New neighbors. A new job. A new team. A new church. At the park, pool, or playground. In an interview. Meeting the in-laws. Any new environment...

"What if they don't like me?" Graden asked.

"Who?" was my immediate reply.

"You know. The kids at my new school. What if they don't like me?" Graden was so serious. He's never serious.

"Honey, of course they will like you. Everyone likes you. You're funny and smart and nice." I couldn't grasp where this was coming from, because he is very much all of those things and more. Honestly, people have always been drawn to Grado. Who couldn't like him?

He seemed to be contemplating my quick, concise answer. So, I pressed him a bit. "Why would you think they wouldn't like you?"

"Because I have a special brain."  BAM! Just like that - I felt as if I had been punched in my stomach. Trying hard to fight back tears and quickly be clever, I spat out: "That just means they'll like you more."

I'm not sure that was a good answer, but it's what came out. He smiled, nodded, and seemed to agree.

He was quiet the rest of the drive home and didn't bring it up again...

But, I couldn't get his question out of my mind.

I've been in school as a student and a teacher; I've worked with kids of all ages both professionally and socially. Not all kids are nice. I'm not going to go into why they aren't -- that's an entirely different blog post. Please note that I do not blame the kids.

The problem is that when someone asks him why he's different, struggling, missing school, falling behind, or behaving differently, he's going to have to answer honestly and tell them he is different. And, while I think that's okay, his "friends" may not understand. Even if they are okay with his differences, their reactions and questions could be enough to upset him.

Now, I'm not asking him to hide anything. I'm not even asking you to tell your children not to ask him about the big scary scar on the back of his head. I'm asking parents to remind their kids that each of us is different, and different is okay - good even. In fact, I encourage Grado to tell others about his health. It's never been a secret in our house (clearly - check out my blog) and I want him to know that there's no shame in being different or overcoming obstacles - of any kind.

As a mother, though, I'm tense. I, too, worry about whether or not they will like him. I can't tell him that, and I know I shouldn't be, but don't we all want our kids to be liked? To be the nice ones? To appreciate the differences in others and stand up for each other? Of course we do. And, we can teach them how to do these things, but feelings can still be hurt - unintentionally. I won't be mad at others; I will be sad for Grado.

As my last baby enters school, I have to realize that Momma can't fix everything.

The best thing about Graden's medical history and surgery (yes, something good has come of this) is that he (and we) realizes that he could be worse. At 5 years old, Grado appreciates that he can walk and talk; he has met kids (and adults) who cannot. As his Momma, I appreciate him every single day. Literally.

I don't not know if the kids will truly like him. I bet they will; he is pretty great.
But... If they don't, I hope he understands it's their loss and nothing that he - or his special brain - did.