3 Months: Medicine-Free!

Grado has been medicine-free for three months today!

Overall, he's been doing great... So great, in fact, that there were days when I honestly didn't think about his health. I cannot explain what that feels like, but it's a mix of scary and relief. Scary because I don't ever want to completely forget and relief because it feels good not to remember...

Yesterday, though, we had a reminder that he lives with his "special brain" every day.

After a fun, eventful but relaxing, weekend, we were being lazy, sitting in our backyard, enjoying the beautiful, overcast day, and the boys talked Phil into playing catch with the football, which quickly turned into a game of "Tackle Dad."

Phil was easy; he always is. But, that didn't stop Graden from running to Phil and jumping in his arms. Phil, like any good dad, picked him up, turned him upside down, and spun him around... all in good fun, of course. Graden and Landen (and Phil!) were all smiles and their laughs were contagious as I watched safely along the sidelines.

A few minutes passed, and Graden walked over to sit down beside me.

He said the words that I hate to hear, "My brain is going crazy mom."

The yard went silent. Landen looked at me, and I turned to look at Phil. We all know what those words mean.

And, to be fair, I don't know if Graden really feels his brain going crazy, but who are we to question this kid? He knows his brain better than we do, so we listen. We don't have a choice. And, anyone who knows Grado knows he doesn't just stop or take breaks lightly. So, we sat there a few minutes, waiting...

I couldn't take my eyes off him. I kept thinking that he may be feeling a seizure coming on... And, instead of wrapping my arms around him, I had to put my game face on, knowing that I may be forced into quick action.

We tried asking him a few questions, "Where is it going crazy? Can you point to it? Is it like a headache? What does it feel like? Do you need some water?" He tried answering, but he can't fully explain it. After a few sips of ice water, a few hard blinks of his eyes, and some calming breaths, he seemed to be calming his crazy brain.

Needless to say, we sat in silence for a bit longer. I think Phil felt bad, but it's not his fault. We never know when Grado's brain is going to "go crazy." Maybe they were playing a bit rough for his head, but they really were being careful, "normal" boys... so, what do you do? I can't put him in a bubble forever.

Although, there are days when I wish I could...

So, despite being medicine-free for three months, we're still walking on this journey. Of course, most days, Graden is running, but he's so tough and grows more so each day.

"My brain is going crazy, Mom."

"My brain is going crazy, Mom."

Words you never want to hear from your child, especially your child with a special brain.

But, what do you do? Tell him it's nothing. Probably just a headache. I mean the weather has been crazy; I've had a sinus infection for two weeks.

I could ignore him or think he's just trying to make an excuse for his bad behavior at school last week. I could consider that it's a growth spurt because he's hungrier, sleepier, and more emotional than he has been in months.

So, I called the doctor Friday morning after hearing the words off and on over the last week or so. Of course, there's more I'm not saying here -- like how he got in trouble two days in a row at school. How he's been in ISS (also twice). How he's had visits from the principal and has even had the pleasure of being called into her office. That's right, my Kindergartener has been in ISS and has been seen by the principal. Neat.

Of course, that's on top of his behavior at home, which has left a lot to be desired. He's happy, he cries, he laughs, he yells -- all within 8 minutes. It's not normal.

"My brain just goes crazy sometimes, and I don't know why. Here and here (he points to places on his head), Mom. It's weird."

Well, okay, then. My response? "Well, your brain is special. Maybe it needs a break. Like a rest? Just take a rest for a minute."

What the hell else do you say? Why, yes, dear, you're acting crazy. Can you make it stop? Um, not quite. Not to my six-year-old son; you know, the one who has already been through more than many people deal with in a lifetime.

So, again, I called. They called me back. And, VIP-status, I suppose, but we got right in on Monday -- today.

We went. We're home now. It was a fast visit, and I'm not sure I'm 100% satisfied with the plan. For now, though, I will go with it, because... what else can I do?

The point:  He shouldn't notice much of a change, but we're going to work on weaning him off his medication. This could potentially open the doors for seizures to happen, but we have to see how his brain responds since he hasn't had a full seizure in years. Once again, we rely on the risks and benefits. They're always so close on the scale, but it's tipping more towards benefits... so, we try.

Let's just hope it helps him and his crazy, special brain... 

"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.

One week... ago!

Can you believe it? This time, last week, we were saying our goodbyes to Graden, watching him laugh, without a care in the world, as he rode back to the operating room on his hospital bed, preparing for what could be the worst surgery of his life...

I say worst surgery because it was scary. Risky. Major. It involves hours of precision, care, and attention. It's at the base of his brain -- so very close to his spine. They actually touched my child's brain stem...

But, that's not all! The recovery is horrible. Long. Challenging...

Or, it is supposed to be!

But, for our Grado, it's been difficult - not horrible. Just another challenge he is determined to overcome. I should have known...

Makes me wonder why I was ever worried in the first place? (Yes, I'm being sarcastic!)

I will always worry about him, and we do still have a long road ahead of us, but overall -- this kid is amazing! Honestly. Doctors and nurses, Neurologists, Neurosurgeons, and Neuro-technicians all commented on his ability to respond, move, and tolerate pain that most cannot after a surgery like this - no matter their age. 

We did have our scare, but it really may have been a "fluke." We will pursue that further as we recover...

So, now we're home, beginning the second week, and we're doing okay. We are all okay...

We still have restrictions:
-no soaking in water (no baths or swimming)
-nothing on the incision (lotion, ointment, or sunscreen - so we won't be outside much)
-no touching the incision (which is one of Graden's biggest challenges because it itches!)
-no "rough" play (obviously!)
-no swinging, biking, climbing, running, or jumping -- feet need to stay on the ground
-and we have to check the incision daily and be very careful of infection, so we're cautious about visitors these next few weeks because even the slightest fever can put him at risk...

We did let him "play" outside for a bit last night, as we sat on the deck just enjoying the weather. He wore himself out quickly, though, and slept soundly last night. He's had very little pain medication, but we made sure he had some before bed so he didn't wake up sore from trying to do too much, which is another of his big challenges.

Overall, though, we're doing better than any of us (doctor included, and especially me) anticipated. This week was supposed to be spent lounging around, taking it easy, and we're still trying that, but he's definitely moving more easily than I could have ever imagined. His range of motion is still limited as his neck muscles heal, but, again, he is bound and determined to climb this mountain on his journey...

And, those of you who know him will be happy to hear he didn't miss a beat or lose his sense of humor. :)

What's next? Well, we recover. Get stronger, and we go back July 10th to visit our Neurosurgeon at Riley. At the follow-up, we will talk about the "next step," which should include follow-up tests to determine the success of the procedure. We know the surgery was successful, but we won't know if it alleviated any of our health concerns until we complete those tests -- MRI and/or Swallow Study. We can't do those tests, though, until he's had time to heal...

We still live one day at a time, and many days, we go one hour at a time... and, I'm okay with that, because he's home. He's doing great, and he's still my Grado. I couldn't ask for more.

Much of his success comes from family, friends - both new and old, and friends-of-friends or -family. The power of prayer, good thoughts, and well-wishes is truly amazing. It seems that as we've been on this journey we have learned about so many others who are also going through challenges. Some are overcoming their obstacles while others still have a tough road ahead. 

I've wondered what I would be blogging about if Graden's recovery wasn't going so well. In fact, that's what I prepared for before his surgery began. I wanted - no, I needed - to be prepared for the worst. And, I'd like to think that I would still be able to acknowledge that everything happens for a reason... but I know that acknowledgement would not be easy, and, while I can't fully imagine, I definitely came close...


Today, I end with this:

I am thankful each and every day for what I have, exactly as it is. While it could be better, I sure know it could be so much worse. For those of you going through similar challenges with health concerns, please know that we are thinking of you and are here if you need...

To all of you:

Thank you. Plain and simple. Not just from the bottom of my heart, but from the whole darn thing -- thank you, thank you, thank you to each and every single one of you. 

He finally asked the question...

Today, I brought Graden with me to work.

Before we headed into class, we needed to drop Landen off to catch the bus. As is usual for our Friday mornings, we were singing along with the radio (thus, my Facebook status about "gettin' jiggy wit it") and enjoying our morning commute. :)

Out of nowhere, Graden asked, "Why do I have to have surgery on my special brain, Mom?"
Before I could answer, Landen followed with, "How do they get to his brain?"

Without missing a beat, trying to think fast and carefully, I offered the following:

"Remember when you had your test in the big, circle machine (the MRI)?" Graden quietly confirmed with an "Uh-huh." "Well," I continued, "they gave you medicine to help you get really sleepy so you wouldn't get hurt or feel anything." Graden again confirmed, "Uh-hmm."

I could feel both boys staring at me, so I went further. "They'll give you that medicine again. You'll be asleep and they'll cut open the back of your head to see your special brain."

After another pause, and still feeling both boys watching me, I continued with my explanation. "The doctors want to see if they can fix the broken piece in your brain so it can work better."

While I was considering what to say next or if I should even say more, Landen tilted his head and asked, "How will they close it when they're done?"

"I'm sure they'll stitch it up." Hoping that was enough for him, I peeked in the rearview mirror to see how Grado was taking this all in...

After a few minutes of listening to a new song, he, very seriously, asked, "Will my brain still be special?"

"Oh, yes! Your brain will always be special."

"Well, okay." Graden said, nodding approval and moving on to the beat of the next song.

--

I share this because I thought it was amazing that Graden is not scared of being "cut open." He was more concerned about being exactly as he is now... special.

His comments, his focus, reminded me that I, too, should be focused on how special he is and will be... before and after this surgery.

So, today, my worries feel lighter somehow as my ornery, honest Grado teaches his Momma a thing or two. :)