Date of last post: July?! I can't believe it's been that long since I've blogged... So much has happened in four months. I've used social media as my way of updating, because I haven't made the time to sit still until this weekend... this Thanksgiving weekend.
Here's a condensed version of the past four months: I got a new job in August. Actually, my hire date is my birthday: August 14th. It's cool that it's on my birthday, except that school started two days later. Needless to say, I had to get things together quickly, and, honestly, I think I'm just now getting to the point where I feel slightly organized. I won't lie and tell you the transition was easy, because it was nothing like I had hoped, which is one more reason why I haven't blogged. But, it has been so worth it, and I'm so glad I made this career move. I love being a teacher, my students, my coworkers, and my school, and I wouldn't change a thing about it. As you can imagine, working full-time was a major change for our family, but we're starting to get into a routine. I didn't leave IPFW all together, though, and am hoping that I can still teach a class or two throughout the year.
Phil is still working as hard as ever and has been super supportive of my stress-driven mood swings over the past few months. Thank goodness he is a patient man! In September, we celebrated our 10th anniversary! Who knew he'd keep me that long? :)
Landen has grown several inches and has no problem telling everyone that he's almost as tall as them, especially his aunts. He's doing very well in school and is finding neat things to take interest in -- history, art (drawing and designing), and reading. I am also happy to report that he has been writing! I'm saving the stories he creates... they're funny and so creative! He will begin basketball season, soon, and with his growth, I can't wait to see how he has improved his shot. All in all, he's loving 3rd grade and life in general. He is so happy and sweet, and we love watching him learn and grow into an amazing personality.
Graden is... well, he's Grado. :)
Over the past several weeks, he's had a few appointments and tests. We had a few concerns about his brain (based on some of his comments and behaviors), so we got him in for his 6-month follow-up (medicine free, remember?)... it didn't go so well. He's grown, too, of course, so we were truly hoping that he was just experiencing some changes due to that, but the results showed that he's having several series of seizure spikes. So, it's back to medicine.
He started a few days ago and seems to be okay so far. It takes 3 months for the medicine to get into his system, which means 3 months of possible side effects and waiting. And, waiting is the worst part! The last time he was on this medicine, he was extremely sensitive; he would cry and couldn't tell us why. He would be tired without doing anything. It was frustrating for him and us. We sat him down to tell him what the doctor said, and he just looked at us and said, "Okay, if that's what it takes." Clearly, I took the news harder than he did. I know it's just medicine, and I really need to be thankful he's still here...
This morning I heard the terrible news that one of my former students died in a car accident last night. I didn't know her well, but we became connected via social media and remained in contact. She was young, beautiful, and had a contagious personality. I loved having her in class and am heartbroken that I can no longer hear about her adventures. When I hear stories like this, I want to squeeze both my boys and lock them in their rooms, but I know that isn't fair. Instead, we live each day and enjoy the moments we do have... we never know when our moments will be gone.
When someone asks me about Graden, I justify his health in weird ways... I always make sure that they know he's okay by saying, "Oh, you'd never know he has trouble," like I'm afraid they will judge him. Maybe I say it for myself, as a way to downplay how serious his illnesses really are? I just don't know why I feel like I need to make him "fit in" or seem "normal." Regardless, he is okay. He does fit in, and I think he's pretty normal. :) He's been reading nonstop, which is so crazy to me. Just one year ago, he didn't think he could ever read; he thought he was slow and behind all the other kids. Now, though, he's thriving in 1st grade. He's still a little rough and tough, but, honestly, I will take that over being down sick any day!
Overall, I'd say we've had an eventful four months, but we're starting to slow down and remember to enjoy each other. This Thanksgiving (and every day, really) we have a lot to be thankful for, so we made sure to give our thanks. We've discussed our gratefulness as a family, and I hope we never forget how far we've come. May we also never take for granted that our path could change any day...
Happy Thanksgiving weekend, friends. I'm happy to be back. xoxo
Showing posts with label Graden. Show all posts
Showing posts with label Graden. Show all posts
Saturday, November 29, 2014
Monday, July 7, 2014
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.
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.
Tuesday, June 10, 2014
Celebrating One Year!
One year ago, at this very moment, we let a stranger take our child away for a surgery that would change his life - that would change our lives.
On June 10, 2013, at approximately 7:30 am, Graden's Chiari Decompression began. We were left feeling scared, nervous, and angry. I remember the walk back to our family. Phil and I had to stop in the hallway to take a breath (literally) and compose ourselves a bit before meeting them at our table in the waiting area. We were able to tell them that only our Grado would be excited about the "cool masks" and "cute nurses" he saw. We couldn't help but smile despite the situation.
I'm not sure I want to relive that day, or the days the followed, but you can read the details here and here. Or, you can check out my blog posts from last June, but I just don't know if it's the same as being there, living it, watching your child go through it... I'd like to think I have a "way with my words," but even I as reread my posts, I realized I couldn't possibly capture all the feelings... There's just so many flooding me even as I type this a year later.
Today, though, you can't tell. You would never know what Graden has gone through if I didn't tell you. Of course, you would see his awesome scar, but he doesn't mind that. He's got a few more rules he has to follow, but, again, he doesn't seem to care too much. He believes his brain is special, but we know all of him is...
I look back at our lives over the past few years and wonder how we made it. Then, I stop and think about our lives since Graden was born and smile knowing how far he (and our whole family) has come. He will be 7 years old in November, and I cannot believe it. It's not a "wow, time flies" kind of disbelief; it's a "holy shit, this kid has gone through something every single year he's been alive" kind of disbelief. And, as always, I never take for granted that it could be worse, but I won't say it could have been better, either... it made Grado exactly who he is today, and I am okay with that.
Since his surgery, though, I can honestly say this has been his best year of health! He made it through winter with barely a cold, which is quite miraculous in this family. He's been off his medication for months now, and there have been no signs of compulsive seizure activity (although, we do have a follow up in a few weeks), and he ended his first year of schooling as a successful Kindergartner.
I think it's safe to say this kid is tough. He's certainly my stinker and thoroughly loves keeping me on my toes, but who am I kidding? I would not have it any other way, because as soon as I consider the alternatives - being sick or having seizures, I remember that being ornery and driving me crazy is so much better.
So, today, in honor of his one year surgery anniversary, we celebrate Grado. We celebrate his strength, his determination, his sense of humor, and his heart. But most importantly, we celebrate his good health! Here's to one good year down and in the books! We love you, Grado!
On June 10, 2013, at approximately 7:30 am, Graden's Chiari Decompression began. We were left feeling scared, nervous, and angry. I remember the walk back to our family. Phil and I had to stop in the hallway to take a breath (literally) and compose ourselves a bit before meeting them at our table in the waiting area. We were able to tell them that only our Grado would be excited about the "cool masks" and "cute nurses" he saw. We couldn't help but smile despite the situation.
I'm not sure I want to relive that day, or the days the followed, but you can read the details here and here. Or, you can check out my blog posts from last June, but I just don't know if it's the same as being there, living it, watching your child go through it... I'd like to think I have a "way with my words," but even I as reread my posts, I realized I couldn't possibly capture all the feelings... There's just so many flooding me even as I type this a year later.
Today, though, you can't tell. You would never know what Graden has gone through if I didn't tell you. Of course, you would see his awesome scar, but he doesn't mind that. He's got a few more rules he has to follow, but, again, he doesn't seem to care too much. He believes his brain is special, but we know all of him is...
I look back at our lives over the past few years and wonder how we made it. Then, I stop and think about our lives since Graden was born and smile knowing how far he (and our whole family) has come. He will be 7 years old in November, and I cannot believe it. It's not a "wow, time flies" kind of disbelief; it's a "holy shit, this kid has gone through something every single year he's been alive" kind of disbelief. And, as always, I never take for granted that it could be worse, but I won't say it could have been better, either... it made Grado exactly who he is today, and I am okay with that.
Since his surgery, though, I can honestly say this has been his best year of health! He made it through winter with barely a cold, which is quite miraculous in this family. He's been off his medication for months now, and there have been no signs of compulsive seizure activity (although, we do have a follow up in a few weeks), and he ended his first year of schooling as a successful Kindergartner.
I think it's safe to say this kid is tough. He's certainly my stinker and thoroughly loves keeping me on my toes, but who am I kidding? I would not have it any other way, because as soon as I consider the alternatives - being sick or having seizures, I remember that being ornery and driving me crazy is so much better.
So, today, in honor of his one year surgery anniversary, we celebrate Grado. We celebrate his strength, his determination, his sense of humor, and his heart. But most importantly, we celebrate his good health! Here's to one good year down and in the books! We love you, Grado!
Tuesday, November 19, 2013
Back to Reality...
Last week was... well, it was every positive adjective you can think of: wonderful, amazing, relaxing, exceptional, fun, perfect. Most importantly, though, it was exactly what we needed - a week with no worries, no appointments, and no schedules to follow.
We knew it would eventually come to an end, and we were okay with that. We only needed that week - that break from everything. Thankfully, we remained safe when we flew home Sunday and only had a minor flight delay. The flight before ours to Illinois wasn't so lucky... We send our love to those families hit by the storms and will be thankful we landed safely (although quite bumpy!).
Yesterday was rough for all of us; we went to bed early! I suppose that's what we get for taking a trip in the middle of work and school. ;)
And, today, we're back to reality. I wrote in my last post that I have been busy, and I have. But, there's more to why I haven't blogged in awhile.
Grado has been having some new struggles. So, today, he is having a reevaluation with his Neurologist and Neuropsychologist. I'm not sure I am able to offer all details, because there's just so much, but the jest of it is that he's becoming very defensive and protective of his head. If someone gets too close, he panics... he even pushed a kid down at school because he thought the child was going to "hurt his brain." I'm sure Grado doesn't mean harm to anyone, but I also know he's scared. And, let's face it, brain surgery is a lot for anyone to deal with, so I imagine it's worse for a 6 year old (ah! I can't believe he turned 6!).
Grado has been having some new struggles. So, today, he is having a reevaluation with his Neurologist and Neuropsychologist. I'm not sure I am able to offer all details, because there's just so much, but the jest of it is that he's becoming very defensive and protective of his head. If someone gets too close, he panics... he even pushed a kid down at school because he thought the child was going to "hurt his brain." I'm sure Grado doesn't mean harm to anyone, but I also know he's scared. And, let's face it, brain surgery is a lot for anyone to deal with, so I imagine it's worse for a 6 year old (ah! I can't believe he turned 6!).
In addition to his worries, teachers at school have some concerns, too. We had Parent-Teacher Conferences before we left for Florida, and we spoke with her before that even, and while he is doing great academically, he is "zoning out" like before, which means he may be having more seizure activity, which we thought was being close to under control. Of course there are several other concerns, too, but I'll spare you the details until I figure out what they all mean. Long story short, he's been struggling at school and I hate it.
Lucky for me, his teacher and the entire staff, is amazing. Even the students are wonderful with him. No one judges (a constant worry for me) and no one makes me feel like he's "bad." They're encouraging and patient, and everything he (and I) need.
Also lucky for me, I called before we left for Florida and his doc agreed to get us in right away... So, this morning, we're visiting for more testing and to start the process of determining what Grado needs next.
I watched this little guy last week, and I wish I could have videotaped him the entire week... he was so happy - happier than he had been in a long time. He is always funny and always laughing, but last week, I felt like he didn't have any worries, no stress. So, yesterday, when I felt bad to returning to work and my own classwork, I decided it was so worth it for that time with my family... he deserved it and needed it more than any of the rest of us.
Sometimes, I find myself apologizing for him, for his ornery (or sometimes rough) behavior, but lately, I've decided that every kid has a "moment," despite health issues, and that I shouldn't have to apologize or feel so badly. I think this is something all moms do, though. We've all been there... ours is the loudest, roughest, meanest, or saddest kid in the group. We get "the looks" from others, but I just figured out that those looks aren't typically (ha!) judgments; they're full of empathy. Every kid has "their moment," and that is okay!
So, while his journey, his struggles, are far from over, I know he will get through them. Although better, he still has a long road in front of him as he works through new issues. I really just hope these seizures are staying away and that he's just trying to cope with the stress and nerves of his surgery. I want it to be an "easy" fix. I want him to be happy all the time so he can share his laughs and smiles and jokes with everyone...
Today, as we jump back into reality, I will focus on the images I have in my mind of his smiles last week, and remind him how far he has come. This, too, he will overcome; I have no doubt...
Wednesday, November 13, 2013
What a difference a year makes...
Last year, we celebrated Graden's 5th birthday with Minion cupcakes and several smiling faces. We knew we wanted to have a big party for him because he was in the midst of trying to determine his "next step." And, while it was a fantastic day for him, we had no idea what the coming weeks would bring. As you know, through December 2012 and January 2013, we visited Riley's Children's Hospital a few times and were told at the end of January that Grado would have brain surgery in June.
Since that visit our lives have changed... I realize that sounds so cliché, but it is true. So very, very true.
I'll spare you the details from the months leading up to surgery; you can read about many of them on this blog. What I will say, though, is that when I look back, I can't believe that only five months have passed since his surgery... June 10, 2013 is a day I, Graden, and his family will never forget...
Now, as we celebrate his 6th birthday, I want to take time to acknowledge how thankful we are for his strength, his ornery personality, his love, his sense of humor, and his will to be his own person, even at his young age. Sure, there are days he drives his Momma crazy, but we can't imagine out lives without him.
I've stayed away from my blog for a few reasons: I am busy, I struggle to put my feelings into words these days, and I'm busy. :) Today, though, I blog from Florida... I blog to share my excitement for Graden's 6th birthday, to share my love for Grado, and to share my appreciation for the support, love, and encouragement we've received as a family through this entire journey. And, despite it not being over, I can honestly say this journey is easier because of the people we are surrounded by daily.
Tomorrow morning, my tough baby turns 6, and we will celebrate at Magic Kingdom in Walt Disney World... Tomorrow we celebrate more than a birthday, we celebrate 2013 and the obstacles our stinker has overcome. :)
Tuesday, September 17, 2013
I have to, so I will.
We got the new CPAP machine.
It looks, and sounds, scary. Here is a picture from his last sleep study so you can see what it looks like:
Last night, before bed, we set it up together. The machine itself is the exact same model as the one we used to have, which I think helped Graden's transition. The mask is different, though, and I was worried he may not like it even though he said he did during his last study.
As I was getting him attached, connected, and fitted, he struggled. I could tell he was tense, which isn't usually the case with G.
After I got him all hooked up, he snuggled into his blankets, and I turned it on, waiting for a response. He took slow breaths and looked so fragile. I don't know why I felt like crying... he's been wearing a mask for months.
Finally, I asked him how he was doing. He tried to smile and nodded. I gave him a "good job" and told him to close his eyes. Eventually, I tip-toed out of the room.
About 15 minutes later, I heard him... "Momma!" Before I could even get back to his room, he yelled again, "Mommmmaaa!" I panicked! (Although, have I told you how much I love him calling me "Momma"? It melts my heart that the "-ma" hasn't dropped off yet.
Luckily (if one can say finding their child sitting straight up in bed, with fear in their eyes, crying, reaching out for you is lucky), he was okay. When I asked him what was wrong, he answered that the machine was "breathing too hard for him" and "it was about to give him bad dreams." I almost smiled at his seriousness.
After calming him down, we went through the steps again, talking quietly about why it was so important to wear his mask... I sat in the room until he drifted off, with promises of leaving the door open as I left.
He did great through the night... the mask stayed on and he slept well.
Very proudly, he pounced into my bedroom this morning (bright and early) to tell me he really liked it, and he "even took it off by himself when he woke up."
Thank goodness.
I love him for so many reasons, but my favorite is his strength... his "I have to, so I will" attitude. He even told a friend of ours yesterday that "He got a new machine that will keep him alive." At first, I didn't know whether to smile or cry, but I held it together, smiled, and gave an "Aw." He pays attention to me when I talk, but I can't say for certain that I say his machine "keeps him alive." I know it does, but I think I use other words. So, when he summarizes my paragraphs and our talks and gets straight to the point, I'm awestruck by his candor. Sometimes I let myself be saddened by what he has to go through, despite knowing it could be worse, but it's never long before he reminds me that he can handle it... that he has to, so he will.
It looks, and sounds, scary. Here is a picture from his last sleep study so you can see what it looks like:
As I was getting him attached, connected, and fitted, he struggled. I could tell he was tense, which isn't usually the case with G.
After I got him all hooked up, he snuggled into his blankets, and I turned it on, waiting for a response. He took slow breaths and looked so fragile. I don't know why I felt like crying... he's been wearing a mask for months.
Finally, I asked him how he was doing. He tried to smile and nodded. I gave him a "good job" and told him to close his eyes. Eventually, I tip-toed out of the room.
About 15 minutes later, I heard him... "Momma!" Before I could even get back to his room, he yelled again, "Mommmmaaa!" I panicked! (Although, have I told you how much I love him calling me "Momma"? It melts my heart that the "-ma" hasn't dropped off yet.
Luckily (if one can say finding their child sitting straight up in bed, with fear in their eyes, crying, reaching out for you is lucky), he was okay. When I asked him what was wrong, he answered that the machine was "breathing too hard for him" and "it was about to give him bad dreams." I almost smiled at his seriousness.
After calming him down, we went through the steps again, talking quietly about why it was so important to wear his mask... I sat in the room until he drifted off, with promises of leaving the door open as I left.
He did great through the night... the mask stayed on and he slept well.
Very proudly, he pounced into my bedroom this morning (bright and early) to tell me he really liked it, and he "even took it off by himself when he woke up."
Thank goodness.
I love him for so many reasons, but my favorite is his strength... his "I have to, so I will" attitude. He even told a friend of ours yesterday that "He got a new machine that will keep him alive." At first, I didn't know whether to smile or cry, but I held it together, smiled, and gave an "Aw." He pays attention to me when I talk, but I can't say for certain that I say his machine "keeps him alive." I know it does, but I think I use other words. So, when he summarizes my paragraphs and our talks and gets straight to the point, I'm awestruck by his candor. Sometimes I let myself be saddened by what he has to go through, despite knowing it could be worse, but it's never long before he reminds me that he can handle it... that he has to, so he will.
Tuesday, July 2, 2013
"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.
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.
Monday, June 24, 2013
You can't expect the unexpected.
I've heard the saying "expect the unexpected," but how does that work, really? I mean before Graden's surgery, I may have been preparing for the worst, hoping for the best, wishing and praying for somewhere in the middle - something I could "handle," and I suppose that could qualify as trying to expect the unexpected. But, honestly, I was expecting the "what-ifs" and "unexpected." See, it's tricky.
I didn't want to be too hopeful, too optimistic - I didn't want to be mad or let down if we got bad news.
But, I didn't want to be too worried, too pessimistic either - I didn't want to make myself sick or scare Graden.
So, I was somewhere in between. I worried every single day, but I was also hopeful, trusting... and I most certainly tried to expect the unexpected.
What I didn't expect, though, was what was going on before, during, and now after Graden's surgery...
In addition to Graden's amazing recovery, we have been so blessed, lucky, and surprised by an outpouring of love in so many forms. I've said a thousand times how much I appreciate the words, calls, texts, "likes," mail, gifts for Graden, and other messages, and I do - so very, very much. But, I must tell you that we've received so much more than that. Can you believe we've been given over $10,000 in the past few months?
Yes, that said $10,000.
I won't go into publicly thanking each and every person (we don't even know everyone who has given - thanks to our anonymous friends!), because some gifts have been given privately, but here - publicly, I will say that Phil and I never expected this "unexpected" mass of caring. It's been the most overwhelming thing that has ever happened to us...
With these gifts, along with selling our house and living with my in-laws, we have been able to successfully pay ALL of Graden's previous medical bills, which included $2,000 to Riley. So, when we went to Riley on June 10th, we owed them $0. Zip. Zilch. Nada.
I can't even begin to write about what that feels like, because it is truly indescribable.
Every single penny that has been given in Graden's name has been used for Graden and him alone. We even have a little left, sitting in an account, waiting for the next doctor bill to roll in... Of course, we do have "standing accounts" at a few places in town, but the bulk of the debt is gone. It feels surreal even typing that statement. Gone. They are gone. :)
Amazing. Our friends and family are amazing. I'm good with words, and yet there are days when I cannot find the right ones... Today is one of those days. It's a rare - VERY RARE - occasion when I'm speechless. :)
Why do I want to blog about this today? Well, in addition to publicly thanking those who have supported us financially, I wanted to acknowledge another group of people: our church family.
On June 9th, our church, Zion Lutheran in Woodburn, held a special prayer for Graden. A few weeks prior, we had been approached about allowing a group to host a benefit dinner for Graden. Hesitantly, we considered, we talked, we thought, we prayed, and we finally decided to allow others to help as they saw fit. We had been reminded on so many occasions that Graden didn't just touch our lives -- he touches the lives of so many. Gradually, though, leading up to the 9th, we began receiving gifts. On the 9th, we received more. And, when we came home, we had the anonymous check for $2,000 in our stack of mail, and it was the icing on the cake.
So, as much as we appreciate the group so willing to plan a benefit to help us, this weekend, we had to ask them to place it on hold. We don't want to discourage their efforts, especially those who have asked how they could help who are not able to help financially. Please know, you've already helped so much. It may sound silly to some, but the gesture and thoughts mean just as much as the money! Honestly. Not to mention that there are others in our church who may also be needing assistance soon.
Every day is easier because of you. You have helped us eliminate a huge financial burden and begin again... because of your kindness, generosity, and compassion, we have been able to pay debts and get ourselves organized and ready to tackle the next set of obstacles that come our way.
It was not an easy decision because we may need help as soon as we get the bills from surgery in the mail. :) But, we are content and confident that we're in a much better place to address and pay those new bills. We couldn't allow a benefit to happen when we had so graciously been given these unexpected monetary gifts.
Graden still has a long road ahead of him; in fact, just today we began our first of many follow-up visits. We have several tests and appointments between now and August. We don't know which way his journey is going, but Phil and I are stronger than we've ever been - in more ways than one. We've grown as a family, also in so many ways, and I know that we are surrounded by the best support system anyone could possibly have. It's because of all of this that I don't expect the unexpected. I can't. There's no way I could have ever prepared for any of the things 2013 has brought. Instead, I'll just tackle things as they come, knowing that the one thing I can expect is the constant support, love, encouragement, and compassion from our friends and family.
Thank you!
I didn't want to be too hopeful, too optimistic - I didn't want to be mad or let down if we got bad news.
But, I didn't want to be too worried, too pessimistic either - I didn't want to make myself sick or scare Graden.
So, I was somewhere in between. I worried every single day, but I was also hopeful, trusting... and I most certainly tried to expect the unexpected.
What I didn't expect, though, was what was going on before, during, and now after Graden's surgery...
In addition to Graden's amazing recovery, we have been so blessed, lucky, and surprised by an outpouring of love in so many forms. I've said a thousand times how much I appreciate the words, calls, texts, "likes," mail, gifts for Graden, and other messages, and I do - so very, very much. But, I must tell you that we've received so much more than that. Can you believe we've been given over $10,000 in the past few months?
Yes, that said $10,000.
I won't go into publicly thanking each and every person (we don't even know everyone who has given - thanks to our anonymous friends!), because some gifts have been given privately, but here - publicly, I will say that Phil and I never expected this "unexpected" mass of caring. It's been the most overwhelming thing that has ever happened to us...
With these gifts, along with selling our house and living with my in-laws, we have been able to successfully pay ALL of Graden's previous medical bills, which included $2,000 to Riley. So, when we went to Riley on June 10th, we owed them $0. Zip. Zilch. Nada.
I can't even begin to write about what that feels like, because it is truly indescribable.
Every single penny that has been given in Graden's name has been used for Graden and him alone. We even have a little left, sitting in an account, waiting for the next doctor bill to roll in... Of course, we do have "standing accounts" at a few places in town, but the bulk of the debt is gone. It feels surreal even typing that statement. Gone. They are gone. :)
Amazing. Our friends and family are amazing. I'm good with words, and yet there are days when I cannot find the right ones... Today is one of those days. It's a rare - VERY RARE - occasion when I'm speechless. :)
Why do I want to blog about this today? Well, in addition to publicly thanking those who have supported us financially, I wanted to acknowledge another group of people: our church family.
On June 9th, our church, Zion Lutheran in Woodburn, held a special prayer for Graden. A few weeks prior, we had been approached about allowing a group to host a benefit dinner for Graden. Hesitantly, we considered, we talked, we thought, we prayed, and we finally decided to allow others to help as they saw fit. We had been reminded on so many occasions that Graden didn't just touch our lives -- he touches the lives of so many. Gradually, though, leading up to the 9th, we began receiving gifts. On the 9th, we received more. And, when we came home, we had the anonymous check for $2,000 in our stack of mail, and it was the icing on the cake.
So, as much as we appreciate the group so willing to plan a benefit to help us, this weekend, we had to ask them to place it on hold. We don't want to discourage their efforts, especially those who have asked how they could help who are not able to help financially. Please know, you've already helped so much. It may sound silly to some, but the gesture and thoughts mean just as much as the money! Honestly. Not to mention that there are others in our church who may also be needing assistance soon.
Every day is easier because of you. You have helped us eliminate a huge financial burden and begin again... because of your kindness, generosity, and compassion, we have been able to pay debts and get ourselves organized and ready to tackle the next set of obstacles that come our way.
It was not an easy decision because we may need help as soon as we get the bills from surgery in the mail. :) But, we are content and confident that we're in a much better place to address and pay those new bills. We couldn't allow a benefit to happen when we had so graciously been given these unexpected monetary gifts.
Graden still has a long road ahead of him; in fact, just today we began our first of many follow-up visits. We have several tests and appointments between now and August. We don't know which way his journey is going, but Phil and I are stronger than we've ever been - in more ways than one. We've grown as a family, also in so many ways, and I know that we are surrounded by the best support system anyone could possibly have. It's because of all of this that I don't expect the unexpected. I can't. There's no way I could have ever prepared for any of the things 2013 has brought. Instead, I'll just tackle things as they come, knowing that the one thing I can expect is the constant support, love, encouragement, and compassion from our friends and family.
Thank you!
Monday, June 17, 2013
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.
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.
Sunday, June 9, 2013
In (less than) twelve hours...
In twelve hours, Grado begins his surgery (7:30 am).
In the past twelve hours, we have been busy... After a wonderful surprise birthday party for our sweet niece, Mimi, we played, finished packing, and prepared for this morning. We enjoyed church with family and friends and listened to an amazing prayer by our Pastor. We felt - as we always do, an overwhelming joy as we left. Our congregation is amazing.
Friends and family followed us home for breakfast, and even more joined. Almost 60 people came to send love, well wishes, and prayers to our G. He loved every minute of it and knew - fully well, that so many people love him and are supporting him through this process. He was all smiles all day.
As his parents, Phil and I can't even begin to express thanks... Words just don't seem to cut it. In time, though, we will reach every one of you, specially. But, please, please know that you are all so loved.
We made it to Indy around 3 and to my sister's at 4. We had dinner and let the kiddos play. What a great way to keep distracted... Lovin' on our niece and nephew. :)
Now, we are tucked in... Exhausted! G got to play in the tub and is happily cuddled with Ironman and Monkey. He says he's ready to get to the doctor. If he is ready, we are...
I promise to post again tomorrow evening. Love to you all.
Thursday, June 6, 2013
Gratitude appears...
Every day this week, I wake up a little more worried, a little more scared, and a little more grateful.
Odd, though, considering my child is having surgery... on his brain! in 4 days. Of course, I'm not grateful for him having to have surgery, but I'm grateful there are doctors who can perform such procedures.
I'm grateful for the things we've been doing the past two weeks:
Play-dates with friends
Visits to the zoo or park or splashpad or pool
Baseball games
Visiting family
Receiving mail (not just emails!)
Making phone calls (not just texts!)
Staying up late
Enjoying the weather
Being silly -- dancing to loud music and screaming lyrics
Coloring, drawing, and working on our writing
Dinner with friends
Being surprised with sincere prayers, thoughts, and words of compassion
Being lazy
Watching movies...
All of these things and so many more. We've been busy, and we have loved it.
Last night, I was at a meeting with some friends for the mentoring program I'll be working with after Graden's surgery. At the end of the meeting, these new friends of mine (very new -- we've only met once before last night) gathered hands and said a prayer for me and Graden. The words sliced through me...
Prior to that prayer, my new friend, D, mentioned how people suffer. "Some people suffer well, and some people just suffer." He was quoting something he had recently heard, and I nodded in frantic agreement.
I have suffered. We all have. But, through this, I'm trying my best to "suffer well." Not just for me, but for Graden. He's been so strong and hasn't shown much emotion about his surgery until recently, when he saw someone start to cry about it. Before I could explain those tears, he began crying...
He finally said he was scared.
This is when I *must* "suffer well." There is no time for me to worry about how horrible I feel. Instead, I must smile, nod, comfort, and encourage Graden, knowing fully well that I cannot guarantee the outcome of his surgery.
I cannot tell you that it was easy, and I don't know if it worked. But, he calmed down and moved on -- for now.
So, again, last night, I left that meeting smiling. The tears were sitting in the corners of my eyes, but they were not sad tears. They were overwhelming-grateful tears... grateful for the people who enter your life at just the right time to say just the right words. Amazing how that works.
I've been noticing this gradually throughout Graden's journey, but more specifically this past six months... Graden and I have made new friends, found old friends, and connected with total strangers, each of them have touched our hearts in ways I cannot express here.
Gratitude appears anywhere. Everywhere. I didn't recognize it at first - didn't want to, but I know that it's what's helping me "suffer well."
Odd, though, considering my child is having surgery... on his brain! in 4 days. Of course, I'm not grateful for him having to have surgery, but I'm grateful there are doctors who can perform such procedures.
I'm grateful for the things we've been doing the past two weeks:
Play-dates with friends
Visits to the zoo or park or splashpad or pool
Baseball games
Visiting family
Receiving mail (not just emails!)
Making phone calls (not just texts!)
Staying up late
Enjoying the weather
Being silly -- dancing to loud music and screaming lyrics
Coloring, drawing, and working on our writing
Dinner with friends
Being surprised with sincere prayers, thoughts, and words of compassion
Being lazy
Watching movies...
All of these things and so many more. We've been busy, and we have loved it.
Last night, I was at a meeting with some friends for the mentoring program I'll be working with after Graden's surgery. At the end of the meeting, these new friends of mine (very new -- we've only met once before last night) gathered hands and said a prayer for me and Graden. The words sliced through me...
Prior to that prayer, my new friend, D, mentioned how people suffer. "Some people suffer well, and some people just suffer." He was quoting something he had recently heard, and I nodded in frantic agreement.
I have suffered. We all have. But, through this, I'm trying my best to "suffer well." Not just for me, but for Graden. He's been so strong and hasn't shown much emotion about his surgery until recently, when he saw someone start to cry about it. Before I could explain those tears, he began crying...
He finally said he was scared.
This is when I *must* "suffer well." There is no time for me to worry about how horrible I feel. Instead, I must smile, nod, comfort, and encourage Graden, knowing fully well that I cannot guarantee the outcome of his surgery.
I cannot tell you that it was easy, and I don't know if it worked. But, he calmed down and moved on -- for now.
So, again, last night, I left that meeting smiling. The tears were sitting in the corners of my eyes, but they were not sad tears. They were overwhelming-grateful tears... grateful for the people who enter your life at just the right time to say just the right words. Amazing how that works.
I've been noticing this gradually throughout Graden's journey, but more specifically this past six months... Graden and I have made new friends, found old friends, and connected with total strangers, each of them have touched our hearts in ways I cannot express here.
Gratitude appears anywhere. Everywhere. I didn't recognize it at first - didn't want to, but I know that it's what's helping me "suffer well."
Tuesday, June 4, 2013
How did I miss that?
I always thought I was good at recognizing the differences between wants and needs, but it turns out I wasn't. You see, I grew up learning about working hard to get what you want, being the "good guy," having manners, and helping others. I never needed to be first or win everything. We had fun with what we had. Sure, there were days we remembered we weren't rich, but we got over it pretty quickly.
It's no secret my family overcame struggles, but we surely did not do without. My dad made us feel "normal" and supplied those wants. But the needs? They were always there. I didn't realize that my dad actually worked two jobs to help pay the utilities; instead, there was a time we thought he worked two jobs to give us what we wanted. He never made working two jobs our fault... it was just what needed to be done.
So, even before I started my family, I knew I wanted to be the same with my kids -- teach them about hard work, manners, and respecting/loving others. And, now, as I teach my boys each day, I try to be like my dad. And, I think I'm pretty good at it. We talk about the "whys" to cleaning up, helping others, being nice, and having manners. So far, so good.
And, while I don't want to scare them or sound like the mean parent, they really need to know that there are starving kids out there -- and not just in other countries. There are kids who don't have birthday parties. And, there are kids struggling with illnesses that we cannot see every single day!
I could lie and tell you that I am noticing these things as I "get older," but that's not it.
I notice these things because of Graden. My ornery Grado has reminded me that life is challenging for many - in more ways than one.
When we go to doctors' appointments, I see other families who are struggling financially, emotionally, and physically even. I hear them pleading with nurses, secretaries, and doctors about bills, help with prescriptions, shelter or transportation. I read newspapers, social media updates, or magazines and learn about families who are homeless or unemployed. I have to explain to Landen why little Johnny can't go outside at recess with the rest of the kids because of the holes in his shoes, missing gloves, or no winter coat. I have to read the signs of the men and women standing on the corner to the boys in the backseat.
I've had to have the conversation about why we sold our house without making the boys feel like they did anything wrong...
I know. I really know. It could always be worse for me. For Graden. For us. I never, ever forget that and remember to count my blessings each and every day. But, I don't understand how I missed it before. There are so many people who need our help. And, I know... we can't help everyone, but if everyone helped someone... well, it would help a lot.
Doctor bills alone are stressful... anyone who has one (no matter the amount) knows this to be true. But, many people do not have a choice... In our case, for example, we have to keep paying these doctor bills -- these are the people helping Graden! There are days when it's much more difficult than I share... But, we made the choice to take on treatments.
These people, though, did not have a choice. Can you imagine a flood ruining your home? A tornado? A hurricane? Losing everything? Baby books, photo albums... memories? Gone! In Indiana, we typically get lucky... but one quick storm changed that for many last weekend. I counted 6 homes just in my addition who had ripped carpet out (from water damage). The people in the link above, though, they lost it all and were evacuated. Can you help? I don't have much right now, but I plan to take something...
How about my friend, Natalie? You can read her blog here. She is leaving today on a Mission trip to Zambia to help orphans (she is taking an entire suitcase full of socks!) for a few weeks. When she comes home, she is leaving again to Uganda, Africa for two years (at least) to teach English at a school there. You can donate to her trip here. Every single penny helps her. Truly.
There are so many things going on every day in our city. I've posted about reaching my goal for the new CSF Chapter, but have I told you I'm working with a new mentoring/tutoring program, too? It's called The Brandon Foundation (different than the one in Indianapolis). Caty H and Lucretia L (both ladies I went to high school with) have co-founded this program "where children are shown their potential while supporting them academically and socially." There's still time to help us with this project; we are in need of a few more mentors during the 2013-14 school year. Could you commit to helping a child every Monday and Tuesday from 4-6 pm? We can talk about this if you think it's something you would be interested in.
Every year, my sister-in-law creates a team to walk in memory of her Grandpa, who passed away from ALS. The walk will be in October this year (at IPFW). The money they raise goes towards finding a cure for such a horrible disease. In fact, there are several walks a year in Fort Wayne: March of Dimes, Relay for Life... Again, I know it's hard to help everyone, but you could pick one and do it every year. Or, alternate years. Or, give $1.00 to each. :) I love the ALS slogan -- "Walk Because You Can." Makes you think...
What about foster parents or families who adopt? Talk about helping others... I know several parents who have adopted for many different reasons, but that's one huge way of giving back. Melts my heart...There are just so many things we can do for others. The possibilities are endless, really.
What about you? Do you have a project? Do you volunteer? Donate on a regular basis? Tell me. Share your ideas with others. How can we continue to help each other? For starters, we have to tell each other and realize to gift is too small... pop tabs for Riley? Box Tops for schools? Soup kitchen? Mowing your neighbor's yard? Thank you cards to nurses, teachers? Remember, it's not always about financial needs.
So many people have reached out to us for Graden. It's overwhelming, humbling, sometimes embarrassing, until I remember that "what goes around, comes around." We are so grateful. I don't know if I'll ever be able to repay everyone, but I know I will try by helping others - even if all I can do is share their stories like I did today.
Pay it forward, folks. We don't want to miss it.
--
Here's another organization that I support:
http://www.kah-fortwayne.org/
Check it out! The director is a dear friend of ours.
--
Here's another organization that I support:
http://www.kah-fortwayne.org/
Check it out! The director is a dear friend of ours.
Wednesday, May 29, 2013
Keep moving forward; 12 days and counting...
Yesterday, we went to see Graden's Pulmonologist to get "surgery clearance" and received good news: Graden is moving air (breathing!) better than he ever has.
This is especially good news because of his upcoming surgery. He needs to be as healthy as possible going in... he will need all of his strength for recovery.
Doc continued to chat with Graden, who adores him. My dad got to go with us, which made me smile. I could see the pride in my dad's eyes as he watched G interact with Doc (with little help from me). I tried telling Dad how strong Grado was, but it's so much better when you can see it for yourself. Everywhere I take him, he makes friends (Dad and Graden - ha!).
During their chat, Doc told Graden how happy he was with his progress. Our Bi-Pap machine has really helped G sleep better at night - not to mention how it lets Mom sleep a bit better, too.
Doc said, at this point, we won't need to revisit our Pulmonologist until October (long after our recovery, we hope), and then he said, "...and yearly thereafter." Talk about music to my ears...
Of course, he did tell me our Neurosurgeon would be the doctor ordering follow-up tests (MRIs, Swallow Studies, etc.) after surgery, and he reminded us that this surgery wasn't a "cure all," which we never forget. Still, he seemed positive that Graden was reaching the point of "living successfully" with his Chiari, which we know changes over time, but it sure sounds great right now. So, the BiPap helps, along with inhalers and medications as needed... Chiari can still cause concerns, but it seems his lungs are strengthening each day. Amazing!
--
Today, I took a trip down memory lane...
As I did one last "walk through" at the old house, cleaned the floors, and backed out of the driveway for the last time, I realized how much has happened in that house. It was our first home as a family. We moved in Memorial Day weekend (ironic timing!) in 2006. A lot of memories in seven years... Sure, it drove me crazy with clutter some days as we worked to squeeze in, but most days, it was perfect, and it was ours.
I suppose it's appropriate to move out right now, as we take the next turn on Graden's journey. But, I can't fight this feeling (oh, wow... I just typed that to the tune of REO Speedwagon... yikes!) like I'm missing something, leaving something important behind, or doing something wrong.
I have to keep my head up, though, and remember why we made the move. It was not because of anyone or thing; it was for all of us, especially Graden. We need to be able to pay past doctor bills and save for future care. We don't know what we will need, but we have to be able to afford whatever it is... Deep down, I know we made the right choice. In fact, I can already see how much we have benefited from the move financially.
Have you seen "Meet the Robinsons?" It's a Disney movie, and one of my favorites of theirs, too. It's about a little orphan; his name is Lewis (he reminds me of Graden, despite the glasses), and he tries to be an inventor and build a time machine. He really, really wants to meet his mom and figure out why she left him on a doorstep. While that sounds heartbreaking, he actually goes on a journey and learns through a time machine mishap that life is not about the past. In fact, his "future self" teaches him his famous motto, "Keep moving forward."
Why am I telling you this? Because it's a cute movie and you should watch it, but also because I like this little guy. Often, I think of my own past, Graden's past... I wonder "should I have done this?" or "if I would have done this, would G be better or different?" But, then, I remember that those memories, the past, doesn't change anything now. It's too late. It's done. So, instead, I have to "keep moving forward."
I know I can't worry about moving out of our first home; those memories are done -- that chapter is closed. We're moving forward.
I sound like a broken record, but we truly are going one day at a time, and we will certainly "keep moving forward."
This is especially good news because of his upcoming surgery. He needs to be as healthy as possible going in... he will need all of his strength for recovery.
Doc continued to chat with Graden, who adores him. My dad got to go with us, which made me smile. I could see the pride in my dad's eyes as he watched G interact with Doc (with little help from me). I tried telling Dad how strong Grado was, but it's so much better when you can see it for yourself. Everywhere I take him, he makes friends (Dad and Graden - ha!).
During their chat, Doc told Graden how happy he was with his progress. Our Bi-Pap machine has really helped G sleep better at night - not to mention how it lets Mom sleep a bit better, too.
Doc said, at this point, we won't need to revisit our Pulmonologist until October (long after our recovery, we hope), and then he said, "...and yearly thereafter." Talk about music to my ears...
Of course, he did tell me our Neurosurgeon would be the doctor ordering follow-up tests (MRIs, Swallow Studies, etc.) after surgery, and he reminded us that this surgery wasn't a "cure all," which we never forget. Still, he seemed positive that Graden was reaching the point of "living successfully" with his Chiari, which we know changes over time, but it sure sounds great right now. So, the BiPap helps, along with inhalers and medications as needed... Chiari can still cause concerns, but it seems his lungs are strengthening each day. Amazing!
--
Today, I took a trip down memory lane...
As I did one last "walk through" at the old house, cleaned the floors, and backed out of the driveway for the last time, I realized how much has happened in that house. It was our first home as a family. We moved in Memorial Day weekend (ironic timing!) in 2006. A lot of memories in seven years... Sure, it drove me crazy with clutter some days as we worked to squeeze in, but most days, it was perfect, and it was ours.
I suppose it's appropriate to move out right now, as we take the next turn on Graden's journey. But, I can't fight this feeling (oh, wow... I just typed that to the tune of REO Speedwagon... yikes!) like I'm missing something, leaving something important behind, or doing something wrong.
I have to keep my head up, though, and remember why we made the move. It was not because of anyone or thing; it was for all of us, especially Graden. We need to be able to pay past doctor bills and save for future care. We don't know what we will need, but we have to be able to afford whatever it is... Deep down, I know we made the right choice. In fact, I can already see how much we have benefited from the move financially.
Have you seen "Meet the Robinsons?" It's a Disney movie, and one of my favorites of theirs, too. It's about a little orphan; his name is Lewis (he reminds me of Graden, despite the glasses), and he tries to be an inventor and build a time machine. He really, really wants to meet his mom and figure out why she left him on a doorstep. While that sounds heartbreaking, he actually goes on a journey and learns through a time machine mishap that life is not about the past. In fact, his "future self" teaches him his famous motto, "Keep moving forward."
Why am I telling you this? Because it's a cute movie and you should watch it, but also because I like this little guy. Often, I think of my own past, Graden's past... I wonder "should I have done this?" or "if I would have done this, would G be better or different?" But, then, I remember that those memories, the past, doesn't change anything now. It's too late. It's done. So, instead, I have to "keep moving forward."
I know I can't worry about moving out of our first home; those memories are done -- that chapter is closed. We're moving forward.
I sound like a broken record, but we truly are going one day at a time, and we will certainly "keep moving forward."
Monday, May 13, 2013
One more month...
I've started this blog post three times over the last three days. Each time, I try to think of something clever to mask the stress I feel about the date. May 10th hit me like a monsoon. It rushed in, without warning, winds blowing my mind in every direction, clouding my brain, causing me to feel an instant tension...
We do have good news, though: We sold our home! (Did I tell you that yet?) We should be closing the first week of June. (Keep your fingers crossed we can get this done before surgery!)
Also, we passed our goal for our CSF Solo Walk/Fundraising for a new CSF Chapter in Fort Wayne! Check out our Team Page. There's still time to donate (end of May) or join our team! The more the merrier. :)
One more month until Graden's surgery.
Luckily, I finished my semester last week. Maybe that's why I noticed May 10th's arrival? I'm done for the summer. I can focus 110% on Graden, and my only obligation for the next few months is my family. Truthfully, I can't think much past June 10th anyway... One day at a time. Literally.
We have appointments, follow-ups, check-ins, therapies sporadically scheduled over the next few weeks. I'm trying to get all my "ducks in a row" and be prepared for us to travel to Riley. Landen will be staying with family (a few nights at a few different homes - he's excited but disappointed he can't be with G).
Today was my first official day off, and I hardly sat down. I am keeping busy, cleaning, organizing, getting caught up on emails, files, and anything that seems tedious that I can't find the time to do during the semester. I'm leaving my lesson-planning/course rearranging for when we are home after surgery. For now, I'm going to take a break... read a little, write a little, and have fun with the boys (all my favorite things).
I really want the next four weeks (exactly!) to be amazing for Graden, you know... just in case. If you feel like a play date, please let me know. I'm sure we'll be going to the zoo, the park, the splash-pad, baseball games, and wherever else I can think of... After his surgery, he'll be on "limited activity" for three months, so now is his time to enjoy summer.
We met our new therapist last week; she was wonderful with Graden. We will get another appointment in before surgery, too. I'm looking forward to working with her. She seems positive she will be able to help Graden with his "attention and impulse." Graden took to her immediately and was well-behaved during the hour-long consultation. (Proud mommy.)
Besides noticing the date roll around, life has been busy (but normal!) since my last post. The end-of-the-semester always keeps me occupied, and Landen started baseball season! So, the last few weeks, we've been adjusting to the game schedule.
We do have good news, though: We sold our home! (Did I tell you that yet?) We should be closing the first week of June. (Keep your fingers crossed we can get this done before surgery!)
Also, we passed our goal for our CSF Solo Walk/Fundraising for a new CSF Chapter in Fort Wayne! Check out our Team Page. There's still time to donate (end of May) or join our team! The more the merrier. :)
Other than that... there's not much to report. Thankfully. I'll check back in before we leave.
---
Albert Einstein said, "Life is like riding a bicycle. To keep your balance, you must keep moving." He was a smart man, no? :)
Monday, April 22, 2013
My New Project: Building a CSF Chapter!
As you know, along with other health concerns, Graden has a Chiari Malformation; it is a rare brain defect that causes many more side effects than I will post here. Instead, you can visit my favorite links to research more, if you haven't already:
Because of my strong desire to learn, Graden and I have decided to work with the Chiari & Syringomyelia Foundation (CSF) to open a CSF Chapter here in Fort Wayne. Believe it or not, there is not a chapter here or in Indianapolis -- two of the largest cities in Indiana.
In addition to researching websites, as I have shared Graden's story, I have met others through social media that have experienced the same health issues he has; it has helped us so much, and I want to offer that knowledge to others.
In order to do start this project, I am working to raise $1,000!
Graden will be participating in a "Solo-Walk" on Friday, July 5th. He will walk around the block in our neighborhood. Feel free to sign up to join him! As part of his recovery, his goal is to have 25 walkers (Team Graden!) and $1,000 in donations. (As of the date of this post, we have $255!)
The money raised will allow the CSF to grant me the ability to create a Fort Wayne - CSF Chapter, allowing us to continue to share our story, implement support groups for patients and their families, continue fundraisers for research, and establish education in our area!
If everyone one of my friends on Facebook gave me $1.00, I would have $1,060. :) Please, please consider donating to this great cause. So little is known about Chiari, despite being such a serious health concern. Feel free to share this request, my blog, and our story, too. The more we reach - the better.
- http://www.mayoclinic.com/health/chiari-malformation/DS00839
- http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm
- http://www.chiariinstitute.com/chiari_malformation.html
- http://www.childrenshospital.org/az/Site699/mainpageS699P0.html
- http://www.csfinfo.org/
(You can like the CSF on Facebook, too!)
Because of my strong desire to learn, Graden and I have decided to work with the Chiari & Syringomyelia Foundation (CSF) to open a CSF Chapter here in Fort Wayne. Believe it or not, there is not a chapter here or in Indianapolis -- two of the largest cities in Indiana.
In addition to researching websites, as I have shared Graden's story, I have met others through social media that have experienced the same health issues he has; it has helped us so much, and I want to offer that knowledge to others.
In order to do start this project, I am working to raise $1,000!
Graden will be participating in a "Solo-Walk" on Friday, July 5th. He will walk around the block in our neighborhood. Feel free to sign up to join him! As part of his recovery, his goal is to have 25 walkers (Team Graden!) and $1,000 in donations. (As of the date of this post, we have $255!)
The money raised will allow the CSF to grant me the ability to create a Fort Wayne - CSF Chapter, allowing us to continue to share our story, implement support groups for patients and their families, continue fundraisers for research, and establish education in our area!
If everyone one of my friends on Facebook gave me $1.00, I would have $1,060. :) Please, please consider donating to this great cause. So little is known about Chiari, despite being such a serious health concern. Feel free to share this request, my blog, and our story, too. The more we reach - the better.
Friday, April 12, 2013
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. :)
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. :)
Thursday, April 11, 2013
Two Months of Worries.
I tried to post yesterday, but I couldn't find the words.
I started out quiet, moving through the necessary motions, smiling when needed, and faced my obligations with ease. In my office, three amazing ladies were able to see right through me and gradually got me talking.
An hour later, I was feeling much, much better.
Not better in an "allmyworriesaregone" way, but in an "Icandothis" way.
Graden's surgery is in less than two months (yesterday was officially two months exactly). I can do this. I can make it through the next two months...
Do I have a choice? No, and I wouldn't want it any other way.
I'm a mom before I am anything else. I can be a wife, a friend, a teacher, a writer -- so many things... but right now, Grado needs me first.
Yesterday, when I was talking with my coworkers, who have really become such good friends (thank you!), I mentioned one of the many struggles bothering me:
I can't show too much weakness, people will think I'm making it about me or that I truly can't hack the stress.
I can't be too strong, people will think I don't care as much as I should.
I can't be too optimistic... you know why.
I can't be too pessimistic. I just can't live every day like that.
Of course, you may ask why I care about what other people think, but I do. Always have. Always will. Don't we all a little bit, even if we say we don't?
And, let me tell you, until you go through something that makes you question your every move, be careful to judge lightly. :) It's hard. Harder than I ever anticipated.
I want people to know that Graden is being taken care of by the best Mom for him. Am I the best? I don't know, but I do know that we work. Graden and I are a good fit -- a lot alike, which isn't always good, but we make it work. :)
Is he always happy, silly, funny, and patient? Um, no.
Am I always happy or patient? Hell no.
He is not perfect. I am not perfect. And, we're both okay with that.
So, why do I feel like we need to be?
Sounds so petty when I type it. But, this is my place to be honest, to share, to get through this, and to admit that I know better than to worry so much...
But, damn it. It is hard.
I'm not sure what the next two months will bring, especially considering all the changes that have happened in the past two months. I do know, though, that I'm going to wrap up my classes, hang out with Graden, volunteer at Landen's school for end-of-the-year activities, and keep as busy as I can. I even have a new project up my sleeve (more info to come soon).
So, as I posted Monday, the countdown has started...
Less than two months to go.
Monday, April 8, 2013
Graden's Surgery: Begin Countdown
I got the call confirming Grado's surgery.
He is scheduled for posterior fossa decompression for his Chiari Malformation on Monday, June 10th.
Let the two-month countdown begin...
*Click on the underlined words above for more information about the surgery and malformation.
He is scheduled for posterior fossa decompression for his Chiari Malformation on Monday, June 10th.
Let the two-month countdown begin...
*Click on the underlined words above for more information about the surgery and malformation.
Sunday, April 7, 2013
Raising Money for Riley!
Riley Children's Hospital has become special to our lives. While we have only been a few times, we know our visits are about to become more frequent.
During April, Landen's school, Shambaugh Elementary (a FWCS), will be collecting quarters to donate to Riley. From April 15th to April 19th, the students are even hosting a "Riley Spirit Week."
I don't like to ask for money, but Riley helps so many people, including Graden. If you find you have a few extra quarters in your change jar, would you please consider sending them to Landen? He is really very determined to raise money for the "place that helps his brother."
On a similar note, have you heard of Kate's Kart? They are an amazing group of people who provide books for children in the hospital. Each and every single time Graden has been in the hospital, he has had a visit from them. If you're looking for a way to help children, please consider looking in to Kate's Kart; they are always looking for books to add to their collection.
A very sincere thank you! xox
Saturday, April 6, 2013
The Next Step
Yesterday, we went to Riley's Children's Hospital and saw Dr. Ackerman from Goodman Campbell Brain and Spine. This was the appointment we have been waiting for during the last three months; once it finally came time to pack up and make the drive, I instantly felt nauseous.
The drive went well; Graden was happy as ever in the backseat with movies and Sprite. We played a few rounds of I-Spy and "Guess the Animal." We laughed as Grado would quote the movie he was watching or start a quick anecdote with "remember when we..." Those of you who know G know that means he's about to tell you something hilarious. :)
Upon arrival, we had to wait a bit to be seen, but we never complain. So many times I'm sure people had to wait because of us. And, as I became my usual anxious, fidgety self, I watched Graden with an increasing motherly-love. Isn't it odd how we are reminded of our love during the least opportune times?
Finally, we were called back to speak with our doctor. We knew this visit was to determine our next step based on concerns that have developed over the past eight months (from when we met Dr. Ackerman for the first time in August 2012), but more specifically since January.
So, we went through the detailed results of the several tests Graden had during February and March, focusing specifically on the sleep study. We re-reviewed the MRI from our visit in January, and we began weighing our options. Gradually, I was becoming aware that she was leaning towards surgery as our next best option.
I think I went into Protector-Mode, with the help of some adrenaline, because I felt oddly numb to emotion and felt like I was researching options for what could have been anyone's son. Phil and I both asked questions, engaged in conversation, and agreed with our doctor, after a long appointment, that surgery was it. Brain surgery is our next step.
Will it fix him? Not necessarily.
Will the malformation go away? Not exactly.
Will it help? We hope so, but nothing is guaranteed.
So, why brain surgery? Well, because we at least have to try. Most concerning to the doctor are the issues involving breathing that are (most likely) caused by his Chiari Malformation. Additionally, Graden does have a diminished flow for cerebral fluid to and from his brain stem. At this point, because of their rapid development, we need to go through with the surgery as our best option to relieve some of the pressures and side effects in that area of his brain.
I realize this is a lot to read, to absorb, to understand, and to see... Graden does not "act" sick. In fact, he is "functional" - "normal" even... But, we see it. We know of his struggles. And, I promise you, they are there, and they are scary as hell. Watching your child have a seizure, stop breathing... even struggle to breathe is literally gut-wrenching. Heartbreaking. Frustrating. Sickening... I do not wish for any of you to see what we have seen with Graden.
What does the surgery entail? Well, this link: http://www.seattlechildrens.org/medical-conditions/chromosomal-genetic-conditions/chiari-malformation-treatment/ -- from Seattle Children's Hospital has the best description I could find of the surgery. Brace yourself. It isn't easy to read. (Here is another link that shows illustrations. It's more descriptive of adults, but the procedure itself is almost the same: http://www.mayfieldchiaricenter.com/chiari_surgery.php.
Obviously we have several concerns. But, we've looked in to this, we've reviewed our doctor and her abilities, we've researched, we've asked questions, we've debated, we've gotten more than one opinion... We know that it isn't a cure-all, a fix-it, or the end of his road, but we most certainly believe this is our best chance of helping him relieve some of these very serious health issues, primarily his breathing (central apnea) and flow of CSF (CerebroSpinal Fluid). Our hope is that this procedure drastically improves the issues caused by his Chiari.
Now, let me answer some of the most common questions we've been asked and respond to some of the most common responses:
1) This surgery has nothing to do with his other brain defect - the grey matter heterotopia, which causes the seizures and seizure activity. Dr. A did suggest, as did our Neurologist here in FW this past visit, that we may want to consult another Pediatric Neurologist at Riley that specializes in epileptic disorders and such issues as the seizure defect. We plan to do that soon.
2) We do not have a "percentage" of Graden's chances for success. It's based on each malformation, child, and other issues that may arise upon entering the brain. So, I suppose it's about 50/50. We do it and it works, or we do it and it doesn't work -- it can't hurt to try. Of course, there are risks involved with the surgery, but we, very carefully, weighed those risks to the risks Graden lives with daily without having tried the surgery, and again, we feel this is our best option.
So, surgery it is. We hope to have it scheduled in early June, as soon as Landen is out of school. We will be at Riley for the surgery, which lasts about 3 hours. Graden will be in recovery for about 5 days, as long as all goes well. During the 2nd week, Graden will be released, but he will still be recovering at home. After the first two weeks, and for the three months following surgery, activity for Graden will be limited.
As always, I will post details as I get them. I promise to continue to share our journey. So many people have reached out to me, us, Graden... It is beyond amazing. Your thoughts and prayers, more than ever, are so very appreciated. I try my best to think positive, but there are those days when worrying consumes me.
Today, though, I feel confident in our decision to pursue this procedure. I remind myself how far Graden has come and I find strength in witnessing his growth, his determination, and his care-free attitude towards doing what he needs to do to feel better. As usual, Grado teaches me how I should live life.
Thank you for reading this post today...
The drive went well; Graden was happy as ever in the backseat with movies and Sprite. We played a few rounds of I-Spy and "Guess the Animal." We laughed as Grado would quote the movie he was watching or start a quick anecdote with "remember when we..." Those of you who know G know that means he's about to tell you something hilarious. :)
Upon arrival, we had to wait a bit to be seen, but we never complain. So many times I'm sure people had to wait because of us. And, as I became my usual anxious, fidgety self, I watched Graden with an increasing motherly-love. Isn't it odd how we are reminded of our love during the least opportune times?
Finally, we were called back to speak with our doctor. We knew this visit was to determine our next step based on concerns that have developed over the past eight months (from when we met Dr. Ackerman for the first time in August 2012), but more specifically since January.
So, we went through the detailed results of the several tests Graden had during February and March, focusing specifically on the sleep study. We re-reviewed the MRI from our visit in January, and we began weighing our options. Gradually, I was becoming aware that she was leaning towards surgery as our next best option.
I think I went into Protector-Mode, with the help of some adrenaline, because I felt oddly numb to emotion and felt like I was researching options for what could have been anyone's son. Phil and I both asked questions, engaged in conversation, and agreed with our doctor, after a long appointment, that surgery was it. Brain surgery is our next step.
Will it fix him? Not necessarily.
Will the malformation go away? Not exactly.
Will it help? We hope so, but nothing is guaranteed.
So, why brain surgery? Well, because we at least have to try. Most concerning to the doctor are the issues involving breathing that are (most likely) caused by his Chiari Malformation. Additionally, Graden does have a diminished flow for cerebral fluid to and from his brain stem. At this point, because of their rapid development, we need to go through with the surgery as our best option to relieve some of the pressures and side effects in that area of his brain.
I realize this is a lot to read, to absorb, to understand, and to see... Graden does not "act" sick. In fact, he is "functional" - "normal" even... But, we see it. We know of his struggles. And, I promise you, they are there, and they are scary as hell. Watching your child have a seizure, stop breathing... even struggle to breathe is literally gut-wrenching. Heartbreaking. Frustrating. Sickening... I do not wish for any of you to see what we have seen with Graden.
What does the surgery entail? Well, this link: http://www.seattlechildrens.org/medical-conditions/chromosomal-genetic-conditions/chiari-malformation-treatment/ -- from Seattle Children's Hospital has the best description I could find of the surgery. Brace yourself. It isn't easy to read. (Here is another link that shows illustrations. It's more descriptive of adults, but the procedure itself is almost the same: http://www.mayfieldchiaricenter.com/chiari_surgery.php.
Obviously we have several concerns. But, we've looked in to this, we've reviewed our doctor and her abilities, we've researched, we've asked questions, we've debated, we've gotten more than one opinion... We know that it isn't a cure-all, a fix-it, or the end of his road, but we most certainly believe this is our best chance of helping him relieve some of these very serious health issues, primarily his breathing (central apnea) and flow of CSF (CerebroSpinal Fluid). Our hope is that this procedure drastically improves the issues caused by his Chiari.
Now, let me answer some of the most common questions we've been asked and respond to some of the most common responses:
1) This surgery has nothing to do with his other brain defect - the grey matter heterotopia, which causes the seizures and seizure activity. Dr. A did suggest, as did our Neurologist here in FW this past visit, that we may want to consult another Pediatric Neurologist at Riley that specializes in epileptic disorders and such issues as the seizure defect. We plan to do that soon.
2) We do not have a "percentage" of Graden's chances for success. It's based on each malformation, child, and other issues that may arise upon entering the brain. So, I suppose it's about 50/50. We do it and it works, or we do it and it doesn't work -- it can't hurt to try. Of course, there are risks involved with the surgery, but we, very carefully, weighed those risks to the risks Graden lives with daily without having tried the surgery, and again, we feel this is our best option.
So, surgery it is. We hope to have it scheduled in early June, as soon as Landen is out of school. We will be at Riley for the surgery, which lasts about 3 hours. Graden will be in recovery for about 5 days, as long as all goes well. During the 2nd week, Graden will be released, but he will still be recovering at home. After the first two weeks, and for the three months following surgery, activity for Graden will be limited.
As always, I will post details as I get them. I promise to continue to share our journey. So many people have reached out to me, us, Graden... It is beyond amazing. Your thoughts and prayers, more than ever, are so very appreciated. I try my best to think positive, but there are those days when worrying consumes me.
Today, though, I feel confident in our decision to pursue this procedure. I remind myself how far Graden has come and I find strength in witnessing his growth, his determination, and his care-free attitude towards doing what he needs to do to feel better. As usual, Grado teaches me how I should live life.
Thank you for reading this post today...
Subscribe to:
Posts (Atom)