Monday, January 19, 2015

Thankful for doctors and nurse practitioners today...

So, I went to the walk-in clinic this morning for this cough I've had, thinking I may have bronchitis or something. I figured I better get in and checked since I had the day off. The place was packed, so I had to wait. Boring, but I lived. The doctor/NP was great with me, but she said my chest sounded tight. One X-ray and another hour later, they call me back again to advise me to head to the ER. She said she saw some deflating in the sacs at the bottom of my lungs but wasn't sold on it being pneumonia. She wanted to be sure and apologized profusely for taking my time. I tried telling her it was okay and that I'd rather be sure than worse off later, but she seemed to still feel badly. 

I wasn't at the ER too long. The doctor there confirmed what the clinic had seen and explained everything to me. While I am sick, I'll be okay, and the doctor/NP did exactly what she should have. He told me once again how sorry he was... Like they did something wrong. I told him how much I appreciated him checking and explaining it all to me. He smiled, then told me how much he appreciated my words, because so often people get angry when they're sent in for a check or follow up, saying things like it's a waste of their time. 

That really bothered me... 

So, no, I didn't want to be at the doctor and hospital for several hours today, but I'd rather know what's going on and be able to be treated correctly than for her to misdiagnose or - worse - ignore it. So, to the lady who treated me today and followed through with something she knew wasn't right, thank you. I got the proper medication because you took your time with me and sent me to another doctor for immediate attention. 

Let's remember to be patient with one another, especially those people working to help us. 

Wednesday, December 24, 2014

Merry Christmas: We bought a house!

My last post talked about giving thanks, and we have some major thanks to give today...
As always, I wasn't sure how much to share, but it's time I tell you how grateful we are for some really amazing people.

Remember when we found out Graden had to have surgery? I'll never forget; it was January 2013. We made some major changes after that appointment.

You may know that we made the decision to sell our house and move in with Phil's parents. You may know that we lived with them for over a year, and you may know that we moved into our "new house" in February. What you may not know, however, is that we did not buy this house until yesterday.

At first, I was embarrassed. I didn't want anyone to know that we couldn't buy a house yet. I even blogged and talked with a few friends about it. When we found this house, though, we knew wanted to buy it; we just weren't sure we could make it work. We had worked for the last year to pay off medical bills while they continued to come in... I finished my Master's but wasn't working full time yet. So many things were still holding us back, and I was embarrassed. It took me a long time to accept that we didn't do anything wrong. In fact, we have worked so hard to get exactly where we are today. (We've had some great help along the way, too!) Are there still some hurdles to overcome? Sure. But, that's nothing to be embarrassed about. Someone along the way said, "It's not like you were out wasting your money." True. I could probably fund an entire wing of Lutheran or Riley Hospital, though, and I'm okay with that. Really. I can't complain about doctor bills; those same bills keep my boys, especially Grado, healthy and here.

Still, money was tight, and it wasn't a big secret. Insurance helped, but those of you with medical expenses can understand that they never cover everything, and somehow, all the "major" expenses are the ones covered the least, leaving you to pay the difference. Regardless, we managed and didn't do "without," but we didn't have a house, either.

In February, I blogged about finding this house. It was a quick, easy process. We signed "papers," got the keys, and moved right in within weeks of when we first looked in the windows.

But, we still knew we couldn't afford to buy the house just yet. I knew I would be looking for a new, full-time job, and we needed to finish paying on those last few (large) medical bills... so, you know what the sellers agreed to?

They let us pay rent and wait to buy! These sellers, the people who had this house on the market and who had been through ups and downs with trying to sell this house, let us wait. They knew most of our situation and, despite theirs, they helped us without hesitation or question.

I'm here to tell you:  If it weren't for them, we would not have this house. They gave us the best gift ever this Christmas. Thank you, Pickens family. Thank you. We will be forever grateful for your understanding and support.

And, I could write a book about my in-laws. Sure wouldn't have this house without their help, either. This past year, they've been our "go to" support in so many ways, and we will spend our lives making it up to them. We are forever grateful. Forever.

Another special thanks to our friend, George Raptis; if you're looking for a realtor, call him. I'll spare you the details of how great he is, because you only have to meet him once to decide for yourself. And... we have never met people who worked as hard as Greg and Jathni at Ruoff Mortgage. There's something to be said about working with people locally; they fought for us and did a lot of leg work to get us the best deal. The best part? They took time to understand our past and never made us feel like we were anything less than millionaires. Truly.

So, as of yesterday, December 23, 2014, we are happy homeowners - officially - once again.

Needless to say, this Christmas will be a special one for the Hirsch family.

Saturday, November 29, 2014

Thoughts on Giving Thanks...

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

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.

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!

  

Friday, June 6, 2014

The last day.

If you would have asked me last June if I would have thought that we would make it through the 2013-14 school year, I would have told you - without hesitation - "no way." 

But, we did. Successfully, I might add.

And, in four days, we will celebrate the year anniversary of Graden's surgery. I'll save those emotions and reflections for another post.

Today, though, on the last day of school, I look back in awe of how far Graden has come academically. He's always been social - a little rough and tough, but social, nonetheless. I reread my posts every now and then, but I vividly remember writing about how he struggled in school. He was zoning out, unable to control his seizure activity and side effects from medication. He was doing okay with his school work, but he was just short of falling behind grade level. And, I was so worried about trusting his care to someone else...

Now, he reads, writes, counts, works through math problems, uses the computer, communicates, and follows directions at or above grade level... he is ready for first grade, and I cannot explain the relief I feel while typing those words. His level of maturity (again, still a little rough and tough) has grown, and he is becoming so responsible, especially in regards to his health restrictions and his learning. This kid has been through so much, and his journey, despite being on calm waters right now, is not over. The best (and worst?) part of this year is that he has learned why his brain is special. And, he truly believes that it's his brain that makes him the way he is. Little does he know that it's actually his heart. 

Then, there's my Landen. My big-hearted, witty, independent, young man who continues to grow up and become wise beyond his years. Sure, he's still only 8 years old and has a lot to learn, but he has such a determination to accomplish so many goals. I love and admire that about him. 

This, too, has been a learning year for him. He's been so helpful and protective of his little brother, he's had serious discussions with Phil and me about budgets (stemming back from why we sold our old house), and he's worked hard to remain on the honor roll while being a dedicated athlete. Plus, he knows it makes me happy that he loves to read, write, and draw... his notes to me are some of the best gifts I receive.


Just last month, he watched me graduate and wrote me this: "to my osum mom. happy grajooading day." (I love that he spells phonetically!) He drew a picture of me in my cap and tassel and folded it up into a secret note. I realized right then that all my complaining about school and struggles with managing my time as a mom, student, and teacher was completely worth it for my boys to see that the hard work paid off. (Now, if I can just remind them to go to college right after high school...) 

My boys are my life. There's absolutely no doubt in my mind. I watch them turning into their dad (with a little bit of their mom's attitude), and I couldn't be more grateful. Seeing them love, laugh, work and play hard... it reminds me why I fell in love with my Pheel. 

So, today, they left me, happy as two, ornery little boys should be, to have fun on their last day as a kindergartner and second grader so they could come home as a first grader and third grader. And, at first I thought something was wrong with me, because I am not sad about this - about them growing up. But, then I realized that this was such an important year in their lives that I could not be sad. I have to be grateful. Happy. Proud. A little excited, even, because I cannot wait to see what they accomplish next year.

First, though, we will enjoy the summer!

The boys on their first day of school (2013).

The boys on their last day of school (2014).

Wednesday, June 4, 2014

A New Chapter: CSF

In 10 days, I will be hosting my first, public CSF Walk

On June 14th, on the campus of IPFW, we will walk one mile in support, honor, or memory of members of the Fort Wayne community who are struggling, or who have struggled, with Chiari, Syringomyelia, or any of the related cerebral, spinal disorders.

Last year, we held a Solo Walk in honor of Graden on July 5th. Since then, it has become a goal of mine to open a Fort Wayne CSF Chapter. After the unite@night walks in June, I will move forward with the chapter process.

I have met so many people with these same health issues. I've been reunited with old friends. I've made new friends. I've met kids younger than my Grado who have had this surgery, and I've met people much older yet to go through the surgery. 


It's all been an amazing experience. Sharing stories and resources and hearing words of thanks from families who thought they were alone has made it all worth it.


They are not alone. We are a community, and this is our new chapter.


Tuesday, June 3, 2014

Talk to your kids. A lot.

It's been a long time since I've blogged about anything other than my boys. I suppose this will post will eventually get to them, too, but I have been thinking about this article all morning and need to write about it.

I'm not sure where I want to start, and I don't have all the facts or answers, but let's take a minute to consider what happened.

Two little girls... 12 years old - not yet teenagers - stabbed their friend (almost) to death.

They plotted and planned. They're being charged - as adults.

Their lives forever changed because of a being the world doesn't even know to be real.

We've heard this before... "God made me do it." "The devil told me to..." And, now, this.

If you read the comments (which are ridiculous after any news article, really), you would see things like: "This is what you get when you take religion out of schools" or one of my favorites: "where were the parents?"

Really?

Okay, I am a parent that sure as hell wants to know where my kids are at every single waking moment of the day, but get real. It doesn't happen. Granted, mine are younger, so I watch them a bit more carefully, but they still say things and do things when I'm not around.

Just a few weeks ago, I found out my sweet son was chanting "Sexy Lexi" on the bus with some older boys to a little girl. I was devastated and didn't even know he knew what "sexy" meant yet! I wonder if someone asked, "Where are his parents?"

I am right here!

Still, I send them out the door to school or sports or wherever, hoping that I've poured a solid foundation for their decisions. That doesn't mean they are, or will ever be, perfect.

I'm not saying that the parents shouldn't carry some blame... maybe they should. I don't know. I don't know them or their daughters. I don't know if they should have even been allowed in the woods or on the internet learning about this thing.

I am saying, though, that it is absolutely unrealistic to expect parents to have the power to prevent their children from making bad choices. We've all made one as a child (and I mean under the age of 18 if we want to get technical), and we know damn well that (most of the time) our parents had little to do with it. I, for one, know my dad is not to blame for some of the idiotic things I did that he knew nothing about... And, we had a good relationship. We talked about everything - even if he didn't want to hear it. Granted, I never stabbed anyone and I made bad choices much older than when I was twelve, but I just don't think it's fair for the question to always be "Where were the parents?"

I know it's not as simple as I'm making it out to be... I know there are some people in this world who shouldn't be parents or who are parents that didn't want to be... I have opinions about them, too. We all do. But, it is entirely possible that the parents are just as upset about their daughters' actions as the parents whose daughter was stabbed. I realize I'm comparing apples to oranges for some of you, but just consider for a moment that your child is the one who did the stabbing. What the hell do you do now?

There is no right answer. And, I can guarantee you feel guilty with or without the help of the media or someone asking where you were.

In turn, what do you do if your child is the one who was stabbed? Easy. You want the other children punished. Now those parents are going to get hurt twice - for not stopping their child from doing something horrific and by watching their child be punished. But, it's not a competition. No one wins and everyone loses. And, in many cases what they lose are their kids...

So, how about Jesus? I'm not 100% sure, but I would guess and say bad things have been happening in schools and with kids for many years -- with or without religion and whether or not we hear about them in the news. Kids rebel. Try new things. Experiment. Again, with or without prayer, faith, or any type of religion. And, most certainly, with or without their parents' permission and knowledge.

Does knowing where the parents are and having religion in school help? Sure, but it doesn't keep everyone safe and make the world perfect.

So, what do we do? Parents, educators, any one involved with a child?

We talk.

A lot.

We have to let our kids know that these things they're reading about, experimenting with, and participating in are dangerous. Not just a "you'll poke your eye out" kind of dangerous, but a life-and-death dangerous. Even then, I don't know that it will be enough...

I had never heard of this creature, story, or game, but you can be sure I'm aware of it now. And, as horrible as it sounds, I will use this poor girl's experience to educate my own kids. Just like I will with many other stories of kids dying trying to race a train or suffocate themselves... all horrible, scary, dangerous things that I don't want my kids (or any kids!) to do, but I won't just let them figure it out on their own.

I will talk to them. A lot.

Monday, June 2, 2014

Never and Forever

For the first time since his surgery, Graden finally asked a question I did not want to answer.

"When is my scar going to be gone?"

I turned to look at Phil, who looked back at me with the same surprise I felt.

"It's not going to be gone, honey. It will be there forever. It's what makes your brain special, remember?"

"Oh yea." He waited a minute, nodded, and whispered "Okay."

He didn't seem to distraught by our answer, but I knew he was thinking about what forever actually meant. He was disappointed, and it hurt my heart.

We had been talking about sports with Landen. It's his busy season as we move from baseball to football, and Graden decided that he really wanted to play football, too. So, he asked, "When does little kid football start?" We didn't consider where he was going with his question, because we thought he understood that he wouldn't be playing.

We told him football would be starting after baseball just like soccer and other fall sports. So, he asked if he could get signed up, and I answered him, a bit too quickly, "no, no football because of your head." Thus, his question about the scar.

I hated to tell him "no way" and "never," but it's true. He will never play football.

There are a few things he may never do, and that's okay...

It sounds so silly to be upset that your child will never be able to play a sport, and, my love for football aside, it is upsetting to tell your child there are just some things they cannot do. Well, could he? Sure. But, he shouldn't.

We've talked several times about how his brain makes him special, and I've even blogged before about how Graden's health issues still allow him to be active and communicate... two things I am thankful for every single day. Literally. Everyday, I wake up and know I am lucky to have a son with so many health concerns that can physically move and use his words to tell me what's wrong. I never take those abilities for granted. Never.

Still, though, I always thought I would be the parent who would say, "Oh, sure! You can be anything you want. Do anything you want! Go wherever you want. Travel. Learn. Explore. Play. Make memories and gain experiences."

And, I do say all that, but it's been revised. Edited. Rewritten.

I have to protect my boys while encouraging them to learn, experience, stumble and get back up. But, I cannot allow them to do things that could make the difference between life and death.

The worst part of that is that I know, fully well, that anytime they leave my house, yes even at 6 and 8 years old, it could be their last time. Any day anything can happen. In fact, I've seen that a lot this past week in the lives of people around me...

Now, I don't think these awful thoughts every single time they leave or go play outside... that's no way to live. But, it has crossed my mind on more than on occasion, and I have to be realistic, which in my case is a mixture of optimism and pessimism. (Hope for the best; plan for the worst? Or something like that.) While we have so many great days, we've also lived through many terrible days, and I cannot put him (them) in situations that are harmful. Yes, I know I won't always be able to prevent those situations, but right now, I have some control, and, as their Momma, I need that control. So, never football. Forever.

But... It's just football, though. Right?

Yes, I know. And, again, I know it sounds silly. Here I am feeling bad about not allowing him to go play football when there are so many larger issues in his life. And, Graden, well, he will get over it. He's already moved on... and he does love basketball, so we will stick with that for awhile (although it can be pretty rough, too; you're watching the playoffs, right?).

My point today? I'm not entirely sure, but I know that it's hard to tell your kids they can't do something, I needed to get it off my chest, and I also know that never and forever are very strong, serious words... even for a grown-up.

Thursday, April 17, 2014

Changes

It's amazing what a difference 10 days makes.

Last week, I was so worried about how Graden would do at school after being off for break and struggling through the changes caused by the lowering of his medication, but that little stinker made me so happy! He came home with a "red" every single day last week! Even the teacher wrote him a note. For those of you who don't know, red is the top of the behavior chart, which means he wasn't just good (green), he was great! While he usually floats around the good colors, he hadn't earned a full week of red yet. Needless to say, we celebrated.

And, now, we only have 3 days left...

Easter will be his last dose. How fitting.

I stumbled across the date of his first full MRI this morning... 3 years ago, almost to the day.

What a ride it's been. So many changes.

I can't say that change is bad, because in our case it means growth. It means we are taking the next step -- or sometimes just another step. It makes me wonder why people are often afraid of change. I've heard it's because of the unknown, but don't they know that bad things can happen if you remain stagnate? Stagnate. I heard a great discussion about that word yesterday in a class studying communities. I'll refrain from getting sidetracked, but the talk made me consider how truly afraid I am of the unknown, but I how I am forced to embrace change.

Weaning Grado off his medicine is the perfect example. I do not know what will happen when it's completely out of his system, and I'd be lying if I said I wasn't worried, but I do know that this change is good right now. And, isn't "right now" all I can focus on?