Thankful for Thanksgiving...

Getting cuddled up to watch the Macy's Thanksgiving Day Parade is a Hirsch Tradition.
I'm so thankful for them!

 

During the month of November, I enjoy reading the Facebook posts stating what people are thankful for; despite the grief they may get for "not being thankful everyday," I think it's a great way to share with everyone the things you most appreciate. And, I have no doubt that most people are thankful several days throughout the year... not just during November. So, in the spirit of Thanksgiving (and my failure to jump on the Facebook-thankful-bandwagon), I decided I would share...

In honor of the 30 days in November, here are 30 things I am thankful for:

1. Phil. I know it's cliché, but he is most certainly my best friend. There is no doubt in my mind that he makes me a better person. I've said it before, and I'll say it again: he is the calm to my chaos. I truly do not know where I would be without him.

2. Landen. My oldest son, who definitely suffers from being the first-born just like his momma, is kindhearted in the most literal sense, giving, loving, athletic, creative, and smart. He makes our family stop and take time to remember "moments." I look forward to watching him grow into a young man.

3. Graden. My youngest son; he's tougher than any of the rest of us in a way I've yet to figure out how to define. Grado is his own person with no fear of what others think and enjoys making others smile and laugh, which is easy for him because he's so darn funny! As we wrap up 2013, though, we remember how far he's come and far he has yet to go, and we smile in awe and pride knowing he is exactly where he needs to be...

4. My Dad, Brother, and Sister. The four of us continue to grow closer and closer over the years despite being so very close already. They are my rocks and my biggest supporters. I can't stress how happy it makes me that my brother and Phil are so close, and my dad and sister love him just as much as they love me! They each make me so proud, and I'm proud to say that nothing can separate us. Goodness knows I could dedicate an entire blog post to just them, so I will stop with this: we're the four best friends anyone could ever have. (Ha!)

5. My Mom- and Dad-in-law and my Step-Mom. Who gets so lucky with their in-laws and step-mom? You hear stories about having to deal with either, but not me. I couldn't have hand-picked a better set of parents or wife for my dad. Each of the three of them love me like I'm theirs, and I can't imagine not having their love and support. The laughs and memories we share are priceless to me.

6. My brothers-in-law, and my sisters-in-law. I've got 2 brothers-in-law, Derek and Al, and I adore them both. They're amazing uncles to my kids, and Phil and I love being with them both -- it's always a good time! As for my 3 sisters-in-law, I have to say that I'm luckiest girl ever! Mindy, Kristal, and Kelly are some of my very closest friends, and, again, I couldn't imagine my life without them. They're never afraid to tell me what they think and put me in my place, and I love that about them. We don't go very long without talking to each other, and for that, I'm most grateful.

7. My step-sisters. I have 2: Ciera and Marisa, and while they're younger, they still show me and my family love in ways that step-siblings don't have to, especially because they entered my life when I was already "grown-up." But, despite our differences, they're there when I need them and love me and my family as if we've always been together. I look forward to our families growing and sharing more memories down the road.

8. My Mema. My sweet grandma has stepped in and played a role in my life that no one could ever replace. As I grow older, my love grows, and I continue to be more like her everyday.

9. Music. I need it. I crave it. It helps me get through so many days...

10. My heart and my inability to say no... although it makes for a chaotic schedule and some grumpy days, I absolutely love being "busy," especially for others. I can't help it and it's too late to change now. :)

11. Riley Hospital for Children. They are amazing. I'm so thankful for their selflessness and knowledge. The love they show for their patients and patients' families is astounding. Graden has been so blessed with amazing doctors, nurses, and medical staff members everywhere we go, but we have a special place in our hearts for Riley's.

12. Insurance. Whether I agree with what's covered and not, how much my deductibles are, and having to wait on hold to talk to someone, I'm very thankful that we have insurance to deal with and help us some.

13. The thoughtfulness of others. During 2013, we've been acknowledged with cards, calls, messages, and monetary gifts in ways I still cannot believe. Friends, friends-of-friends, family, family-of-family... so many people reached out to us. No gift or thought was too small; we appreciated every single one of them -- of you!

14. Books. All kinds of books. Print or digital - I don't mind. I just love books.

15. Pictures. I love pictures as much as I love books. Everyone who knows me knows I'm crazy about taking pictures. I love having the ability to capture a "moment." I'm so thankful for the thousands and thousands of pictures I have!

16. My nieces and nephews. I ABSOLUTELY love being Aunt 'Lissa (or as my ornery Camden says: Aunt 'Sissa). They make me feel special in a unique way. Being an Aunt is different than being a Mom, and I love it just as much. In 2014, I will gain TWO new babies, and I. CANNOT. WAIT.

17. Our jobs. Phil and I can both say with ease that we are doing things (and working for people) we love. We enjoy getting up every morning and working and are appreciative we have jobs to go to each day.

18. My Mentors. There are a few people in my life daily that may not even realize their impact on me. Some day, I will tell each of them.

19. My bed, couch, and DVR. Materialistic? Probably. It doesn't take much to make me happy, but I love our "movie" nights and being able to be lazy with my three boys.

20. My laptop. As much as I like my iPad, I love my laptop. It's my lifeline. I could probably live without my cell phone, but I do everything on my computer; not to mention, it's where I write. :)

21. Public schools and Teachers. I will argue with anyone -- they are the best; I don't care what you read in the newspaper. (Actually, that's any teacher anywhere -- I'm thankful for every single one of them!)

22. Target. A trip to Target makes anything better.

23. My best friends. I mean the ones, both old and new, that have stuck by my side through all my ups and downs. You know who you are. :) I can't believe we've had more years together than not! My favorite childhood memories include you!

24. Memories. Good and bad. I'm thankful for all of them; they make me who I am today.

25. Laughter.

26. Bracelets and boots.

27. Vacations. (Need I say more?)

28. Chips and Salsa. It's like Target: it makes anything better.

29. Crayons, Markers, and Sharpies.

30. Last, but not least: LOVE. The love of my hubby, my boys, my family, my friends, others, and the love I see between people. It makes me happy and thankful for the love I encounter every single day of the year.

Of course, I could have kept going, but this will do for my "thirty days of thankfulness."

I leave you with this: no matter the day, month, or year, take a minute to think of all the things you're thankful for. While some may seem silly or small, they're not. I try not to take anything for granted, and what better day to celebrate what you're grateful for than Thanksgiving.

From my home to yours: Happy Thanksgiving!

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!). 

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...

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. :) 

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.

Try and try again...

The results came in: Graden is making the switch from a BiPAP to a CPAP.

Apparently, this usually happens the other way around, but Graden needs a continuous pressure without any varying adjustments. (The BiPAP is a bi-level system and offers a different pressure if Graden fails to take a breath within a certain period of time -- it reminds me of blowing in a baby's face and watching them take a breath; the same method applies in the BiPAP.)

They say many people move from the CPAP to the BiPAP because the BiPAP is easier to tolerate... They say, they say, they say! Who really knows? If there's one thing I learned, it's that it is different for everyone, and even then, it can still change.

So, instead of offering the second pressure when he doesn't take enough breaths, we're switching to have a continuous flow of air, which is supposed to help him breath regularly... Try and try again...

We get to pick it up tonight after school, and I must say that I'm anxious. Not that I'm not excited, because I am. Goodness knows I had forgotten what it was like to sleep with a baby monitor and don't miss the days of waking up during the night. But, that doesn't take away the worry that this machine still may not be what he needs... Yes, I know: If it isn't, we keep trying.

I just realized I haven't heard back from our Neurologist at Riley, so I'll be checking in this week. Time flies when you're having fun, and all that... :)

On a good note... Graden is doing great in school (well, with a few minor exceptions - ha!). Landen keeps telling me he's proud of his brother, which just melts my heart. I wonder if Landen realizes that Graden is trying to be exactly like his big brother? :) Both boys can be stinkers, but I'll tell you, I hope they continue to support each other.

Momma went MIA and couldn't take it...

My last post was on July 9th - almost two months ago, and, although I feel badly for leaving some of my readers "hanging," I must admit it felt good to drift away for a bit.

I went M.I.A. -- missing in action. Didn't know a mom could do that, did you? Well, this Momma didn't have much of a choice.

While blogging is still my favorite coping mechanism, I needed that break. After our last trip to Riley Hospital for Children in early July, I made a very conscious decision to enjoy the remaining weeks of summer, knowing fully well that as soon as the calendar flipped to August, my life would once again become chaotic.

So, I did. I enjoyed this past summers more than many of the previous. I played hard. We swam. We ran. We played baseball, built forts, watched movies - at home and in the theater! We stayed up late, laughed, and spent so much more time together than we had been able to during the school year. Even Phil was able to enjoy summer a bit more during July and into August.

It's not that I didn't want to update you about Graden, I did. I just couldn't bring myself to jinx his speedy, smooth, and strong recovery... Plus, we needed that time together. Time to just "live."

August came and went. Again, we gradually got busy as we prepared for school to start. Graden started Kindergarten without a hiccup. I struggled (and still do) leaving him. I know he's in great hands, but that doesn't always take away the feeling that I should be there with him (for him) in case something happens. Everyday, I remind myself that I'm close and that he is tough - in so many ways.

As I mentioned in my last post, we continued to "recover" and learn about Graden's restrictions. We had our follow-up appointments a few weeks ago; that is why I came back to blog...

I need this blog as much as I need the air that I breathe.

I can't explain that and I'm sure it sounds ridiculous, but I can't say I care. I just know that writing, explaining - however disorganized and chaotic my thoughts, and sharing helps me through these challenges. Being able to "get it out" allows me to be a better mom somehow. I'm telling you -- it does.

You  may have heard or read on Facebook that Graden's swallow study went great! The therapist spent all of fifteen minutes checking him and was so pleased to tell us he was "swallowing normally" that I cried when she smiled at me. It was the first time we went for a test and received an "all clear." I will never forget that feeling and hope that I will be able to experience it again someday.

Because of the success of that test, and because his recovery was so much easier than we had anticipated, we went to his sleep study with fewer worries than we had in the past. I honestly allowed myself to believe that this could be it - that he could have improved to the point of living differently. Living with fewer restrictions, fewer complications...

I can tell you that I had never allowed myself to feel so positively about a test. I try to be very borderline:  not too pessimistic but not too optimistic, either. I have faith, but I'm not naive. I'm tough on the outside and weak on the inside. It's a fine line to walk. I can't let Graden see me struggling, so I remain in the middle. We always talk about it with him so he's prepared, but we don't want to scare him... But, this time... This time, I walked in after two weeks of waiting patiently, confidently for the results, thinking that I knew we would be okay.

I didn't expect it to be gone or disappear magically. I didn't expect a miracle. I just wanted an improvement, and I didn't think that was too much to ask for...

Friday, though, Grado and I met with his Neurologist here (in FW), and as soon as she entered the room, sighed, and pushed her chair closer to me, I felt my positivity slap me in the face. For starters, she always comes straight into the room and acknowledges Graden. Friday, she did not. I've never heard her (or any doctor) sigh upon entering an appointment. Friday, she looked defeated and didn't work to hide it. And, she always stands or sits by Graden while she talks to me. Friday, she came close and looked straight into my eyes...

Immediately, I wished that Phil had come with us. He stayed at work, though, because he was feeling positive, too. We thought it would be a routine follow-up...

Instead, she began by telling me there are still concerns, which I assumed by her demeanor. She continued by saying she was concerned. I remember feeling like she took too much time to continue with her next statement, and I didn't know what to say, so I watched Graden play.

Finally, she began again, going through the results of the study.

It seems that Graden's Central Apnea has, in fact, improved; however, he is still having several "episodes" a night -- to the point that she described them as "dangerous."

No parent ever wants to hear that their child is having "dangerous" "episodes" during the night.

Additionally, he is hypoventilating and his carbon dioxide levels are off...

There was more, but it all blended together and will be addressed in the next few days and weeks.

I'm sure I've said this before, but I'll say it again: you can judge your level of worry by how quickly you are scheduled for your follow-ups and tests. Before Graden and I left her office Friday, we were told that we needed to be in tonight (Wednesday) to conduct yet another sleep study. Thus, my level of worry is high. Extremely high.

No parent ever wants their doctor to press the issue with urgency.

So, now, we go back and will - hopefully - find levels and pressures of oxygen that we can alter in his BiPAP machine to assist him during the night.

As if I wasn't already worried about him not waking up in the morning...


I've got a call into his seizure specialist at Riley -- our Neurologist (here) wanted us to touch base with her for input and a possible second opinion on other issues that may be influencing or are being influenced by his brain activity while sleeping.


So, yes, Momma went MIA and look what happened. I can be strong - I can. I will because I have to be. But, I surely won't be letting my blog go much longer without an update... I can't take it. I need it.

I'll be back with an update as soon as we get the next set of results.

Another Chapter: Working to Maintain

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So, what did she say?

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

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

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

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

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

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

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

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

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

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

"What if they don't like me?"

We've all wondered this before...

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

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

"Who?" was my immediate reply.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Pulling wagons...

Last night, I joined 8 friends for dinner and drinks at The Deck. If you haven't been, you should check it out. It's a lively, outside 'deck' where you can eat, drink, and be merry along one of Fort Wayne's finest rivers. Although hot and humid, we were thankful for the breezes rollin' in off the coast - or so we pretended. 

Of these 8 friends, three of them have been my friends since 6th grade, four of them since my freshman year of high school, and one I met over the past year (although you would never know who is who because we all fit together like a perfect puzzle). So, amazingly, many of us have been friends for over 20 years -- I have spent more years with them than without them. 

What's so great about this group of friends? We can pick up where we leave off without missing a beat no matter how long it is before we see each other again. Last night, we were short a few of "the girls," but I guarantee the next time they're able to join, the conversation will be as if they didn't miss a thing. Our conversations jump from babies, to significant others and hubbys, to dating, to kids, to laundry, to remember-whens, to hair-dos, back to those significant others and hubbys, to pulling wagons, to things even I won't type publicly on my blog... it's a vicious cycle, really, but we love it. And, somehow, we manage to each be heard and follow along - again, without missing a beat.

I'm sure other groups of friends have bonds, too. But, this group, despite moves, families, jobs, and other life-changing events, has stayed together. Sure, over the past twenty years, a few of us have drifted in and out, but the group is always there to welcome us back, pick us up, and remind us why the heck we were all friends in the first place: we're better together.

Last night was the perfect example.

We laughed so hard my cheeks hurt. We finished each others' sentences. We talked about things that would make other ladies blush. And, we giggled like we were still in high school about pulling wagons. (Literally -- pulling wagons and wagons... of kids.) :)

It's what we do. We're friends. Life-long friends. And, we're good at it. Really good.

So, thank you, ladies, for being one of the best things in my life. 

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!

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. 

Surgery Update: Day 3

Today is our third day at Riley - our second day post-op, and today has gradually gotten better.

Before I continue, let me remind you that Graden has two brain issues: the first is the Chiari Malformation, which is why we are here, and the second is Heterotopia (gray matter), which is at the top of his brain. The Chiari (Key-Are-EE) is what causes Graden trouble with central apnea (causing him to stop breathing at night), breathing regularly, and swallowing (causing aspiration). The gray matter causes seizures and seizure activity. The surgery we had done Monday (a decompression of the Chiari) has nothing to do with the seizures.

It was by "luck" that Graden had episodes yesterday while we were here. 

I say luck, because although I was terrified, I know the doctors seeing this behavior will help us determine the next step of treatment for that brain concern.

Last night after I posted my blog update, we learned the 30-minute EEG showed nothing abnormal, which was good news at the time. We discussed the episodes further, and in much more detail, with two Neurologists this afternoon. The two doctors are team members with the doctor (pediatric neurologist) we were referred to from our Neurologist at home. We will hold our appointment with her in July, but, after yesterday and his history of seizures, they are moving forward with tests now.

After reviewing the results from his last two tests that were faxed over from Fort Wayne, they decided to proceed with their own prolonged EEG overnight. So, he got hooked up around 5 pm and will wear the wires for at least 24 hours... Maybe longer. A concern is that he may be having more than just the absence seizures... The good news is that this seems to be something we can treat with an additional medication. 

We are really impressed with these two new-to-us doctors. As with all our experiences with Riley, these doctors are friendly, but they are also so thorough and willing to answer our questions. They are also very proactive and supportive of us and Graden.

In other news, Graden took a few extra naps today where he really seemed to sleep soundly... Tissues drastically improved his spirits from when he woke up this morning. He wants to be home, but even more, he misses his brother. 

Late this afternoon, they also allowed him to be freed from many of the wires and monitors. While they're still watching him closely, he was able to walk down the hall for a quick game of foosball with Dad. G won, of course. :)

He has also decided to eat. Not much, but a few bites is better than the nothing he has had since Sunday... The meal of choice? Mac N Cheese -- of course!

Now, as we wind down for the night, he's enjoying some applesauce and another viewing of Hotel Transylvania -- both favorites of Grado's.

Thank you for the continued support. Phil and I talk about how many people have reached out to us... It's amazing. I truly believe Graden's story has reached so many people because of his wonderful, contagious spirit and humor. He has made tons of friends here and will continue to touch the hearts of many... I just know it.

And, for those of you going through similar journeys, please let us know... Waiting and learning is difficult, but I know that talking to others who have been down this road is helpful. We want to help the way others have helped us.

Surgery Update: Day 1 & 2

Graden's day began yesterday at 4:30 am. We woke him up, gave him medicine, and let him play in the bathtub at the hotel before we left at 5:15.

We arrived at Riley, after a sleepless night, at 5:30, registered, and was given a room for preparation... Graden was taken back right at 7:30, and the waiting began.

Watching him leave us was challenging. Of course, he did great and was busy making friends  with the anethesiologist. We just wanted to be with him, too.

At 9:20 am, we got our first update... All the IVs and lines were in, he had responded well to the anesthesia, and was "funny" before he finally fell asleep. Apparently, he told them about his brother and school. 

At 10:25 am, we got our second update... All was well, and the Doc was officially "in the brain." 

At the third and final update, at 11:30 am, the nurse reported that the Doc was closing the brain and all was still well.

Around 12:30, Graden was in recovery, and we were called to see him. 

The Doc came to tell us all went great. She was successful in completing the surgery and even cleaned out a "web" from around the brain stem, which should also help in relieving pressure off the flow of spinal fluid. We can't wait to tell G he is a real live Spider Man! 

...the walk from the waiting area to Grado seemed to take an hour...

He was asleep in recovery and had his back towards us. The first thing we saw, then, was the bandage. And, I can't sugarcoat it -- it was breathtaking. Literally. 

It's almost the length of the back of his head and had blood all around it. Tears immediately welled in both of our eyes. Thankfully, the nurse was quick to tell us that not all the blood was from the incision. Instead, some of blood came from two pokes on each side of his head that held the halo-like brace that held him still during surgery. One poke had come close to an artery and bled a lot - so much, in fact, that he got one stitch on the side.

While we waited to be moved to his room, the nurse updated us on Graden's recovery since coming out of the operating room. She said he was responsive to her and had done all that she asked, but he was extremely tired from all the anesthesia. 

By 1 pm, we were transferred to our room in the burn unit at Riley. This is a typical placement because the nurses are familiar with keeping sterile environments. The ICU team visited us frequently, and it took us a few hours to get situated and caught up with what we should do and expect.

Eventually, he woke up and acknowledged us... A feeling I will always remember.

He was awake off and on for the evening. He even told Aunt Rachael he loved her before she left, which was incredibly sweet. 

Throughout the night, he caught a few hours of sleep. He was awake from 1 am until 2:30 am, so we watched Hotel Transylvania. He did a great job, and all the nurses complimented him on how great of a patient he was... We are so proud of him.

Today, our second day, but his first day post-op, has been up and down. After a great night and morning, we had a bit of a scare and possible set-back. To sum it up, we believe Graden may have had a series of seizures, causing him complications with breathing. Between 12:30 and 3:30, we were focused on figuring out what was going on, and our Doc came in during that time.

Eventually, G came around and perked up... He even asked to play the Wii. He tried for a bit, but he is extremely sore and wore out... Although, he has yet to complain!

Our parents left for home around 4:30, and wouldn't you know, they came to notify us at 5:30 pm that he was being placed back under the care of ICU (he was released around noon -- 24 hours post-op) and that the Neurologist on call would be in to talk to us. They had also ordered a 30-minute EEG, which was just completed in our room...

Now, we are back to waiting...

As soon as we know more, I will share. But, I can't promise it will be anytime soon... This Momma and Daddy are nervous and exhausted - both emotionally and physically. I will do my best to blog tomorrow at the latest. 

We appreciate each and every one of you... Thoughts, prayers, texts, Facebook likes... All of them make us stronger. From the bottom of our hearts -- thank you. This has been the most challenging few days of our lives. 

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. 

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."

The Hubby Who Won't Stop.

Once upon a time there was a girl who needed to meet a guy that would love her for all her imperfections. 

She did.

They married.

And, they lived... stressfully-ever-after.

There's no denying the many stresses that come and go during a marriage. Babies. Money. Jobs. Family. Home repairs. Did I say Money?

We have all experienced them - some worse than others, some for longer periods of time than others, some more publicly than others, but they're still there. We may not see them, but they are there. We may deny them, but they happen.

A perfect marriage isn't about not fighting, disagreeing, bickering, frustrating, annoying... A perfect marriage is about making it through the challenges, seeing past the frustrations and annoyances, learning to compromise and communicate, and realizing that you still want to wake up next to your spouse even after they drive you nuts. :)

I remember after Phil and I got married everyone said, "The first year of marriage is the hardest."

I CALL B.S. (Bologna for those of you with softer ears than I.)

The first year was the easiest for us. We were still smitten. And, even though we got pregnant right away (as planned), we were still so focused on each other and bringing Landen into our world that we didn't have time to worry about much else. We were in love and were ready to tackle the world.

Then Landen entered this world in a whirlwind of challenges... I'll spare you the stories I'm sure many of you have heard. Let's just say Graden isn't my only fighter. We're lucky Landen is still with us today -- thanks to my doc! Over 32 hours of labor, many scares, an emergency c-section and surgery the next day for me, breathing complications, 7 days later, Landen and I got to come home. Not as long as many babies we met in the NICU, but I was still in trouble. In fact, Landen was released from the hospital before me. 

During the first several months of Landen's life, we lived with my in-laws. Thankfully, our family is all in town, because my Dad and Mom-in-law helped me with Landen every single day... I couldn't lift him. I couldn't feed him. I couldn't do anything on my own. Each night, I had to pump while Phil fed Landen because I couldn't nurse him directly (after complications in the hospital). Phil had to help me in and out of the bed and help me set-up and clean-up. He even changed most of the diapers. 

I'm not sure I've ever fully - certainly not publicly - acknowledged just how much Phil did as a new dad. I was embarrassed that I couldn't take care of my baby "like other new moms" could. But, there was Phil, doing everything I couldn't and still working every single day. He never complained. 

Two short years later, Graden entered our our world -- without any chaos, actually. We were so thankful. We had done everything we could to prevent any of the issues that Landen had to deal with... until three weeks later.

Phil was going back to school, working, and still helping me a ton. Having a c-section is no easy task, and mine have been worse due to some personal health issues. Needless to say, deliveries are dangerous for me. So, again, Phil was left being "super mom" to me, Landen, and now Graden. 

I've blogged this story before; you can read it here. Short version: Graden began his adventure at three weeks old -- shortly after Phil and I had celebrated our 3rd anniversary.

And so began our stressful years.

I worked two jobs for awhile so Phil could go back to school. Business wasn't his thing -- commission jobs are tough and we needed insurance. Teaching was his thing -- he is an amazing teacher, but cut-offs, transfers, lay-offs, and the entire job market of teachers was a mess when he was trying to get in (shoot, it still is slightly disorganized, many of you know this first-hand). During this mess of me working weekends, nights, and Phil trying to find something, and Graden going back and forth to the doctor without us really knowing what was wrong was our worst year. Ever.

It's no secret - we had more than one challenge. Looking back, we know we weren't even mad at each other -- we were mad at the world, our situation, our frustrations with jobs, not having enough money, fighting with insurance companies, cars breaking down, and Graden's health. There were days we just didn't understand. Our faith was being tested. Our marriage was being tested. It wasn't fair.

Luckily, we realized we loved each other too damn much to let each other go. And, Phil, never faltered. Never let me think I was a bad mom. Never gave up that we would get through anything. Never pushed me away. And, still, never complained... 

So, we made it through that short time (thankfully). Phil turned a part-time job into a full-time career and has been there for several years. He's happy and they're good to him. We started finding out more about Graden and were able to begin new doctors' visits and medications. And, I was able to return to school and complete the degree I should have long ago...

Now, over the past five or so years, we've had more challenges, but not all at once. We've grown in our marriage and we've grown in our faith. Sure, I still have my days where I want to cry, hide, or scream... but don't we all need a break from life sometimes? I'm not ashamed or embarrassed (as much) as I used to be about saying that I need a break -- that doesn't make me any less of a parent. Because of Phil, I know that my decisions, our decisions, make me a good mom. The best mom for our boys. Even when I have my moments of doubt (remember, I'm quite the worrier), Phil reminds me what's important -- and he never complains.

Are we perfect? Bah! No way! 
Every single one of you has heard me raise my voice at Phil or the boys. Or both. :) (I'm working on it, okay?) 

I can't stand the way he folds clothes, but he tries. He leaves the dirty dishes in the sink until I do them, but he works 80 hours a week, too. I make him take out the trash and leave it pile up and overflow, which I know annoys him. ;)

I won't ever pretend to be something I'm not, and I am not super-mom. I'm strong. I always have been, but I'm also weak. My bark has always been worse than my bite. I'm tough on the outside, but mushy on the inside. I always make sure you're okay and often put myself last -- that works for me. It always has. But, I'm more scared for Monday than I have ever been about anything... 

But, today, I needed you to know, Phil to know, that he is what keeps me going. Prayers help. Hugs are good. Calls, texts, emails are nice. But, Phil won't stop... believing in me, loving me, annoying me, laughing at (with) me. Teaching, encouraging, and loving our boys. Reminding the three of us why we're awesome as a family of four -- no matter the challenge that comes our way.

So, yea, once upon a time there was a girl who needed to meet a guy that would love her for all her imperfections. 

She did.

They married.
They overcame obstacles. Together.

And, they lived happily-ever-after.

I love you, Phil. xoxox

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.

But, gradually, over the past year especially, I've become hypersensitive to the needs of others. No longer do I just want my boys to "be nice" -- I want them to acknowledge that there are people who do not have the basic needs: water, a house, a bed, new shoes, or the latest Nintendo game. Well, okay, a Nintendo game is not a basic need, but you get the drift...

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.

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Here's another organization that I support:
http://www.kah-fortwayne.org/
Check it out! The director is a dear friend of ours.