One more month...

I've started this blog post three times over the last three days. Each time, I try to think of something clever to mask the stress I feel about the date. May 10th hit me like a monsoon. It rushed in, without warning, winds blowing my mind in every direction, clouding my brain, causing me to feel an instant tension... 

One more month until Graden's surgery. 

Luckily, I finished my semester last week. Maybe that's why I noticed May 10th's arrival? I'm done for the summer. I can focus 110% on Graden, and my only obligation for the next few months is my family. Truthfully, I can't think much past June 10th anyway... One day at a time. Literally.

We have appointments, follow-ups, check-ins, therapies sporadically scheduled over the next few weeks. I'm trying to get all my "ducks in a row" and be prepared for us to travel to Riley. Landen will be staying with family (a few nights at a few different homes - he's excited but disappointed he can't be with G). 

Today was my first official day off, and I hardly sat down. I am keeping busy, cleaning, organizing, getting caught up on emails, files, and anything that seems tedious that I can't find the time to do during the semester. I'm leaving my lesson-planning/course rearranging for when we are home after surgery. For now, I'm going to take a break... read a little, write a little, and have fun with the boys (all my favorite things). 

I really want the next four weeks (exactly!) to be amazing for Graden, you know... just in case. If you feel like a play date, please let me know. I'm sure we'll be going to the zoo, the park, the splash-pad, baseball games, and wherever else I can think of... After his surgery, he'll be on "limited activity" for three months, so now is his time to enjoy summer.

We met our new therapist last week; she was wonderful with Graden. We will get another appointment in before surgery, too. I'm looking forward to working with her. She seems positive she will be able to help Graden with his "attention and impulse." Graden took to her immediately and was well-behaved during the hour-long consultation. (Proud mommy.)

Besides noticing the date roll around, life has been busy (but normal!) since my last post. The end-of-the-semester always keeps me occupied, and Landen started baseball season! So, the last few weeks, we've been adjusting to the game schedule.

We do have good news, though: We sold our home! (Did I tell you that yet?) We should be closing the first week of June. (Keep your fingers crossed we can get this done before surgery!)

Also, we passed our goal for our CSF Solo Walk/Fundraising for a new CSF Chapter in Fort Wayne! Check out our Team Page. There's still time to donate (end of May) or join our team! The more the merrier. :)

Other than that... there's  not much to report. Thankfully. I'll check back in before we leave.

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Albert Einstein said, "Life is like riding a bicycle. To keep your balance, you must keep moving." He was a smart man, no? :)

Two Months of Worries.

I tried to post yesterday, but I couldn't find the words.

I started out quiet, moving through the necessary motions, smiling when needed, and faced my obligations with ease. In my office, three amazing ladies were able to see right through me and gradually got me talking. 

An hour later, I was feeling much, much better. 

Not better in an "allmyworriesaregone" way, but in an "Icandothis" way. 

Graden's surgery is in less than two months (yesterday was officially two months exactly). I can do this. I can make it through the next two months...

Do I have a choice? No, and I wouldn't want it any other way. 

I'm a mom before I am anything else. I can be a wife, a friend, a teacher, a writer -- so many things... but right now, Grado needs me first.

Yesterday, when I was talking with my coworkers, who have really become such good friends (thank you!), I mentioned one of the many struggles bothering me:

I can't show too much weakness, people will think I'm making it about me or that I truly can't hack the stress.

I can't be too strong, people will think I don't care as much as I should.

I can't be too optimistic... you know why.

I can't be too pessimistic. I just can't live every day like that.

Of course, you may ask why I care about what other people think, but I do. Always have. Always will. Don't we all a little bit, even if we say we don't? 

And, let me tell you, until you go through something that makes you question your every move, be careful to judge lightly. :) It's hard. Harder than I ever anticipated.

I want people to know that Graden is being taken care of by the best Mom for him. Am I the best? I don't know, but I do know that we work. Graden and I are a good fit -- a lot alike, which isn't always good, but we make it work. :)

Is he always happy, silly, funny, and patient? Um, no.

Am I always happy or patient? Hell no.

He is not perfect. I am not perfect. And, we're both okay with that. 

So, why do I feel like we need to be? 

Sounds so petty when I type it. But, this is my place to be honest, to share, to get through this, and to admit that I know better than to worry so much... 

But, damn it. It is hard.

I'm not sure what the next two months will bring, especially considering all the changes that have happened in the past two months. I do know, though, that I'm going to wrap up my classes, hang out with Graden, volunteer at Landen's school for end-of-the-year activities, and keep as busy as I can. I even have a new project up my sleeve (more info to come soon). 

So, as I posted Monday, the countdown has started...

Less than two months to go.

Control.

I did not mean to let three weeks pass before a post; my apologies.

Somehow, school (reading, writing, researching, grading...), laundry, organizing (cleaning, moving, unpacking), appointment-going, and flu-fighting (among many other things) stole me from you briefly.

Allow me to catch you up on our lives.

Our house, you ask? It's for sale. Still. Yes, I know... it's only been a few months. But, it's beginning (Who am I kidding? It did from the start) to drive me crazy. We just want it sold. No, we need it sold. No, you don't have to buy it, but I sure hope someone does. :)Soon. Our realtor - God love him - works hard; we are so lucky to have him!

The hubby, Landen, and I have all managed to be sick. Landen is doing much better since my last update and is currently enjoying his spring break. The hubby and I had a 24-hour flu, which was a nightmare. How is it that we manage to get the boys flu shots and forget about ourselves? Note to self for next year: get that flu shot!

Graden - knock on wood - has managed to stay healthy.

Since my last post on March 14th, though, G has had six doctor's appointments, some blood work, swallow therapy, a neuropyschology test, and I'm sure I'm forgetting something... all of these things followed the sleep study and the V-EEG. Tough kid. Stressed Mom.

We have been using the BiPAP machine, and it seems to be helping him sleep a bit better - although, there are still nights...

We haven't heard back from the bloodwork, which usually means it's okay. Maybe I'll call them today...

We received news from the Neuropsychologist yesterday. The good news is there are no concerns cognitively. (Duh. I knew he was smart.) :) 

The not-so-good news is that there are still concerns about his attention and impulse -- side effects from his brain defect, although the same could probably be said about me. Ha!

We will be meeting a therapist soon to work on "things." They seem hopeful that we can work on preparing him for the school setting... Can you believe my baby will be in Kindergarten in August and SIX YEARS OLD in November? Whew!

The biggest stressor has been the anticipation of Friday's appointment at Riley. We thought we sort of knew what to expect (how's that for confidence?), but so much has happened since our last visit -- three long months ago. Graden has had so many tests and new developments...

I'm just going to put it out there: We are worried. I am worried. Graden is... well, Graden isn't. He's his usual witty, energetic self. Thankfully. But, this time, that doesn't make it any easier.

I can't help feeling like I'm not doing enough. I want to handle it for Graden, carry the burden, the weight. I want to control it. To fix it.

But, I can't.

I hear myself making excuses. I try to be so patient, but I am not. I want answers. I try to explain what the doctors, nurses, and specialists say, what the tests results mean, but I can't. I can't stress the urgency in their voices to my family, my friends, Graden's friends. I hear myself downplaying, hoping with others, but I worry myself sick. Literally. He has obstacles, challenges. I see them. Every day, I see him struggle.

But, I can't fix it.

I try so hard to live "normally." I want him to play and just go about his childhood, and he does, but he's different. Every child is different (boy have I learned that!), and different is okay. Good, even. Graden, and his special-brain as we have all started calling it, is a "normal," ornery, little five-year-old who still gets in trouble for peeing on the toilet seat, sneaking a fruit snack, or not sharing with his brother. Honestly, those moments may drive me nuts, but I'm so grateful for them... they make us "normal." Right?

And, so, while I work through my own issues, I'll say this again (my fault, not yours) - I miss my friends, and I'm sorry I come and go. I will get better. I will. Thank you for continuing to ask me to do things even if I repeatedly cannot join you. Please know that there are just days, weeks that go by before I even realize that I haven't blogged, responded to an email or text, or called to make plans. Time is not something that has been on my side this past year.

Yet another thing I cannot control. :)

Days go by...

It's true: Time flies. (I haven't decided about the "when you're having fun part" yet, though.)

Can you believe we began this journey two years ago? Graden had his last full seizure in March -- two years ago! During that time, we have gradually found out what caused many of his traumas from birth to 3 years old. During 2012 alone, we have had more visits and tests than we have in the past 5 years of his entire life. 

A week has passed, and we continue our therapy. At our "check-in" on Tuesday, we were told he was doing great with his exercises at home. While he worked/played with the therapist, she reminded him about little techniques until he was doing them on his own. It's bittersweet watching him do so well, be so grown up...

When we got home from therapy Tuesday, I received a phone call from our Pulmonologist asking if I could come in Wednesday (the next day!) at 11:20 for an appointment. I wasn't sure what to expect, because the nurse didn't give me any information. Needless to say, Phil and I both went, unsure of what to expect.

After a painful 24-hour wait, we arrived at the appointment, which lasted longer than many of our other visits. The Doc reviewed Graden's last month or so of files, test results, and current condition and informed us that he wanted to touch base and pursue the next steps now instead of waiting until after therapy (remember, our doctor at Riley is giving us until April 5th to see if we can see an improvement).

So, next Thursday we are doing that "sleep study" I mentioned in my last post. Graden and I will be spending the night at Lutheran so they can watch him overnight. Our doctor will be the one doing the test, and he will be looking for a "Central Apnea," which is defined as: when the part of the brain that controls breathing doesn't properly maintain the breathing process (cited here).

The doctor continued to inform us that because of Graden's minimal (but difficult) side effects from the Chiari, we need to determine if there are other concerns being caused by the malformation; one such issue would be the central apnea, which, combined with the aspiration, would be two major side effects and be grounds for surgery. If we do not notice any apnea - or slight - we may be able to report back in April at Riley that our therapy is working and no other issues have been produced (at this point) from the Chiari.

Obviously, we're are hoping for little-to-no apnea! As if I don't already worry, especially about the seizure activity he experiences, the thought of Graden not breathing while sleeping is horrifying.

The doctor also suggested we do a test with an ENT on Graden's vocal chords (which I'm pretty sure just fine -- the kid is LOUD) to be sure there is no pressure there like we've seen in his laryngeal muscles (swallowing). 

Before we left, he calmly told us that this was not going away; even if we did the surgery, he wanted us to understand that the malformation would be there. And, worse yet, the surgery isn't a "cure all." We already knew, but that doesn't take the hurt away when we hear those words.

So, we're still at it... one day at a time, and that time is flying -- thankfully!

After The Break: I'm Back.

I could start by telling you every detail of the past several weeks, including how wonderful our holidays were, but I won't. Instead, I'll get straight to the point: We had the best Winter Break ever.

Not only did each of us make it through several weeks without being sick (minus some sniffles and sinus headaches), but we got to spend more time together in the past three weeks than we had in the past three months. And, no, I am not exaggerating.

Some of you know, this break came at the perfect time. I reached my limit last semester and almost gave up. I needed this break in more ways than one...


I'm sorry that I haven't blogged any updates, but to be honest, I stayed off the computer as much as possible. See, the boys think I "do homework" when I'm on the computer. So, I stayed away. I played all sorts of games, read books, watched movies, cleaned house, and reorganized closets, drawers, files... You name it. I'm sure that doesn't sound so fun to many, but surely a few of you can relate to my need to "reorganize" things. It makes me feel put back together and helped me relax over break, which is exactly what I needed. Well, that and time well-spent with the boys...

I don't mean the kind of time where we sit beside each other while each of us does our own thing. No, I mean the kind of time where we give each other our full attention. It was wonderful... Good for my soul... And priceless. Absolutely priceless.

So, now, as we get back in to the swing of our schedule, I am back, feeling stronger and more relaxed than I have in several months. I actually feel prepared again, like I did going into 2012. I feel like myself... Mom, teacher, writer. I even miss my friends and am working on making more of an effort. I'm Aunt, Daughter, Wife, Sister. I'm happy, that's what I am.

All because of some "me time" and time with the boys and hubby. Amazing what a little love can do.

Well, a little love and no work. :)

As far as appointments go, we are heading to Riley on Friday, January 25th for another MRI, test, and appointment -- all in the same day, so we should get results quickly. Keep your fingers crossed and send prayers and positive vibes to Graden. As always, it helps keep us (me) going.

Happy 2013!