Dear Graden...

"Everyone has inside of him a piece of good news. The good news is that you don't know how great you can be! How much you can love! What you can accomplish! And what your potential is!" --Anne Frank

Dear Graden,

Today, we went to the doctor. You were so tough! Mommy was her normal worried, stressed-out self, Daddy was calm and collected (at least on the outside), and your big brother, Landen, was attentive and patient with you, as always, as you showed him around "your doctor's office." 

Your doctor reminded you today that your brain is special, to which you calmly replied, "I know." Your blunt replies to comments such as these always make Mommy and Daddy smile. Today, your doctor smiled, too. She was proud of you and happy to tell us some good news.

It turns out the nurse made it sound a little worse than it was. Sure, I was mad -- for a minute -- until I realized that this was okay; we all prepared for the worst and were relieved to hear news that wasn't as bad.

Your Chiari Malformation is measuring just beyond the normal length, which is not as bad as we heard last week. Because of this minimal measurement and your lack of symptoms typically caused by this malformation, you do not need, in her opinion, surgery. 

This is when Mommy and Daddy looked at each other. We weren't sure whether to scream with joy or cry. Instead, we smiled at you and continued to listen to the doctor.

So now we wait. We watch. We learn. And, we visit Riley Children's Hospital to talk with a Pediatric Neurosurgeon. This visit is a precaution -- more for information for Mommy and Daddy. As you grow, your malformation may grow; we just don't know. It is for answers to questions such as that one that make us want to visit Riley.

The even better news is that you continue to grow, to learn, and to create joy and laughter in so many of our hearts. Your balance, your vision, your knowledge, and your strength continue to develop and shine each day. Your doctor reminds us that you continue to impress her. With your brain defects, especially the malformation, this is something we are  so thankful for! You, my sweet Grado, are my inspiration...

I love you more each day... more than I ever knew was possible to love another. I am so blessed. So thankful. So... relieved. Sure, I worry. I worry every day for you, but you constantly remind me what you have already been through. You prove to me - every day - that this roller coaster ride is worth every single minute I have with you.

I love you, Grado.

Mommy

Patience.

"Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace." -- Victor Hugo

One more day...

"If music be the food of love, play on." --William Shakespeare

Yes, Mr. Shakespeare, yes... play on!

Today, it's just too darn hot to be outside, especially with Landen. He was struggling yesterday, and while we were out for just a few minutes this morning, he told me that was enough. Because of this, I'm in a "mood." You know, the "time-to-kick-in-gear-and-clean-and-organize-anything-and-everything-or-toss-it-in-the-trash" mood that moms tend to have when they're stuck inside. 

And, when we clean, we dance. Can't help it. In fact, I would bet that the louder the music, the better I clean. I think my dad may have taught me that. :) 

So, here are some of my all-time favorites to turn up while I dance clean. Don't laugh! I'm so serious.

First up: Eddie Money. Because who doesn't love some Eddie?

Pitbull? Enough said.

Shoot. You can do anything to some ACDC... forget just cleaning!

Long, hot summer? Duh. 

While I'm in the "country" mood... here's Luke.

I don't need to remind anyone about my love for DMB. It's too hard to choose just one song that I blare, but here's a good one!

Here's one that makes me think of my dad. Ha! Yep, that's Lionel back in the day!

Maybe one more that comes from my first dance-cleaning parties... Trust me, you can dance around to this, right Dad? :) Good ol' Phil. 

I could post songs all day, from all styles, from all decades... But, I'll stop for now. Here's one more -- that the boys love -- to get your blood flowin'... Yes, LMFAO. 

Hopefully, your feet are tappin', too, or at least you're smiling/laughing at me, right?. :)

Happy cleaning!

Is "thanks" enough?

This morning I wonder if my "thanks" is enough? Lately, I am extra mindful of saying those words -- thank you, but I wonder if others truly understand that I actually feel them, too? 


Over the past few weeks, and during some of the boys' struggles in the past, I have received emails, text messages, voicemails, calls, and kind words about how someone is thinking of us, praying for us, letting us know they will be there if we need dinner or anything, really. And, although I would do the same if the situations were reversed, I wonder if the person offering these small gestures realizes that they aren't so small to me?


It makes me think of Kate's Kart. Have you heard of this program? If not, you should check it out, and, while I hope you never have to experience it, I do hope you take a minute to smile at what they do for kids like Graden. Something as simple as a book makes these kids enjoy (if that is possible) their visit to the hospital. Just last week, Graden and I talked about how we will be giving back to Kate's Kart so another kid can have a book, too. He looks forward to seeing them wheel their cart around the corner... every time.


And, what about my friends? My dear friends. Sure, I post "thanks" on Facebook, but is it enough? Do you all really understand that I wake up every morning and count my blessings? I do. Then there's friends-of-friends and friends I haven't seen in years... and they take a few minutes to send me a note or click "like" and it sounds so silly, but it honestly makes me smile and appreciate their thoughts, if even for that minute that it takes to read a status. 


I realize I have cancelled plans, postponed dates or meetings, and not returned phone calls or texts as quickly as I would have a few months ago. I realize, too, that I'm forgetful and preoccupied. But, please trust me, that does not mean that I am pushing any of you away. Instead, I am slowing down. Taking time for myself. Enjoying the boys a bit more than usual. And, learning to prioritize and not take on more than I can handle. Your patience and understanding during my "time" while I help Graden on his journey is so very appreciated. Really. You may just read this, but please, please feel it. My words will never do my heart justice. I only hope that someday I can return the kindness, the love, and the patience.


I love you. Yes, you. Each of you.

Just 5 more days...

Five more days until we know what the next part of Graden's journey is... Five days doesn't sound like a long time, really, but when you're waiting for something so important, five days is a long, long time. 

I know I want to know. I need to know. I want to understand, and I need to understand. I wonder, though, if I am ready. I know I have to be ready, but will I be? 

Some days I'm tough. Some days I am not tough at all. Some days I'm mad -- angry even. Other days, most actually, I am thankful. Yes, yes... it could be worse, and I know that. But, I'm telling you, you never, ever want to see your own child go through such a mess. The emotions are one thing, but the physical stress on his body, and mine, is exhausting, challenging, and frustrating.  Still, I am thankful. Graden is living every day like he wants -- without a care in the world. He is the one who reminds me that all we can do is live for now - today - and deal with the next five days as they come. It's amazing how tough he is -- and his strength has never faltered. Ever.

I look back at the last four (almost five) years of his life, and I am amazed. He has *literally* fought for his life more than once -- and, trust me, once was plenty for this Momma. I never forget how far he has come, and each day I smile knowing that he has "won"... but when I really sit down and think about what he has been through, I get that "mommy-protective-don't-mess-with-my-baby" attitude and I'm certain he's had enough. Graden, though, he just takes it. Fights it. And -- so far -- wins. Hopefully, Friday will be no different as we learn what his next obstacle will be... 

Aunt 'Lissa's Little Man

Because I forgot to post this before Monday's call, I decided to post about something that makes me smile: my nephew, Camden. As of now, he is my only nephew and has quite the special place in my heart. 

Here he is swimming with Landen:

And, here he is sitting with Landen:

If you can't tell, Camden and Landen are very best buddies. Graden is usually tagging along, too; he was too busy swimming for me to snap pictures of him, though. 

So, Camden spent the night with me last weekend, which means we spent the entire day together on Saturday. Can I take a minute to brag about him? This little guy was awesome. We were outside the majority of the day and it was close to 90 degrees out. Never once did he even whimper. We swam, played, ate snacks, took a nap (which may have been the only time inside), and played some more. He was so fun! 

I think spending time with him, at this age especially, reminds me of the boys when they were little. Camden shares many qualities of Landen's personality (loving, patient, smart) with a dab of Graden's "stinkerness" (independent, no fear, ornery). Combined, Camden is the best of both my boys, and I love him so, so much! 

Being an Aunt is so fun! It's different than being a Mom. I don't declare to be the most hip lady in the world, but I must say that the way my nieces and nephew look at me melts my heart. We have fun together. Aunt 'Lissa is always silly - even if she just yelled to be good listeners. :) 

So, after Monday's call, I have decided to keep busy. And, if I have a moment when I lapse into worrying, all I have to do now, is pull up these pictures of my sweet, little man and smile. :)

The call.

We got the call today. At about 4:30 pm, Graden's nurse from his Neurologist's office called us to update us on the MRIs he had done Friday. 

Isn't it funny that I wanted this phone call? I thought I would appreciate not having to wait for the results, but this call... this is one I could have waited for.

The good news first... Graden's malformation is not touching his spine (yet). In fact, his spine looks good, normal, healthy even. I'm sure the nurse heard me release a slight sigh when she reported this news to me.

And, then, she said it. "However." She said what I thought I wanted to hear; I mean, I was waiting for this call, right? I knew there would be some bad news; she warned me she had both. For a split second though, I could only focus on the good news. She continued, "Graden's malformation hangs low and is more dense (I think that's the word she used. At this point, I could feel the pit in my stomach growing and the lump in throat forming.) than she (the doctor) originally thought. Okay, what the hell does that mean? (Who knows if I actually asked?)  

She continued, "When you come in for your follow-up on the 22nd," (The 22nd? So, you mean I still have to wait?) she paused, which made me feel even worse, "We, or, um, the doctor, will discuss your options." Options? I just want the damn thing to be gone... 

Well, I thought too soon, because this is exactly what she mentioned when I asked her if she could tell me any more. First, though, I asked her to explain what "hangs low" means since she said it wasn't touching his spine. It turns out there is some sort of cerebral tonsil that hangs from this type of malformation. (Here is an image.) Apparently, Graden's hangs lower than she anticipated. 

Again, what does this mean? To cut to the chase -- Graden will probably have surgery to decompress this malformation. We won't know for certain, but on the 22nd, the doctor plans to discuss these "options" with us and, most likely, will refer us to a Neurosurgeon at Riley Hospital in Indy.

Dangers? Risks? Chances? Side effects? Options? We don't know. The nurse couldn't say; although, she did say the doctor was "on the fence," because of Graden's age and few symptoms (for now), which we believe are under control at this point. The problem with this Chiari Malformation that Graden has (as ONE of his 2 defects in his brain, remember?) is that it is rare, and typically, affects adults. Although there since birth, many times it's not found until later in life. We were *lucky* to stumble across it now because of his "gray matter" (yes, I know that's a Wikipedia link, but it's easiest to understand). Still, we may have the option to wait, but so much can change (as we have learned first-hand)... and if we did wait, it's probable this surgery will still be necessary, because it is still able to "grow," which is why we did the MRIs in the first place (to check the status/size/growth). 

So, we got the call. With my boys, as many of you know, I have received a lot of these calls. Hell, I've had to MAKE a lot of these calls. It's never easy. No matter how much I prepare or worry, it's always different when I actually say, "This is Melissa" when they ask if Mrs. Hirsch or Graden's Mom is available. 

I will never be ready to get the call. 

*Note: please take a minute to click on the colored/underlined words in this post if you have questions about the medical terms involved. 

Love and Hugs from Landen

My past few posts have been focused on Graden's journey. I have touched upon Landen's empathy for his little brother, but I am not sure my words give his heart justice.


Today is Landen's last day of school... his last day of Kindergarten. Not only am I proud of how far Landen has come this year academically and socially, but I am amazed at the little man he continues to become. I'm sure I've told some of you before, but this kid - this 6 1/2 year old boy - has more compassion than most adults I know, which sometimes includes his parents.


Every week day, for the past 9 months, Landen has come home from school, jumped off the bus, ran to the mailbox, and walked in the front door to hear Graden anxiously awaiting him. "How was your day?" Graden would ask, and Landen would reply with a detailed account of his activities, usually consisting of a kickball game with "big kids" at recess, a really fun lunch (like pancakes), a field trip, or a new song. On special days (holidays or history or science lessons), Landen and Graden would get so wrapped up in conversation, they would end up walking around the house discussing how Obama is our President's name or how Honey Bees have big eyes. I think Landen enjoyed this interaction as much as Graden did, and I had to wait my turn to find out if he had a good day and "got green" (which was usually the case) or if he had homework. Most of the time, though, I didn't get a turn, because, eventually, Graden asked Landen those questions, too.


Now, as Graden naps and rests up for his day tomorrow, I wait for Landen to come home off the bus for the last time this school year. My son, my little friend, is moving on to 1st grade. I never liked the saying "time flies," and it drove me crazy when people told me after Landen was born that it would "go so fast." But, now I know. Time does fly. They do grow up so fast. 

Yesterday was a bad day for me. I can honestly say that I sat and cried at one point in the afternoon, because I just didn't know what to do next. I haven't felt that way in a long time, but there are just some days when I worry myself sick... and it wasn't just about Graden. I was quiet the entire evening, calming myself down, reassuring myself that "this too would pass"... Not too long before dinner (only a couple hours after he had been home to witness my "mood"), Landen walked slowly towards me. When our eyes met, I knew this little man of mine knew I was upset. I didn't say anything and he didn't have to, either. Instead of walking away or asking me a question, he said, "Can I hug you, Mom? Do you need a hug?" Even typing it, I lose my words, my thoughts, and tears begin to form. All I could do was nod. Of course I needed a hug. His hug.


"You give the best hugs," I told him, to which he replied, "I know" and I had to giggle. I could feel the weights lifting from my shoulders and the stress drifting away. It was as if his hug brought me back to... me? I don't know. I just know it felt good and made me more proud of his ability to empathize at such a young age -- and he's been that way since he was little. He is so observant of others' emotions. He knows what to say and when to say it. He knows his Momma is a worrier, a fixer, and a stresser. But, he loves me anyway and knows when I needed to be reminded of that love. I am so very thankful for him.

Mother to Son

BY LANGSTON HUGHES

Well, son, I’ll tell you:

Life for me ain’t been no crystal stair.

It’s had tacks in it,

And splinters,

And boards torn up,

And places with no carpet on the floor—

Bare.

But all the time

I’se been a-climbin’ on,

And reachin’ landin’s,

And turnin’ corners,

And sometimes goin’ in the dark

Where there ain’t been no light.

So boy, don’t you turn back.

Don’t you set down on the steps

’Cause you finds it’s kinder hard.

Don’t you fall now—

For I’se still goin’, honey,

I’se still climbin’,

And life for me ain’t been no crystal stair.

Do you remember...

the Tasmanian Devil cartoons? Refresh your memory here. You laugh, do you? Well, that is how I have felt the past few weeks. I'm telling you, I move as fast as that little guy. Shoot, I may even make some of the same noises. Ha!

This week will be no different. I've made a new to-do list to keep occupied until Wednesday morning... when we take Grado to the hospital for all his MRIs. I'm not looking forward to it. All I can think about is how he goes limp from the anesthesia, his breathing becomes slow and shallow - to the point where I want to place my hand on his chest to make sure it is rising and falling, and how he wakes up in a panic. No parent is ever ready to witness their child in this state, and I'm not sure that even having done it before makes it any better... It might even make it worse. 


Last week was our first week home together - just the two of us: Grado and Mommy. He was so good! We went shopping with Aunt Kelly and Camden for "vacation stuff," which meant Mommy and Aunt Kel were shopping for fun Jamaica swimsuits, sunglasses, bags, and dresses. Grado never complained. Instead, he offered his opinion when necessary:  "That's cute, Aunt Kelly. Buy it!"  We went to lunch one day... Graden's favorite: Chips and Salsa. We went to the library. We went to Target. We bought groceries. Again, never once did he complain. He continued to offer his advice while smiling the whole week. 


We're home again this week. Landen has two more days of school and will be spending his first day of summer break at Papaw's house since we will be with Grado for his tests. Landen is a good, big brother though and hasn't complained either. 

Now, let me publicly state my apologies to my closest friends who may believe I may have fallen into a well with no hopes of returning... I have played more "phone tag" and left longer voicemails than usual (if that's possible, right Jen?) in the past month than I have ever. For that, I am sorry... I'm on it and will be in touch soon. Love to you ladies... you know who you are!


So, although, I'm running around like Taz, I'm one lucky Momma to have these two boys (and amazing, patient, and understanding friends) along on this ride.


Here's wishing you a great Monday and promising updates after Wednesday...