A new (bumpy) path...

I will move past telling you how last week was challenging (read my last blog post) and tell you how interesting it was instead.

For starters, the kitchen sink broke. I don't mean broke as in water was spraying everywhere. I mean broke as in the water wouldn't go down the drain. It was interesting to say the least. After a few days of Grado and me doing dishes in my bathtub (can you picture that?), the hubby and his buddy finally managed to unclog some fifty feet of pipes.

While the sink was clogged, the washing machine, which has been trying to break for months now, officially sprung a leak. It works, but the loads have to be smaller and I have to check it after each use. It's painfully annoying, but I think we will live. We will be buying a new washer in the next few weeks... oh, the joys of adulthood.

Also, last week, while the washer and sink were having water issues, my laptop -- while I was attempting to grade portfolios -- decided to have a problem with some "driver." Again, incredibly annoying and frustrating, but it has been a faithful machine, and I won't complain about getting a new one (besides the cost!).

In addition to all of this, Landen was home with pneumonia from Tuesday-Friday last week. We visited the doctor three times -- just for him.

Graden, who had a swallow study done last Thursday, was in pretty good spirits and managed to stay healthy through Landen's illness -- a miracle indeed.

Yesterday, however, we took a turn down a new path...

While still recovering from the heavy hearts (again, see my last post), we were anxiously awaiting the official results of Graden's test. Originally, we thought it would be a test that we didn't have to worry about. We thought the doctor was being proactive and ruling things out, which was not the case.

During the tests, the therapists and nurses began telling me about what they saw, none of which was good. One even went as far as saying, "If you don't hear from your doctor today, you need to call." Lovely. They were helpful, though, and explained that Graden was, quite possibly, aspirating.

At the time, I wasn't sure what questions to ask. I didn't know how serious it was, and I surely didn't know what it all meant. So, I waited. I cried, and I waited.

Luckily, if I can even say that, I needed to focus on getting Landen better through the weekend and pushed my questions aside (right after I googled it). :)

On Monday, I kept busy and enjoyed every bit of the first day of my break.

Yesterday, my day started out great. I had a meeting and a long catch-up session with my boss, who is becoming a dear friend and mentor. I had a lunch-and-library date with Grado. Then, we went to his six-month check-up with his Neurologist.

I'm not sure what I expected. Honestly, I'm not sure I ever expect anything, but I sure didn't expect the words that came out of her mouth: "I think we need to touch base with Dr. Ackerman."

Do you remember who that is? She is Graden's Pediatric Neurosurgeon at Riley Children's Hospital. While I liked her very much, I'm not sure I wanted to see her again so soon... We were just there in August.

Regardless, our Neurologist here thought it was best to notify her of the changes (health-wise and a few other concerns that I won't go into here) Grado has been going through and the results of the test, no matter what they were (we didn't know them at this point).

No sooner than we walked out of the building, my phone rang. It was the Pulmonologist's Head Nurse called to let me know the results of the test from last Thursday.

Thus, our new path...

Graden has some issues with fluids. I could type out all the medical terms, but it is slightly confusing. I plan to do more research and post more. In the meantime, we have to be careful because of the possibility of aspiration. so, long story short, we have to thicken his liquids with hopes of fixing or improving the issue. In turn, addressing this issue should help improve other concerns.

After a 30 minute conversation, a promise to mail me more information, and a follow-up appointment scheduled, she said the same words I had already heard once... "Doc wants you to contact your specialist at Riley to run these results and changes past her."

So, I did. I made the call. I can't believe that dialing numbers could pose such a challenge. It was painful, scary, and frustrating all at the same time. It's hard to explain and sounds silly to type.

Another 30 minute conversation later, I had more information, some answers, an idea of what would happen next, and another test and appointment scheduled with our doc in Indy in February.

So, I'm not entirely sure where this path will lead us, but, as always, I will keep you posted.

Speechless and Silent for Sandy Hook.

I'm not sure where to start. I'm not even sure I have the words.

You see, last week was bad. Horrible, actually. Then, this happened and things changed. 

Let me digress. 

I remember exactly where I was when I heard about Columbine and Virginia Tech, both of which happened after I graduated high school. I think that's important, clearly I paid more attention to the news as I became an adult.

With the exception of September 11th, I can honestly say I was not as affected by those events as I was by Sandy Hook's tragedy. 

Is this because I am a mom? I'm not so sure; I know many people sick to their stomachs by the thought of someone shooting 20 innocent little children who are not parents. 
Is this because among those sweet lives could have been my own angels? Landen is 7; Graden is 5. Yes, it could have been them, and that is too much to handle.

Even more than imagining my boys in the school, even more than the mistakes in the news' reports, even more than the contradictions in who did it and why, even more than the questions I couldn't help but ask, I hated the pictures I saw of the victims - the children. Let me explain.

When Columbine happened - or Virginia Tech, I read or watched the news. I wondered who and why and tried to understand. But, I never, ever remember seeing faces of victims, and I was okay with that. Sure, I prayed, sent love and positive thoughts, and mourned for the losses of so many families, but I never thought about their faces. I'm not sure why - I just didn't. 

But, last Friday, I was home - with both boys - when I heard about Sandy Hook Elementary School. Immediately, the social media sites were bombarded with stories, and shortly after, pictures of innocent little faces. Those faces had names. Parents. Siblings. Friends. They probably even had Christmas presents hidden in closets. Unfinished projects at school. Pets waiting for them to come home...

As I scrolled through Facebook, pictures displayed smiles of happy kids who had to die at the hand of person they did not know. A person who scared them, stole their innocence, and took them from their loved ones. More than being sad, I was so angry.

My point?

Each day I struggle with the possibility of losing my child. Deep down, I know I shouldn't live with that worry, and I should live each day like it may be our last together... and, trust me, I try. But, these little souls have stuck with me for the past few days as we continue to get news of Graden's newest challenges, and no matter how heartbreaking the news is, how frustrating this journey has been, or how much I hurt watching Graden struggle, I wouldn't change a thing, because he is still with me. I'm ashamed, but so grateful, to admit that it took these 20 sweet peas  to remind me. My hope? These lives do not die in vain; instead, I hope their families sacrifices lead to major changes in all our lives.

If you haven't seen "The Voice" tribute to the victims, please watch it. It is simply beautiful.

The journey that brought us here.

I'm going to do something I haven't done before: I'm going to share Graden's journey. 

Sure, I've told you bits and pieces, memories here and there, and relevant information so you could try to understand that he has been struggling from the beginning. But, I have never truly shared (other than with a very few) the horrifying details of Graden's past. 

Before I post more, though, let me tell you how his appointment went today!
Today, we visited the Doctor who, we truly feel, saved Graden's life. He is a Pulmonologist and is amazing; there was an immediate reconnection with Graden, and both Phil and I were smiling as we watched. 

Of course, I can't speak for Phil, but I'm sure he would agree: watching a doctor be so involved with your child, who is struggling with anything, is a humbling, calming experience. Needless to say, we were instantly put at ease.

Long story short, we are finally addressing the side effects of Graden's journey that began so long ago. And, maybe I shouldn't say finally, because, honestly, our Pediatrician has done all she could do -- she has been a blessing and today our doctor acknowledged that she had followed the same steps he would have. 

So, after a long "catch up session," he ordered a test, some new medications, and set us on a new path of treatment for Graden's inflamed lungs. We feel very optimistic today. We know how quickly things can change, but it's such a nice feeling to have for now.

His journey has been on my mind a lot lately; yes, even more than normal. So, I think that's what made my decision for me to share today: the "catch up session." It took me an hour to answer the doctor's questions of "what happened next" and "how long was he sick then" and "when was that diagnosed" -- an hour! Every single year -- every few months -- Graden has been dealt a new card:  RSV, a collapsed lung, seizures, hospital visits, MRIs, CT Scans, Xrays, EMS rides, 911 calls, Tonsils/Adnoids removed, Tubes in ears, more seizures, fevers, colds, coughs, pneumonia, bronchitis, trouble breathing, brain defects... The only thing that has remained the same has been his dimples and humor. :)

Today, when the doctor said, "We always knew it was a possibility he would have trouble from the trauma he experienced when he was young," I knew it was time to share the details. There have been bad days in between, but I'm just not sure I will ever truly get over this one specific day...

Warning: The words that are about to come out of my mouth may upset you. In fact, they probably will. Read with caution.

Here is part of a personal story I have been working on this past year (since we found out about Graden's brain defects); it's about his journey. Someday, I will complete this book and share it with the world. The chapter I will paste below is about "that day." Again, read with caution. If you continue, let me say thank you for reading something so personal, special, and important to me...

Here is the picture to go with the story; this was the 2nd day of his stay. You can see the feeding tube (his nose), the respirator helping him breathe - keeping him alive (his mouth), and his chest tube (under the white tape). The hand is Phil's so you can see how small he was...

Graden's Journey: Where It All Began

The morning of December 6, 2007 I was home with my sons: Landen, who had just turned two the previous September, and Graden, my 3 week old baby. I was on maternity leave and enjoying every minute home with my two boys. Graden had gone to the doctor the day before because he was running a fever and couldn’t keep his food down. He was so warm from his fever that while I was holding him to try to breastfeed him, my husband, Phil, had to put cool, wet washcloths on the both of us. According to our pediatrician, we were to give Graden milliliters of Pedialyte until his fever broke or until he could keep it down. Every few hours he could have a little more.

            Graden was to eat at 8 o’clock that morning, but he was finally sleeping so good that I decided to wait until 9 o’clock. Phil had class at 9 and left the house around 8:30 am. Landen and I were playing in the living room, while Graden slept in his bouncy seat across the room from us. We were afraid to leave him in his crib since he wasn’t feeling well; later, I remember being quite thankful for breaking the rule of letting him sleep outside of his crib.

            Just before 9, I decided to actually walk over and check on Graden. Since he was in the same room, I had been glancing at him obsessively; but, something told me to look closer. I wonder now as I type that how the hell I just knew. Is that what “motherly instinct” is?

            As I stood above Graden, I realized that he looked as though his fever broke because he was no longer flushed. Instead, though, I slowly recognized that he was gray. I remember taking a minute to question my eyes about whether it was really gray. Without thinking, I picked him up. I began talking to him to see if he would wake up. He didn’t. Surprisingly, though, at the time, I couldn’t imagine why, which sounds horrible to say, but it was as though I really did not understand what would cause my son to change color. I knew he was sick, but I thought it was me who was making a mistake.

            I know that I yelled to Landen to give me his sippy cup as I laid Graden down on our ottoman in the living room. He hated being naked, I thought, as I unbuttoned his sleeper. Even more than being naked, he hated being wet. Surely, the water would wake him; I think I said it out loud to Landen, but more for a reassurance to myself, as if saying it out loud would make my actions justifiable. Somehow, as I was going through the steps I could think of to wake him, I managed to hear a voice in my head that said, “Just don’t shake him” because, quite honestly, I wanted to! Again, how horrible to think as a mother of an infant… I just didn’t know how else to get him to open his eyes, and I was trying to suppress the panic that was creeping up my throat.

            Pleading to him to just “open your eyes for mommy,” I grabbed my cell phone – another thing I asked Landen to get me. I will never forget the message I sent via text:  emergency come home now. Simultaneously, I was calling the pediatrician’s office on the house phone – how did I get it? Graden still hadn’t made a noise. While I was going through these motions, I remember feeling like it was taking forever for him to wake up; in reality, it was a matter of minutes. I swear to this very day that I did not know he really wasn’t breathing. Every time I look back, I wonder how the hell I didn’t know… what kind of mom doesn’t know her child, her infant, her new baby is not breathing? He was only about 8 pounds while this was happening; he was small enough that when his heart was beating, it sent his chest up and down – as though he was inhaling and exhaling. He was so still, in fact, that I remember thinking his body was shaking. And, if his body was shaking, surely he was breathing… right?

Finally, after what seemed like hours, I got the nurse on the phone, and as I was trying to stay calm, through tears that began pouring, I started to explain to the nurse that Graden “wasn’t responding.” Just as I said those words, Graden coughed. The nurse heard him (so I know I didn’t dream it) and suggested I get him straight into the ER for testing. She said their office was full until that afternoon and she didn’t want to take any chances – another thing I will be forever grateful for. I had sent another text while on hold, apparently foreshadowing that I was going to need help, even though at the time, I don’t remember understanding how severe Graden’s situation was. The text (which I really don’t remember, asked for someone to come to my house ASAP because of an emergency) I sent went to my brother, sister, and dad, who all live and work close. I didn’t care who responded first, I just knew I couldn’t take Landen to the hospital. I had a horrible delivery with both of my children and could barely manage on my own at home. My dad called to say he was able to leave work and come right over to stay with Landen. I gave him little details when he arrived, because I honestly didn’t know what to expect. I just told him that the doctor wanted him in for tests as soon as possible. Phil arrived just before my dad, and I was ready to walk out the door. Phil, who still had no idea what was going on, had left his car running in the driveway. He told me he had just walked into his classroom at IPFW when he got my text – which was, thankfully, right before he was going to silence the ringer. He didn’t question me; he simply got up and left. To this day he says he tried calling me, but I don’t remember. Every day, I appreciate that we live so close to IPFW.

On our way to the hospital, Graden was awake, but completely lethargic. Phil reached back to Graden’s car seat at one point during our trip to see how Graden was. Usually Graden tried biting or sucking on Phil’s finger whenever he reached back, but Graden did nothing. It was as though Graden didn’t even notice Phil’s hand at all. I remember how much that bothered Phil, even though he tried not to show it for my sake. Through tears and the uncontrollable shakes of my body, I told Phil what had taken place in the last 20 minutes at home. I finished just as Phil was parking in the ER lot. Phil carried Graden in, car seat carrier and all, with blanket draped over the carrier since it was so cold out. We couldn’t see Graden, but took for granted that since he had waken up right before we left, he would still be up 8 minutes later as we walked into the hospital.

The ER registering nurse met us at the door. She seemed as though she was working on something else – maybe even a bit agitated that we came in during her “down time.” Why on earth would I remember that? Regardless, Phil sat Graden’s carrier down on a desk as I was catching her up. I remember saying things like: “not responsive,” “so sick,” “gray,” “hot to touch with fevers,” “our doctor said to just come here,” and so on. As Phil pulled Graden’s blanket back, the nurse looked down and demandingly said, “come on” – as if she instantly knew something we didn’t – and we followed her straight to the back. I remember her saying, “I’ll register you later.” I knew that couldn’t be good.

She took us straight back to the heart of the ER. She transformed into a drill sergeant as she shouted orders at every staff member around and available. Actually, I think she shouted at the workers who were busy, too! Horrible things that I thought I would only ever hear and see on dramatic TV shows. She told Phil to place the carrier down on a long, adult size bed, unbuckle him, and get him out. Phil did as he was told, and within seconds, she took Graden from us and told us to follow her. Instantly, I felt helpless.

We walked into another room just a few doors down that was set up with machines of all sorts, carts full of medicines, and enough staff members to run one of those dramatic TV shows I used to watch.  Questions began flying: “Did he fall?” “Did you shake him?” Shake him? Well, I thought about…“Tell me what happened?” “How long has he not been breathing?” … Wait, he wasn’t breathing? I swore he was. I swore. How could I not know? I was so mad. Mad at myself as much as at the dumb doctors who were spending time asking me too many damn questions when I just wanted them to fix my son. I know now of course, that my answers were helping them to determine what caused him to stop breathing, but it hurt like hell being asked such disgusting questions while I was watching my son suffer less than three feet in front of me. I couldn’t even hold his hand.
            While the doctor’s continued to fire the ridiculous questions at me, I realized Phil was looking at me with eyes that I’d never noticed before. How was it after spending years together that I’d never seen those eyes? “Are you sure?” he asked me with a tone that could’ve been accusatory. Those words hurt me to this day. Phil acted as though he wanted answers and he wanted them sooner than he was getting them. He continued to look at me with despair (which bothered me because now I couldn’t fix my husband either) then switched his gaze back to the doctors trying to establish what had brought Graden into the ER.

I told them every single detail I could think of from the past 24 hours of Graden’s life as they tried to resuscitate him. Apparently on the short drive over (literally it’s less than 10 minutes), Graden had stopped breathing again. I say again, because I’m sure now as I look back that he had stopped breathing at home, too. Later we were told that the nurse who met us at the door had recognized his condition immediately and kicked into action. The doctors told us how lucky we were because “just another minute or two and…” Really? They could’ve left that part out. As if I didn’t feel badly enough for not just calling 911 in the first place, the second I suspected something was wrong. I really just did not know how serious it was, and I certainly did not expect that he truly wasn’t breathing. I even started to doubt my memory. I questioned that maybe when I ran into the bathroom that Landen may have given him a bite of his goldfish crackers – maybe one got stuck. I searched for answers that I didn’t have: answers that I still don’t have.

After a lifetime of trying, Graden began breathing. They were performing tests of all sorts and tossing him around as if he were a ragdoll. Meningitis was their first thought, so I watched them drill a hole (yes, with a drill!) into his leg. He still wasn’t breathing on his own, so a nurse was pumping air into him manually by very rhythmically pressing a balloon-shaped mask over his nose and mouth. Gradually their guesses got ruled out one by one, until finally a chest x-ray got returned that showed Graden’s right lung had completely collapsed. I didn’t even know that was possible. “Serious. Not sure. Still not breathing on his own. Not strong enough. So small.” I remember fragments of the doctor’s statements. I remember knowing how horrible of a situation we were in when the nurses were crying, too. I remember squeezing Phil’s hand so tightly that I felt as if I was hurting him and him telling me he didn’t even notice my strength.

Within minutes of being told about his lung, they got us packed up. A medic transport team came in and made me fill out papers – I still don’t know what they said – to take us straight from Dupont to Lutheran’s Children’s Hospital. The team came in the room wearing suits that I swore made them look like a helicopter evacuation squad. Phil and I swapped looks and I couldn’t help the tears that flooded my cheeks: we thought they were flying him to Riley’s Children’s Hospital.  Instead, we were told we were going to be heading to the Pediatric Intensive Care Unit, which we later termed “PICU.” Thank goodness. They told us to make our calls now. Frantically, I called my dad and then my brother and asked them to spread the word. I remember panicking because I couldn’t remember my sister’s work schedule. Honestly, we weren’t sure Graden would make it through the trip, but tests had to be done as soon as possible and Dupont wasn’t prepared to do them. Whatever it took was my philosophy.

Phil had to drive the car to Lutheran – they told him he could follow the EMS as best he could. I felt horrible he had to drive – alone. At the time though, I got over it quick, because there was no way I was leaving Graden’s side. Phil was respectful of that and didn’t even question my decision to ride in the EMS. He called his mom on the way – who later told me she hurt so badly that she had to sit down when she took the call at work. She hurt for her grandbaby and she hurt for her baby (even though her son was grown up) – a position I’m sure that wasn’t easy. Even though I was allowed to ride in the EMS, they made me sit in the front so that I couldn’t watch Graden and the nurses – that were keeping him alive – in the back.  The entire way from Dupont to Lutheran took minutes (lights and sirens) and one nurse never stopped pumping air into my son’s chest – amazing woman.  I remember the EMS crew very vividly. I remember the driver asking me questions to pass the time and in turn I asked how frustrating it was to be an EMS driver as I watched some cars refuse to move out of the way. They’d move out of the way if their kid were in the back!

Phil got there as we were wheeling into a room they’d prepared. Dupont called Lutheran and told them all about my little fighter. I will never forget the feeling I had when I noticed the clock on the wall at Lutheran read 11 something in the morning. I couldn’t believe so much had happened in just a few hours. I felt like I’d been gone all day already!

Everyone was so nice; but, not nice because they had to be, nice because I felt like they honestly cared. The driver of the EMS even told me he had a son close to Graden’s age, and as he had tears in his eyes, he told me he’d be thinking of Graden. I believed him. I believe that he takes pride in his part in helping people – I admire people like him and I don’t even know his name. I wonder if he realizes the critical role he played in saving my son’s life?

I still couldn’t touch Graden and it was killing me inside. I wanted to hold his hand, remind him that I was still there, and whisper to him my plea that he not leave me. I remember noticing the room was spacious as our nurses came in and out, adjusting machines, moving Graden from the adult bed to a crib-like bed (which he still looked so tiny in). They introduced themselves and asked a few of the same questions that last nurses had, and I answered, robotically. My tears stopped and something came over me: shock maybe? I remember my boobs were throbbing (because I hadn’t been able to feed) and the incision from my c-section burned (because I’d moved around like I was as limber as a gymnast), but when anyone asked how I was feeling, I said fine. How was I going to complain when my son was fighting for his life, and I still didn’t know why? 

------------

Gradually, more tests were performed. Within a few hours of arriving at Lutheran, we met the most wonderful doctors. There were two pulmonologists that work in the PICU at Lutheran. Both of them came in to discuss what was going on with Graden; one (who was a specialist) ended up becoming “our doctor” for our entire stay. Blood work had confirmed what caused Graden to be so sick; they told us together that Graden had developed RSV. It’s a respiratory virus that attacks the lungs, much like pneumonia. It’s common, it starts similar to bronchitis, and most children have the virus before they’re two years old. Since Graden had been sick, when he developed the virus, his system was already “down” and he couldn’t fight back the way a healthy, older child could have. It hit Graden hard and fast. They said Graden was one of their youngest patients they had ever seen with RSV. The RSV attacked him so hard that it caused his lung to collapse. Graden had already been struggling to breathe because he wasn’t feeling well, and his body finally said “enough was enough” – and he quit breathing. Wow. At three weeks old, my son was a fighter – thank goodness.

 What now? That was my question, but I’m not sure I got a chance to ask it out loud. The doctors explained that it was a waiting game from here on out. Graden was on a respirator – that until recently, I couldn’t acknowledge was keeping him alive – for most of his breaths. We were taught how to read all the machines, what to watch for, and what to ignore. The nurses advised us to not stare at them, because they’d be upsetting. As if it wasn’t upsetting enough to just see him hooked up with hoses and monitors everywhere? Every few breaths Graden took were his own, but for the first few days, the machine did the majority of the work. They didn’t know if he would gain the strength to breath on his own again. First, we had to wait for his lung to heal. They had sent him into surgery for a chest tube, shortly after explaining to us what was going on.

Graden wasn’t allowed to have many visitors. No one young, no one old, no one sick and so on. We didn’t want visitors anyway. I couldn’t keep telling them that I was “fine” and that Graden was a “fighter” and that everything would be “okay.” I did not know. No one really knew. Plus, I couldn’t stand the looks that showed how upset everyone else was – and I still felt like I was to blame. I didn’t want to hear who was praying for me. I couldn’t even pray myself. I tried calling some people back here and there whenever I checked my voicemails. Sometimes it was nice to focus on trying to make someone else feel that everything was going to be “okay”… but all we knew for sure is that we would only know in time. I eventually came to hate that word: time. Our parents came up that first day to check on us, as much as to check on Graden. My brother had a cold so he didn’t come up – I remember hearing a sort of relief that he didn’t have to “see Graden that way” in his voice as he explained to me why he couldn’t be there. Our sisters stopped in and out – but I can’t remember who came when.

The first day felt like it lasted three days. They tried removing him from the respirator to see if he could breathe any breaths on his own – and he crashed. Again, visions of a bad TV show flashed through my mind as nurses from everywhere came running into the room. We stood as far back as we could to give them the space they needed and watched as they “brought him back.” They’d regulate the monitors, respirators, IV, and anything else he was attached to, in order to adjust to any changes he made: forward or backward. Every few hours they tested him to see if he could take another breath on his own and become less independent on the respirator. Sometimes it would work well, and other times he’d take a step in the wrong direction.

The first night, I got sick and had to go home in the middle of the night to take a shower and do something about having stopped breastfeeding so suddenly. I remember the nurses bought me cabbage, and I thought they were crazy but so thoughtful. It was so painful. I sobbed as I left my baby – but the nurses promised they weren’t making any adjustments through the night and would call if Graden made any changes while I was gone: good or bad. Phil was there, so that made me feel a little better, but I hated it, nonetheless.

I came back as quickly as I could and remember that I still felt horrible. Upon my arrival, Phil and the nurses asked, “Feeling better?” to which I replied, “Much.” Not at all, was what I should’ve said.

Tomorrow...

Tomorrow is the day we've been waiting for: G's appointment with the Pulmonologist.

Part of me wants to stay home in sweats, cuddled up next to G, watching Avengers over and over and over...

Part of me can't wait to visit the doctor and hear what our next step will be...

All of me wants to help Grado, though, so off we go at 8:00 am. 
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i carry your heart with me

e.e. cummings

i carry your heart with me (i carry it in my heart) 

i am never without it (anywhere

i go you go,my dear; and whatever is done
by only me is your doing, my darling)

i fear

no fate (for you are my fate,my sweet) i want
no world (for beautiful you are my world, my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart)

My favorite holiday...

... is tomorrow. I love Thanksgiving! 

Growing up, I remember my friends being so excited for Christmas, but most of us were really just excited for Christmas BREAK! Instead, a few of my closest friends and I loved Thanksgiving. As I've grown up (some), my love for the holiday has also grown. It's such a relaxed holiday - food, football, family. Goodness knows those are my three favorite things. It truly is a day to be thankful...

And, this  year, I am more so than I have been in awhile. So, I will "give my thanks," as I have been on Facebook all month. (Bandwagon, I know, but this year, it's been so very appropriate for me.)

Just look at these two boys of mine:

How could I not be thankful for them? Sure, there are days they turn my calm life in to a tornado, but... wait? Calm life? Please. 'Tis never calm around here. Ha!

Now, don't get me wrong, every year we get our pictures taken and every year I say how much more I love these pictures than the last ones. But, this year is different for me. For some reason, I feel very emotional when I look at our photo shoot. Is it because they look so much older this year as compared to last? Is it because 2012 has been a challenging year for their health - more so than previous years? 

Honestly, I don't know. I do know that they are what I am thankful for!

Well, them and this guy right here:

Hard to believe we've been married 8 years! Cliché as it is, I truly am lucky.

So, yes, Thanksgiving is my favorite holiday, and tomorrow I will be smiling thinking about how far we've come just this year. How tough my little Grado is and how caring my not-so-little Landen is. How lucky I am to be the mother of these two boys. How happy I am that Phil makes me laugh and truly calms me down. How blessed I am to be surrounded by friends and family who love us, support us, and think of us often.

And, on Tuesday, when Thanksgiving has passed, I will still be smiling as we walk into our appointment with Graden's Pulmonologist, knowing that whatever he says, we can handle.

Enjoy your Thanksgiving!

Febreeze, Sneezes, and Stomach Bugs...

...Oh my!

Who doesn't love the small of vomit? 

Ew, no one! Lucky for me, that's what my house has smelled like for two days. 

Thankfully, though, this stomach bug doesn't seem to be the flu. It's a quick "puke and move on"... Except for Grado. He has a runny nose, and we all know that makes any stomach bug worse. It hurts to throw up, because your throat is sore. It hurts to cry, because your nose gets stuffed up even more. And, it hurts to eat, because your stomach is disgusting. 

So goes my day... G is resting on the couch, and has been for hours, while watching cartoons and staring at the toast I'm trying to get him to eat. Poor guy is terrified, though. He's like his Momma and hates throwing up. 

Through his sneezes and stomach bug, I think I've sprayed half a bottle of Febreeze in the past two days. I've used about 287 Lysol wipes, too. 

At least I'm home today. Homework and grading, with a quick game of "Go Fish" tossed in... sounds lovely. :)

Answering questions...

I am amazed at how many times I can be asked, "How is G doing?" 

Please do not take that as annoyance; rather, I am humbled. Appreciative. Loved. 

I smile thinking about how many people pray for, think of, talk with, read, and ask about Grado. Your support, encouragement, love, prayers, thoughts do not go unnoticed. 

During our "waiting game," I have been asked at least once a day - literally - how our little stinker is doing, feeling, holding up. 

Truth is - right now, he is better than his Mom. :)

I'll give you this update:  

Graden has been having good days.

Luckily, we have been busy around here and days are flying by... So, the wait hasn't been as bad as I thought it would be. We have our appointment in a few weeks (after Thanksgiving), unless we get a call first. 

In the meantime, thank you. Thank you for your concern for my son. I cannot describe what it means to me, to him, to our family.

I should be...

As I sit in "my spot," as the boys like to call it, across from my sweet Grado, I can't see his face, but it doesn't matter... because, instead, I am fixated on the rise and fall of his chest. Taking naps have become habit for him again, these past few weeks, and I am thankful for his moments of peace. These moments, for him, are his breaks. He is pain-free, restful, and so very innocent. He is "comfy" with his "friends" - Monkey and Mater. There's even a puppy in there somewhere. 

I know I should be grading, reading, responding to email, posting on discussion boards, but I suppose I need the break, too. Instead of napping, though, I watch him and reminisce a bit at how far he's come. Not that I need to take the time to truly remember, because I never forget. But, it's more in awe of his growth, both physically and mentally. His poor emotions are strained right now, but he is still a fighter. He knows what needs to be done and has taken to reminding us about his medicines. 

Just today, in fact, his teacher told me he mentioned his "heart was beating fast," which is an indicator of his body working hard to breathe. So, she let him take a break. Before I forget (and this is long overdue), let me tell you how amazing his teacher is -- she watches him a bit extra because she worries about him as much as I do, as did his teacher last year! Quite honestly, I probably would have pulled him from preschool if he had been with anyone else. If you're looking for preschools, Mrs. K (and the rest of the staff) is truly amazing... not just at teaching, but being a friend to me and being so supportive of "her kids!" The point, though, is that Graden is growing up before my very eyes. 

Sure, all kids grow up, and I've watched Landen do the same. What I realized today, during my break, is that both my boys have grown up with a bit more responsibility than many other kids. Landen wakes up every morning, gets dressed, eats breakfast, brushes his teeth, and does his inhaler. He tells me when he needs extra meds... He has learned how to take good care of himself. (Of course, not alone, but still... you get my point.)

Graden is beginning to do the same. This realization is crucial to me today. I am proud of him. I've said it a thousand times. He is a fighter, but now, I know, he is learning to be a smart fighter. A responsible little boy. A responsible, funny, little boy. :) His teacher told me yesterday he was talking to the markers while he was drawing, saying, "Come to Papa." Bah! That G. I'm telling you. He is just something...

A sweet, innocent, little guy, who melts his Momma's heart, especially while he sleeps and Momma knows he's comfy. So, yes, I should be grading, working, anything but staring at him. But, today, I can't help it. 

Scared.

Yep, you read that right:  scared. I am scared.

If you missed it, my last post was a month ago - almost exactly. Graden had pneumonia. During this time, we have been vigilant with breathing treatments, antibiotics, oral steroids. We have visited the doctor for a few x-rays, several check-ins, and even a flu shot. Today, was supposed to be one of those "follow-ups." And, honestly, I thought he was getting better. 

Graden has had a good week. He is eating again (always a good sign for him!), he is laughing, playing, and having great days at school, and (most importantly for me) his emotions have been back on track. Sleeping well? Check. Coughing less? Check. Fever-free? Yes, thank goodness. Despite all this, I knew he wasn't completely better. I thought he was on the uphill climb, though. At our visit today, I'm not sure I expected her to say he was "in the clear," but I certainly didn't expect her to sound as discouraged as I felt. 

We were her first appointment after the lunch break - always a great time to go, in my opinion. She came right in and teased Graden as she always does. I love this about her... comforting and truly caring about Grado. But, as she listened through her stethoscope, I knew she wasn't happy. She was quiet. She's never quiet. She usually makes a comment immediately... a "oh, Graden" or "much better" or "okay, we can work with this"... something. Not today. 

Today, there was nothing. 

I could see it in her eyes. Her gestures. The way she listened intently and grabbed his chart and her chair before speaking. While she studied (or maybe searched for the right words), I - impatiently - asked "how bad?"

She informed me that Graden's lungs are still inflamed; he is not moving air through his lungs as easily as he should be and is working hard to breathe. Of course, I knew he was coughing and was still getting "worked up" if he played too hard, but I can't believe I missed this. As quickly as the guilt came, the questions immediately followed... "What does that mean?" "What are we going to do?" 

Basically, she told me, we have done all we can do on our own. We've done all the medicines, all the breathing treatments, the x-rays... it's time to visit our Pulmonologist. He is great; he is one of the best. I get that. I appreciate that. But, I don't want that. 

Okay, I lied. I do want to see him. I want Graden to be better, but I hate - and that's not used lightly - I HATE watching Graden fight. Sure, as his mom, I'm proud to know what he has overcome. I'm thankful he is here. I know it could be worse. I get all of that. But, damn it! This kid needs a break. If it isn't his brain, it's his lungs -- arguably two of your most important organs. He has spent all five of his years fighting to be healthy...

We talked a bit more before I left the office; I think I was in shock. I kept asking questions even though she couldn't really answer them. Luckily, she knows I'm normally quite "put together." I wanted to know what the Pulmonologist would do that she couldn't. I wanted to know what was causing the "inflamed lungs." I wanted to know why his pulse ox was lower than it had been in awhile... there were so many questions to ask. 

The problem? There are no answers yet. There could be several things causing his inflammation, all of which are (at this point) serious and scary, which is why we are off to see the Pulmonologist; he can dig deeper and more thoroughly, and I know that. I'm just...

scared. Very scared.

You may not realize, but the last time Graden worked to hard to breathe, his body got too tired, and he quit... he stopped breathing all together. 

Sure, he has grown a lot since then. But, that was where my mind instantly took me. So, I'm scared. I'm impatient. I'm worried. I'm sad... all for my sweet, ornery little Grado, who I know is much tougher than his Momma -- thankfully.

Momma knows best. Period.

We went back to the doctor this morning, and my fears were confirmed:

Graden has pneumonia.

And, because so many feel strongly that the two are directly related, I am a good mom, damn it. 

Yes, I understand that it may seem as though he is "sick" often, but it's not as consistent as it seems. Look back. The problem is that when he is sick, he is sick with something horrible... 

It's a joke (not really funny, but it eases tension) at the doctor's office that my boys "go big or stay home." 

I honestly cannot help that Graden gets sick. I've tried. Don't you think if I could, I would prevent it? Short of keeping him in a plastic bubble, which is just not possible or I would. Hell, even in that bubble he would still have his brain defects. 

So why do other people feel the need to question me as a parent? Maybe I post too much on Facebook? I do status updates, because I honestly get so many texts, emails, or calls that it's easier to update the status than it is to reply to everyone. And, I want to... I want people to know what's going on, because I have to cancel plans, miss class, or not be as good of a friend as I want to be. And, maybe because I need other people to help send positive thoughts or prayers, or whatever, because maybe... just maybe I'm too tired to do it myself. 

Why do I even feel like I have to explain myself? I suppose it's a justification that helps me prove to myself that I am doing the right things by my son... I don't know if many can comprehend how hard I work at taking care of G. It fills my life with constant worry, stress... it's emotionally and physically draining, and it's frickin' scary. Just one example... If you've never seen a seizure, I hope you never do, and I sure as heck hope it's not your child if you do see one... 

I know that when my friends are going through something, I try to offer things that have worked for me (or for my kids), and for many, moms especially, that is a way to try to help. It's like a maternal instinct. I get that. I have many friends that do that, and I love it. I appreciate it. I do. What hurts are the questions that immediately question my ability or intention... "Is he eating healthy? What are you feeding him?" "Is your house clean? I heard too much dust is bad for kids." "Do you let him play outside in the rain or this damp weather? It's horrible for kids; they can catch colds."

Heaven forbid he catches a cold! The kid can handle a cold. Don't you know what he's been through already? A runny nose does not phase Graden. Sorry, but it doesn't. Shoot, this pneumonia is barely phasing him... I practically have to sit on him to get him to rest. 

I mean, come on! Have you seen Grado? He doesn't miss a meal. He eats fruits, veggies, and drinks plenty of water. He rests when he needs to and is one hell of a tough little guy... if you only knew his entire life's history - his four 1/2 years of overcoming serious obstacles - you would know he's pretty damn tough. 

So, yes, I am a good mom. I don't wait around for things to get worse; I got straight into the doctor when I noticed his difficulty breathing. I know how serious fever spikes can be for his other health issues. I'm watching him (literally) around the clock. And, I always, always, ALWAYS put him first, which isn't always as easy I would like... but tough shit. I'm a mom. I'm HIS mom, and I'm a damn good one, too. 

And, so, we meet again...

... Pneumonia. 

Why must you pick my boys to attack? Graden has other things to worry about; he doesn't have time for you. You left him alone for so long; I thought we had moved on...

The fever alone is enough to worry me. The spike and drop and constant change in his temperature could potentially cause another seizure, which starts an entirely new round of worries...

He can barely breathe. His cough hurts his chest. He doesn't want to eat, and he isn't sleeping well.

I hate feeling helpless. The on-call doctor complimented me on "knowing to get him in right away" -- clearly she doesn't know I've become a sort of expert on my boys. She said we caught it early, which I know is good, so I'll keep telling myself we are on top of it. We know what needs to be done in the next few days, and we've done it before, which is why we're at home and not at the hospital now. 

I still just can't stop worrying about his fevers. 

This is the first time he's been sick since he's been diagnosed with his malformation and heterotopia. I feel like I'm just staring at him. He keeps telling me he's okay; I ask him about every three minutes how he's doing. 

Today and tomorrow will be all about G; let's hope we start to see an improvement. I really, really don't want to have to take him to the hospital; more importantly, I don't want him to have to stay in the hospital... again.

Check yo' self.

That's right: check yo' self. Stop. Collaborate and listen. 
Okay, kidding... but seriously. Stop, listen, and reflect. 

Have you considered your priorities lately? 

I have. And, it's not easy. 

For example: my blog. It's more important to me than many may realize, and yet, I haven't written a post for over a month! Why is that? It's not that I don't have anything to say -- we all know I do. It's definitely not that I am not grateful for Graden's good news and now I've moved on -- we know that isn't true. Every day that goes by I count my blessings. I ask Graden how he's feeling. And, I never, ever forget how far he (and we) have come.

This week I heard several horrible stories. First, one of my sister's friends from childhood lost her unborn child the exact same way a close friend of mine lost her unborn son over a year ago. No woman should have to experience delivering an unborn child. I can't pretend I know what it truly feels like, but imagining it is horrific, and watching a friend struggle with the emotional and physical challenges that follow such an obstacle gives me enough details to know it just isn't fair. No parent should ever have to experience losing a child, and yet, it happens -- more often than we realize. Is it better to lose a child before you even got to know him or her... who can say? Not me. A loss is a loss; it hurts either way when your child - no matter the age - is not with you. 

Second, this morning actually, I received an email from a dear friend requesting we pray for her sister's husband who was just diagnosed with an incurable cancer and grim chance. You should read the blog she just started; their journey is just beginning and already she has gained strength. She is inspiring.

This is when I stopped. Reflected, and checked myself. I cried after receiving E's email this morning and quickly replied with a "let me know if I can help," because, honestly, what else can I do? It's been years since I've seen her sister, but I still hurt for her. It's only been a few months since I've seen my sister's friend, all pregnant and ready to have her sweet baby girl, but I still hurt for her. It's been over a year since my friend lost her unborn son, and I still think of him often. My heart has been heavy since I heard the news. I was overcome with my inability to 'control' another situation; I needed to help. But how?

What do you say? What do you do? Will anything make it better? Questions began snapping in my head like lightening... 

And, then it hit me: guilt. A horrible sense of guilt. Here I have been worrying and complaining and fighting through Graden's journey, while others fight a different fight... a more challenging fight than we've experienced. It made me think about how long it had been since I had posted on my blog -- as if I had "gotten over" Graden's illness just because we got some good news. But, that isn't true... It will never be true. It's there. Every single day.

What bothered me even more was thinking about why someone else lost their child and mine got to hear good news. Isn't that a horrible thought? Honestly, though, I can't help it. "Everything happens for a reason" just doesn't seem appropriate when someone is diagnosed with cancer or loses a child. Typically, I believe that everything does truly happen for a reason, but there are days... No matter how grateful I am, I can't get past feeling like it isn't fair to so many others. 

When you don't hear from me, it doesn't mean that I don't have anything to say. Some days, the opposite is true -- I have so much to say, but I don't know where to start. Today, though, I wanted to share my most personal feelings... guilt for having a child fight and make it. It's never easy; no one's journey is... I know that. Our experiences make me appreciate what time we have together more and more. I hope you feel that, and if you don't, I ask that you take a minute to truly read the words I'm typing...

And, so, here I am sitting next to my Grado, who is home sick today, watching a movie, and appreciating that we have this lazy time together where he can just "be" here. And, it is with a heavy heart that I ask you to read my friend's brother-in-law's story. Stop. Listen to others - truly listen. Reflect. Love and appreciate. Realign your priorities today and check yo' self. :)

We made it!

We made it! Yesterday, we went to Riley's Children's Hospital to visit our new Pediatric Neurosurgeon, Dr. Laurie Ackerman, who specializes in Chiari Malformations, among other brain abnormalities and neurological issues.

The drive down was hectic - to say the least. First off, if you haven't been to Indy via I-69 South in awhile, be prepared to see slowed traffic, random (empty) construction zones, and several State Troopers along the way. Can you see the foreshadowing going on here? Yes, you guessed it, Phil got a ticket. Not just any ol' speeding ticket. No... He had to go real big and get a ticket "in a construction zone" -- which is about double the normal cost. These guys were sneaky. Three Troopers - on motorcycles no less - were clocking drivers right before the zone began (although the sign was posted back just far enough that we were IN the zone). We saw about 6 other drivers get pulled over in the time we were in their "sweet spot." Phil wasn't speeding (72 in a 70), but because of the construction zone sign, he was (72 in a 55)! $416.50 later, we were back on our way. 

When we finally made it to Riley's campus, we were surprised with more construction, which the registering nurse who scheduled (and confirmed!) my appointment failed to mention. On top of that, we found out later, we were using a *seriously* outdated map of the campus, which included buildings and streets that were completely renamed. It was neat. (Sarcasm.) Once we realized we had about 10 minutes to make our appointment, we picked a parking garage and started hiking. Luckily, we picked the closest garage, and this is where our luck started turning! 

Inside Riley's Children's Hospital is beauty. I'm not sure what I expected, I mean it is a Children's Hospital, but I didn't expect what I saw. First of all, every SINGLE person we spoke to, no matter their job, was so pleasant and kid-friendly. Although I felt like vomiting on each of them, their smiles began to ease my nerves. My second, pleasant surprise was the actual campus. Their decorations, their set-up, their seating... all of it was just pretty. I know it sounds so silly, but I think of "hospital," and typically, I think "drab." Let me say here, though, that Lutheran's Children's Hospital is nice, but this was just... different. Graden was holding Phil's hand, walking slowly, eyes darting everywhere... taking it all in. And, while I never "enjoy" going to a hospital, I somehow felt "okay" with it.

Upon arriving at our "desk," we registered Graden, which was a much quicker process than we've had in the past (anywhere!) and took our seats. We were right on time, and we assumed (you know what they say about assuming) that we would have to wait awhile. No! Within minutes, we were asked to come back by a nurse, who was clearly experienced with children. She managed to talk directly with Graden while addressing Phil and me, too. She conducted the typical "check-in procedures" -- weight, height, basic health questions. Throughout all her questioning, she kept Graden occupied with conversation -- basketball, school, his big, special brain. :) Then, she took us to "our room." 

Graden was smiling, playing, without a care in the world. As I watched him wait for the doctor, I realized he wasn't "waiting" the same way I was. In fact, I'm pretty sure he wasn't waiting... He was "living." It is odd that it took me this trip, this office, this appointment to realize that he is already "living," and I couldn't help but wonder why I felt like I wasn't as good at living as he was.

When the doctor came in, after a very short wait, we immediately felt tense, which I think she sensed. She introduced herself, calmed us, spoke with Graden, and completed his "check-up," again, all while addressing us. Phil and I didn't even look at each other. It was a silent agreement to listen intently and wait for her words, which could change our lives. Is that an exaggeration? No. Maybe. I don't know, but I certainly felt that way at the time. 

And, she did change our lives. She gave us the most thorough explanation, reading materials, a picture, and all the information we needed. She explained the surgery - even though she doesn't recommend it at this point! She went through the pros and cons, the risks and benefits, and the symptoms we need to watch for as Graden grows. She gave us the range of possibilities and was brutally honest as we asked all our questions. Her only advise -- No Boxing. :) We will address football later.

Really? That's it? It sounded so easy; for a minute, I thought there would be more. 

There wasn't.

Because of Graden's minimal symptoms, she didn't want to do surgery... the risks do not outweigh the benefits at this point, and we agree. Could this change? Sure. Is it likely? We just do not know. So, we wait. We watch. We live. 

She reminded us what to look for and what we may have to work on, even though I'm certain that Phil and I won't ever forget. And, she repeated herself... no surgery... doing okay... no concerns at this point... strong... healthy otherwise... no relation to/does not cause seizures... not affected by seizures... no surgery... growing well... only follow-ups needed unless something changes. Of course, he still has another type of brain defect, but that seems to be under control and has no bearing on his Chiari Malformation. Whew!

This is when Phil and I finally looked at each other. Relieved.

Then it was over, and Graden reminded us it was lunch time. So, off to McD's we went. Grado's choice, of course. :) 

He napped the entire, slow trip home. Phil and I, again silently, decided we could finally live. Live one day at a time... not just say it, but really, truly do it! 

We were reminded (not that we need much reminding) that we are so thankful for Graden. He keeps our life interesting; he is such a stinker, but his humor and personality remind us that life is crazy and fun! So, here's to living!

--

We finally made it through an appointment where we received all good news; unless, of course, you count the doctor's advise of "no boxing" as bad news. Ha!

We made it. We made it!

2 Tough Boys, 1 Tired Momma, and A Little Bit of "Catch-Up"...

Landen asked me this morning why Daddy had to work every single day. I told him that was how we got money for groceries, birthday presents, and clothes. Landen, after thinking for a minute, replied, "Well, I don't like clothes, so he can stay home more now." :) Such a smarty pants! Little does he know that Daddy also works to pay for his house, the utilities, and loads of doctors' bills, but I left the boring stuff out. :)


Last week was a whirlwind of activities! The overlap of sports has begun. Landen is playing Wildcat (on the days it is under 100 degrees!), and Graden has started Basketball through Parks & Rec. On top of that, we had VBS and were constantly coming and going. Then, on Friday, we got to move one of my very best friends into her new home! Needless to say, we were with her and her awesome family the entire weekend... it was worth every minute away from our home to help get them settled. It's been like six years - I think - since they lived in Fort Wayne... it's exciting having them so close again -- for selfish reasons, of course. :)


Yesterday, Landen woke up all stuffed up. I'm not sure if it's because of the heat, allergies, or a real cold. His body is yelling at him, though. He told twice last week that he needed his medicine -- AND A NAP! He never, and I mean NEVER, asks for his medicine, let alone a nap! So, when he told me he didn't feel good yesterday, I worried a bit. He laid around all day yesterday and watched movies. Today, he feels about the same. I gave him his medicine, and decided to keep him inside again today... he just can't breathe well in this heat. At his check-up last week, his Allergist/Asthma Doc said it was time to start allergy shots... we have tried everything else, and he keeps gaining allergies. So, we will be starting these in a week or so. For now, we wait for their call.


Speaking of calls -- yesterday, we got a call from Riley's Children's Hospital. We will see a Pediatric Neurosurgeon on AUGUST 1st! Can you believe that? We thought we would have to wait much longer to be seen and are so thankful for the appointment. I have been "dealing with" Graden's last appointment with more ease than I had anticipated; however, with the new date set, even though I know it's a consultation, I feel a bit of that ease sliding away, being replaced by worry. Try as I might, I know the next two weeks will be trying on me. Thankfully, I am busy with projects, school planning, and the boys. :)


Keep cool out there!

It's so hot outside...

Playing Trucks!

Graden's Friendship Bracelet -- Attempt #1

 So, we're having fun on the inside!

Landen making Friendship Bracelets!

Graden's 2nd try... beads were easier! :)

Mommy's bracelet for Landen!

CHRISTMAS IN JULY! Yes, that's Rudolph on TV. :)