Time Heals all Wounds

When I see

THIS...

It's hard to remember THIS...

                                                              

                 It's been nearly 4 months since my angel-bear underwent his Hemispherotomy and if you had told me then about the way he'd be now, I wouldn't have believed you...in fact the Doctors did tell us...and I didn't believe it. I mean, I know I described to people the results we were told we'd see and spoke confidently about it, but following surgery, I must confess, I lost faith...at least in the time frame of these great results.

              

Yet, here is my son: smiling,

laughing

holding his own bottle

talking baby jabber all day

riding in the shopping cart

paying attention at Story time 

getting excited because Daddy's home

and rocking new teeth every other day, it seems. 

               When I see all these really amazing things he's doing, I just forget about the past. I forget he ever had seizures. I forget we spent weeks in the hospital, and I forget that he had his head sliced open and that half of his little brain is permanently snoozing. None of that feels real any more.

                I was going through old pictures of the dark days and I felt nothing. The images that once terrified me had absolutely no affect on my emotional state because as the sad little broken baby on the screen stared up at me, the hilarious, happy, drooling baby on the floor looked up at me as well...and he let out a snorting giggle that told me: "Mom, I'm cool. Everything is chill here, now, so we don't have to feel sad. Let's party! Also, I just pooped."

               So I'm glad I did follow through and start this blog shortly after the badness, because if I tried to write descriptively about my feelings then, now, it would be feeble and dimensionless at best. I can't remember how it felt then, and I don't wish to. I am so enormously blissful with my sweet baby man to play with every day. He is a champ, a superstar, an amazing, resilient, and silly guy and I'm so proud of the endurance he's shown as well as the hard work he's done to regain what he'd lost.

             Rowan Edward, you are my everything and everything you do astounds me. You can do ANYTHING...and with only half a brain! Thank you for being my baby, you wonderful boy. I love you so.

(p.s. Row's on the floor at this very moment...and he just farted...comedy is all about...timing)

Merrily we Roll Along...

Well, it has been two months since Mr. Row was sent home from the hospital after his surgery and he is doing so well!

He has long since recovered from the actual procedure, you can barely even see his scar, now, so hidden is it by ever thickening blond hair. And his physical and occupational therapies are yielding great results. He sees each of his therapists once per week and they're surprised each time with the progress he's making week-to-week.

He is, of course, still markedly behind on developmental milestones like sitting, crawling, and grabbing toys/food, but he is gaining so much ground all the time.

I'd say our most significant change is in his ability to pay attention to what's going on around him. During his seizure days Row didn't seem to really "see" us. I mean, there was nothing wrong with his eyes, but he just seemed to look through us and be oblivious to things around him.

Now he is interested in so much. He loves looking at the graphic art and dark framed photos on the walls. Sunshine from the windows keeps him captivated. He's begun to like singing songs with Mommy and reading books with Daddy. But Row's favorite activity, by far, is BOUNCING in his little "Johnny Jump up" device. Once we load him in that puppy he will launch himself skyward and laugh like a mad man for an hour or more. Sometimes his laughs are so gasping and rough I worry he's choking, but no...it's just hilarious. Bouncing is hilarious!!!

It's just so incredible to see him filled with pure, unbridled delight.

When we were in the hospital the first time, without a diagnosis, just frightened and hearing horrible suppositions that would have meant leaving Row heavily handicapped or maybe even not surviving infancy. Remembering that fear and uncertainty while looking at him bouncing creates such a disconnect in my mind that I can...hardly...uh...find...erm....words...

Rowan is incredible. He works so hard every day to make up the skills he lost and to carry on learning new ones. He is full of cuddles, smiles, and laughs and he uses them to fill Mommy and Daddy with more joy and gratitude than they ever thought possible.

He is my amazing wee man.




 
 

The boy I've Lost and the one I'll gain

                    Another emotion you wouldn't immediately expect to feel when your child's life and health are being saved is grief. I found myself not only fearing Row's death but part of me felt like, whatever the outcome, my son would be gone. The son I had known for the past 6 months (15, really) would be gone and replaced with a stranger who wouldn't like the games, songs, and snuggle positions that my first son did. I worried that I would take my "normal" child to the hospital and trade him in for a "special needs" child. I feared that I would no longer know how to care for this stranger and that I might even have trouble loving him the way I loved "my son."

That is and was a horrible thing to think, that anything, ANYTHING, could diminish my love for my baby. Yet there the thought sat, like a rock in my heart. And I grieved. I grieved for the little boy I had known and adored, just in case he truly would be lost to me. I grieved as I had when he first displayed his illness, and I had to lament the loss of the son I 'd assumed we'd have.

Well I accepted Row as he was then, and I have done it again now.

He is my son. He is perfection.

The rest is irrelevant.

                                                  *                *               *              *

Fortunately, my misgivings this time around seem to have been fairly unfounded, since now, from the other side of this drama, Rowan seems to be much more like his old self than I'd expected, and once he's fully healed and has had enough therapy to regain his mobility, he will be  himself.

This is a great relief, and though the years ahead will require a lot of work (as if "normal" parenthood doesn't, right?) and Row will be behind for a while, eventually he will level out and lead a normal life. He'll get to live because of his scar.

He will be The Boy Who Lived.

Anticipation & Dread - *Caution: this post will give you sad feelings*

There is little worse in life than time, when that time is spent in fearful anticipation of some dreaded event. Were you forced into the very same event with no warning it's almost certain that you could maintain your composure and ride your adrenaline until the ordeal has passed, but with the burden of preparation you have the opportunity to imagine. You imagine the worst outcome possible, you cannot help it.

I spent the few days leading up to Row's surgery feeling an anxious frenzy growing. I was trying to organize things in the new house (having been in it only about a week) as well as plan and pack for what we knew would be a long hospital stay, and I felt a ticking within myself. Time was growing short and I wasn't ready...but not ready for what?

I had made my lists and packed efficiently. I'd packed plenty of clothes and distractions for the trip, everything we'd need. My house was well organized, for the most part, and clean. We had been prepared for how the procedure would go and how his recovery would play out. We knew what skills he would permanently and temporarily lose and about how soon he'd be back to "normal".

So what was I  not prepared for?

I was not prepared to lose my child. To say goodbye to him. To kiss him for the last time. Because, odious as the thought is, it was entirely possible that this operation could have taken his life; the chances were small, but by no means non-existent. This procedure is rare, and although Row's surgeon is definitely the guy you want for it, he's only done it about 50 times, so, compared to, you know, an appendectomy, it's pretty rare.

So, in my preparation, I had to try and brace myself for death...for my baby's death.

I know that's devastating to read, and I'm sorry if I've caused a lump to rise into your throat. Believe me it is nothing to the one a was forced to suppress (yet often succumbed to) for days and days.

You see I HAD TO busy myself with lists and preparation just to save myself from dwelling on what was to come, because if I relented and let myself truly think on what I was fearing, I would have been lost and useless and would have failed to do what my son needed of me. I needed to be strong and pragmatic, although all I wanted to do was strap Row to my back and run away, to continue ignoring the problem into eternity.

I, however, did no such thing. I stayed and worked and waited, and did my best to joke myself away from the truth, since thinking too seriously about it was pointless. The decision had already been made; we were simply awaiting the follow through.

Now on the day of the procedure, my dear Facebook friends rose to my challenge to distract me during our eight hours of tense waiting. You sent me memes, videos, links to hilarious things, riddles, games, and amusing anecdotes...anything to keep my mind in the clouds and not in that small, (though, thankfully, private) waiting room. I thank you all immensely for your service, because each time I allowed a momentary lapse in my distraction and I envisioned what was happening to my baby's head, I nearly vomited. My stomach would drop, and I'd get a horrible pain right at my C-Section incision (creepy, right?).

Now I have to explain another element that contributed to my sense of dread. The possibility that we were making a mistake. Now with Row's condition, Epilepsy that cannot be cured medically, YES, this surgery IS his best chance to lead a normal life and develop appropriately. However, for over two months prior to surgery we had seen nary a seizure at all. The very strong medication he'd been on (Vigabatrin) had given us some real seizure relief. This medication, though, cannot be used long term because it has some very heavy side effects after a while, so it was by no means a permanent solution, and in actuality he was still having seizures in his brain, they just weren't manifesting physically, so they weren't inhibiting his daily life.

So, picture if you will, a sweet baby who appears not to be having any seizures and has quickly caught up on developmental milestones he'd previously been lagging on and he's happy as a little clam and cute as can be. Then you suddenly take him to a hospital, have his skull opened, half of his brain detached, and he is left incapable of moving his right limbs, unable to open his eyes or breath on his own, and looks so bruised and swollen that his own Mommy would have trouble picking him out of a nursery line up.

I think it's understandable, then, that said Mommy couldn't help but think: "We've made a terrible mistake. What have we done to him?"

When he was in the PICU, looking terrible and broken, I was so sick, worried we'd done him an awful disservice, destroyed his chances completely. Luckily his recovery progressed by leaps and bounds and in a few days, it wasn't so bad...but in those first days I truly was terrified that I'd allowed my child to be broken...

 (*Next Post won't be quite so sad, so stay tuned:)*

Bouncin'

Well, the time for physical fun has officially begun for Mr. Rowan. We recently got him a "Merry Muscles" doorway bouncer. HE LOVES IT!

It's, frankly, really ridiculously difficult to get him in and out of it, but it's well worth the effort because he has a blast each time. He can't get enough.

The best part about it is the head support it provides. He can sit forward in it, but he can also relax and lean his head back on it, which is perfect since he can't really hold his head up completely by himself yet. 

He is a bouncing fool, kicking like mad and spinning all over. He's happily reaching for his toys and staring up at them. His left hand is much more active than his right, but that's to be expected.

He's all smiles and laughs nowadays, and we are absolutely loving it.

                                                                                                               

Simply Smilin'

So we have now discovered one of the most majestically life-affirming things ...EVER!!!

SMILES

Suddenly, Mr. Row is expressive, emotive, adorable.

:):):):):):):):)

He has learned how to smile, and has some laughs in the making. 

If I go across the room then come upon him without warning, he sees me and can't contain himself. This is an incredible feeling, not only because it feels like he truly loves us, but because he CAN express himself. He is no longer merely a hapless, sluggy baby, resigned and numb to the events going on around him. He is responsive. 

With all the concerns about his development because of the seizures, seeing him make these wonderful faces (even the sad ones) is just empowering. It allows us to really see him, his personality. He is a real little boy, not a damaged, broken little baby that needs help. He is simply Row, my sweet, funny, wonderful guy. This is more comforting to Mommy and Daddy than I can possibly express.

He makes us proud every day.

This gives us such glorious hope for the future, and it makes the prospect of this next month we have with him (before his surgery) so appealing. We are going to have a world of fun, our calm before the storm.

This is amazing...

Next Time: Our new bouncy toy...

Guilt

      I want to take some time to discuss the gut-wrenching guilt I felt/feel regarding Row's condition. I will preface this by stating that I KNOW that there is nothing that I did or did not do, either during pregnancy or afterward, that caused this problem. I UNDERSTAND that as a fact, and I accept it as fact. Unfortunately facts are feeble when sent into battle against your own feelings. What I KNOW and what I FEEL are entirely disparate things.
      I KNOW that Row was born this way and his illness has nothing to do with his stint in my belly. I KNOW that there is nothing that Paul and I have done wrong since his birth to cause his condition. I KNOW these things.

                                 
  I, however, FEEL that I did this. I did this to my darling.
 I ate one too many cheeseburgers, had one too many coffees, pulled on too many shifts cleaning rooms at the hotel. I fell during rehearsals for ANNIE (though just to my knees, nothing affecting him). I didn't drink enough water, I didn't get enough exercise, I didn't eat enough vegetables. I walked through clouds of second hand smoke too often. I didn't get my body into great condition before becoming pregnant, I didn't do my Kegels, I didn't read enough about labor and delivery. I failed to deliver him properly and had to do the last minute C-section. I hated nursing, and I never wanted to do it, it made me feel like a soggy, wet animal and I resented it...he felt this from me, he must have, and we, therefore, failed to form a true nursing bond, so we quit and switched to pumping. Then I didn't pump enough. I didn't drink enough water and pump often enough and my supply ran out, so now he has formula. Just formula.
     He is broken, his quality of life is diminished and it is entirely my doing. There is no amount of logic, reason, or empirical evidence in existence that can change my opinion on this, no matter how unreasonable I know that is. It simply is. He's been my sole responsibility since April 21st, 2012...the day he began, and it has been my job to live for him, exclusively.

    I was too selfish and cut corners to satisfy myself, as I have always done, as I will, likely, continue to do. I try every day to do right by my son but I feel like I'm just on an out of control treadmill, desperately trying to keep pace. (I hate physical exertion, so this metaphor is particularly effective for me.)
      These feelings are understandable, but unjustified. Every Doctor has assured me that there was nothing I did to cause this and nothing I could have done to prevent it. Despite the evidence, I can't help blaming myself, because admitting that it just happened at random is terrifying. If I can blame myself, find a cause, then I can avoid this in the future, I can improve, I can make it right...I can fix it. If this was a random curse of fate then I am helpless, helpless to help Row or his subsequent siblings (assuming we are able/allowed to have them, genetic tests still hold the sword of Damocles above us on that one).
     I am fortunate, because my angel has a solution in store, one that will (theoretically, and based on many success stories) give him a real life that is barely affected by these early worries at all. Many parents are not so lucky. There are too many ailments to begin listing that affect the children of the world, and my heart aches for the fears their parents endure. Rowan is lucky; he is not in pain due to his seizures and he has a solution to his problem, one that should solve everything permanently. He is happy and developing well and has a vast web of love and support. He will be fine, and so will his parents.

In time.

Two Firsts

We had two firsts today.

The first first was vomit. Today was Row's first official puke. It came quite suddenly just as we were putting him in the car...luckily we hadn't driven off yet or...yikes!

The second, and far more enjoyable first, was some amazing face time with Daddy. Little man laid in beside Dad and took some time to stare intently at him. He then proceeded to reach out, touch face. He grabbed Dad's nose, beard, mustache, shirt. Over and over and over.

This is the first time we've seen him intentionally reach for something and successfully grab it. He only used his left hand, which is, of course, his dominant side, since the left side of his brain is seizure central, but it was great! He's making some much progress, day by day!

A New Hope

For a second opinion we ventured two and half hours from home to a world class facility ranked 7th in the nation for pediatric neurology/epilepsy, where a team of superb doctors caucused to discuss Mr. Row.

The unanimous decision from the team was that a complete hemispherotomy would be the best option for the sir. This procedure sounds, and is, scary, but will ultimately give him the greatest chance for a normal life and normal development.

His surgery will happen this summer, probably in July.

So now we're up to date...

Hemispherotomy Info

Begin the Beguine (part two)

We returned to the Children's Hospital on February 28th. We stayed for 15 days. During those two weeks Row had several more EEGs, a lumbar puncture, to test his spinal fluid for various genetic conditions, blood tests up the wazzoo and he went on and off of 6 medications, all of which had the potential to make him sleepy, listless, dizzy, and/or nauseous...in any combination. Despite all the drugs being maxed out in turn, his seizures continued. My husband and I counted each of Row's seizures and log them for the doctor and nurses, this could be dozens per day; most were one second or less but they come in clusters of 5-20 (later at home that number would grow to over a hundred per day). So we counted the number of seizures and the length of each one.

The worst part of this experience we the hours and hours of wondering, googling, and crying. (P.S. don't Google "Baby Seizures", it will never be a pleasant read) Our Pediatric Neurologist, the only one in the whole hospital system, would/could not give us any definitive answers the entire time we were there. Our numerous requests for a diagnosis were answered with vague claims that none could be made without the results of all the lousy blood tests that had been sent off to who-knows-where. So we were left alone to consult Dr. Internet, no matter how much we tried not to, we were desperate for answers, even terrible ones. So we read about horrible conditions and results for little ones with seizure syndromes, and we were frankly horrified. 

So there we were, sitting in a hospital room, eating mediocre food, watching mediocre television, sleeping on deeply uncomfortable beds, wondering if these lame, feeble days were some of the last we'd be granted with our beautiful son. We didn't know if we would be dealing with a completely destructive condition that would leave him permanently incapacitated, or if he would even survive at all. No on would tell us! Near the end of our visit the doctor  mentioned that we were running out of medications to try and that if we couldn't stop the seizure with these meds then his "last ditch effort" was to put him into a 48 hour medically induced COMA to give his brain enough rest to possibly stop the seizures for that time then to wake him up on a new medication to start fresh. 

All I remember after that conversation was weeping uncontrollably. I grabbed my darling, with shaking hands, cradled him in my arms and rocked back and forth on a stiff chair sobbing and trembling, fearing that he would be taken from me forever...possibly the very next morning. 

I hardly dare to make this statement, because I do not know the feeling of losing a child, and my heart breaks for those who do, but I feel like the anticipation of losing your child must be worse, somehow.   If it's done, then it's done, and there is nothing you can do. It's over. If, however, you know (or think) it's coming, and are watching, helpless, it is pure torture. 

It's the difference between falling onto the train tracks at just the wrong moment, and being tied to them for hours before the train comes. Anticipation. Horror.

Mercifully, we chose to forgo the coma option and asked simply to max out the medications he was on and give them a bit more time to work. Which was a great idea, because after a couple days his seizures decreased enough to allow us to go home. 

So we took our meds, out lack of diagnosis, and our handsome man and went home, planning to seek a second opinion....

(*Parents out there: DO NOT feel like you have to listen to everything a doctor says. They are not gods. It is OK to seek other opinions and do your own research. Ask every question as many times as you need to. It's too important. Ultimately YOU decide what care your child gets, they can't just take your baby and carve them up without your consent, so the control truly is yours, don't be afraid to put your foot down*)

Rockin' a Spider-Man Bandaid

Begin the Beguine (part one)

           On February 16th, 2013, when Rowan was six weeks old, he suddenly had a seizure. His eyelids fluttered, his head snapped back several times in rhythm and eyes strayed fiercely to the left. These movements lasted for about 40 seconds, then ceased. His Mommy, Daddy, and Aunt Rachel all paused for a moment, a little perplexed, and before they could even voice their concerns about what had just happened, it happened again. Daddy quickly whipped out his cell in order to capture a video of Rowan's "performance" to show the doctor. After calling Row's doctor everyone began getting ready to head to the children's hospital about half an hour away, then the seizures starting to grow in strength and number; they were right on top of each other. So we drove, quickly, to the nearby emergency room instead.
           After a veritable three stooges routine from the nurses, (it took three of them to land an IV and one of them walked in with her cell phone, keys, and shades, then proceeded to touch my son's blood without washing her hands), he was finally able to be shipped over the the hospital we'd intended to go to, in an ambulance, no less.
          This is when the horror set in. Standing around that room watching needles and tubes, and bumbling women in cartoony scrub tops muddle up my sad little convulsing baby began to send me into a genuine panic attack. I was trying desperately not to sob aloud because it would lead to an uncontrollable fit, which would be counter productive. So I held strong...as well as I could, and much more so due to the presence of my best friend, who was, fortunately, paying us a weekend visit at the time.
         Then we arrived at the Children's Hospital, where we thought we'd find some answers..ha! We spent several hours in the boiling hot emergency room...waiting and waiting to be admitted. Several very young girls with various initials after the names on their name tags came in to fumblingly poke and prod my poor man with various needles and vials, all the while taking it in turn to ask us the same series of questions over and over and over. We took advantage of this frustrating time to alert our family of the situation. All of them were hopelessly far away in the distant land of Florida, which is our fault, since we chose to migrate to the midwest about two years prior, but in those first frightening hours the distance felt insurmountable.
         We were finally admitted and began a four day stay that proved to be full of a great deal of testing, blood drawings, EEGs, and MRI and having my be-diapered darling tethered to his bed by heart monitors, etc. After trying three  anti-epileptic medications we were sent away with them to await the results of said tests at home. Little did we know just how quickly we would be returning...