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!