Reflection

When Rowan Edward Norris was born at 7:22 pm, January 3rd, 2013, my world began anew. Everything I'd ever done or wanted seemed suddenly insignificant, because this tiny (or huge, at 9 lbs 12 oz) human was mine to care for, mine to protect, mine to enjoy and love. Now, all that I just said is very lovely and poetic, and also cliched. Yes I genuinely felt all the boisterous and joyous and silly, happy feelings associated with becoming a parent, but I also felt plenty of the ugly things along the way too; the things no one likes to mention in greeting cards.

For the first few weeks following his birth I felt miserable. After laboring and pushing, then needing surgery, my lazy abdomen was wrecked. I couldn't sit up without astonishing pain for over a month, and let me tell you, when an alarm clock goes off at 3 in the morning to remind you to force your baby to eat, the 90 degree jack-knife sit-up is agonizing to such a tummy. 

Yes, we had to set alarms to wake us all up to force feedings into Row. For anyone who's seen him eat now this may seem a ridiculous falsehood, but I assure you it's true. He barely made the cut-off for amount of weight you're allowed to lose and still get released from the hospital. He failed to gain weight adequately at home, so we were seeing his doctor a couple times a week the first few weeks (during which I could barely stand, and was certainly not allowed to carry him in his car seat).

We tried breast feeding from the start, but little Row just couldn't latch on well (later we'll find out why, ooo). In the hospital we tried every position with pillows and nipple shields and siphoning formula in beside my nipple to make sure he was getting enough liquid for his effort. But nothing worked well. Unfortunately Rowie also just never seemed very hungry, so he was happy enough with the low amounts he was getting, but the scale sure wasn't.  At home, it was a nightmare. We tried every position on both sides, nipple shields became a requirement to get anything at all accomplished. We finally got to where he would drink alright if the following occurred: I laid on my side (on a blanket, obviously, because dribbling and leaking was most definitely going to happen), I used my nipple shield (which is annoying to keep clean when you can't easily run back and forth to the sink, btw), and I needed a burp cloth handy for mess and my phone on hand since I was, at the time, using it to track feedings, diapers, etc. All of this needed to be in place for any hope of success, and if, once we'd begun, the latch was broken for any reason, he WOULD NOT reattach, no deal. So if he had a bad suck that was hurting me I had to deal with it, because repositioning was not an option. I knew that nursing was often difficult, but I thought there was no way it was supposed to be this hard, or how could anyone ever leave there house and feed their baby?

Needless to say there were a lot of tears shed by everyone during these weeks, and a lot of mandatory formula was consumed and sad expressed breast milk was stored and reheated. Those were unhappy times, and I can't say that I'm glad we ever encountered seizures, GOD NO! Yet I am glad that I can attribute our utter failure at nursing to the seizures, and that maybe with any future babies it might be possible to nurse successfully.

Now when a child is born, they already have a long list of expectations that they will either meet, fail to meet, or exceed. It's not really fair, but that's life. And we prepared for parenthood by assuring ourselves that we would be open and accept Row for whomever he was, and we would happily support any life choice or endeavor he made (perhaps not his plans of going to serial killer school, but mostly anything). If he wanted to be a scientist, we'd be happy, or a singer, a teacher, a truck farmer, or *sigh* even an athlete. We planned to happily sit through any game, school play, concert, science fair, math competition, or battle of the bands that came along. We would be over the moon to dance at his wedding, no matter how many states it may or may not be legal in. And we were going to give him as fair and balanced an education on religion and politics as we could and raise him to make his own decisions about his beliefs. We were eager to learn about and accept all these different elements of our beautiful son, and to love him for them.

But I wasn't prepared to accept was the chance that he might be handicapped. 

In the early days of the seizure saga, when we were desperately awaiting answers, and getting him next to no relief, there were a great many scary predictions floating around our hospital room. They didn't know if they'd ever be able to stop the seizures at all, so we didn't know if he'd even LIVE. I have to repeat that: even LIVE! Now that should have been the most frightening to me (and truly, it was) but I hate/have to admit that I was almost as frightened of the potential for him to be devistatingly handicapped. I, since childhood, have had an illogical fear of the mentally disabled (I am not proud of this, but I had a bit of a shock at a girl scout shin-dig once, and it left me a bit prejudiced, for which I am very sorry, but it's true nonetheless). So I have always had a nagging fear of having a handicapped child because I feared not knowing what to do for them, and I feared that if Row was indeed handicapped then his life would be awful (now I'm talking never-able-to-feed-yourself level handicapped, mind you). I forseaw him never learning, never developing, never being able to care for himself, and remaining a child his (and my) entire life. I saw him outliving me and Paul, but unable to go out into the world and take care of himself. I saw him becoming a burden on society, when my dream has always been to breed brilliant children who will add something to the world, not to merely survive it.

I was paralyzed with my fear of what would become of Row, of the baby I'd created. Had I created a being that would be a burden to his family and a drag on society? Or worse, had I created a baby that I would then have to bury? How could this be? I'd only been a parent for six weeks...how could I have destroyed my perfect baby's chances already?

Ah, there's the rub, "my PERFECT baby". 

Whatever our plans and visions for Row had been were gone. The imaginary baby we'd dreamed up for ourselves had disappeared into the reality of who our son actually was. It was time to accept our son the way he was and to see to his needs, whatever they were, as best we could. Our son was not flawless, but he was perfect (and anyone who's met him can tell you that that applies to the present tense too).

When Row first started seizing at 6 weeks old, (really he'd been seizing all along, we just didn't see them, they were small up til then), it was insane. We were in and out of the hospital, trying drug after drug, and I feel like I did nothing but log seizures. I had a notebook and I tallied seizures all day. On some medications they would be small clusters of 3-10 second seizures, and on others it would be clusters of 100s of blink-long seizures. I would just sit there watching him, ticking them down. We got to where we could see a batch coming, and our hearts would just drop. After a few hours of no episodes we'd start to hope that maybe this medicine is starting to really work, now we're getting somewhere. Then we'd get an episode every hour for a while and just feel hopeless. I felt with each seizure, each time he lost focus and couldn't see me anymore, I felt his little brain cells flickering out. I felt him losing the capacity for learning and growing. Each seizure was stealing another grain of his potential, and I couldn't stop it. All I could do was sit there and count, and report back to the hapless doctor. 

If there is anything worse than seeing your children suffer, it is being helpless to stop it.

After the nightmare in Columbia, where we got no answers, we fled to St. Louis, where we found the Neurology team ranked 2nd in the nation, so, score! Suddenly we had answers, almost instantly they knew what was wrong and gave us or options. It's funny, thinking back to the day Dr. Ryther told us about the surgery, how utterly terrifying it sounded, and with good reason.

What Happens During a Functional Hemispherectomy?

A functional hemispherectomy requires exposing the brain using a procedure called a craniotomy. "Crani" refers to the skull and "otomy" means "to cut into." After the patient is put to sleep (general anesthesia), the surgeon makes an incision (cut) in the scalp, removes a piece of bone and pulls back a section of the dura, the tough membrane that covers the brain. This creates a "window" in which the surgeon inserts special instruments for removing brain tissue. Surgical microscopes are utilized to give the surgeon a magnified view of the brain structures. During the procedure, the surgeon removes portions of the affected hemisphere, often taking all of the temporal lobe but leaving the frontal and parietal lobes. The surgeon also gently separates the hemispheres to access and cut the corpus callosum. After the tissue is removed, the dura and bone are fixed back into place, and the scalp is closed using stitches or staples. 

          Needless to say we were petrified at the very idea, but now, safely on the other side, I don't bat an eye. I'd say to any parent in our situation, "Say yes! Sign the paper immediately and get it done as soon as possible!" The results have been astounding, and with time they'll get even better. This kid is soaring! He is making such vast improvements, and in the beginning we thought he would seize himself to death, literally to death.

    

In the days leading up to surgery I kept trying to put it out of my mind, to ignore it. I wanted to enjoy every minute with my man (since he was then taking a stronger, though temporary, medication that was making his seizures almost nothing, and totally unnoticeable to us) and he'd been improving already as far as development and fun times go. We pretended like July 10th wasn't coming and we just carried on playing and learning. Then when I could no longer hide from it and had to start packing our bags for St. Louis I really started to fret about what we'd be told to expect as far as losses. We'd been told he would definitely lose his right field of vision in both eyes (just imagine a horse blinder on the right side of both of your eyes) and his gross motor movement in his right arm would be lost for a while then regained with therapy and his fine motor in his right hand would be lost forever. With that ringing in my ears my eyes lingered over his happy little right arm swinging at toys as he bounced and I stuck my finger into that little right hand and felt his intentional squeeze on the night before surgery. I cried a little, knowing that I'd never receive a reciprocal squeeze in that hand again, knowing I'd be buying left hand scissors and can openers for many years to come.

One last hand hold, in case the worst happens, and I never get to hold any of your hands again.

After surgery, we were, a bit unnerved, for sure, although the doctors had prepared us for all the immediate reactions and recovery time, it still caught us off-guard to see this swollen, puffy face, that didn't look remotely like Rowan, with a tap draining spinal fluid out the top of his head, and a strip of bandage covering an enormous question mark scar running from his forehead around to his ear. His little eyes were puffed shut for days, he had a breathing tube in and was making wretched rattling breaths. He couldn't even really cry because his throat was so hoarse. The worst was watching the Keystone IV teams bumbling to get an IV planted in one (or all) of his swollen little limbs. 12 attempts one night...12! It was agony and we finally had to leave the room. We ended up spending 2 weeks recovering, it would have been one, but one of his may IV sites let a little infection in and his foot was all red and swollen for a while, so we couldn't leave. The antibiotics for the foot made him vomit all the time so we couldn't even leave with the antibiotics because he couldn't keep his food down. *sigh*

Finally we were discharged on July 23rd, late at night, and Daddy came back to rescue us. We went home and tried to figure out what our new normal would be. Rowie was rockin' his baseball scar for a while, until his long lustrous blonde locks started to take over, and now his scar barely peeps out half an inch onto his forehead. That's my little boy wizard.

My dad is silly

   Nowadays, this little goofball is really growing into his own. He is feeding himself (occasionally allowing us access to his gaping maw with a spoon, but usually preferring the cram-my-entire-hand-in-my-mouth-and-maybe-get-some-food-in-too method of eating. He is developing strong opinions about a lot of things, and making them known. His therapy has been going so well from day one. His OT and PT are so proud each week of the progress he's made and are constantly needing to give us new assignments to work on. Row is eager to do things for himself and to explore and examine the world. He loves songs and books, and he loves to get attacked by any kind of tickle monster.

Yeah I sit on the couch...big deal.

Working in my office. I've gotta fire Jenson later.

No! I do NOT like it, sir.

My mom is the dog's end.

88 miles and hour, baby!

What Cheerio?

Posey Christmas, everyone.

In further news: We went for our 6 month follow up EEG (pictured above) and it was a strange experience. It was our first time really back in the hospital since surgery, and being there in the darkness, smelling that old familiar EEG glue and seeing spiky lines dance across the screen really flashed me back to the bad times, to the fear. I was on the bed with Row while he napped his way through the exam and I just thought "WOW! We've been through a hell of a lot, and he's doing so amazingly well now. I almost don't care what these results say. I feel like we've beaten this!" 

Fortunately, my feelings were right. The results came back and his healthy side showed 100% seizure freedom! Now all that remains is to wean him off of his meds (slowly, of course), and so far that's going very well.

     

Someone even had an amazing trip down to Florida for Christmas. He was a perfect traveler in the car and had a fantastic birthday party with all his Florida family and friends. We are so happy that we had a healthy and joyous little boy to share with everyone.

P.S. He likes cake.

We are so happy to have endured this harrowing first year of Row's life, and we are thrilled to know that the next one is looking so very bright!

                               Thank you, and Goodnight!

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:)*