Families Coping with Infant Stroke

I've Moved to a New Blog and Domain Name!

2011-08-17T20:34:00.000-04:00

In an attempt to make keeping up with this blog and my Catharsis blog manageable, I have moved to one, consolidated blog that will allow me to manage my blogs as well as my work with causes on behalf of children with disabilities. Please - visit my new blog, take a look around, and subscribe to the RSS feed. Thanks for your support!

http://findcatharsis.com

Track Pat for Pediatric Stroke Awareness

2011-08-11T11:38:00.000-04:00

As many of my readers know, my youngest son, Evan, suffered a stroke in utero, resulting in hemiparesis and cerebral palsy. Initially, I didn't want to make contact with other parents of stroke children, nor did I want to conduct any research on it online. I was too afraid of what I might find, too afraid that I might not be able to handle the prognosis.

After a few months had passed, however, and I had, with the help of time and a few somewhat beneficial therapy sessions, come to terms with the challenges that awaited my son, I decided to stop that introverted, self-exclusionary business and Get. Out. There.

In addition to making connections with countless stroke moms on Facebook, not to mention being invited to join a number of online groups for pediatric stroke survivors, I came across one stroke site that seemed so unique, so philanthropic, so clever: Track Pat for Pediatric Stroke Awareness, run by a fellow stroke mom at Pediatric Stroke Awareness on Facebook.

What this mom is doing - with the help of her son, Elijah, a pediatric stroke survivor - is incredible. They are spreading hope, love, and help to pediatric stroke survivors across the country and world while raising awareness for pediatric stroke in the process.

See, Pat Bearowitz and his friend, Patricia, are on a mission to visit as many pediatric stroke survivors as possible, both domestically and internationally. Not only do they reflect the challenges with which many pediatric stroke survivors must cope - for example, Pat wears an Ankle-Foot Orthotic, something Elijah must wear to help him walk - but they also offer strength and support to pediatric stroke survivors by visiting them at home, where they accompany children attending doctor appointments, therapy sessions, and family outings. Once their visit is over, which usually lasts about a week, they pack up and travel to visit the next pediatric stroke survivor, spreading their comfort everywhere they go.

Pat and Patricia's goal is to assist Elijah in bringing as much attention to pediatric stroke as there is for ailments like breast cancer, while at the same time bringing hope and comfort to as many stroke victims as possible. I encourage you to visit Track Pat for Pediatric Stroke Awareness at his blog and his Facebook page. Help this little boy and his friends, Pat and Patricia, raise awareness for this all-too-common yet under-recognized childhood affliction. Who knows? Your help may put information in the hands of an unknowing family, allowing them to catch the signs of stroke before it's too late or seek the medical attention necessary for their pediatric stroke victim.

If you enjoyed reading my piece(s), please visit me on Facebook at Families Coping with Infant Stroke and follow me on Twitter at @LauraMiri. For a more cynical side of me, check out my other blog at catharsis-laura.blogspot.com

If you enjoy reading articles by women of all walks of life, I encourage you to check out The Mode Life at www.themodelife.com.

Things My Kid Says: The Good, The Bad, and The Stuff I Hope His Kindergarten Teacher Doesn't Hear

2011-08-08T12:35:00.000-04:00

My oldest has always had the ability to melt my heart in two seconds flat. From his "I love you, Mommy!"s to his "I love my brother."s, I'm hooked. But recently, as his vocabulary and language abilities expand, I've enjoyed a deeper look into the inner workings of a toddler's mind. And it's awesome.

"They" say children learn by imitating their surroundings through play. This is true. I will catch my son recreating an outing to the physical therapist's, where my youngest goes every Wednesday. I will also catch him tucking his stuffed animals in for the night, telling each and every one to have sweet dreams. Pure magic, I tell you.

Image via WikipediaThere's also the meaning-making going on in that little brain. For example, while watching the camp fire one night, he informed his grandmother that the brightly lit ashes floating away from the fire pit were "fire crumbs." Makes perfect sense. There are cookie crumbs, and bread crumbs, and, obviously, fire crumbs. Duh.

And while watching the sunset one evening, he told us "the sun was melting." Like a candle. It was melting into the bottom of the sky. Genius.

And I bet you didn't know about all the different kind of moons that appear at night. There's the circle moon, and the "C" moon, and the broken circle moon, which I can only assume is the waxing or waning moon (I'm no astronomer, so let's just calm down with the technical jargon, all righty?).

Image via WikipediaBut then there's the reenacting that makes me cringe, that makes me stop dead in my tracks, that makes me reevaluate the way I'm approaching him. Like the time he offered his buddy at daycare a beer whilst playing at the toy kitchenette. Or the talking-to's I hear him giving his toys, saying things like, "Do you UNDERSTAND?" and, "I told you to stop DOING THAT!" And my personal favorite? The "Damn it!"s that accompany a milk spilling or toy dropping. Eek.

All in all, it's a wonder how kids make meaning out of their worlds and what they pick up from their adult role models. We wield so much power over them with our words and actions alone.

Let's just hope the kindergarten teachers of the world only hear half of what we do. Cuz I am so not looking forward to the day I have to explain that he outgrew saying "bargaTOOT" sauce at age three, but we encouraged his further use of it for its humorous value anyway.

Like this post? Visit me on Facebook at Families Coping with Infant Stroke, on Twitter at @LauraMiri, and at my other, far more cynical blog at http://catharsis-laura.blogspot.com.

Want to read posts by real women of all walks of life? Check out The Mode Life at www.themodelife.com.

From Murderers to Loss of Innocence: The Evolution of My Greatest Fears

2011-08-01T22:19:00.000-04:00

Image via WikipediaI used to be afraid of murderers. And airplane crashes. And car accidents. I would create scenarios in my head so vivid and involved, I was sure I had suffered some freaky death in a past life. I always marveled at people - especially people like my husband - who could lay their heads down one minute and float into blissful sleep the next. Why aren't they worrying about the next major earthquake taking out half the U.S.? How can they sleep knowing we are destroying the environment with our chlorofluorocarbons? The Cold War can't remain cold forever, and, by the look of them, you'd think these people have never even heard of Soviet spies.

After my second son was born, and I was thrust into therapy to deal with my guilt issues over his having had a stroke, I learned something I had probably known on some level all along: I suffered from anxiety. So that's why I white-knuckle it the entire drive up to the cabin, certain a flock (or pride, or gaggle, or herd - whatever they're called) of deer will walk directly into our path and, for no logical reason whatsoever, will stop, in the middle of the road, resulting in a gruesome combination of deer guts, fur, car parts, and my family splayed across the northbound lane of I-75.

In response to me teasing my father over his being wound so tight, he wouldn't let me do my homework until I had scrubbed every inch of my bathroom, he responded, "Yeah, well, you were weird. I couldn't think of any better punishment. What kind of kid wants to do her homework so badly, she'd clean a bathroom with a toothbrush to get it done?" This kid, apparently. I do distinctly remember being certain Earth might stop rotating on its axis if I didn't get that chemistry crap done STAT. My therapist would have pointed to that as yet another example of my anxiety and paranoia disorders and my need to Cool. My. Jets.

Once I had children, my fears changed from focusing on my demise and that of the general population to my son's untimely end. What if I accidentally drop him off the the changing table? What if he shoves so many Cheerios in his mouth, he chokes before I can do anything to stop him? What if he somehow figures out how to crawl out of his crib, maneuver the child-resistant door handle, turn on the bathroom light, fill the tub, and drown while I'm sleeping? Irrational, yes. But even though I knew this, I still contended with these fantasies nightly as they played out in such a fashion, I would win an award on daytime TV for their intricacy and dramatic effect.

Now that my oldest is three - and quite the extrovert, at that - my fears have evolved into something far more foreboding than ever before. Instead of worrying about physical harm to his person as a result of improbable accidents, I now worry about something far scarier: the corruption of his innocence. Nothing is worse than being unable to protect him from realizing the world isn't made from a dash of sunshine and a splash of rainbows, from experiencing his first disappointment, from contending with those first hurt feelings at the hands of an uncaring child or, worse, adult.

While I knew I harbored these worries, I didn't know just how deep and soul-crushing they were until this past weekend. For the first time, my precious baby boy, who is clearly not a baby anymore, went off to play with another, older kid on the campground where we were staying. Yes, he was still in my full view, and yes, I was pacing like a tweeker on a three-day bender trying to stay close yet inconspicuous, but I couldn't help daydreaming terrible things. Not his getting hit by a car or his falling down and breaking a bone. No, these terrible things would leave greater scars. These terrible things would involve his being made fun of, or mocked, or bullied. These terrible things would cut into his jovial spirit, leaving a little less of it behind. These terrible things would cause his big, loving heart to adopt a protective layer that, over the years, would become harder and harder as the discovery of what a cruel place the world can be sinks in.

When I was pregnant with my oldest, a colleague, newly knocked-up herself, asked whether or not I worried about being a parent. "No, of course not. All we can do as parents is our best and hope they turn out okay." Were she to ask me that question today, my response would be different. "Worried about parenthood? No. Being a parent is something I can control. It's the childhood part that's got me scared shitless, because that I can't control. No matter how hard I try, I can't stop them from growing up."

And that's the scariest thing of all.

If you enjoyed reading my piece(s), please visit me on Facebook at Families Coping with Infant Stroke and Catharsis by Laura and follow me on Twitter at @LauraMiri. To see my darker, more cynical side, check out my other blog at http://catharsis-laura.blogspot.com.

To see other articles like this written by women of all walks of life, visit TheModeLife at www.themodelife.com.

Wordless Wednesday Blog Hop

2011-07-20T00:39:00.000-04:00

This is my first Wordless Wednesday post. I like the idea of letting "a picture [say] a thousand words," so I thought I'd try it out. The following pictures, while ones I've already posted, are some of my favorites. They make my heart melt, my cheeks hurt from smiling, my face flush with love (and all that mushy junk). Enjoy!

Like this post? Visit me on Facebook at Families Coping with Infant Stroke, on Twitter at @LauraMiri, and at my other, far more cynical blog at http://catharsis-laura.blogspot.com.

It's the Little Things, Really

2011-07-17T23:23:00.002-04:00

Ever think about your life and become intensely overwhelmed? Not because you've got a lot of laundry to do that particular day, or because you've just noticed you're out of milk, or because the dog has pooped on your carpet yet again. I mean overwhelmed because, if you really think about it, you wonder: How did I end up here? It was just 5 or 10 or 15 years ago that I was (insert life event here).

We all seem to have these "life markers," these things we aim for, these things that, once achieved, get replaced immediately with more, seemingly equally-as-important things. If I can just get this degree.... As soon as I get tenure at my job.... Once I have kids.... While we are hustling ourselves from one "life marker" to the next, we're missing out. Missing out on a lot.

I recently had one of these moments while sitting outside at the family cottage. My kids were playing together in the kiddie pool. My husband was away on vacation. My parents had gone home. I was there, all alone, with my two small sons, my two faithful pups, the sunshine, the cool breeze off the lake, and the peacefulness that accompanies an escape from civilization. And this moment.

It stalked me. It carefully planned its move. First, it planted a feeling, a sense of nostalgia, a longing for times before. It made me think of things. Things that were long forgotten. Things that were so...so...unimportant at the time. My husband and I in our first apartment, away from family, from friends, and from all that was familiar. These were good times. I remembered. Why didn't I see it then? Why didn't I cherish those tiny moments when we had nothing, and yet we had everything? Our first house. It was perfect. Brand new. So small. Our oldest son's first home. The nursery so carefully painted and decorated with love. Our twice-annual road trips from Florida to Michigan. But those were terrible. We always complained, always had cramped legs, always had something bad to say about the roadside motels. And yet, we sang. We laughed. We explored and discovered.

This moment didn't yield. Instead, it prodded my memory until I saw beauty in everything I thought was ugly. And it persisted. It dug back even deeper, to the days when there was no husband, no job, no big responsibility. It reminded me of all that I've had, of all that I've taken for granted, of all that I've dismissed.

And in that moment, I took a look at those two precious boys, playing in that kiddie pool, and I soaked it in. I put all the "life markers" out of my head, all the thoughts of Masters degrees and college savings and vacation planning. For once, I lived in the now. And I realized. When it comes to what makes us happy, it's not achievement of those "life markers." It's the little things, really.

Like this post? Visit me on Facebook at Families Coping with Infant Stroke, on Twitter at @LauraMiri, and at my other, far more cynical blog at http://catharsis-laura.blogspot.com.

It's a blog hop! Join the Thankful Thursday Blog Hop hosted by Momma Teacher Lady at http://mommateacherlady.blogspot.com.

Not Found in a Book

2011-07-13T15:32:00.004-04:00

by guest blogger Kathy of My dishwasher's possessed!

There are not words to describe the heart-sinking feeling I had that Valentine's day morning. I held my long-awaited daughter who was just six weeks old and I knew in my bones that something was wrong.

I will never know why it was that day that it hit me, but as I was gazing at Lizzy she just was not looking at me.

I woke my husband, who from that moment on supported my mother's instinct and never once doubted me. For that I will be eternally grateful.

I scoured books looking for reassurance that she was OK. I went through each parenting and new baby book I had. When are babies supposed to be able to look at you?

My oldest did it from the day he was born. But, he was born almost two weeks past his due date, and they took Lizzy via C-section almost two weeks early. Could that be it?

I knew in my heart it wasn't.

My head started ticking off a list of reasons why I was most likely overreacting. I was tired from having a wonderful three-year-old and a newborn. I tried to calm myself with thoughts that she was just fine and that I was just looking for trouble. Obviously, I just couldn't be happy.

But again I knew--something was wrong.

That morning started a journey that has taken us to numerous specialists, five MRI's, one 48-hour-brain scan, numerous tests, so many speech, occupational and physical therapists I could start my own agency and more sleepless nights that I could ever count.

Nine years later and a slew of medical professionals from some of the best institutions in the world still can't tell us exactly what is wrong. We know there is extensive damage to her brain. They have been able to see that since her first MRI when she was just two.

We know that Lizzy's issues are most likely genetic. And, we know that it affects all aspects of her development. But, that is all we know. We have no real name for her condition. We are members in a strange club. Bigger than anyone would ever guess--the long and winding road of the undiagnosed.

The pain can still be indescribable.

But so is the joy Lizzy brings to us and all who know her.

Each milestone is that much sweeter because I know what it has taken her to accomplish it. A simple thing such as Lizzy dressing herself or brushing her own hair can make me giddy. Each time she is able to express a thought, I feel as if I get a glimpse of heaven.

Lizzy is an amazing girl, with an inspiring sense of wonder and the most contagious laugh. She loves all that is girly and pink. She is happiest when she is wearing her "everyday" tiara. And, she will drop everything if given the offer of a manicure or pedicure.

I would be lying if I said I didn't wish things were different and she had the chance for the future I wished for her during my pregnancy. But, that was selfish to begin with. Lizzy has her own path and is her own person.

I see people differently today. I now feel sorry for those that can not embrace diversity and the differences in all people. They are truly disabled.

My family has been blessed by so many amazing people that we would never have had the opportunity to know had we not been on this journey.

We have been blessed with two wonderful sons and our one beautiful princess.

If you like this post, please be sure to visit Kathy at her blog, My dishwasher's possessed! at http://mydishwasherspossessed.blogspot.com/ and to "Like" her on Facebook at My dishwasher's possessed.

Interested in being a guest blogger or know someone who is? I'm looking for people willing to share their experiences raising a child with special needs. Click on the Guest Bloggers tab above and leave a comment indicating your interest!

And For That, I Cannot Thank Them Enough

2011-07-09T18:39:00.001-04:00

Image via WikipediaAs a mother to a child who suffered a stroke in utero, I often feel alone. No one else can understand what my baby or I am going through. People - well-meaning, positive-thinking people - say it's a good thing, that my son will be better for it, that children who don't have any obstacles to overcome end up worse off. Worse, they doubt that anything is wrong with him, stating he "looks just fine," "acts just fine," "seems just fine." Those doctors don't know what they're talking about, they'll say. How can they tell? Yeah, I know, right? I want to say. Aside from the massive amount of dead brain tissue visible on the hospital scans, these doctors are basing their diagnoses on voodoo science, clearly. I want to smack these people. I want to spit at, claw, pound, pummel, and punch these people. Do not tell me it's a good thing that my son had a stroke. Do not tell me it is better for him that he has hemiparesis, a weakening of one side of the body. Do not tell me his potential cognitive impairments will make him a better person. Do not tell me the doctors don't know what they're talking about. Just don't. You don't know what to say. It's best to say nothing at all. It is people like you who make me feel truly, utterly, inescapably alone.

But these people are few and far between. There are many people who do not trivialize, but rather empathize, and, at the very least, sympathize with our circumstance. Shortly after Evan's birth, they offered up words of encouragement, of kindness, of love. Instead of negating his condition, they recognized it, told me that, yep, life had, in fact, taken a huge shit on us, but it is what it is and here's how we're going to help you get through. They sent restaurant gift certificates, made food, assembled care packages filled with activities for my toddler, shared personal experiences, and offered a shoulder to cry on. They gave us something that renews my faith in humanity, that makes my heart swell at the thought of it, that no amount of money or fame or material excess could ever match. I do not have enough soul or love or prayer in me to pay these people back. Their gift is that huge. They have no idea how forever grateful and in their debt I am for their kind words, their personal stories, their stepping up to the plate. They made getting through this ordeal possible for my family and me. All that is left is to pay it forward, which, believe me, I will do, for them, for my son, for anyone who has ever needed something to keep them from falling.

And for that, I cannot thank them enough.

Like this post? Visit me on Facebook at Families Coping with Infant Stroke, on Twitter at @LauraMiri, and at my other, far more cynical blog at http://catharsis-laura.blogspot.com.

See this and other posts by REAL women of all walks of life at TheModeLife.

Interested in being a guest blogger or know someone who is? I'm looking for people willing to share their experiences raising a child with special needs. Click on the Guest Bloggers tab above and leave a comment indicating your interest!

Mind the Soft Spots - And I'm Not Talking About the Baby's

2011-07-06T19:41:00.001-04:00

I’ve always been obsessed with my weight, even though I’ve never been the perfect amount of skinny. (Is there such a thing?) Up until high school, I was lanky. Lots of people commented on how tall I’d be when I grew up. (Cruel, really, given that I’m the shortest person in my immediate family.) Then came high school. I wasn’t ultra thin anymore. Instead, I was getting…meaty. The fact that I played varsity softball didn’t help, either. When we weren’t exercising on the field (and I’m using that term – exercising – loosely), we were in the weight room pumping iron. (Seriously. Quite a sight, I assure you.) With all that activity came an increased appetite, which led to an increased girth. So when it came time to get in my prom dress, I was disappointed to see that I was so…so…beefy. Not fat. More like muscular. Thick. And the furthest from what I wanted to be.

Add to that the infamous “freshman fifteen” everyone seems to put on that first year of college, and I was miserable. As far as body image goes, I didn’t like mine. Enter Psycho Diet number one. (Oh, yeah. It has a name.) I ate nothing but cereal in the mornings and soup and a bagel for lunch. No dinner. Too many calories. And guess what? I lost about fifteen pounds and entered sophomore year of college happier than I’d been in years.

This cycle repeated itself. A series of binge drinking, flagrant eating, and yo-yo dieting episodes did a number on my body. My weight easily fluctuated by an average of five to fifteen pounds every few months. So not healthy.

Even with all this body change, I was NOT prepared for what pregnancy brings. In addition to the sickness, tiredness, and soreness, I think one of the biggest reasons why I hated pregnancy was the weight gain. It was inescapable. I put on 60 additional pounds with my first son, and about 70 with my second. The fact that I was, literally, eating enough for two (grown adults, that is) didn’t help. Neither did the outrageous water weight gain I suffered. I felt like the Hoover both times.

After my first son was born, I was determined to get that pre-baby body back. I went on Weight Watchers, which was actually the first diet that worked for me while being somewhat healthy as well. I didn’t put anything in my mouth that didn’t fit into my plan. I walked what seemed like miles a day at work. (I was a traveling teacher, so no classroom meant carrying myself and all my materials up and down stairs after each class.) And I smoked. (Shame on me. Seriously.) I lost more weight than I had gained, ending up skinner than I’d been since I was 12. Aside from a few minor stretch marks, some additional cellulite, and a c-section scar, I felt pretty darn good.

My second time around wasn’t so successful. Not only did I gain more weight than I did the first time, but my second son was also a good pound larger than my first, which spelled big trouble for me. Major stretch marks. Cellulite visible from a mile away. Spider veins. And a hernia. A big one.

I did the whole dieting thing again, remaining ever-so-true to my Weight Watchers. But this time, I didn’t pick up smoking again. I had a longer maternity leave as well as my own classroom when I returned to work, which meant not as much walking for me. I got down to that last ten pounds, which took me twice as long as it had the first time, and I quit. That’s it, I thought. Why am I being so hard on myself? I need a break.

And you know what? I took a break. Because, for some reason, I was finally comfortable in my skin. My stretch-marked, cellulite-ridden, ten-pounds-overweight skin. Does this mean I’ve given up on being weight conscious? No. In fact, after my indiscretions this past holiday weekend, I’m planning on getting myself in order again next week. But I plan on being just that – weight conscious, not weight obsessed. Healthy. Happy. And, ironically, after all that could be considered “wrong” with it, more at peace with my body than I have been in years.

Do you find yourself weight conscious or weight obsessed? At what point in your life have you been most comfortable with you?

Like this post? Visit me on Facebook at Families Coping with Infant Stroke and on Twitter at @InfantStroke. For a more cynical side of me, visit my other blog at http://catharsis-laura.blogspot.com.

Monsters: Scary? Definitely. But I Still Love Them.

2011-06-30T18:04:00.001-04:00

"Mommy! I wanna hit myself! Hey, Mommy! MOMMY! Mommy, I'm gonna hit myself! I'm gonna HIT MYSELF, MOMMY!"

That's it. I can't take another second of this. One more time, Avery. Yell Mommy one more time and say you want to hit yourself. Do it. I dare you.

"Daddy! Daddy, I'm gonna hit myself! I wanna hit myself, Daddy! DADDY!"

Close one, kid. Too close.

My three year old is driving me crazy. CRAZY. Terrible things start running through my head. Horribly, inexplicably terrible things that I am going to do to him - or myself - if he doesn't just LOCK. IT. UP. for a while. Does this make me a terrible mother? Probably. Do I care at this point? Not in the slightest.

My grandmother, rest her soul, once said the wisest thing I've ever heard in response to my inquiry about why children have bedtimes. "It's so the adults don't kill them, sweetie." Right on, Grandma. Right. On. At the time, I didn't have any kids, so the full impact of this sage answer didn't hit me. I mean, I knew kids were annoying, yucky fingered little whiny pants whose parents couldn't control them at restaurants and the mall. But just how truly annoying, yucky fingered, and whiny they could be, I had yet to discover.

It's like they have little monsters inside them that take over without warning. Ever see that movie The Gremlins? So you have this Gizmo, this cute, furry little ball of love, and then - WHAM! - suddenly a bunch of gremlins emerge, and you're like, Wait, what? How did this happen? I thought we were having a nice conversation about Elmo's World, and the gremlins are like, GIVE ME A COOKIE!, IMA BREAK MY TOYS!, I WANNA HIT MYSELF!, and you're all, But all I did was tell you we were out of milk, and the gremlins are all, I DON'T LIKE YOU CUZ I DON'T LOVE YOU! and you find yourself in the midst of a nightmare. A nightmare. One minute, you have a sweet, curious little child whose capacity for terror is zip. Next minute, it's Lucifer incarnate standing - or actually, flailing - in your kitchen. Wha?

Several people have doled out advice for handling such meltdowns. I believe one of two things: my kids are extra Texas-Chainsaw-Massacre-ish, or said people have their heads so far up their asses they can see their esophagi.

These are just a few of my favorite - no, not things - but rather, ineffective discipline measures:

Time out. Yeah. That's the goal.
Talking. He can't hear me over the ear-piercing screams.
Washing mouth out with soap. He bites.
Spanking. Apparently, we can't do that anymore.
Taking away his toys. He follows right behind me, picking them up and throwing them into the garbage can. Huge bluff caller, he is. HUGE.
Sending him to his room. Ever wonder what a murder scene looks like?

So, I've resorted to ignoring. Still rather ineffective, as evidenced by this afternoon's "I wanna hit myself" episode, but what else is there? No, seriously. What else?

Despite the frequent appearance of gremlins, I love my occasionally annoying, yucky-fingered little whiny pants, and I wouldn't trade them for the world. A million dollars, perhaps.* But not the world. Definitely not the world.

*Kidding, of course. Sheesh.

Like this post? Visit my Facebook page at Families Coping with Infant Stroke and follow me on Twitter at @InfantStroke. Check out my other, far more cynical blog at http://catharsis-laura.blogspot.com

Wonderful Weekend of Firsts

2011-06-27T14:56:00.000-04:00

We had planned on staying home this weekend, making a trek to our friends' children's birthday party our only outing. The weather was crappy, we had laundry to do, and we were tired. Thankfully, my brother called Friday evening and convinced us to drive up to our family cottage. It will be nice Saturday, he said. Sun and not a cloud in the sky. It was already eight o'clock at night. By the time we got everything packed up (remember, we have two small kids and two dogs, so we have to pack up enough things for an army whenever we go anywhere), it would be nine or ten o'clock. We wouldn't get there until midnight or after. Finally, we decided. We'll go. What the heck. And we are so glad we did.

Avery had the most fun I've ever seen in the water. Last year and the year before, he was timid. This year, although still harboring slight fears, he was far more excited about swimming, both in the kiddie pool and in the lake. He even went for his first tubing ride behind a boat. And he had a blast!

Evan enjoyed his first outdoor relaxation at the cottage. A high chair, an awesome hat, and some toys were all that was needed to make the weekend a success.

And the birthday party was great. Chris and his friends realized that finally, every single one of them had kids. This was the first time they'd all been together with their little ones. It was a definite photo op. The kids and adults alike had so much fun seeing each other, meeting the new additions, and catching up on life.

And Avery. Oh Avery. He had his first kiss this weekend. From the sweetest little girl, who also happens to be Chris's friend's daughter. It just made my heart melt.

Once again, our spontaneity paid off. Such careful lives we live, so planned out and scheduled. It's nice when we deviate from our norm and have a memorable experience in the process.

Like this post? Visit our facebook page at Families Coping with Infant Stroke and our website at familiescopingwithinfantstroke.org!

Thankful Thursday

2011-06-23T14:21:00.002-04:00

So often, we're consumed by what's wrong. I think we need to take some time out to consume ourselves with what's right. Once a year (Thanksgiving) isn't enough. So, here is the first weekly segment of Thankful Thursday. Share something for which you are thankful this week. Try it. Bet you feel good.

Here's what I'm thankful for this week:

My sweet 3 year old. He is so kind, loving, and sensitive. His capacity for empathy, or, at the very least, sympathy, is astounding. For example, my husband doesn't feel well today, and he keeps telling him "it'll be okay" in the sweetest little voice, offering to rub Hubby's back, share his toys, and split his food. Also, while my 9 month old was having his floor time (physical therapist mandated, even while fussy), my older son told me to pick Evan up. He just needed to be cuddled. So cute. Not sure I deserve such a precious boy, but I'll take him!

For what are you thankful?

To join in on this discussion with other moms, visit the Perfect Peanuts tab above. Thanks for sharing!

Like this post? Visit our facebook page at Families Coping with Infant Stroke and our website at familiescopingwithinfantstroke.org!

Evan Turns 9 {months} Today

2011-06-21T16:06:00.002-04:00

Evan in the NICU

It's hard to believe it's been nine months since Evan was born and our world was turned upside down. Looking back, I have to say I am glad that part of my life is over (the months preceding and following his birth). It's a hard thing to say. Mothers are supposed to look back on the birth of their children with fondness, with love, and with joy. Don't get me wrong. I do feel joy when I think of Evan. He is, in fact, my miracle baby. But I never want to relive that experience and the emotions that accompany it again. Ever.

For as long as I could remember, I wanted two children. That was the magic number. My husband and I had agreed on that number before we were even married. Then came baby one, Avery, and out the window that plan went. Each stage of his growth was better than the last. From sitting up, to crawling, to self-feeding, to walking, I was in heaven. How could I not have known how extraordinary this experience would be? No one can explain it to you. You have to live it to know the feeling. So how could I, then, limit myself to just two children? This experience, this feeling, was too amazing to allow myself only one more go at it.

Then came my pregnancy with Evan. Not that my pregnancy with Avery was any walk in the park. It was, up until that point, the worst experience of my life (and I was mauled by a dog when I was six, so that's saying something). Not only did I have the nausea, swelling, and weight gain I had with Avery, but I had a diabetes scare, flaring of my chronic back condition (which, thankfully, I did not have in my first pregnancy), painful contractions, two hospital admissions prior to Evan's birth for pre-term labor and limited fetal movement, severe joint pain, and a general uneasiness I had not experienced with Avery (and trust me, being pregnant with Avery was not easy). Add to that the sheer size of Evan at birth (9 pounds, 8 ounces), and it's no wonder I had difficulty.

Evan's birth wasn't any easier. I was ecstatic that he was about to come out, partly because I couldn't wait to meet him, and partly because I couldn't stand to be pregnant one day longer. But I was also terrified. I have an unreasonable fear of pokes and prods, so you can imagine how compounded that fear was by the fact that I was about to undergo surgery while awake. I've heard from many that vaginal childbirth is unpleasant. Well, I'm here to say, a c-section ain't pretty either. At least not for me. On top of dealing with me panicking - literally, panicking - upon entering the operating room, the doctors also had a bigger problem: they couldn't get him out. They were pushing and yanking on me so hard, I couldn't breathe. Seriously. Could. Not. Breathe. After many failed attempts, they resorted to vacuum extraction. (For a c-section. Ever heard of such a thing? I hadn't, that 's for sure). And thus, the nightmare began (see My Story for details).

Evan and his Godmother, Mary

It's no surprise, then, that I think I'll stick to my magic number. I can't say I'm not disappointed. I would have loved to have that pitter patter of many more little feet in my house (cliche, maybe, but definitely true). I won't say never. But for now, I'm right where I want to be. Finally.

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Kids Say the Darndest Things!

2011-06-19T00:59:00.000-04:00

Source: http://collectpeanuts.com/wp/books-media/other-schulz-works/illustrations/

Yesterday, my husband said, "Damn it!" And Avery said...? That's right! Today, while trying to put on his slippers, Avery said, "Mommy, I just can't get them, honey." I asked him if he had, in fact, just called me "honey." Yep. He had. Then, while leaving to run some errands with my husband, he shouted, "I love you, sweetie!" from the garage. Wonder where he gets all this from?

Obviously, our children are a reflection of us. Nothing makes us more introspective than hearing ourselves through our children. Everything we say and do, from the simplest voice inflections to our treatment of others, is meticulously noted by these impressionable little beings. I knew I had to teach by example when I had kids. But it's never been more glaringly obvious how important that example is than when my toddler opens his mouth, and out comes...ME. No wonder it's so easy to get it wrong, and by it, I mean parenting. It's a wonder anyone gets it even remotely close to right. What a responsibility we have. What a thing we've been charged with. What an honor for Mother Nature to have thought us worthy of such a challenge.

Wow. That's some powerful stuff. I'm going to chew on that awhile.

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Evan's First Trip to the Zoo

2011-06-17T00:02:00.000-04:00

School's out for summer, and what's a family to do? Why, go to the zoo! I've heard of Lansing's Potter Park Zoo for years - in college, from colleagues, from students - but had never had the opportunity to go. So, for my first day of summer break, I decided it would be nice for us all to visit. Avery was stoked, of course. And Evan? He couldn't wait (to go to sleep, that is).

Aside from the chaos (you'll have to read my other blog for that), it was a nice time. Still, Evan was less than enthused. Perhaps it was because Mother Nature threatened us with rain the entire time. Perhaps it was because it was freezing cold (wasn't it just 100 degrees or something?). Perhaps it was because all the animals were either sleeping or had escaped the safety of their cages (and I'm talking about our safety here, not theirs). Whatever the reason, we could have taken Evan to watch paint dry, and he would have been far more interested. But that's okay. Despite his lackluster demeanor, we had fun as a collective family unit, and isn't spending time with your family - whether they're tired, crabby, excited, ecstatic, or sad - what it's all about anyway?

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Happy Birthday, Avery!

2011-06-14T22:46:00.000-04:00

Avery just after birth

Three years ago today, I was in rough shape, recovering from a midnight emergency c-section after a 17 hour labor. I was swollen, bloated, hungry, and in pain. But I had a brand new baby. And, man, was he cute! I couldn't believe this little guy had arrived, finally, after what seemed like a twenty year pregnancy. (Two-and-a-half years later, I would learn that the first pregnancy was a piece of cake comparatively speaking, but that's another story.) I couldn't wait to get out of that hospital and bring that baby home.

That baby, Avery, is no longer a baby. He is a big three-year-old today. And a lot has happened in those three years. A lot. Two weeks after he was born, we packed up our car and left Florida (where we were living at the time) to interview for teaching jobs in Michigan. Back to Florida we went, where, after much debate, we decided that we were, in fact, going to take the plunge and move back North. So, we packed our entire house up, paid a moving company to get our stuff (that's another story, too), loaded ourselves, our two dogs, and Avery into the car, and headed back to Chris's parents' house just outside of Detroit, where we lived, out of suitcases, for a few weeks. Just before school started in the fall, we secured an apartment (a place we said we'd never live again - our apartment experiences have been horrible), and proceeded to live on top of each other and our stuff. Finally, in November of 2009, we closed on our house (that we dearly love, by the way), which required us to once again pack up our stuff and move in a matter of days. And lastly, I became pregnant with Evan, who was born in September, only to have to stay in the hospital NICU for 10 days following birth. Poor Avery. He didn't understand what was going on. He just knew that Mommy didn't feel well (another c-section) and that something was wrong with his new baby brother. In the midst of all this, we also had two deaths in the family, adding to the chaos.

Avery at one (of three) 3rd birthday celebrations

Three years later, the craziness has died down (thankfully), and Avery does not seem too scarred by it. Sure, he's a typical toddler. Temper tantrums, contrary demeanor, selfishness, you name it. But he's still my sweet little boy. Kind, sensitive, gentle, and loving. So, it is with much love in my heart that I say, "Happy birthday, buddy. Mommy loves you."

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Up North Success

2011-06-12T22:36:00.002-04:00

As a child, going Up North was one of my favorite things of all time. For those of you not from Michigan, Up North is a place. It's comprised of the upper two-thirds of the state. Going Up North is a summer phenomenon where people residing in the lower third of the state pack up and travel to that upper two-thirds (excluding the upper peninsula - that's a whole different Up North), usually to a lake house, camp site, or other outdoorsy locale. We do this every weekend. We battle weather, gas prices, and bumper-to-bumper traffic, just to spend a few hours at our beloved summer escape. To Southerners, this likely seems borderline insane. Aren't you far enough North as it is? How much farther could you want to go? For Michiganders, there is no limit to how far we will travel to spend quality time with family and friends, boating, fishing, swimming, sitting around the camp fire, making s'mores, gazing at the stars, and so on.

So when I had children, I was determined to give them the same Up North experiences I had as a child. I could only hope that they would cherish it as much as I did (and still do). My oldest son, almost three, loves it. His Up North initiation occurred when he was just two weeks old. Today, he can't wait to spend time with Mooma and Papa (my parents), see his Uncle Eric and Aunt Vanessa, and engage in as many outdoor activities as one day will allow.

That's why, when we made the decision to make the first trek of the year this past weekend, I was giddy. This would be Evan's first time. This would be the moment from which the rest of his rich memories would flourish. It had to be perfect. And it was. Oh, the weather was crappy. We nearly froze to death at night and in the morning. We couldn't get in the water (except for Uncle Eric - nothing stops him). Few lawn games made their way out of the shed. But despite all this, I felt complete. My family was there, together, making memories. We celebrated Avery's third birthday. We ate good food. We had good conversation. We slept on top of each other, but that's all part of the beauty of it. We took time out of our busy, plugged-in lives to enjoy the simple things in life. And Evan loved it.

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Four days seizure free!

2011-06-09T17:49:00.002-04:00

Since the day he was born, Evan has been on powerful drugs to control the apnea-inducing seizures that threatened his tiny, precious life. Phenobarbital. A powerful sedative. The nurse cautioned us to be very careful not to allow our toddler to get into Evan's medicine; it could be fatal, or as she stated, "very, very bad." Our first night home from the hospital (after a 10 day stay in the NICU, where they handled this medication thing the way only professionals can), we had to administer his meds. The instructions were to give him 6 ML at bedtime. We were told it had to be given at the same time each night. We carefully positioned Evan, the nipple, and the medicine-filled syringe, ready to give this life-or-death dose to our son. We failed. Miserably. At first he didn't want it. Then he started choking on it. I panicked. I screamed and yelled and cried and had a fit. I was sure he was going to stop breathing in the night because we couldn't get this medicine down his throat. My husband, far calmer than I, called the NICU neonatologist at the hospital and asked what to do.

She told us to try again the next night. Phenobarbital (or Phenobarb as those in the biz refer to it) has a half-life, a radioactive element (not really, but doesn't "half-life" conjure images of a glowing entity of sorts?) that remains in the body for some time after a dose. Slightly reassured, we resolved to try again.

Thankfully, we became pros ourselves at giving Evan his meds. We abandoned the techniques the hospital taught us in favor of self-invented ones that worked best for us and our son. Each night, between 8 and 10, Evan had his medicine right before his last bottle of the day. It was a part of life.

Until our last visit with the neurologist. He announced we were going to take Evan off his meds for good instead of slowly weaning him as we had been doing. More confident in our circumstances, we were actually happy about this. Finally, our son wouldn't have to rely on a "downer" to survive (as opposed to an "upper," of course - we wouldn't want that either).

I am happy to report that Evan has had a successful four days med-free! He is his same old self (smiley AND crabby; how can anyone be those two things at once?). We couldn't be happier.

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We Need Your Help!

2011-06-02T15:35:00.001-04:00

There is still time to donate to two very worthy causes:

Evan's Advocates - Help Pediatric Stroke Survivors
Vivint Gives Back Project

The first cause, Evan's Advocates, was created in my son's name. Even the smallest donation - $10 - will help raise money for St. Joseph Mercy Hospital in Ann Arbor, MI so that they may continue to provide excellent care and resources to patients like my son.

The second cause is FREE! All you have to do is visit the site, log in with your Facebook ID, and endorse the CHASA charity.

On behalf of my son and children like him, I thank you for your support!

Visit me at familiescopingwithinfantstroke.org!

Donate to a good cause!

2011-05-31T16:06:00.002-04:00

This time of year is always a special one for us. My husband and I were married on June 10. Our first son was born on June 14. This is the time of year when we start going to the cabin and participating in water sports, family time, and relaxation. Life is good this time of year! What better time, then, to make life good for others? In appreciation for all we have, we are giving back to an organization that gave so much to us: St. Joseph Mercy Hospital in Ann Arbor, MI. Were it not for the amazing staff and resources at St. Joe's, our second son may not have fared as well as he did following his stroke in utero. I truly believe that this hospital made a tremendous difference in our lives. As a result, I have started a cause in my son's name:

Evan's Advocates - Help Pediatric Stroke Survivors

Please - join our cause, today. It's free! Invite your friends to join as well. If you are able, donate just a little to this cause in order to maintain the resources necessary to save more lives like my son's. Thank you so much!

Visit me at familiescopingwithinfantstroke.org!

Visit my web page!

2011-05-31T00:20:00.003-04:00

Visit me at my website: Families Coping with Infant Stroke

My Story

2011-05-30T23:57:00.006-04:00

In September 2010, our second son was born after a troublesome pregnancy and c-section delivery. The medical staff had a rather difficult time getting Evan to respond at birth, noting that the lower half of his body was blue, which to the pediatrician on call, appeared strange. Finally, we heard those first cries, and a nurse informed us that we had a beautiful red-headed little boy.

While I was recovering in the post-surgical room, desperate for help with my increasing pain, my husband and mother took over the duties of initial cuddlings and feedings. Still concerned about his purple extremities, we questioned the nurse repeatedly. Even she appeared stumped. A few hours later, the nurse had successfully obtained a medication from the anesthesiologist that would dull my then unbearable pain; the only downside to this medication was its sedating effect.

Through my medication-induced haze, I recall hearing my husband ask my mother, “Does he look like he’s breathing?” to which she replied, “No.” A desperate call to the nurse followed. This scene repeated itself three times before pediatric staff arrived to take Evan to the NICU.

Unfortunately, I had to be taken to my room, for I was still being monitored following surgery. That meant my husband and I had to split, me going off to my room with no idea of what was happening, and him going off to be with our son. It didn’t help that I couldn’t think straight because of the drugs. What exactly was happening to my child?

After hours in the NICU, my husband finally returned. There was still no explanation for Evan’s breathing difficulties. My husband is a very optimistic, glass-half-full kind of guy, and by the look on his face, I could tell even he was defeated by this mysterious prognosis. We were in trouble.

After a long night filled with tears, prayers, and questions, a neonatologist visited us the next morning. They suspected one of three things was wrong with our son: 1.) He had suffered some sort of brain damage from the vacuum extraction (yes, that’s right, a vacuum extraction for a c-section); 2.) He had meningitis; or 3.) He had suffered a stroke in utero. As I had been admitted a week or two prior to delivery for limited fetal movement - a potential sign of infant stroke in utero - the doctors concluded that this was a very real possibility. Following a brain scan, their suspicions were confirmed. Evan had suffered a stroke anytime within the two weeks leading right up to delivery. He had suffered massive left-side brain damage, which was causing him to seize. Hence, his breathing difficulties were a result of apnea, a manifestation of these seizures.

The doctors told us to brace ourselves for a rough next couple of days. Typically, they said, infants who have suffered a stroke will have numerous seizures in the days following birth; these were to slowly taper off within a week or so. They loaded him up with phenobarbitol, hooked him to countless machines, and we waited. Ten days of the worst waiting of my life. The day after my surgery, I was determined to go down to the NICU to see Evan despite the immense pain. I was loaded into a wheelchair and driven down there.

Many more tests were run, and many more days passed, until finally, we could take him home (the day before my birthday – what a great gift!). Our elation mixed with fear, for as much as we wanted him home, we were terrified that he would stop breathing in the night, and with no monitor to warn us, we would lose him.

In the aftermath of this harrowing ordeal, we learned some very basic things about infant stroke, the most frustrating of which is that little is known about its causes and no definite prognosis can be given for the child’s future. Some things were certain: Evan would have right-side motor difficulties. He would be left-handed and would have limited use of his right hand. He would walk with a limp. He would be at greater risk for cognitive impairments, including ADD and learning disabilities. It was all too much. Childhood and adolescence are hard enough. It’s not fair that my child must have additional challenges! What if he’s severely impaired? How will we provide him with the care he needs when we both have to work to put food on the table? I had to be put on anxiety medication to cope with these and other racing thoughts.

Thankfully, I am pleased to report that Evan is currently a happy, socially and emotionally well-adjusted baby with very minor developmental delays. We have not noticed any seizures since bringing him home. He is regularly seeing a handful of medical professionals: his pediatrician, pediatric neurologist, rehabilitative medicine specialist, and physical therapist. We are weaning him completely off his seizure medications. While he does exhibit right-side motor limitations, he is doing much better than we ever expected or imagined given what little information we had to work with. I am no longer having panic attacks about Evan’s condition. For now, life is good! We plan to keep it that way by “not writing his story for him” as my mother once said, but rather by presenting him with every opportunity to flourish and grow into a healthy child.