we care about stuff.

I am a football fan, and more specifically, a Seattle Seahawks fan.

The hype, the loyalty, the sweat, the planning, the plays.

I love all of it.

I am the 12^th man.

I am also more than that and you are not better than me.

When 700,000 people crowded downtown Seattle to welcome the Lombardi trophy home for the first time EVER, the energy was so intense that I could feel it here, 40 miles south. The city came together and they flooded the streets to witness history and cheer for the team that represents our city in the National Football League.

They braved the freezing cold and stood shoulder to should for hours, just waiting for a glimpse of the young talented men that represent so well the American dream.

The young men like Richard Sherman, who graduated top of his class in a rough neighborhood of Compton, before getting his degree at Stanford and proudly carrying the most sought after trophy in the NFL down 4^th ST for over half a million of his closest friends.

My Facebook feed was full of the pictures of rowdy fans in blue and green. Witnessing history and soaking up Seattle’s long awaited national championship win.

Some of you, though, were less enthused. And this one is for you. YOU posted updates that said:

“More people downtown right now than voted in city elections.”

“Wouldn’t it be great if these people were this passionate about things that matter?”

“Where was the parade like this for our troops?”

I get that. Kind of.  Voting is important. Supporting our troops is important, and there are things bigger than football in the world deserving our attention

but what a ridiculous assumption it is that people like me can’t love football and dedicate ourselves to larger causes at the same time.

I try to stay aware of the world events and keep up on things that are happening in the world, and do what I can to help. I sign the petitions, I donate my money, and A LOT of my time. I spread awareness and I ALWAYS vote. I spent Tuesday evening appearing  before the mayor to bring awareness to a cause close to my heart. While I am proud of the work that I do in my community, I am not saying all of that to make myself look better. I am saying it because I am not unlike many other NFL fans that do the same things.

That’s why we need a break. The human mind is strong. It can handle a whole lot of heartbreak, but sometimes, there needs to be an escape. This is why people check out when they are experiencing heartbreaking horrors that you and I can only imagine. This is why we have repressed memories.

It doesn’t mean we don’t care. It means that we are human, and as such, we enjoy being entertained.

It is the same reason that even during the Great Depression, 60-80 million Americans attended the movie theatre each week. It provided an ESCAPE from the harsh realities that our country was facing. It was a brief time where despair was forgotten, and morale was lifted.

If football isn’t your thing, that’s cool….

but unless you have never sat in a packed theatre appreciating a Broadway show, gotten caught up in a Hollywood movie, or found yourself lost in the art of a song, tapping your foot to the beat and for *just* a moment, letting your troubles be forgotten…

then you have to understand and appreciate the beauty of a positive distraction.

It takes passion.

It takes loyalty.

It takes a loud voice and letting go a little…or a lot.

It is fun. It is wild. It is crazy.

There is talent.

There are dreams being pursued…and dreams being lived.

There is hard work.

There is dedication.

There are many many components to football that make it America’s favorite sport.

I encourage you to step off of your soapbox. It’s fun down here.

700,000 screaming fans is a lot. Even still, there’s always room for one more on the bandwagon.

It won’t make you shallow, or heartless, or archaic if you want to hop on.

Alayna.

Every once in awhile, for whatever reason, you connect with a stranger.


I have often said that having a child with a special medical condition is like being a part of a secret club that you never wanted to be a part of. Maybe the closeknit sense of family stems from the fact that all of the members feel the same way.


Once you have stayed up all night sick to your stomach with worry on the eve of open heart surgery day, it's impossible to forget what it feels like. Dare I say that it is a form of PTSD? Because it creeps up on you, haunts you and not just the memory of it but ALL of it. The feelings, the worry, the sinking feeling. So whenever another member of our secret little society has a child going in for surgery, I get ill. I feel it all over again


and then when they come off of bypass and I get to watch them get stronger and stronger, I FEEL the triumph and celebration.


In this secret world, we also lose children. It's a tough pill to swallow and it always hurts, knowing that the child lost could be any child and that his/her parents loved him the same way you love your own.


It serves as a reminder that though surgeries are becoming more and more successful, Congenital Heart Defects are an evil thief and claim lives every single day. Sometimes it's easier to pretend that CHD is not the number one killer of babies in their first year of life. That way, you don't have to face the fact that your own child's condition is potentially deadly.


This time, though, it's even different. This week has been full of updates that we know contain so much more than what is actually said. How do you put it into words, without sounding like you have given up hope?


THIS child has left such a surreal impact on me that though I have never even met her, I considered taking the day off of work tomorrow to grieve.


Maybe it's because her face reminds me of Max somehow, or that they're close in age, or even that they were both born with Tetralogy of Fallot? She is really gorgeous and has a stunning smirk as well. She is seriously lovely in every way.


Either way, I have fallen in love with this little girl and her family has become my own. I am hurting so hard, I can't even imagine the terrible pain that her parents are feeling.


I talk a lot about CHD. I openly shared out journey with Max, and I will continue to. I wanted people to understand what a parent goes through and how hard it is...but for a person that has never been impacted by CHD and only finds our story, I want you to know-ours is not representative of the real CHD world. Our journey was hard, but in comparison, it was so easy. Max is a textbook case and has a condition with one of the highest success rates and quality of life. You can't even begin to understand how grateful I am for the hand we were dealt.


For every smooth recovery, there is a family spending months on end in the hospital.


For every successful surgery, there is a child whose heart just wasn't quite ready to begin beating on it's own again.


For every celebrated crooked smile, there is a family holding their baby for the very last time.


For every fading scar, there is a heartbroken 10 year old that just wants to try out for sports, but can't.


There are children waiting on transplant lists. Holding out hope that their new hearts come before their old one gives out.


There are kids with successful transplants praying every month for the rest of their LIVES that when they go in for checkups, there will be no sign of rejection.


There are sweet babies who are sailing through their recoveries, and then unexpectedly-they code. They fight harder than you have ever fought for anything in your life.


Max has overcome so much, and I am SO SO proud of him, his resilience, his FIGHT.


Some days, though, I am angry. On days like today when I want to scream at the world: WHY can't EVERY child recover easily? Why couldn't we watch HER grow? Why does SHE have to go?


WHY.


I HATE congenital heart defects. I HATE THEM.


This is the real ugly cruelty of it all and THIS SUCKS.


Please pray for this incredible family. I have watched them love their child so fiercely that it hurts. I have watched them parent with such grace and strength and have never had such admiration for complete strangers. I know that this couple can take on the world together, and I want so desperately to see beautiful things in their future.


I want them to know the beauty they brought into this world, and the lasting impact it will have on my life. I want them to know that Alayna will never be forgotten and that she will always be lucky to have been theirs


and that she will ALWAYS be theirs.


I want to not have to try to find the right words. I want parents to not have to say goodbye to their babies.


And when you go to choose a cause, and offer your support vocally and financially, I want you to remember Alayna and the kids like her. I want you to know that though you don't hear about them all, that they are 1 in 100. I want you to know that CHD kills more kids than every form of childhood cancer COMBINED.


Where there is suffering, there is suffering and no cause is greater than any other. I get that. I'm not asking you to withdraw your support from another cause and direct it towards CHD. I just want you to know that we're here. That we hurt. That CHD is real and it is life changing and it is heartbreaking.


Please light a candle for Alayna as she is kissed goodnight. Hold your loved ones close and maybe, just tell one friend about the lovely little girl that made the world a little more beautiful just by being in it.

8 days of Christmas.

Anybody who knows me (like, at all) knows that I am a lover of traditions. New, old, silly, serious…family traditions own me. Sharing MY childhood traditions with my own kids is my absolute favorite part of the holiday season. Every once in a while though, we stumble upon a newbie worth hanging onto.

We all know about new PJs on Christmas Eve, baking cookies for Santa, and all of those tried and true Christmas traditions, but here is a list of our family's funky homemade traditions. Just in case you’re looking for something to spice up your Christmas season.

         

        {one}

      Wake your kids up for the first snow! Unless they’re already awake. Either way, when that first glorious sparkly flake falls, get your child outside. No matter what time it is. Catch them on your tongue, sled if you have enough of the stuff, build a midnight snowman, make it magical.  Worried it will ruin their whole schedule? Loosen up. This one gets even better as your kids get older.

 

 

                 
                  {two}

          Decorate an outside tree! String popcorn, make ornaments out of birdseed (Roll a pinecone in peanut butter, then in birdseed!) and hang the goods on a real tree in the front yard.

 

 

      {three} 

      Wake your kids up to see Christmas lights! (BONUS-this started as a last ditch attempt to get a sleepless toddler sleepy…and it was so special that we have done it every year since. Drive around until they’re asleep, or don’t) This is such a fun and special surprise. Get your kiddos all ready for the night, then announce that before they head to their beds, they must take a ride on “The Polar Express!” Load ‘em up, swing through Starbucks for some hot chocolate, and drive around looking at pretty lights. Think that will be boring for them? Ummm…they just got out of bedtime at the last minute. They will be stoked. Promise.

 

 

      {four}

      Celebrate St. Nicholas Day. It is on December 6^th and it is the perfect opportunity to teach your little ones about giving, charity, and the true spirit of Christmas.  We spend the day doing something kind for a stranger. In the past we have used the day to perform random acts of kindness all over town, purchase a toy for the Toys for Tots bin, adopt a family, or volunteer our (my) time. I read them the story of Saint Nicholas http://www.stnicholascenter.org/pages/who-is-st-nicholas/ and we go out on a mission to do what Saint Nicholas would do.

      {five}

       Have a cake tasting/cookie tasting party! This is a GREAT exercise for early readers/writers or even for older kids learning about research.  You need about 6 different kinds of cake and/or cookies. Have your child make a chart with each one listed. Talk about the different tastes and textures as you take a bite of each one. Write down your observations and rate them one a scale of whatever (we did 1-5.) The cookie (cake) with the highest average score wins!

 

 

      {six}

      Pick out a special ornament. We go to the thrift shop for this one. This year, we picked out a Dr. Seuss hat to mark the year Eldon started reading, and a cute little vintage block to mark Max’s first Christmas. Cost? $2

       {seven}

       Make a Wish List. This can be done at any age, but was especially special at this age.  Eldon had no idea that this was a reading exercise (again…I’m tricky like that.) We went to Toys R Us with a pen and paper. We walked around the entiiiiiire store while Eldon pointed out what he wanted, with the catch that he had to sound it out and write it down himself. He parked himself smack in the middle of the aisles, on the floor, as he sounded out and recorded each item on his clipboard. It took up the better part of our afternoon, but it was the PERFECT mom and me date. Mainly because it was free, but also because his eyes lit up (duh, he was in a toy store) and he was SO proud of himself. The list will also become part of what I assume will be my very favorite collection. (They have a scan option for those of you with smart phones, but I reallllllllly strongly suggest doing it the old fashioned way.)

 

 

      {eight}

      Have a hot chocolate stand! Do it to donate, do it for kids to earn their own gift giving money, or even just for money to keep. It doesn’t really matter, because it’s fun! I’m pretty sure it’s sorta illegal, but…meh. We’re a family of rebels over here.

 

 

I am leaving this list at 8. Relax….it will all be ok.

parenting without religion, part 2- church.

Religion (and the lack of it) has been on my mind lately, so here is part 2 to my original post, parenting without religion. .

After YEARS of searching, I finally found a local group of atheists that aren't total assholes. Not that I think atheists are assholes, but I have never felt pulled to join a group that just sits around bashing religion all the time, the same way I have never felt pulled to join a church that spends most of their time judging. What sold me on this particular group? First, was the invitation to come out to a local church on "serve the city" night. Impressive.

Not just by the atheists, but by the church as well. To open your doors to a group of skeptics, and focus SOLELY on helping the community is impressive. No pressure, no lectures, no judgement.

In fact, the pastor invited some local atheists to have a live-streamed chat with him at his church. This is it, here. It is friendly, thoughtful, and pointed.

http://www.youtube.com/watch?v=efWtBz03U6o&app=desktop

Being there helping out at "Serve the City" night reminded me of when I was younger and attended church. I miss that. Not the actual religion part, but the community part. My family was never particularly Christian. I went to AWANAS as a child, and to youth group, and on the ski retreats when I was a teenager but we didn't go regularly.

I have thought a lot about whether or not I want my kids to have that. The fun in AWANAS, the sense of fellowship. Is it harmful to them if they do believe? I used to think not, but more and more as the political climate changes and many of those who claim to follow Christ seem less and less like him, I worry that religion is harmful.

This is not a bash Christianity post, so let's clear that up now. This is just a genuine tug in two separate directions when it comes to raising children, something that seems to happen a lot on this journey of parenthood.

If I deny them religion, isn't that indoctrination all the same? If I push them towards it, what do I do when they start asking questions about things I don't believe in? Ditching the dogma is a delicate balance when parenting without religion. How do we separate ourselves from religion quietly but confidently?

I don't want to be the "evangelical atheist" that spends all their time bringing other people down and being a jerk all the time trying to covert people to less belief. I also don't want to sit still and silent while other people do the same to us.

So, what's the harm in believing? Nothing. What's the harm in dogma? Lots of things.

I don't want my child feeling shamed, bad, or afraid of hell for messing up. I want him to be GOOD because it's right, not because he is trying to earn a ticket to heaven. I want him to live this life, because as far as I'm concerned...it's the only one he has.

I don't want to raise a child who uses scripture at his will to judge others or deny other people their rights, but ignores the most important concepts of humanity.

Church is a big business. What better thing to sell than an afterlife? How can we trust the intentions of the leaders whose interpretations of the bible are being considered THE word? We see corruption everywhere, and religion is not exempt.

I have tried to believe. There are times that I wish I did. Life would be easier, and less scary. Do I want that for my kids? Sure. Do I want all that comes with it? Not exactly.

So here I am. You know, because there aren't enough big decisions to make when you're a mom.

Right now, I can teach community. I can teach helping others, being respectful and grateful that we are in a country where I have this dilemma in the first place. I can teach love, acceptance, and humility.

Right now, that's going to have to be good enough.

I know that it's good enough.

Eventually, as they mature, they will have more exposure. All I can ask is that they love well and contribute to the world in this life.

I am quite convinced that the vast majority of the human race is good. The bad seeds are sprinkled throughout various belief (and nonbelief) systems, taking advantage of the followers. Maybe, I just don't want them to be the kind of follower that doesn't ask questions, search deeper, and feel confident in their own faith...

...but how do we get there? I don't know yet. As I learn more, I will be sure to let you know.

silly smiles and superpowers

You know what's funny? The way things just sort of fall in place. They always do eventually, and when you're in the thick of it it's so hard to see how all of the puzzle pieces are going to come together, but they do. And once it's all there, and everything fits, you forget that you ever thought you were missing a piece.

The literature says all sorts of things about stages of grief and beating yourself up and blaming yourself when your child is born short of healthy.

I never struggled with any of that. I knew it wasn't my fault and I never had the "why me?" moments that the experts warn about. I knew that there wasn't an answer....there wasn't a reason why.
It just IS.

This week, though....I was hit with a clearer realization of Max being absolutely perfect. He has the most perfect mended little body and crooked little smile, and I have always loved every last bit of him. He also has a rather funky tailbone which is not really relevant, but noted. He has a killer grin and gorgeous eyes. I love EVERYTHING about him.

I have always worried, though, that he might not love his quirks the same way. Lots of kids have heart defects (1 in 100, actually) but not all of them have paralyzed mouths. Sometimes I pull down the other side of his mouth when he smiles just to see what his smile would have looked like otherwise. Curiosity gets me every time, but every time I do it, it's easy to see that it's just not "him." He looks like somebody else. MY Max has this adorable grin

and I am becoming even more and more thankful for it. Perhaps it is just another of nature's rare, beautiful mistakes, but it's becoming clear very quickly that we are at an advantage here...

1) because Max smiles, like, all day long. At every stranger, every noise, every everything. He stops traffic...literally. People get so sidetracked by him that they just drop what they're doing. I even had a stranger kiss his head once and then apologize profusely.

2) because it opens everything up for discussion. That smile is his ticket to a better understanding and an opportunity to share his story, spread awareness, and present a sort of unique beauty to the world. They notice the curve of his lips (which has been likened to popeye, a giraffe, and a mobster) and they fall in love. Then they mention how cute it is, with NO idea that it is a defect....and that there are more where that came from.

Then I get to use my big mouth and just like a vomit of words, the statistics come pouring out while Max's story is told...again.

"he looks so healthy!"

"what a miracle!"

"1 in 100? Wow...I had no idea!"

"I was born with a hole in my heart."

We all know that I like to talk. We ALL know that I like to blab about my kids all the time, and I feel like Max's heart is such an important part of his journey. I want people to know about it when they meet him. I want them to know about congenital heart defects, and how common they are and how serious they are and how we are making HUGE strides every day. How TWICE as many kids die from CHD than from all forms of childhood cancer combined, and how severely underfunded CHD research is.

Without a word, Max tells them. All he has to do is bat those eyelashes and smile at a stranger, and that is our icebreaker. That is my invitation to speak up. Max's smile is his superpower and his gift to this world. I am so glad that I get to be the sidekick.

He has taken a silent, invisible defect and brought it out into the open. His smile is the sidewalk sign, waving people in to our crazy little world. It says "Look inside! There is a whole WORLD you didn't even know existed! Come on in, let me tell you about it."

I sorta knew all of this already, but it has never been quite so obvious as it is lately.

Say "cheese," Max. It's time to save your world.

we surrender.

We have so many things happening all at once that I almost forget to stop and take it all in. I have a new job, we sign the lease to our new place on Friday and move in on October 1st. Eldon started Kindergarten and Max just hit the 6 month mark. I love change...I thrive in it.

Adaptability is the name of my game.

It is time consuming though...especially when it all hits at once.

I am so ready to just LIVE. This past year has tested all that I am. I have learned to bite my tongue, I have learned to "let go," and to lean on people when they are stronger than I am. I have learned to compromise and the most difficult lesson of all- to surrender to things that are just out of my control.

I have fought with my voice, out of sheer exhaustion, pure love, and determination for the life of my son.

I have learned a lot about the human spirit and the type of human I want to be. I have learned to be my own gatekeeper and only open it for those that have a positive influence on my life.

I have job searched, applied, and interviewed with a baby at my breast and a five year old to hush. I have trudged through single parenthood with less grace but more fight than I thought I was capable of. It is in that mudhole where I met other women, all battling circumstance, all stronger than the ones who choose to berate, gossip, and look down on. It is there that I found myself in incredible company and there that I learned to judge less and help more.

I have learned to tune out negativity and to not take it personal when people are just plain mean. Some people just are. I have chosen to focus my energy not on resentment, revenge, or fairness but instead on understanding, compassion, and gratitude.

I have learned to be honest with myself. To admit fault, to admit mistakes, and to be a better person than I was the day before.

I am still learning...but am looking forward to less of the hard way. I want to take the path of least resistance for awhile. The road less traveled was full of adventure, excitement, and lessons...but I'm ready for the shortcut. I am here. Right at the fork in the road and for the first time in a long time, the signs are clear. The direction is clearly marked and I have a map laid out before me.

I am so proud of this family of mine. We went to battle, and we won. It is time to lay down our shields and stop fighting. Struggle will reappear some day and we will always be swatting away the small stuff but for now, we rest.

To our knights in shining armor, the ones who carried us through the thick of it-thank you. You know who you are and where to find us when it comes time to build your own army.

I friggin' love you guys. Seriously.

a real job.

I got my first job when I was 13. Legal? Probably not, but I took it seriously. I worked hard, and always have.

So when I became pregnant with Eldon at the age of 20, I KNEW that I would be a working mom. I couldn't figure out just what the hell a stay-at-home does all day. I certainly didn't have what it takes to become addicted to soap operas and the whole having dinner hot and ready at 5:00 thing is just not my style.

No apron could tame me. I was born to be wild! I was an I-N-D-E-P-E-N-D-E-N-T woman, yo. I couldn't wipe asses all day...I was too busy with my real job.   

Yep, that's me before motherhood. Brown hair, front row, second from the left.

I mean, seriously. How many times a day can you clean a house? I could make dinner and clean the house in an hour after work. What would I possibly do with the other dragging hours of the day?

Cue, Eldon.

Then the end of my maternity leave.

The year is 2008 and I am officially a mom. What the hell? Don't these people SLEEP?

Every time I handed him over to another person to hold him, my heart would speed up, I would freak-panic-they're-not-doing-it-right! Typical first time mom over here. There was no way in hell I was letting anybody else rock him to sleep all day while I worked. They would surely just ruin him. Besides, he liked me best. (This is no longer the case. I know because he says things like "Sorry, Mom. I just love Dad more than you.")

So, after much discussion...I never went back to work. I dabbled in part time work, but for all intents and purposes, from morning until 5:00pm, I was thrown into the world of Stay at Home Mommyhood.

I was right. I didn't have what it takes.

I have worked full time, part time, and not at all. Being a full time mom is hands down, the most challenging of them all....hands fucking down.

So how many times a day can you clean a house? I'll tell you. Once in the morning, once after breakfast, once during naptime, once after lunch, and one mad dash clean sweep before 5:00pm to avoid that "what did you do all day?" look from the husband. I have been told that some husbands can control this look or at least hide it well. Mine couldn't. In fact, his look came with the words "What did you do all day?"

Wanna know what soaps I got hooked on? Shut the hell up. That TV only comes on when I want to feel guilty about planting my kids in front of it so I can do the dishes...again.

I was happy to stay at home and motherhood is my calling, but it was there at the kitchen sink that the daydreams of peeing alone, driving to and from work, and eating lunch that consisted of more than my son's grilled cheese crusts began to consume me.

And now...five years later and starting from square one with another child, I am certain that I am best, that my family functions best, and that it's best for my kids if I work outside of the home.

This is just not me, but not for the reasons I had previously believed. This shit is HARD. Waking up to a real alarm, busting your ass just to come home and do it some more is hard too. We all work hard. Being a mom is a job without breaks...no matter what other titles you hold.

I am thankful for the forced perspective that allowed me to let go of judgement and see motherhood for all that it is. I am thankful that I have had the opportunity to grow and learn about how I mother best. The verdict is in, I mother best when I am happy. I am happiest when I bring in an income.

I have struggled with whether or not it's selfish. I have buried myself in research that suggests long term implications when a baby is separated from his/her mother, and other research that suggests the opposite. Luckily, necessity made most of the decision for me.

Now that we are past surgery and have nothing else to wait for, I am diving in. I am going to be hitting the job search hard. I can't wait for the new adventure that is waiting for us.

Lucky for us, we have been dressed for adventure for quite some time now.

normal.

I have been a writing machine lately, but a pretty shitty blogger. I jot down thoughts while I snuggle up next to my boys in bed, but that quiet time at the computer has been reserved for updating family and friends, job hunting, and news reading.

I feel like I am finally emerging from a loooong tunnel and slowly my eyes are adjusting to the bright light of the real world.

Though I have missed this world, and I can't believe I can finally feel the warmth of daylight on my cheeks again, I have quickly noticed that nothing looks the same. I have accepted that it never will.

I see people differently. I see health, friendships, love, milestones all with a new genuine appreciation. Not when I take a moment to reflect, but every second of every single day. When people notice a sweet chubby baby in the grocery store, I want to spill every detail about what a fighter he is and all he has been through, just in case they didn't know just HOW sweet this chubby baby is and how special he is to me.

Life is picking back up. I no longer feel like we are sitting around "waiting" for things to happen. It's like this magic clock that stops when we need it to, and resumes when we're ready, even when we don't know what ready is.

Max rocked his surgery...almost 2 months ago. Yeah, it's been that long since I *really* blogged. (To catch up on inpatient photos and such, you can "like" his FB page, Mighty Max and the Mission Squad.) He is not taking any medications (for the first time ever) and doesn't see his Cardiologist again until December. He's just a regular ol' baby with a good background story.

Oh yeah...Max has a page now. Mighty Max and the Mission Squad.

Eldon just picked out new clothes and supplies for Kindergarten. Sweet nostalgia, I must stop here. I can only pretend to chop onions so many times a day.

The boys' Dad landed a pretty sweet job....here. He lives here now and they get to see him every single day. Big stuff.

I am loving this new life. Trying my best to pay it forward after all the help we have received, reconnecting with the friends who have supported me in every way, building new friendships from a foundation of common understanding, and trying on the title of "advocate," not just for Max, but for congenital heart defects in general.

Oh, and I'm mom. Best role I play, though I am hoping to drop the "stay at home" part soon. (more on that to come.)

Nice to see you again, real world. It's been a trip.

Dear Dr. Michael Karpf

Recently, Congenital Heart Defects have made their way into the spotlight. This article on CNN showcases the heartbreaking stories of parents whose children suffered due to the care they received (or didn't receive) at Kentucky Children's Hospital. The Executive Vice President for Health Affairs at the hospital, Michael Karpf, was quoted in the article calling for higher standards of care. Good.

He also mentioned his reasoning for not communicating well with families, which struck a chord with me.

Here is my open letter to Dr. Michael Karpf.

Dear Dr. Michael Karpf,

I am writing to you as a parent of a child with a congenital heart defect. My son is a survivor, having been born with Tetralogy of Fallot, and having had his surgical repair at Seattle Children’s Hospital.

He is doing wonderfully. He is growing and thriving. I am beyond thankful for the skilled surgeon and incredible staff that treated my son and so, saved his life.

Choosing a hospital was not an easy decision for me. I found out about my son’s defect when I was only 16 weeks pregnant. I immediately began researching children’s hospitals, prepared to relocate so my son could receive the best care. I moved to Washington from another state, and delivered him into the care of Seattle Children’s Hospital. Their transparency made me comfortable, their statistics gave me hope.

Unfortunately, as you recently admitted to the media, your hospital cannot say the same. This is bothersome, but I appreciate your working towards a better program. What bothers me most is not the fact that your pediatric cardiac surgery mortality rate is high, though this is also unacceptable and heartbreaking. What bothers me most is your inability to provide information to the people who need it most.

We know that even the most skilled surgeons lose patients. We know that open heart surgery carries risks, and mortality is a reality that we face every day.

Withholding information because you deem us, as parents, too ignorant to understand, is offensive.

One year ago, I was not aware that a heart had four chambers. I knew of an aorta, but not of its function. Like most parents, I didn’t have to know these things. I didn’t have to know what a ventricular septal defect was, because it wasn’t threatening my child’s life. I didn’t want to receive hands-on learning experiences, but I did.

I respect your degree, and that you know much more about the medical field than I do. I also know that you are underestimating me, and the other parents who have had to adjust, learn, and grow in order to provide for their children, what other parents are able to provide without such accommodation. Health, safety, and quality of life.

When you say that most people would “have a hard time understanding data,” I feel the need to remind you, that we are not most people.

Most new parents cannot intricately describe their child’s heart.  Most new parents do not take their new babies home with a rigorous schedule of medications, measured feedings, and a calendar full of appointments to keep.

Most new parents don’t schedule outings around RSV/Flu season and confine themselves to their homes when their children are interstage. Most people will never utter the word, “interstage.”

Most new parents don’t sit nervously at cardiologist appointments, waiting to read the number on the pulse oximetry monitor, wondering if the number will be lower this week, than the last. Most new parents don’t understand how beautiful a blue “100” on a screen can be.

Most new parents don’t console their infants as they lie in hospital beds, screaming out in pain from lab draw attempts and scratching at incision sites. Most people would never understand what it’s like to give up your expectation for healthy, and instead aim for alive.

I understand that you have an incredibly important job to do. You are in the business of saving lives. I respect your expertise and your desire to make the changes necessary to ensure that the children being treated at your hospital are given every fighting chance at life.

 I ask that you respect my job, as the mother of my child. I ask that you respect my expertise, as no person in this world is a better expert on my child. Do not underestimate my ability to understand, because if there is anything in this world that ignites the fire of a need to discover, learn, and know…it is the health and wellbeing of my son.

If I am having a hard time understanding the data, it is your job, sir, to help me understand. Do not write me off as incapable. Rephrase, explain in detail, and use me as an important tool in my child’s care.

I reserve the right to make educated decisions to keep my child well. You are the educator, and as any good educator, it is your responsibility to provide all the information necessary so that we can do with that information as we see fit. If at any time you are not 100% confident in your abilities and the abilities of your team, the patient should be the first to know.

I urge you to not only make the changes necessary to improve your hospital’s surgical outcomes, but also to reconsider the manner in which you communicate with your patient’s families.

Transparency matters. I am confident that though most people have never been where I stand, most people would demand the same.

 

Most Sincerely,

Jenelle Walter

pre-op.

Today we spent the entire day at Seattle Children's Hospital gettin' our pre-op on. Max's surgery is a go for Monday morning.

Unprepared is not quite the word I am looking for, but it fits. I was unprepared for the emotions I would feel today and bombarded/blind-sided/taken back by the transformation I would endure after just one day spent at this amazing place.

Life-changing is another word...since we're throwing them around.

I walked into this hospital thinking I already knew, thinking I belonged...but it was written all over our tired, scared faces. We were the newbies. The first timers.

Looking around, it was easy to spot the veteran parents. The ones who know each nurse by name, and run into their friends in the waiting room.

It was also easy to feel lucky. Sitting there with our sweet baby boy. A patient with an invisible problem

and one that can be fixed.

It was profound. This realization that I know nothing at all about struggle. That the mountain we're facing has not only been climbed before, but our trail was broken a long time ago. We have a map and supplies and a destination. When we get to the top next week, we know that there is a way down and that it will be significantly easier than the climb.

Today we were surrounded by families stuck at the peak. Kids fighting HARD battles. Parents who answer the call for bravery and make the rest of us look lazy.

The mom who hands the ball to her daughter who sits in a wheelchair and throws it, then stomps to it over.and over.and over. again just because it makes her child smile. Every time.

The Dad who learned a new language when his son was born into a world without sound. His defiant toddler signing a very heartfelt "NO!" in response to directions, while his wife tube feeds the baby whose diagnosis is the same as his older brother's.

The children born without limbs and the ones who are very obviously going through chemo.

The ones looking at us, wondering what could possibly be wrong enough with our baby to earn us a visitors pass and an appointment with the amazing staff who took care of us today.

Perspective changes everything. I thought I knew that. I thought I knew how fortunate we were but something hit me so hard today that I am having a very hard time putting it into words.

If you have never witnessed pure, raw, bravery before...I know where you can find it. It is written on the faces of the parents I met today who joked and smiled so that their children wouldn't know fear. It was cupped in the hands of the little toddler bouncing away in her dress...trailed by a machine that was keeping her alive.

All the building up to this point has been real and terrifying, and while Max's defects are severe and risky...we have an answer. We have a light.

All I could think about yesterday was my son and the hurdles he was gearing up for. Tonight it will be the children of strangers keeping me awake.

They will never know that the wary woman in the waiting room was clinging to their courage and that my eyes were being forced open and my heart flooded.

Today I expected emotions, but not at all the ones that I felt.

Today I am inspired.

for life.

Next week (if this cold he seems to be catching doesn't get in the way), Max will be "repaired." His heart will be repaired enough to pump enough oxygenated blood to his organs and he will be "fixed." He won't be cured, though. He will have a mended heart.

He will have Tetralogy of Fallot for life.

Thanks to advances in medical technology, Max should be able to remain active as he grows with some stipulations on contact sports and other dangerous activities.

We learned at today's Neurologist appointment that Max's darling crooked smile will become his signature trademark.

If you are a google junkie like me, the correct term is Hypoplasia of the left depressor anguli oris muscle.

If you have better shit to do than become a voluntary member of the moms-that-could-be-nurses-by-now club, it means that the muscle responsible for controlling the left side of his mouth did not form correctly, resulting in the type of paralysis we see when Max cries or smiles. This muscle can not be strengthened and it will not get better over time. Much like being born with a tiny pinky finger, it just developed that way and that's the way it stays. It is a telltale sign of congenital heart defects.

He will have his adorable droopy lip for life.

This was mixed news for us, confirming what we already knew- that Max has healthy brain function and is smart and strong. And who doesn't love a unique smiley baby?

But he won't be a baby forever. He will have a scar down the middle of his chest and a lopsided grin forever. Through high school, when he starts dating, forever.

For life.

So begins the task of raising a confident, smart, secure child who will become a confident, smart, secure man with a killer smile and a million reasons to use it.

Lots of things stick with you forever, and those are only two. I am determined that Max will carry lots of other things for life.

Like a love for adventure.

Like the ability to pretend.

Like tolerance and compassion even (especially) in the wake of misunderstanding.

Like a respect for nature, art, history, time and only the people who deserve it.

Like roots strong enough to weather any storm and adaptable enough to replant wherever he chooses to grow.

Like endless curiosity and a drive to discover.

Like a fierce need to stand up for what he believes in.

Like calluses on his hands from working hard....and playing harder.

Like the sense it takes to ignore rules and the word "normal."

Like a fearlessness of love.

Like the confidence to question and expose truth.

Like an overwhelming urge to save the world.



I am this boy's mama for life. Here we go livin' it.

what if he dies.

Last week, Max had a cardiologist appointment. It was just a check up and everything looked fine(ish) but it was a tough one. Our Cardiologist rocks. She has become a new friend, a familiar face to Max, and a cozy comfort to me so when we wrapped up and she didn't offer the typical "see you next week!" I lost it. Not in front of her...but in the car

because that means we won't see her until after Max's surgery

and that means that his surgery is close. SO close...

and that makes this all very real.

and maybe...I'm just not equipt to handle this afterall.

How the FUCK do you pack your sweet little baby into the car and drive him into the hospital on purpose? How do you hand him over to the person who is responsible for making his heart work?

I want to check out. I want to run away and come back when everything is all better..when he's "fixed." I want to not have to do this...

but I am Mom. Not only do I have to go through the motions but I have to smile at Max (this comes easily, actually) and be calm and comforting so that this fear that is consuming me is never felt by the innocent little human that has no idea what is going on.

When he cries because his diaper is a tiny bit wet, or because he isn't being held, or because I am changing his diaper, a piece of me is heartbroken because I want those to be his biggest discomforts, but I know that they won't be.

What if he gets sick and the surgery gets postponed?
What if they can't get the repair they want and we have to do this all over again? (which is a real possibility.)
What am I going to do when he is laying there in pain and recovering, looking at me with those big sweet eyes, wondering why I let them hurt him and why I wont pick him up?
What if he dies?

I can't say it out loud...and it almost hurts as much to type it. It's a real fear though, and every time I feel it, it gets topped off with guilt too because I should be busy enjoying my baby, not worrying that I only have two weeks left with him.

Up until now, I have had on my business face. I sit through appointments and listen to specialists tell me what is wrong with my son and together we draft up a plan about how we are going to fix it. I chart medications like it's my job. It is my job.

This is not a "leave it at the office" job, though and emotions are flowing pretty heavily now.

It is sinking in and it sucks and I hate it and I am really just ready to let it all out so I can move on.

So, this is my rant. This is it and then I will find my strength again and stopping complaining. I'll be damned if I let this kid see me cry or if fear is ever written on my face where he can see it. I will kiss him and smile when they walk down that hall, so that he thinks it is all ok. When I tell him that he is going to do awesome, I am going to believe it.

Today I cried while he napped. I wrote this and a list of things to pack for the hospital. I folded some 12 month outfits and wondered if he will ever get to wear them.

Tomorrow I am going to sew some baby hospital gowns so that he is the most stylin' baby there. I am going to get the house ready for when he comes home, and I am going to tell him how strong he is and how loved he is and how adorable his sweet little smile is.

I am going to put all of my strength into him and all of my energy into rooting for him, because I can't wait to see the kid he is when his heart "works" and feed him solids, and watch him crawl and tell him someday what that scar in the middle of his chest is from.

When I do, I hope he glances at it for a second, feels proud of himself for a bit longer, and then bounces off to play while he forgets all about it.

a party for heroes.

Hi, I'm Jenelle and I'm a party-a-holic. We party big around here and planning get togethers is quite possibly my favorite thing to do, so when I realized that Eldon will be turning five while we are in the hospital for Max's surgery, I wanted to throw him a party that would make him feel extra special, because he is.

He is big into all things superheroes and I can't think of a more fitting theme for the hero in my life. The boy with the shield of adaptability, who can't be touched by worry or change. When the world is in turmoil and hurling new homes, new brothers, and new schools at him, he just stands sturdy with his cape...ready to charge right in and show us all how living is done.

Words can't express how proud I am of this boy of mine and how happy my heart is to see his giggling smiling face every day, knowing that to him...this is all just mighty fine. He is my best medicine.

So...what's a mom to do on a super tiny budget? Get super crafty. (and talk dad into paying for a bouncehouse.)

Here are a few of my favorite frugal decorations from the party.


{posterboard signs}
Easy peasy. I bought a bunch of posterboards from the dollar store and cut them up like this. I will guess that the total cost of these was $10.00 and I made a bunch of them and used the scraps for other crafts.

{the backdrop}
My family is pretty much full of asskickers so even the adults answered the call for superheroes and came dressed to impress. I love this bunch SO much. For this, it pays to have a stepdad in the siding business. I took a big piece of Tyvek and painted a city scene on it. I threw a couple of the homemade posterboard signs on it and viola! we have incredible photos like these.

{cut up comic book stuff}
I'm sure that this is sacrilegious to some people, but I totally chopped up some used comic books. I grabbed the most child-friendly comics I could find at Half Priced Books for 25 cents each. That's a grand total of $1.50, ladies and gentlemen. Then I mod podged them onto some dollar store vases, cut some out for a banner, and backed my favorite full pages with some posterboard.

{the phonebooth}
Hey, friendly local appliance store! Score! Free refrigerator box and leftover paint in my parents basement. BOOM. Free. It's a good thing we had this thing handy because Clark Kent WAS in attendance. The kids LOVED running in and out of this thing. Cardboard box wins every time.

{food table}
This was so cheap I can't even stand it. I used the vases mentioned above, a dollar store tablecloth for the "sky" and cut out a made-up Seattle-ish skyline out of a black posterboard.

{newspaper poster}
A friend posted this link to my wall on facebook the day before the party...but I had to have it. So, I threw it together suuuuper duper fast (using publisher, saved it as a PDF) and uploaded it to Staples online for printing. Want in on the best tip ever? For black and white projects like this, call it an engineering blueprint and Staples will print it for around $3.00. Yep, this super cool project was less than five bucks! Since I wrote it so quickly and didn't take a lot of time to get the design just right, I am going to make a more polished one to hang in Eldon's room.

Of course, there was the bouncehouse which is far from frugal but worth every penny if you can swing it. The kids decorated their own masks (which can be cut out from a pack of foam that you can get at the dollar store) and the grown ups had just as much fun, I think. I made Eldon some sweet new capes to wear, but he insisted on a batman t-shirt and mask from target and well....birthday boy rules.

Here a few more pictures, including a couple of the birthday boy who must have been busy saving the world, because I hardly saw him all day.

THANK YOU to all of the superheroes in our lives, who swooped in to make Eldon's party a success. This theme was so much fun we may be repeating it in the future.  

it's not fair.

 

I am finally arriving at the revelation that other people do when they face huge obstacles. Many people don’t even realize what it is and I have been looking deep inside of myself trying to figure out how a person can be the happiest they have ever been, while simultaneously trudging through one of the hardest things they have ever been through.

 

 

My ah-ha! moment came to me after  scrolling through a newsfeed of ridiculously petty complaints and comparisons. Some people are just complainers by nature, and I know a few of those. The “one-uppers” and the “my life is harder therefore I’m stronger” competitors.  The people that think they have to work harder to achieve what the rest of the world apparently just gets handed to them.

It is funny to me that in every family dynamic and in the world at large, most people think they work harder than everybody else. It’s the classic husband and wife, both doing separate chores, both thinking “I do everything around here.”

When really, they both work hard.

We all work hard.

The trick is that when you stop worrying about what everybody else is doing, when you stop comparing and focusing on your differences, the work doesn’t seem as hard.

It’s too easy to face a problem and think “nobody else I know has to deal with this. It’s not fair.”

I assure you that everybody else has once battled a demon that you will never face.

We need to stop worrying about fair.

This is how I can find a best friend in my ex-husband, even when I am raising our kids alone.

This is how I can feel PURE joy instead of jealousy when my friends welcome their perfect healthy babies to the world.

This is how I can laugh at the people who dare try to tell me that I don’t work as hard as them, just because I don’t have a “real” job

and how I can relax and enjoy this time with my babies, knowing that if I don’t get called back after submitting yet another resume, that I will just submit more and more until I find what I am looking for, but that until then…I am right where I belong.

This is how that green eyed monster stays locked up. I will not be sitting down to a pity party with that creature any time soon. Instead, I am slowly starving it and saving my scraps for a garden of hope, security, joy, pride, and confidence.

Fair? Fair can suck it. Fair isn’t even real. It never has been.  Fair is just a word, setting us up for unrealistic expectations. I am letting go of expectations. Not in a bitter way, but as a serene and peaceful realization that if I had nothing to compare it to, this would all feel easy and I would enjoy it more.

I am enjoying it more.

 

 

It’s ok to wish. It’s ok to vent and to feel. To get angry when things suck…and I do

but when I stop and force myself to contemplate why I feel that way, I feel that way less.

When Max spits alllll of his medicine out in protest, am I sad because I have to repeat the dose or because most babies don’t have to get medicine shoved down their throats three times a day? I refuse to let it be the latter, and when left with the original dilemma…that hardly seems like something worth worrying about.

 

There is no room for jealousy in this life. There is no room for comparisons, resentment, or worrying about fair.

Put the bitterness in your pocket and save it for something worth spending it on.

Let it go. Be happy. Stop worrying about what your neighbors are doing. Stop worrying about fair.

things my 5 year old learned from being read to.

 

I am a reader. I can’t start a book without neglecting my kids and house for at least three days while I power through it. Before you go calling CPS, I may have been over exaggerating a bit. The house suffers. That part was entirely true. My kids are fine though, I swear.

Much of what I know has crept off the pages of a book and into my mind where it lingers and occupies my brain for awhile, sometimes forever.  I want my children to be endlessly curious, always seeking out more information. I want them to escape into another world and believe in things that they cannot see. I want them to see things from another point of view-one far away from home or even reality.

I want them to be readers.

Together we have soared to Neverland, howled at the moon with Wild Things, explored the hidden world inside of a peach, and learned a lot about friendships and bedtime routines.

 

Eldon is going into Kindergarten this year and soon he will be reading the books to me.  As any parent with school age children knows and remembers, bittersweet doesn’t even begin to cover it. I am so grateful to the world’s children’s book authors for their hand in raising my son and preparing him for the real world. They are unknowingly part of our “village” and as he enters school, I can rest assured that his soul has been nourished by the hands of many brilliant minds and that he has already learned some big stuff.

Here is a short list of such stuff.

 Things my 5 year learned from being read to:

1.       Nobody loves you like your mama. She will always be your biggest fan and when you run off on some island adventure for over a year, she will have hot supper waiting in anticipation of your return.

2.       Some days suck. Nothing goes right and your feelings get hurt. All we can do is look to a better tomorrow because that’s just the way it is…even across the world where the stars hang upside down and the toilet water swirls in a different direction.

3.       People are different but have so much more in common than they think they do. In every country, love is the same and so is hurt. Also, everyone poops. (even bugs)

4.        “You won't lag behind, because you'll have the speed. You'll pass the whole gang and you'll soon take the lead. Wherever you fly, you'll be best of the best. Wherever you go, you will top all the rest….except when you don't.  Because, sometimes, you won't.” –Dr. Seuss

(yep, straight outta the book. We simply do not paraphrase Dr. Seuss. It just isn’t done.)

5.       While some people (and trees) might be happy to give you everything they have, it is always wise to be mindful of how often you take, and always give something in return.  Otherwise, the time will come when all they can offer you is a stump to sit on.

6.       A good imagination, a good book, or perhaps even a purple crayon can take you on a wild adventure, if you’re brave enough. Sometimes you need to adapt and solve problems on your own if you are going to reach your destination.

7.       Caterpillars have no self control whatsoever. They just eat everything they can find until they feel like crap.

8.       Stay positive. Some things are HARD work. Keep at it, and remember that if you think you CAN, you can.

9.       Having an overabundance of something (such as rainbow scales) won’t make people like you. To get good friends, you have to be one and spreading the wealth makes every fish happier and the sea even more beautiful.

10.   YOU are special. There is only one you in this entire world. YOU are enough. Just be yourself and don’t ever try to act like someone else’s “you.” It never works, and people like you just the way you are anyway.