A Trip to Holland

enjoying an unexpected journey

The School Advocate

The carefree days of summer are officially over in these parts.  Yesterday was the first day of school for my children.  And it wasn’t just the basic first-day-meet-your-teacher.  It was their first day of school in California.  We moved 2100 miles across the country at the beginning of the summer, so we were a looooong way from Indiana.

Now, this is not the first time that we’ve started a new school with Superkid.  We did it in preschool, kindergarten, and again in first grade, when the school that she went to for kindergarten in permanently closed.  So I’ve been around the block a time or two when it comes to educating teachers and administration about Superkid and her potential risks adn needs.  That’s why I was extremely pro-active about getting the word out to our new school about Superkid long before we arrived in California.  It was back in April, when we secured our rental property, that I began a chain of emails to inform the principal and school nurse about the new student they’d be meeting, and offer them the education and training required to keep Superkid safe and healthy at their school.

That meant is was particularly frustrating that, as of yesterday morning when I walked Superkid to the door of her classroom, I had not been able to secure a meeting with ANYONE at her school.  I handed Superkid’s teacher an 8 page packet of information that detailed her medical history, how that medical history affected her time at school, symptoms her caregivers should watch for, emergency contact information, and specific information to give paramedics if they had to be called.  I had two minutes to show the teacher the emergency contact information and say, “We really need to spend some time together so that I can offer you more education and training on my child’s medical issues.  Good luck!”  I spent the rest of the day at home feeling sick about leaving my medically fragile child with people who didn’t have a clue, and making all sorts of phone calls to get her the attention her conditions warrant from the school district.

There are a lot of details I could go into about the situation, but I won’t.  The outcome was positive:  by the end of the school day, I had a teacher and principal who were very eager to meet with me, ask more questions, and set up a time for me to educate and train school staff about Superkid’s unique needs.  Getting to that point wasn’t easy, but I’ve had some practice advocating for my child in the past.  As I mentioned, I’m happy so far with outcome of all of my efforts to advocate for her yesterday.  Knowing that some of you who are reading this are new to the journey of parenting a child with extraordinary needs, I’m going to share a couple tips on the art of advocation.

Tip #1:  Speak Softly and Carry a Big Stick

The little proverb attributed to Theodore Roosevelt basically means, “be kind and diplomatic, but if that doesn’t work, have a great military backing you up.”  I’m in no way condoning the use of violence when it comes to advocating for your child.  But I do highly recommend being able to speak in the calmest, most diplomatic, and sweetest of tones, even when you have to haul out the big guns with phrases like, “equal opportunity education” and “my attorney has advised me.”

As parents, we’ve all shared the experience of having one of our children demand something from us.  More than likely, we’ve dealt with our share of full-out tantrums thrown by children who want their demands met right then.  And there’s no question about it:  kicking, screaming, and tears certainly get our attention.  And if we’re not careful, they also get our defenses down enough that we’ll meet those demands.  But how do you feel after you give in to make a tantrum stop?  Are you exhausted?  Are you resentful?  Are you defensive?  Absolutely!

Well, the majority of the time when you are sorting through the various administrative assistants and receptionists along the chain of names you have to call upon to make anything happen for your child, you are speaking to people who are simply gatekeepers.  They can’t really do much to help you other than open the gate to let you into the inner sanctum of the people who have the power to take action.  The trick is knowing not just how to get the attention of the gatekeeper, but how to get the gatekeeper to let you in.  Plenty of people offer the “mamma bear” analogy when they talk about defending their children.  I’d like to suggest that when it comes to defending your child’s rights and getting them the help they need, it’s more effective to use the analogy of a wolf in sheep’s clothing.

Here’s where speaking softly goes a looooong way.  If you must call places like school offices, state funded programs, or the clinic scheduler, you are going to be speaking to someone who speaks to a lot of upset adults.  On a daily basis.  In fact, that person on the other end of the line probably gets yelled at everyday and really should be paid more to do what she does.  So, if you want to get her attention, you need to make yourself stand out from the crowd.  And you do that by being as kind and nice to her as you would your sweet little grandmama.  You chat with her for a moment, you explain your reason for calling in the most honeyed tone of voice, and you use plenty of pleases and thank yous.  And if per chance she doesn’t open the gate for you, you don’t lose your cool, burst into tears, and scream, “I DEMAND TO TALK TO YOUR SUPERVISOR!  I DEMAND AN AUDIENCE WITH THE HIGHEST POWERS THAT BE AT THIS OFFICE!  YOU HAVE NO IDEA WHAT YOU ARE TALKING ABOUT!!!”

Oh no, that is not what you say!  Take a deep breath, and try saying in the serenest voice just dripping with molasses something like, “Oh, I really appreciate your willingness to try and help.  I guess I’ll have to ask someone else, but maybe you know the name of someone else that could get involved.  Do you think that if I spoke to the school district’s legal office, they’d have a better understanding of the liability issues at stake, here?  Would you mind redirecting my call?”

Well, no one wants to get flack from the legal advisory office for not solving a simple problem that fell within their office’s jurisdiction.  So the person you were just perfectly lovely to is going to jump from her desk and interrupt her boss’s meeting to find out if maybe, just maybe, they can help the nice lady on line two.   As opposed to leaving a sticky note on said boss’s desk that says, “Some crazy lady called about her kid.”

Which brings us to Tip #2:  Know Your Enemy

That little nugget of wisdom comes from a book on ancient Chinese military tactics, The Art of War.  The point being, you can’t just run in and conquer a country without knowing what you’re in for:  the landscape, the culture, the people, the language.  You might get in with your army, but will you come out alive and successful in your campaign if you’ve ignored the geography and culture in your planning?

This military strategy is a particularly good application for dealing with schools and government organizations that you need to work with to get help for your child.  It’s important to know the layout of the land before you go in with guns blazing.  Educate yourself beforehand.  What is the legislation that created this organization or governs it’s services?   What are some of the current issues at stake within the organization?  What types of services are they legally required to offer?  What rights does your child have to receive those services?  Who decides which children get those services and who gives them?  Learn a few key phrases of the lingo, so that you can insert them into conversation as necessary.

Knowing more about the people you are speaking with than “they have something I want” is key to being able to work with them in a way that will benefit your child.   Utilize Google.   You’ll be surprised what you can learn and use to your advantage.  And I don’t just mean photos of the organization’s director frolicking on the beach in Bermuda with underage drinkers–I don’t condone blackmail.  But it sure doesn’t hurt to throw in a direct quote from that director’s speech on equal opportunity education at the most recent professional conference he attended to let him or her know you mean business!

And being able to toss out gems like that in the sweetest tone of voice possible is highly effective strategy.  Trust me.  Also trust me that memorizing key phrases from the Equal Opportunity Act never hurts, either.  Learning the lingo of the folks you are working with can get you well past the gatekeeper.  I can’t tell you how many times I’ve been able to speak with people simply because their secretaries thought I was a medical professional, not a hysteric mother.  And it’s not that I’ve said anything dishonest to give them that impression.  I’ve simply rattled off a few key phrases in a completely confident and professional manner that they might hear from one of their colleagues.  Impression given:  this lady knows her stuff, she must be one of us.  Action taken:  escort her to the inner sanctum.

The bottom line?  It takes a little time and research and even some experience to get results fast in a world that is restricted at every turn by red tape and legalities.  There’s a learning curve.  But with practice, you can learn how to work the system to be a good advocate for your child.

Best wishes to all of you as you advocate for your own children!

 

Pick a Cardiologist’s Brain About Cardiomyopathy

First of all, I would like to reassure anyone who might be wondering that the title of today’s post is not an announcement that Superkid has added cardiomyopathy to her list of health concerns.  Thank goodness.  Sorry if I caused any concern!  But cardiomyopathy is an important term to know, because it is currently the leading cause for pediatric heart transplants.  Here’s a definition of cardiomyopathy, provided by Cincinnati Children’s Hospital:

Cardiomyopathies are diseases of the heart muscle, also known as the myocardium, in which the actual muscle cells and surrounding tissues are sick.

Cardiomyopathies can be primary, meaning the sickness predominantly involves the heart. They can also be secondary, meaning the sickness is a result of another disease or toxin and may also affect many organ systems within the body, including the heart. Patients with cardiomyopathy will most commonly have a heart with normal anatomy.

If you’d like to learn more about cardiomyopathy, and especially if you’d like an opportunity to ask experienced medical professionals questions about it, then you are invited to come along with me today to partcipate in a LIVE CHAT session with a cardiologist from Cincinnati Children’s Hospital.  The chat begins at 7 P.M. EST, and there are still spots available.  You can RSVP HERE.  Cincinnati Children’s is consistently rated among the top 10 for heart care in the U.S., so it’s impressive that we heart families have the opportunity to pick the brains of some of the world’s best during this chat session.

When It Comes to Miracles, Location Doesn’t Matter

If you happen to follow my other blog, you’ve already heard this story.  But, since it has to do with all kinds of things that I like to focus on within this blog (family, miracles, hospitalizations, etc.), I thought I’d share it here, too.  

A Moving Story

Earlier this week/month (I seem to be losing track of time this summer) I promised more stories about our cross country move.  Well, I already told you that the final preparations were up to me and that we made a stop in Moab, Utah for some quick, quality time with our extended family, and that we arrived safely in our new location.

What I haven’t told you is everything in-between.  I’ll spare you most of the boring details, but I have compiled a list of the  unpictured highlights.  (Unpictured because I was so tired I couldn’t even pick up my camera for the first three days after the moving truck left.)

  • Not knowing when the moving truck was going to be able to deliver our household goods and realizing that our things could possibly be in storage indefinitely, I overestimated the capacity of our Toyota Sienna and small trailer and kept WAY TOO MANY THINGS out of the moving truck.  Thinking I could fit them all into our trailer, I had boxes of food and spices from our kitchen, cleaning supplies, tons of clothing and blankets, and all kinds of other things I didn’t want to part with.  In the end, most of it didn’t fit, and we recreated a scene from our pioneer history by handing out all kinds of freebies to our Indiana neighbors and friends that were there to see us off.
  • Day 1 of driving ended in Kansas City.  A huge thunderstorm/tornado warning chased us into our hotel room, a fitting send-off to our life in the Midwest.  We watched buckets of water pour from the sky.  Ironically, that may have been the last real rainstorm the Midwest has seen since we left.  My apologies, Middle America, for starting your drought.  If you’d like to pay for our family to come back for a few days so you can have some rain and a few tornados, we will oblige.  We like you!
  • Day 2 of driving took us across Kansas and most of Colorado.  Thus fulfilling my vow to “never drive across Kansas again unless it is in a moving truck.”  Well, sort of fulfilling it–I was in a Toyota Sienna towing a trailer.
  • Day 3 took us to the family reunion in Moab, Utah.  After leaving the gorgeous mountains and canyons of Western Colorado, we spent the remainder of the drive peering through the haze of a dust storm.  Seriously.

Like I said, we enjoyed a brief reunion in Moab with most of Bionic Man’s siblings and parents.  The dust storm subsided soon after we arrived, so we were ready to do some sightseeing.  Trouble was, everyone was hungry.  Well, in the aftermath of a dust storm, where do you go to feed a hungry group of 21+ people of varying ages, palates, and budgets in Moab, Utah?  Considering what happened later, I think it is best that I don’t name names.  But I will give you a big hint:

Now, I’m not being a food snob, here.  But I am going to say that there are certain signs the Bionic Man and I have learned to watch for before sitting down at a restaurant that help us decide whether or not we should actually eat there.  The signs weren’t good for this restaurant.  The signs were very bad.  But we were with a big group, we were tired, and we decided not to rock the boat.  I didn’t let my children order anything that would be raw–including fruits or vegetables.  Unfortunately, I did not pay attention to what my husband ordered.

And so it was, after a 24 hour period that included a gorgeous morning hike to the famed Delicate Arch and a last minute decision to drive from Moab to Northern California on a very long stretch of road dubbed, “America’s Loneliest Highway,” that the Bionic Man began to experience some stomach pain.  We were almost to Delta, Utah–one of the towns you likely have never heard of that exists mainly to provide a gas station for The Loneliest Road in America–when the first wave of nausea hit my husband.  He spent an hour in a McDonald’s restroom and declared he’d “gotten it all out of my system” and we headed down the road again, making it to a hotel in the very small town of Ely, Nevada for the night.  But it wasn’t out of his system…and instead of driving to our final destination the next morning, I was driving my very, very ill husband to the pint-sized William B. Ririe Hospital in Ely, Nevada.

Now, I’m no stranger to emergency rooms and hospitalizations.  I’m a veteran when it comes to bedside support.  I’ve learned over the years to be calm and unflappable in the face of catastrophe.  But, oh boy, did I ever feel sorry for my poor husband!  And man alive, was I ever worried about getting medical care from a hospital in the armpit of America.  (We’ve gotten used to some world-class care, thanks to our beloved Riley Hospital.)  And don’t even get me started about what a horrible feeling it was to drive away from THE HOTEL MY CHILDREN WERE STILL IN with their ashen-faced daddy crying like a baby.  (That’s the daddy who was crying in pain, not the mommy, even though she might have felt like it.)

But, you know what?  I was reminded of something that I’ve learned before:  miracles can happen anywhere (even at hospitals that are smaller than our former pediatrician’s office).  The doctors and nurses we worked with were so caring and professional.  Even if it was the first time I’ve ever seen a nurse in cowboy boots, they had the pain medication and IVs that Bionic Man desperately needed.  They quickly located two members of our church who came and gave Bionic Man a blessing of healing, which was a great comfort.  The hotel staff at the Ely La Quinta Inn were so unbelievably caring and helpful, reassuring me that they would do everything they could for our family while I was at the hospital.  Later in the day, when Bionic Man was stable and I brought my children to the park outside the hospital to play, another woman heard me updating family members on my cell phone and came over and asked how she could help.  People in Ely were just so nice to us, and I was so impressed by their kindness to strangers.

Ironically, while Bionic Man was in the hospital recovering from severe dehydration and possible pancreatitis due to food born bacteria (the final diagnosis), the children and I ate the best meals we’d had THE ENTIRE TRIP right there in Ely, Nevada.  The french dip sandwiches made with genuine fire roasted beef were insane at The Silver State Diner, where we had an amazing lunch.

And the only other non-casino restaurant in town, Twin Wok, served the best Chinese meal I’ve had since visiting Chinatown in Los Angelos.  In Ely, Nevada.  Who knew it was such a dining destination?

Thankfully, the Bionic Man made a quick recovery, and after an overnight stay at William B. Ririe, we finished the last leg of our cross-country move.  With the GPS informing us that we had 1 hour, 48 minutes to our destination, we  crested a hill to see this

and it finally hit me:  I get to live here.  Well, not there exactly, but within driving distance.  And suddenly all the stress and worry and crazy cleaning and giving away my spices and even food poisoning seemed worthwhile, if it had brought us to mountains and lakes and incredible vistas that were just a short drive away.  We’ve dreamed of being able to take our children hiking and camping and biking in places like this–not just when we’re on big vacations, but whenever we feel like it.   With the asterisked side note to our dream that it couldn’t be too far from a children’s hospital that would have all the services Superkid needs.  And that dream finally came true.

So, over the course of the next few months when you read me whining about California real estate and how hard it is to downsize and all that, just remind me that I’m living the dream, will ya’?  And that miracles can…and do…happen anywhere.

The End

 And one more thing I have to add:  as much as I hated seeing Bionic Man suffer (he was so pitiful, poor man), it truly was a blessing that he was the only member of the family to get food poisoning.  It certainly would not have been fun for anyone else, but it really had to be him.  Bionic Man doesn’t share my enthusiasm for participating in hospital care, so it’s better that I wasn’t the one needing ER services.  It would have been horrible for any of the children to be as sick as their daddy was, but it could have been absolutely catastrophic for Superkid to have been struck with this food born illness.  Due to her metabolic disorder, Superkid is extremely sensitive to dehydration.  Additionally, we’ve recently learned that she has difficulty metabolizing the type of IV fluids routinely used in hospital settings.  It is unlikely such a small medical facility would have had the specialized fluids she needs on hand.  Treating her for this type of illness would have surely required an emergency medical flight to a larger hospital.  It just makes me shiver to think of everything that could have gone wrong.  I’m so thankful she (and the other children) were spared all of that.  Looks like Bionic Man took one for the team, this time.  Good thing he really is Bionic–he bounced back to full health almost immediately.

Superkid Hikes to Delicate Arch

Hello, Friends!  I know, I know, it’s been forever.  I practically dropped off the blogosphere.  We’ve been very, very busy selling our home, moving across the country, enjoying our new (and beautiful) surroundings, and settling into a new home.  Things have gone well, and the only person to be hospitalized in the last few months was Bionic Man (Superkid’s dad), who suffered from a horrible case of food poisoning (courtesy Denny’s in Moab, Utah–yes, I’m naming names) while we were driving across the country.  That made for a lovely layover in the small by friendly town of Ely, Nevada.

Anyway, recently I have begun chronicling some of Superkids adventures in short videos.  We save these for when she’s just done something that other people might not think a little kid with an artificial heart valve could do.  Climbing steep mountains, hiking to an amazingly scenic vista, running in a race…these are all things that Superkid can do, thanks to her artificial heart valve, the skills of talented medical practioners, and a Heavenly Father who works miracles.  We’re awfully proud of Superkid and her courageous heart.

Enjoy the video that we made while hiking in Arches National Park, earlier this summer. You can’t hear what Superkid is saying due to the high winds, so here’s the interpretation: “I’m eight and I have an artificial heart valve. I hiked all the way here to Delicate Arch, thanks to the doctors and nurses at Riley Hospital. My heart works great! Hooray!”

Superkid Visits Delicate Arch on Vimeo.

Lots of other children, like Superkid, are doing amazing things while living with CHD.  You can read some of their stories HERE.

Just a reminder, I’ve decided to limit the content here at A Trip to *Holland to updates about Superkid and our family’s experiences living with congenital heart defects, metabolic disorders, and grief.  If, in the past, you’ve enjoyed crafts, recipes, and home improvement projects at this site, you can continue to enjoy them at my other site, A House in Holland.

With Superkid currently enjoying a season of good health, posts here at A Trip to Holland may be sporadic.  If you would like an easy way to keep up and/or be notified of new posts, feel free to sign up for an email subscription by clicking HERE.

 

Moving Literally and Virtually

Well, you know by now that our family is in the process of a big, cross-country move.  We’ve been packing up our belongings, staging, and selling our home.  And all these changes have helped me solidify some ideas about this blog that I’ve been tossing around in my head for a while, now.

Starting this blog, A Trip to *Holland, has been one of the best things I’ve ever done for myself.  I began it during the unexpectedly rough (and sudden, due to Lily’s death) transition from a mother of young children to a mother of older children.  It gave me focus and purpose during a time when I had none.  It helped me see that nursing school wasn’t for me, but freelance writing was.  And it’s given me the opportunity to meet–both virtually and in real life–absolutely incredible people.

I feel exceptionally grateful for all the good things that have come to me from blogging at A Trip to *Holland.  I love what this little blog has helped me to become and accomplish.  Trouble is, I don’t love what the blog itself has become: honestly, a disorganized mashup of every facet of my life.  I started it intending to focus on my experience as a mother of children with exceptional medical needs.  But along the way I discovered craft and DIY and decorating blogs which appealed to me in their own right, and I started throwing in craft projects and recipes and style inspiration right alongside reports on Superkid’s latest bloodwork.

Is that bad?  No.  It’s my life, it’s my blog.  I can post whatever I want to.  And then Congenital Heart Disease Awareness Week and the amazing Pinterest Challenge happened.  And I suddenly felt silly, posting sugar cookie recipes alongside heart-wrenching stories about families living with CHDs.  I realized that I no longer wanted to serve a mashup of all the facets of my life to the world.  I’d rather enjoy them on separate plates, please.

And, in another instance of perfect timing, our upcoming move solidified my intent to change the way I blog.  I have a lot of adventures ahead of me, and many of them are going to revolve around houses:  selling one, renting one, hopefully buying one.  I’m going to have lot of fun sharing those adventures, but I’ve decided I’m going to share them in a different space.

Nope, this won’t be the end of A Trip to *Holland.  (I plan to keep updating and sharing our journey with CHDs and metabolic disorders, right here, in place of the CarePage we used formerly).  But this is the beginning of A House in *Holland, where I’ll be sharing the bulk of my experiences as a homemaker.  I’m still working on the site design and details, but due to some unexpected opportunities, I’ve launched it already.  Please come visit!

 A House in Holland

If you’d like to keep getting updates on our family and Superkid, you are welcome to “like” A Trip to Holland on Facebook–I’ll let you know when I post here.

Likewise (no pun intended), if you are interested in following our adventures as homeowners, please “like” A House in Holland to stay in the loop of what’s happening over there.

Under Construction

This site is getting spruced up a bit, this week.  Things might look funky or not work the way you are used to for a few days.  Never fear!  I’ll be back with a few surprises and a whole new look.  Here’s a sneak peek:

Hope you are enjoying the lovely spring weather!

The Guessing Game Reveal

If you guessed from yesterday’s post that we’re moving to California, you guessed correctly!

8x10 Going to California

Image:  The Wheatfield on Etsy

The Golden State. [Read more…]

The Guessing Game

Last week, I hinted that I had a good reason for not saying more about what was keeping me away from the blog.  I believe the exact words were, “a very good, very exciting reason, which I should be able to share with all of you in approximately 11.5 days.  With pictures!”

Today’s the day!  And the big news is….

We are moving!

And it’s a big move:  approximately 2100 miles from the lovely suburb of Indianapolis that we’ve been living in for almost seven years.

 How about you humor me by playing along with a little guessing game?  I’m going to show you some of the “points of interest” that will be within driving distance from our new location.  You see if you can guess where our new home will be.  Are you ready? [Read more…]

Holland Returns…Sort of.

Hello, Friends!

I have taken another blogging sabbatical.  I really should stop doing that, shouldn’t I?  This time it is for a very good, very exciting reason, which I should be able to share with all of you in approximately 11.5 days.  With pictures!

In the meantime, I suggest you hop over to Infarrantly Creative and read this week’s 5 Ways Saturday post, which was written by little ole’ me.  (As it is every week.)  It’s a very good one, if I may say so myself, and apparently I’m not alone in that sentiment.  Last I checked, it had been pinned 15,000 times by Pinterest users!  I’m stoked.

We Moustache You a Question…

…are YOU ready for Valentine’s Day?

I am happy to report that everyone at our house who is elementary school IS ready for Valentine’s Day.  Check out these DIY personalized Valentines:

Pin It

We whipped out these funny valentine cards using Picnic (free for EVERYONE, right now!) and I had them printed out using Target’s 1 hour photo service through Shutterfly.  It cost about $10 to print enough to hand out to both classes, BUT if I had been on the ball and used a Shutterfly promo code, I probably could have spent less than $6 for them.

The good news is that I still saved lots of time, because these handy cards already have my children’s names on them and don’t need to be folded or punched out or have stickers added to them.  Hooray!  Here’s how we did it:

I took a picture of each child.

I downloaded the pictures to Picnik.  I used Picnik’s “Add a Sticker” feature to attach the mustaches.  (Many mustache choices are available in the sticker files.)

Then I used Picnik’s collage feature to put the pictures on a colorful background and add text.  It took a whopping 10 minutes.

Instead of candy, my children will be handing out mustaches-on-a-stick along with their Valentines.  Much cheaper than candy, since we have all the supplies we need to make them.  And I’m pretty sure the mustaches will be a hit with their friends.

Have you had any great ideas for Valentines, this year?  If you are in need of any inspiration when it comes to doing something special for your spouse, check out the ideas I shared this weekend over at Infarrantly Creative.