I was ok with Holland

When I first shared with everyone Evan’s diagnosis when I was still carrying him, many people shared a poem called “Welcome to Holland” with me about how it feels to raise a special needs child.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

 

 

It’s true.  You don’t think about how different your life will be with a special needs child….how incredibly blessed…the absolute joy it can bring…along with the hardships that inevitably accompany it.

So, I came to terms with “going to Holland.”  I bought the guide books, researched Trip Advisor, spoke with people who had been to “Holland.”

The “Holland” I’m referring to is the congenital heart defect that has a solution…that is repairable…one that still causes anxiety…but one that people who have it or have children that have it encouragingly say, “That defect is 100% fixable.”

So…I was ready for our Holland.  I did all the research like any good parent does.  I was ready for the turbulent ride there…but felt solace in knowing that once we got there…everything would be ok.

Enter in surgery day…

Our world was turned upside down a few days ago when our surgeon was not able to repair Evan’s heart.  We went from “100% fixable” to yet another surprise (my boy thinks he’s cute with all these surprises he’s throwing at us…) to a palliative plan.

Scary stuff.

No one knows what the future of “single” ventricle kids looks like.  Don’t get me wrong….there is so much hope.  Technology is changing daily.  Leading centers in the nation are pushing the envelope in regards to surgical interventions…research.  Innovations in regards to stem cell research and transplantation.

But, it’s a scary world I’m suddenly in.  I don’t know what this means for Evan…for anyone who lives in this world.  We hold onto hope that the first generation of the 3 stage surgical route (Norwood, Glenn, Fontan) is now living full lives into their 20s and 30s.

I don’t know what this means for Evan because he’s so incredibly…special.  Yes…he has a “single” ventricle…yet he has two pumping ventricles…unlike my dear friends who have hypoplastic right heart or hypoplastic left heart syndrome.

It’s a hard pill to swallow.  Don’t get me wrong…I can’t tell you how incredibly thankful I am that Evan is still here.  I’m so thankful the surgeon had a plan B…some kids with Evan’s diagnosis don’t have surgical options right away and need a heart transplant from the get go.

The Heartland has rallied around my boy.  Held me up during this time.  Offered me words of encouragement.  Sharing stories of their kids who’s hearts aren’t whole.  Showing off pics of their perfect creations that live their lives with a half a heart…but gosh darn it…they live their lives to the fullest.

I’m taking time to grieve and accept this new journey I’m on.  I know many moms that would give anything to still have their warriors here….would happily have their Angels here with hearts that weren’t whole.  So…I’m trying to arm myself with guidebooks to this new place we’ve entered.  I’m planning a girls trip with my Heart Mamas as they guide me through this…with our virtual Happy Hours and lots of sessions where I’m often crying in fear for my boy and our new life.

But, I’m on this new journey…with my best boy in tow.  And that’s the most important part.  That my boy stays on this journey with me, his Daddy and his big sister….for as long as God allows.

I don’t know this world I’m suddenly in.  I was ready for Holland.

But, it doesn’t mean this place won’t be just as beautiful.

 

Comments

  1. Praying for your sweet boy — love this post my friend!

  2. This poem is one of my favorites. Beautiful post Czarina!

  3. Emma's Nana Jana says:

    Beautifully said!

    Sometimes it’s difficult, reading the road signs in unfamiliar characters and attempting to understand the new language that is neither Italian nor Dutch.

    But heart parents like you (and Scott and Sarah) learn it rapidly … and very soon, you call it your own language and give tours along the countryside, interpreting the road signs for new travelers as they arrive!

    You all – with those Heart Warrior babies of yours – will name that country as your own … who knows what it’s called … Heartopia maybe (the utopia created by God for heart families to meet, greet, and share!). It is a scary place at times, that is, until you look around and see all the smiles, all the <3 s, and all the "family" who welcome you with open arms, a tear or two, and a "we can do this … together"!

    Happy travels! (And Hugs galore!)