Thursday, February 27, 2014

Life Changing Moments

There are certain times in your life you'll never forget. For my list I have amazing memories like the night I met my husband, when he proposed and when I first saw a double line on the pregnancy test! All amazing life changing moments! Then I have other moments in my life, that were life changing as well, but not all sunshine and roses:

The phone call from Lil Miss' pediatrician saying to take her ER to see a cardiologist because her chest X-ray showed an enlarged heart
A week later hearing from Dr. Doom and Gloom there was a possibility Lil Miss couldn't have surgery and we would go into a "honeymoon period".. Until her heart failed her.
Seeing Lil Miss right after heart surgery
Finding out I was pregnant with Lil Man while Lil Miss was still recovering in the hospital
Hearing Lil Man's NBS (newborn screening) came back abnormal
Hearing (again from Dr. Doom and Gloom) that Lil Sis would need heart surgery too

We are entering the final few days before Lil Sis' surgery and I know there are bound to be more life changing moments in my life and theirs. A ton more tears- some in fear and sadness and some accompanied by smiles. I'm ready- ready to see how this amazing beautiful life of mine will play out.

Monday, February 17, 2014

Welcome to Holland

As we count down to Lil Sis' surgery date, I came across this random story inside a medical folder for Lil Man. I always just flip past it. Never took the time to read it- plus the title "Welcome to Holland" never drew me in. But before I placed it in the recycling pile I figured I should read it since I did receive it 5 years ago. Well turns out its a great story. One I think others who have medical children should read. I'm posting it below. I want to make sure to have a copy floating around blog land so I can share when I hear of new parents facing a new challenge. And hopefully helping them through that initial diagnosis- whatever it may be.

Welcome to Holland
by Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability to try to help people who have no shared that unique experience to understand it, to imagine how it would feel. Its like this...

When you're going to have a baby, its like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, Michelangelo's David, the gondolas in Venice. You learn some handy phrases in Italian. Its all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plan lands. The stewardess comes in and says, "Welcome to Holland." "Holland?" you say, "What do you mean Holland? I singed up for Italy. I'm suppose to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in flight plan. They've landed in Holland, and there you must stay.

The most important thin is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. Its 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 group of people you would have never met.

Its just a different place. Its slower placed than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland 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."

The pain of that will never, ever go away, because the loss of that dream is a 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.

So I don't agree 100% with her end, because I think the pain can go away. I think the joy that any child can bring a parent can out weight any "Why me?" thoughts. I love the illustration this story paints. Life might go the way you plan, but take a second look around and see the beauty in Holland.

Tulip festival in WA when I was pregnant with Lil Miss