My Heart Belongs in "Holland

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 planes 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 of flight plan. They’ve landed in Holland and there you must stay.

The important thing is they haven’t taken you to a horrible, disgusting, filthy place, fully of pestilence 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 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 when I 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 many never be free to enjoy the very special, the very lovely things..about Holland.

I read this often and I’m not sure who wrote but I love it. It’s very true that it’s devastating that the life that you had planned for your child will never be the life that they live and that you live with them. However, I have lived a more fulfilled live having Skylar in my life. I also don’t think that any book can prepare you for raising a child with special needs even if they had one. Nothing prepares you for the pain and suffering that they go through, the hospital stays, operations, ER visits, doctor visits, etc. You’re never prepared for every negative blow that comes or bad news that you’re given. Instead of learning of when they eat solids and can have different foods and when they walk you’re learning how to calculate the amount of calories that they need for their weight and how to work their feeding machine. You learn the different types of g-tubes and seizures and you research the 100 of different things to help them with their seizures. You learn what every cry means because they cannot verbally tell you what is wrong or what they want. You learn what a shunt malfunction looks like and can tell the neurosurgeon before they even do a CT scan. You learn how to crush up medications, administer medications, what a slip tip is in a syringe, and many other things about them. You learn more about IEP meetings that you ever wanted to learn and know the ins and outs of how to get things for your child when nobody else agrees that it’s needed. You also learn to slow down and not take things for granted, appreciate everything, and celebrate even the smallest things.

You also learn about the community that you’ve become a part of. Every parent has their own struggles and their own frustrations but you all have a common bond and can sympathize and vent to each other. Nobody will understand what you go through more than a parent that also has a special needs child and to have that community of people to go to in a time of need is essential. They understand and share your same concerns, fears, and frustrations.

I wasn’t meant to have the life that I once had planned for myself. God had planned something better for me and he’s still planning. I have huge dreams and things that I want to accomplish and do with the things that I’ve learned these past 8 years. The next time that I have children the outcome might not turn out the same. I might have a typical child that develops normally and lives a healthy long time. I hope that I get to experience that but my life with never be the same since having Skylar. I dream of the day that my future children know the kind of person that their big sister is/was. I pray that they get to meet her and get to see how great she is and get to experience the extraordinary life that she’s lived. I want them to witness the many blessings that have been received throughout her life and I want them to see that all things are possible. However, if she is not here when her little brother or sisters arrive they will still know how amazing she was and they will be taught that children like her aren’t to be stared at or picked on they are children that should be admired for their strength and drive and encouraged to keep trying. They will be advocates for their sister and they will voice that she was unable to have.

Going to “Holland” was/is the best experiences of my life and in the future I hope I get a chance to see what “Italy” is all about but I believe that my heart will always be in “Holland”.