A glimpse

This post is for those of you that are wondering a little bit of what things are like for me as I try and cope with the way things are and my "new normal"...at least for now. It's also for me to have to look back on because the present doesn't last forever.

My mom sent me a note written by a mother of a child with a disability...

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.


Here is the spin of a NICU mom. (But keep in mind that the difficult journey of a NICU parent while extremely difficult is usually resolved, at least in the norm, by the baby's due date or at least soon after. Most babies that are in the NICU have a path to recovery and how things will be, whether normal or a new normal. That is a luxury we do not have.) 

DESTINATION UNKNOWN
By Leah Fish
NICU Mom

The excitement of having another baby settles in and continues to mount like the anticipation and excitement of an amazing trip. All the wonderful things to look forward to and plan for float around in your head like a dream. Like the "Welcome to Holland" analogy, we start preparing for the best flight. But for NICU parents and families we are told to rush to the airport way before we had our things ready and feel thrown through the doors, barely able to make the flight. It feels that not only has the destination been changed, like the parent of a child with a disability, but feels as though we are still mid flight with the destination unknown. Each story and flight is different. (We have been on this flight not only for the 4 and a half months our sweet Caleb has been in the NICU but for the months I spent in the hospital on bedrest as well. It is unlike anything I can explain.)

Here is our flight while still en route...
The turbulence that has come so many times during our flight has been more difficult than I could imagine. In the beginning I was terrified when the turbulence came. Scared and desperate, wishing I could choose the destination. There have been times when I was sure that our sweet boy was going to go back to our father in heaven. In fact just 2 weeks ago I didn't think he was to stay here on earth. But then the turbulence subsided and evened out...once again.  There are times I feel like, "oh my goodness, I think we may be able to make our decent and even put the landing gear down." Like feeling Caleb has stabilized and will come home soon and I can start planning the nursery. I get comfortable and get out of my seat.  But then the wind changes and the plane takes another dive. More turbulence. Each time it catches me off guard, I'm walking in the isle and have to rush back to my seat. I try my hardest to strap in and remain calm but it's really really hard. It takes more out of me each time. 

With 4 other children you can imagine what that adds to the flight. Leaving them to visit the baby in another part of the plane. Trying my hardest to spend the right amount of time with all of my babies. Not wanting the older ones to feel like I left them when they needed me and were scared. But knowing my time with the youngest could be the shortest of all and wanting to create memories with him too.  It's unlike anything I can compare it to. The worst is when I'm so stressed and trying so hard and I get frustrated and upset with the older ones when they are having to adjust to the commotion and change and trying their hardest to survive the flight as well. 

I look around and notice there are lots of other people on the flight with us. Sometimes surrounding us. Family and friends I can see, others I can feel. It's those people that sit with my children when I'm visiting the baby. It's those passengers that do selfless things for me so many times I can't count.  Sometimes I don't see what they do for me while I'm not in my seat. It's those people who pray continually for me and my family. Lots of them strangers I've never met. It's because of those on the flight I'm able to keep going at times. 

So here I am, a NICU mom and family, mid flight, still unaware of where our destination is. We can't exactly get off the plane. I will say that the terrified feeling is a feeling that doesn't come as much anymore, because I know Heavenly Father knows what is best for each of us. He is the one flying the plane. My savior is his co pilot, there to help and calm me as I go through the most difficult flight I have ever faced. Because I trust in Him and His will I truly want whatever that is for Caleb and our family. No matter the destination. It took me months to get to the point where I really truly want whatever the lord's will is and am willing to submit mine. I got to that place right before Caleb's surgery and it is a wonderful place to be. But it took a tremendous amount of effort and still does each and every day to stay there. What makes it increasingly difficult is that I still don't know where that destination is.

When I wrap up submitting to the lord's will, unaware of what that is, in the love I have for my son I am left with emotions and feelings that span the largest spectrum in the world.  Because of that love for my son I will always have these emotions but have to allow my faith in Heavenly Father's plan to inevitably trump them. This flight is seeming to last forever. However, I know it won't. For now, I have to trust in my experienced, loving, all knowing pilot while gaining strength and comfort from my Savior who is helping to fly the plane. Knowing that they are there the entire flight, along with many others, and will always be with me no matter where we end up gives me strength to continue. 
Once our plane reaches it's destination there will be lots of adjusting. We will have to understand a new country and will even learn a new language. But that is a post for another day. For now, we are still mid flight, holding on.