It’s been over three weeks that we’ve been in the hospital with Hollis. The first two weeks are a complete blur, most of it my brain has blocked out due to the extreme trauma we have lived through.  Thankfully, Hollis is continuing to progress and we are even talking about being discharged from the hospital—maybe this week! She’s starting to eat, play and walk more. She is finally off of her methadone taper (used after ICU sedation for prolonged intubation) so she’s getting a little bit more of her energy back. We are doing a “dance” with some of her labs going up and down that we continue to watch closely. Some of the immunosuppression medications she is taking can be hard on the kidneys and after what her kidneys went through we are trying to protect them as much as possible. In order to prevent further damage, the team is switching up what she is taking in hopes to give the kidneys a break and continue to recover. Today is her last day on IV antibiotics so we will watch her the next few days and make sure no signs of infection come up. We are hopeful to leave without a feeding tube but it’s possible we may go home with that for a little bit. At this point, I just want our girl home safely and trying not to stress about the tube. Her team assures us that these are all normal post transplant issues that will just take time. 

Hollis has had some good visits with baby Hazel that have her smiling her sweet smile. She misses Hazel so much and can’t wait to get home to her and her beloved doggies. We’ve been going outside and she’s been riding in her little wagon all around Duke’s campus. It feels so good to get fresh air and step outside of the hospital. It makes me realize how much I’ve taken for granted in my pre-transplant life. As my good friend has said, there is life before transplant and life after— it looks differently than we had imagined our lives looking and we as mothers will never be the same after watching our babies go through what our girls have been through. I hope and pray Hollis will forget the majority of the trauma and pain from the last weeks with time— as everyone says kids are resilient. I just wish my child didn’t have to be SO resilient. 

Another friend shared a poem with me years ago about what it’s like having a medically complex child. It’s hitting particularly hard right now with beginning our post transplant life. Hope you like it as much as me. Please continue to pray for Hollis — she will turn 6 on Thursday and it would be the greatest gift to be home by her birthday! 

Welcome To Holland

by Emily Perl Kingsley

Copyright©1987 by Emily Perl Kingsley. 

All rights reserved. 

Reprinted by permission of the author.

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 flight attendant 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.