Welcome to Holland

I intended to write this on Friday in celebration of a little bird’s birthday, so this is a little belated.

There is a long list of things that have occurred in our life over the last couple years that we truly believe were part of God preparing us for our journey with Lincoln. I’ll write about these many things some other time… but one is certainly my good friend Juliet.

Juliet is a friend from DePauw and was one of my roommates the first year I lived in Breckenridge. We haven’t seen each other a ton over the last 10 years but I always love it when our paths cross. If someone asked me to describe Juliet I would say FUN! Always positive, a free spirit, a ball of light. Someone who you are just happy to be around.

A couple years ago, I was excited to learn that we were both pregnant and that our due dates were super close together. Our Rosie was born on 4/23 and Juliet’s Lucia was born on 4/26… Birthday buddies! (Happy belated 2nd birthday Lubird!!)

As we were adjusting to life with newborn Rosie in Chicago, Juliet and her husband Jason were in Denver adjusting to life with newborn Lu and learning about a condition called PKS (Pallister Killian Syndrome) that Lucia was born with. PKS is a chromosomal disorder and is so rare that it’s thought that there are less than 200 diagnosed cases in the world. You can learn more here.

I have always felt especially connected to Lucia and Juliet, not only because of our friendship but I think because Rosie and Lucia share birthdays just 3 days apart. Jules has kept a blog following Lucia’s triumphs and challenges over the last two years (which you can read here) and I have cheered and cried along with them. I shared her joy and excitement when Lucia was born. I felt sad with them when they learned little Lu would have such a challenging road ahead. I smile and laugh at the great outfits and bright sunshiney colors Jules always dresses Lu in. My heart breaks and I weep when Jules talks about other families who have lost their child to PKS. I shared their excitement and cheers when Lucia recently sat up for 1,2,3,4,5…10 seconds!!! Yea! I was thrilled to be able to meet the Lubird last summer when I was in Denver for work. I think she already had stolen my heart before I met her, but I loved every minute of meeting her in person too.

While walking these different roads with our girls the last two years I have also had mixed emotions. I don’t know if I can find the words to express it… I think of Jules and Lucia a lot… I think of them when we celebrate Rosie’s milestones and I think of the different paths we’re on. It’s not that I feel guilty celebrating Rosie, in the same way that I don’t ever pity Lucia. It’s just complicated. And emotional. Their paths are just different and both should be celebrated. Both bring great light and happiness into the world in their own ways. I am profoundly grateful for Rosie’s health and I am humbled by Lucia’s spirit and the love of her family. And I am repeatedly in awe of Juliet’s positive attitude and overwhelming joy and love for her girl.

I believe with every ounce of my heart that God put Juliet in my life so I could learn from her. She has been so honest and has remained so positive throughout her journey with Lucia. PKS is so rare and they have brought great awareness to the condition, including now hosting the largest fundraiser for PKS. Over the course of the last two years, I have often said to myself that I wished I had half the positive attitude that Jules shows when facing challenging or disappointing situations. Or a tiny bit of the grace and patience that she shows. Or the scrappiness and fight she has so she can learn as much as she possibly can about her daughter’s condition even though there are so many unknowns. Or the ability to be present and live in the moment and celebrate life without getting dragged down by the nagging “what if” questions about the future.

I have been looking up to Juliet as a role model of how to be a better mom to Rosie for the last two years… What I didn’t realize is that God was using Juliet to teach me how to be a mom to Lincoln.

In the five and a half weeks of Lincoln’s life, I can’t even count the number of times I’ve thought of Juliet and Lubird. When we learned HI was so rare. As there continue to be more questions than answers. When they told us we had to come to CHOP (I remembered Juliet’s blog about their own trip to CHOP and thought “Jules did this… I can too.”) When the doctors started discussing Lincoln post-surgery and the likelihood that he will need to be tube fed … After first feeling overwhelmed I thought “Jules figured this out with Lucia and her g-tube, so I will too…” I am so grateful for my friend, my role model, my teacher, Lubird’s warrior mom who blazed this path with her daughter that now I’m using to guide my steps with my son.

Dave and I don’t know what our journey with Lincoln has in store. We don’t know if his surgery will help him a lot or a little… if he’ll still have significant problems, or if it will cure him all together. We don’t know what answers we will find and what will remain a mystery. We don’t know if he will have challenges for weeks or months or years. We of course pray that the surgery will help him a ton, even potentially cure him, but we just don’t know. We pray and we hope, but we don’t have a crystal ball.

What we DO know is that this wasn’t what we were expecting or what we had planned for when we were waiting for our guy to be born. That’s not a complaint – it’s just the reality that this is different than we expected. The first couple weeks I kept thinking about a post from the early days of Juliet’s blog. She included this reading/story below in a post on Jason’s first father’s day and it really stuck with me. At the time it seemed to capture what I was feeling about the different paths we were on with Rosie and Lucia. And now it really captures my heart and the loss I feel for what I expected to happen with Lincoln. My grief for our “normal” life. But I have an amazing example of a friend who has enjoyed every tulip of her sweet Lubird and the light she has brought to their life and I am starting to really try to focus on the tulips in ours.

Welcome to Holland by Emily Perl Kingsley

When you are going to have a baby, it’s like planning a fabulous vacation to Italy. You buy a bunch of guide books and make all your wonderful plans: the Coliseum, Michelangelo’s David, the gondolas in Venice. You may even 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 has 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 go out and buy new guide books. And you learn a whole new language. And you meet a whole 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 awhile and you catch your breath, you look around and begin to notice Holland has windmills- and Holland has tulips. Holland even has Rembrandts.
But everyone one you know is busy coming and going from Italy…and they are 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 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, and very lovely things about Holland.

I’m so very grateful for God blessing us with my friend Juliet. I’m so grateful for Lucia and can’t wait for Lincoln to meet her (and her soon to arrive baby sister! Yea!) With love and gratitude to the Dawkins family in Denver from the Zapata family in Philly / Chicago… We love you guys!