Musings: A year post-diagnosis

I started this blog noting that it would be a diary of Charlotte’s journey to the life of a regular kid.

When you think about it, though Charlotte was conceived via some high tech assistance, we started our pregnancy believing that it would be our journey toward “regular” parenting, parenting of the sort we saw our friends enjoying (and being frustrated by!).

On January 28, 2005, we were told that our parenting journey would be quite different than what many of our friends and families were experiencing. We thought, however, that we’d get her through surgery, have a difficult few months and then everything would be okay. After all, my best friend from high school has a daughter who had Tetrology of Fallot (our first diagnosis) corrected in infancy. She celebrated her bat mitzvah last week. My cousin Lynn, celebrating 40-something this year, had Tetrology repaired when she was a baby.

January 31, 2005–we learned that we were dealing with Truncus Arteriosus, a repairable, but far more serious and devastating defect. A defect that would require at least 4 surgeries and had far more complications associated with it.

If I were to put into words how the diagnosis and subsequent medical treatment (mine and Charlotte’s) have changed us, I couldn’t do it any better than Emily Pearly Kingsley did. Here is her essay:

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 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 guidebooks and make your wonderful plans… the Coliseum, Michelangelo’s David, the gondolas of 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!”

The stewardess replies, “There’s been a change in the flight plan. We’ve landed in Holland and it is here 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 is just a different place. So, you must go and buy new guidebooks. You must learn a whole new language. You will meet a whole new group of people you would never had met. It is just a different place. It is slower-paced than Italy, less flashy than Italy, but after you have been there while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandt. 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 is what I had planned.”

The pain of that will never, ever, 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 go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Ms. Kingsley’s essay speaks of children with on-going special medical needs and is posted on a support website for a specific chromosomal order which Charlotte does not have. We are in Holland right now, especially with the eating concerns. Perhaps it’s more accurate to say that we are speaking Dutch in Italy–it is truly embarrassing to try to feed Charlotte in public, it takes too long, and is too painful. Many days I’m locked in the house in order to get her fed (breakfast took nearly 2 hours this morning– 1 hour to feed orally, another 45 minutes to pump what she wouldn’t eat).

We’re hoping that our trip to Holland will be a detour and that our experience will have enriched us. Perhaps it will enrich those of you who take the time to look at our travelogue.

It is important to note (for us, anyway) that Charlotte has special medical needs, she’s medically complex. But, as far as being a “child with special needs” (such as special school, wheelchair, etc.) she’s not that kind of special needs kid.

We still hope to get to Italy and join you all one day. We know that once we’re there we’ll return periodically to Holland, but Italy is the dream!

p.s. Many thanks to Kath and her friend Gina–they sent me Maureen Higgins’ essay To You, My Sisters which led me to this one.

2 thoughts on “Musings: A year post-diagnosis

  1. Good luck with the Mic-key! Eating is a horribly complicated issue for both mom and the baby. It seems simple when it works, but when it doesn’t, there are a lot of complicated processes involved to eat properly and the right volume. I’ve also been embarrased and ashamed by my own inability to feed my own child. Feeding strikes at the heart of what it means to be a mother. But after months of suffering and heartache, most days I truly believe it’s really it’s not our fault. It’s not more our fault than Charlotte’s heart defect or my son’s tumor. It’s just part of who they are.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s