I have been thinking a lot about the word strength lately. What is means, what it feels like, how do you describe the feeling in words. I have been getting so many emails from people talking about their strength they are finding in themselves and complimenting me on my strength and it occurred to me that strength is like hope, we all carry it inside of us but to what degree we rely on it depends on the scenarios with which we are confronted. One day everything can be fine and dandy and “normal” (whatever that is exactly is defined as, I am not sure since normal is very subjective) and the next day your whole life is upside down and headed in a completely different direction. This of course applies to both happy and sad times but I am thinking about strength in the event that everything changes in the direction that you did not see coming, you were not prepared for and now you are being asked to confront and immerse yourself in something or a situation that you have never been confronted with before.
As it relates to my family I do feel like we have had to dive into our pool of inner strength and learn how to tread water there while we figure out how we are going to get to shore. We have no idea if we should swim North, South, East or West but we know that we need to stay afloat and so we tread water with all of our might and hope we don’t get tired and sink to the bottom. Ironically, this is the first time I could put words to what I feel like I am doing on a daily basis. Treading water so I don’t sink. Sometimes, I get tired and just want to stop swimming (not in a I need to call a crisis hotline extreme way) but that I just want to shut the world out for a few days and stay in bed and stop treading water. But then like a life raft my kids look at me with all the honesty and purity that only babies can have and they keep me treading and buoy me up for a bit longer. I feel like many friends of this blog are experiencing something similar. I was catching up with a very good friend of mine a couple of days ago as recently his father has been very sick. He was in the hospital and is now in a recovery center but my friend has been flying back and forth across the country almost every week to be with his father. He was telling me how he had really identified with the instincts post because he ended really needing to advocate for his father while he was in the hospital. When we were in the NICU, I always told the nurses I felt like I had moved to a foreign country where I had to learn a new language and culture but once I learned it, I found my voice and knew to say when something wasn’t right. My friend J learned this as well, so while we talked, we almost weren’t talking as if the understanding was just there and I felt a swell of relief as he “got it”. Not that I would ever wish “getting it” on anyone, but like so many people who experience divorce, the death of a parent, or loved one, in our case premature birth, you can have sympathy but you must experience it to know true empathy. I am fortunate in that I have never had to be with one of my parents as they we in a hospital (and god willing I won’t have to, I pretend they will live forever, this is the part where I childishly cover my ears and sing la la la la at the top of my lungs), so I could not know specifically what J was feeling but at its core I understand his day-to-day struggle of watching machines, looking for signs, listening to Doctors like a German Shepard as they round to ensure all the information being communicated is accurate (it is not always, so if you are ever in this situation, speak up, do not be afraid, you do not want to be the percentage that was an “accident”) and sitting day after day on the rollercoaster of hope and desperation.
As we continued to talk, he said he thought of me on his last flight back from the East Coast because he saw a poem in the American Way magazine. He started to tell me about a woman who had a baby with Down Syndrome and she didn’t know it until the baby was born. She wrote about communicating her experience to others. It was called “Welcome to Holland”. (Please cue the mysterious and somewhat melancholy musical score) Then, yesterday as fate would have it, I heard from an old friend via Facebook who was telling me of the very challenging times he has had with the now 2 year old son. He said he had been quietly stalking me through my blog and Facebook and shared the story of his son. There I sat at my lunch crying at the table (literally, in Literati Cafe, crying in front of my 2 co-workers – thank goodness they are my friends as well). Of course, now I seem very rude that I was reading the email at lunch, but I literally could not stop reading once I saw it was from him and he too for that moment was so strong and full of hope. As part of his email he told me of a poem that always helps give him perspective about his little boy and at that time I realized the Universe was screaming at me…the poem is called “Welcome to Holland” by Emily Perl Kingsley and my instincts tell me to share it because nothing has ever been able to describe how I have felt better than this poem and oh yeah the Universe seems to be screaming at me:
“Welcome to Holland” ~
“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.”
As I read the poem again, I couldn’t shake the overwhelming emotions that came from reading what seemed like a very simple essay. I cried, several times off and on yesterday and I am crying now as I type this post. This is what I had always wanted to say when people would ask me how I was doing. This is what I wanted to communicate when I didn’t and don’t feel so strong and when I think about the day I had to check out of the hospital and leave my 2 precious babies there. This is what I felt like when I pulled into the garage 2 days later because I decided I should be able to drive to the hospital (you should NOT drive 4 days after delivery, not too mention I had unknowingly developed preeclampsia in labor and was at risk to myself and others – but alas I couldn’t be stopped) and I hit a car in the garage as I pulled into a parking spot. I started sobbing and could barely speak as I tried to tell the valets that came rushing over and the people that so kindly stopped to see if I was ok, that I was in a foreign land and my babies who were supposed to be with me were upstairs on the 4th floor. I was in Holland. This was not the way it was supposed to be.
But now I am here in Holland and I do see the Tulips and I do see the Windmills. And I sat with E last night on the couch and tried to play Patty Cake but as she closed her hands into tight little balls because her sensory disorder makes her not like clapping her hands, I started to again feel like I was in Holland. But I made a choice and I pushed through and finished Patty Cake. And when I did, E gave me her amazing, brilliant smile, like “that was fun mama and just because I don’t like to do it like all the other babies in Italy, I still like that you play with me”. So, as I played with her on the couch, I looked at Q who was playing contentedly with his toys on the floor and he was smiling at us, as he does with his incredible capacity to feel true joy for E when she is happy and smiling, and I realized they are my candles. They light so many candles starting with mine and carry happiness with them wherever they go. So, we will continue our trip around Holland and stop for some tulips and some cheese and this blog is our postcard to everyone that we hope to one day visit Italy but if we don’t that’s ok too and we hope you will let their candles light yours to spread the happiness that they feel in Holland.