The Seasons Change and I don't Hate Holland Anymore

Today I sat looking out the window of the EEG room and wondered on what has happened to me, us, Parker the past several many months. I remember that November day sitting in the same chair with the same boy who has changed significantly in the past 6-7 months, but saw yellow falling leaves, and breathed & witnessed heavenly things. Today I saw green, green, green. Springtime. But it's strange this spring, isn't it? I didn't see alot of heaven.

I struggle with feeling hateful. I never hated anything before meningitis. I never even spoke the word hate, not to mention felt it. It's frightening to me to see how sincerely & completely I can love & loathe at the same time... then I wonder what everyone around me loves & loathes, too. What burdens they carry with their shoulders, sometimes apparently, usually not, on a daily, weekly, monthly, or even yearly basis. And time marches on...with heavy shoulders for years & years. In my case it's soon to be 16 months... But who's counting?

Today I went to the EEG lab with Parker & the sun was shining. I didn't even pray the EEG would be good, cuz I knew it would be. Parker is doing great. But when the 2 unusually-tall-for french, gray-haired & bearded, kind-a-loving-and-creepy-at-the-same-time lab techs welcomed me & my boy in his pushchair, they laughed when I told them I loved coming to see them. FRENCH DO NOT GET SARCASM. They were surprised when I told them. They stopped putting on cords & sand & electrodes for a teeny moment, to look me in the eye & wonder why on earth I would love to see them.

Today my sister brought her baby son to a photo shoot. I brought my baby son to see the creepy/loving EEG techs in the sun, but it quickly turned to rain.

Not pouring, but drizzling & gray.... This lasted the rest of the afternoon.

I had to tickle, pinch, prod, pull, shake Parker in the backseat while I drove on the highway with the sunroof and all windows wide open to make it to the EEG room at 3 pm with a non-napped, very sleepy, whiny boy. The techs were surprised by what they saw when PJ quickly fell asleep. This, was not reassuring to me. They asked me alot of questions. I responded with alot of questions. I know enough to know they will quickly say, "Oh, I can't really tell you, you'll have to wait for the Dr to tell you", but their response was not what I was expecting, their body language was not reassuring, even though their words were. "Is he having any seizures? Is he sleeping well at night? Is he making progress? That is all that matters".

Well, he is not having seizures, he is making progress, but he is not sleeping well at night. But I thought it was the climb-factor...

I don't hate Holland anymore. I have been hating it for 15 months. But recently I have come to accept Holland for what it is.

I am feeling that I am crawling out of a deep, dark, cold, muddy hole that I've been living in (often alone) for 15 months. But this month, I feel like I am nearly out of that deep, dark, muddy hole. Sometimes my foot slips, and I feel muddy hands trying to pull me back in, but for the most part of this month, I have been in the light, free from mud, and it feels good. I mean really, really, good. Great, even.

I think we've visited Holland during every pregnancy. The first time we went with John's sister Spring, I took at least 500 pictures of tulips. The tulips come "on", and Europe heads to see them, and it is truly magical. I remember distinctly visiting the tulips with John's Aunt Marie when I was heavily pregnant with the twins. It's beautiful.

But when Parker was critically ill, someone sent us the following story, by Emily Perl Kingsley, a parent of a child with Downs Syndrome and writer and activist for children with special needs:

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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.>>

Though the story is meaningful & touching no doubt to anyone who reads it (handicapped child or not), the more people who sent it to me, the more I began to realize I didn't really like Holland all that much. Nobody does. It's just kind of boring. There is only one time of year that it's really worth going to see, right? And I started hating that story, too.

I hated our predictament. I hated what our story was becoming, the reality of it all was settling in on me.

Until last night. When my college roommate sent it to me again. I re-read it, sort of half-heartedly, (albeit completely), because I truly could not stomach the thought of hearing it or reading it again during many months....But the mud is mostly gone, and I thought about how lovely she is-beautiful, strong, sincere, and how she wants for me what I want for me, how I see that she feels my pain with me, maybe even when she looks at her beautiful, "non-handicapped" children...and I see that she carries it a little on her shoulders, too, my pain, and I loved her intensely more than I already did. And I read the whole story again. And I didn't even hate it.

Thank you, Lori.

Thank you for helping me realize that I don't hate Holland anymore. That, in fact, Holland is a beautiful, even magical place, and that there are many, many beautiful faces in Holland with remarkable stories. Some I have already seen, touched, loved, and in the many days ahead, I will no doubt love more. There are also shining angels in Holland. I've seen at least 2 this week.

And the dreaded winter turned into another dreaded winter, but this spring, I am feeling lighter, and happier, and maybe if its not too late to see the tulips, I may even want to go to Holland again.

In the meantime, I will play in the sun with my kids at Parc Monceau. And I marvel at them.