A must read

I've been trying to find time to sit down and write a review worthy of this book amidst the chaos that is my life, the whirlwind that goes along with having small children. It is difficult to find the right words to express the gratitude I feel for Jennifer Graf Groneberg's book.

Shortly after our daughter, Lauren, who has Down Syndrome was born, our pediatrician gave us the name and phone number of a woman who had a 3 year old daughter with Down Syndrome. I waited a couple of months to call her. I was completely entrenched in my own grief and inability to get my hands around my life as it now existed. Then there was the intimidation factor of calling a complete stranger, especially given my state of mind at the time. I finally mustered up the courage to shakily dial the numbers and, choking back tears, introduce myself.

What ensued was a 2 hour conversation during which Andrea, the woman to whom I will be forever grateful, laid it all out there for me. Her own story, the good, the bad and the ugly, unabashed and unfiltered. What she gave me was a gift. It was the gift of forgiveness. What had been eating away at me was my own guilt, in addition to everything else. In telling her story, laying herself bare like that, I felt like I was suddenly not alone, that I wasn't the only person who had felt these things, who had gone through this before. It was a healing kinship.

Road Map to Holland by Jennifer Graf Groneberg is just this sort of gift. In sharing her story, with all the painful, self-incriminating truths, she provides salve for the souls of all of us who have been there before or are going through it now. This book is a quiet hand-holding, a gentle whisper of "I've been there and it's okay." With incredible introspect and a deep spirituality, Jennifer shows us with a sometimes self-deprecating sense of humor and prose-like writing what a journey it was, having premature twins, one of which has Down Syndrome. What emerges is a portrait of love, motherhood and the power of the human spirit.

This was one of those life-changing books for me, of which I can only count a few. I encourage everyone to read it, whether you have had a child with special needs or not. It is a beautiful story in its entirety, a testament that sorrow indeed carves out a greater space for happiness.

I was shocked to see them. These small emblems of spring. I'd spent some time last fall planting bulbs, my first attempt, only to find them dug up and half-eaten by some vagrant animal poaching on my work. I'd honestly thought they were all gone.

We had a blizzard a week ago. 20 inches of crazy snowfall in the middle of March. It was gone nearly as soon as it came, melting, the only remnants left behind are soggy muck and a few brown snow piles. This kind of dreary weather can certainly damper the spirits. Its stuff like this though, these signs of spring popping up, lending some hope that sunshine and warmer weather is right around the corner that keeps me going.

Contemplation

Resolve

Okay, so I don't usually do this. I don't make New Year's resolutions. I think you set yourself up for failure when you sit down and write out some list of what you resolve to do in the coming year. There is enough evidence of my shortcomings in my daily life. I needn't look further than the laundry pile, clutter, stack of pictures waiting to be put into some form of organization, extra 10 pounds of "baby weight" that I've never managed to shake, etc. etc. etc. Why, oh why, would I ever make list for myself?

The other problem I have with these so-called resolutions is that, in making them, you forget about all of the unexpecteds that occur in life. Mine is FULL of them. If I ever had a "plan" for what my life would be, I have certainly been steered off course- thankfully so. These diversions to the plan are what keep things interesting, keep us living.

We used to burn them. Yep, that's right, set 'em on fire! My mom, my sister and I and whoever else ventured to join us for New Year's Eve would sit down, make a list of our New Year's "resolutions", put them in an envelope then set fire to them. We never read them to each other, just wrote them out and set fire. I can't quite remember what the significance of the burning was. Maybe it was that we were leaving it up to the universe, our plans, our intentions. Think about them for a minute then let them go, hoping for the best.

At any rate, I'll admit that I do sometimes think about the coming year and what I'd like to happen. I have enough insight into things after having "plans" be derailed, being shifted onto new tracks that are far better than I could ever have dreamt, to know that life is more about the living than the plans.

With that in mind, here I go with some, well, we'll call them hopes- yeah, I like that better- hopes for the new year.

1. Worry less
2. Run a couple of races (stress reliever- helps with #1)
3. Move our 3-year old into a big girl bed because it is just time
4. Stop worrying about time
5. Figure out how do use Photoshop to its full capabilities, as well as my camera- this laissez faire attitude when it comes to owner's manual doesn't always work to one's benefit
6. Schedule more date nights because they are good for our marriage
7. Come to grips with the wait for our referral from China (I don't know how possible this one is but hey, that's why they are called hopes-right?
8. Spend time with our family, extended family and friends. Our lives are so rich and blessed because of them.

Eight sounds like about enough. I made sure not to include the lose 10 pounds thing in there as I think they are here to stay, at least they aren't going anywhere without some painful separation between myself and good food. After two half-marathons, the fact that they haven't left me lends me to believe they just maybe want to be here. Ah- to be in your 30s!

Happy New Year!

The Stuff of Dreams

One thing I am certain of is that I was born to be a mom. It is intrinsic to my soul, woven into the framework of every fiber that is me. I used to wish for it, dream about it from a very young age. I'd find something, someone to mother be it my dolls for whom I spent my car washing money or allowance on -real life baby "accessories"- the teething rings, bottles, etc. or my sister whose own mother, mine as well was, while physically there, was often absent, tending to her own issues. Maybe partly attributed to birth order, circumstances in childhood, I believe that fundamentally, it is just me.

Throughout my rocky beginnings, I knew that someday I'd have my own chance for life to be different. Tabula Rosa. A clean slate. I held onto this with the fiercest of grips. A lifeline as I spun through the tumult that was beyond the control of even the most mothering of children.

I wouldn't change it. Somebody told me once that sorrow and pain carve out a greater space for happiness to exist. When you've experienced darkness of any sort, it makes it next to impossible to take the light for granted. My eyes are still adjusting.

I hope they always are.

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Taking stock. I've done quite a bit this December. We've slowed it down this year, tried to simplify and avoid the pitfalls of previous years' holiday seasons. We're guilty of it too. The mad rush, the overbooked leading to the overlooked spirit of Christmas. I used to have near panic attacks as we got closer and closer to December. I'd look at our calendar, jam packed with various commitments and wonder how we'd do it all, how we'd fit in any time for us, this nuclear family we've created. The stress just kept piling on and piling on until it got to the point where I just was ready for Christmas to be over.

This year was different. We made a decision, a commitment to our little family that we'd slow it down this year, take some time to just be. We decorated the tree at a leisurely pace, I actually managed to get Christmas cards out with a picture of the kids no less, we baked a little, visited Santa, spent time together as a family. It was beautiful. There was peace.

You miss it all if you don't slow down sometimes.

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We took the kids sledding one of the first weekends in December. It was the first real snowfall we had this winter. Unfettered by a schedule, we were able to do it, able to just pick up, throw on some snow pants and boots and go play in the snow.

Rosy cheeks, giggles, screams of delight. My sweet babies. Their father, my amazing husband. Togetherness. A realized dream.

My cup runneth over.

You Turn your Back for a Second...

Halloween

Misconceptions

Ironically, we had just left speech therapy. It was a Friday, a Mommy-Lauren day. Lauren doesn't have school on Fridays while our kindergartner does. We spend the morning at speech therapy then off to run errands together. While they are busy days, it is still nice to have that time where it is just us girls.

A crisp fall day, the sun shining, I was feeling pretty good about life as we walked into the general store that I frequent for groceries and other odds and ends. The cart valet or whatever it is you call that job smiles at my familiar face, looks to Lauren then proceeds to talk to me. "Did you take her trick-or-treating?" he asks. I'm sure he's asking me this as Lauren is looking extra cute today in her ballerina outfit. He's probably wondering what my little princess went as for Halloween. "Oh, of course!" I say. "She was Cinderella."

He leans in conspiratorially, looking at me as if he is one of the few people that knows my plight. "I'm still harassing my wife about this," he says. "We had this little girl come to our door, trick-or treating. My wife says to her, "Say Trick-or-Treat!" She doesn't respond. My wife keeps telling her, "Say Trick-or-Treat!"

He pauses for emphatic knowing.

"She was mute!" he says.

"Oh, okay, huh" I say, unsure how to respond to this bizarre story he is relaying to a woman in a grocery store whom he doesn't know.

He looks at Lauren and nods. I walk away, moving on to the locally grown apples I've come to retrieve. Then it dawns on me. He thinks my Lauren is mute! I am stunned. Now this is a new one. As a parent of a child with a disability, I'm painfully aware of the multitude of misinformed, misguided misconceptions out there. But, mute? Never that one. I'm turning it over in my mind, this new stone that has been cast at me to handle as we finish our shopping.

I know I should go back to him and clear it up. Sometimes it is so exhausting though, having to educate others about Down Syndrome, what it is and isn't. Sometimes you just want to go to the market with your daughter and enjoy the day.

I forget quite a bit that it is visible. Her facial features, I forget that others can sometimes tell. She's just Lauren to me, my sweet, beautiful, ballerina princess Lauren. I wish the public were a bit more desensitized about it, that seeing a child with Down Syndrome was not such a rarity. I wish we could just be sometimes without the intrusive assumptions.

We finish our shopping. Lauren is anything but quiet throughout the store. Mute! Ha! The man is at the checkout by the time we are ready to go. I walk through his lane, at which point I should have corrected him but I'm too tired and just ready to leave. We don't exchange any words beyond the cashier/customer ones. Lauren, having finished her cookie is saying, "Up! Up! Up!" while I'm trying to pay. She wants up and out of the grocery cart. I smile at her. Today she's doing the educating for me.