Tuesday, December 30, 2008


Just an FYI. I believe I wrote about this awhile ago and since I am too lazy to go back and check--and my comp is soooo slow I don't want to waste my time--let me just say that this message you are getting--if it is in email format . . . I am not sending it to you in an email. I am writing on my blog and I have a clever little mechanism set up so that you receive notification. You may still check out the blog site--the pictures are old--but they are still cute. :-)

I am curious just who is out there receiving the notification and if you are all receiving the blog as an email. Could you take a moment to email me and tell me if you are receiving this email and how it shows up? (vsgaboury@aol.com)

Keep in mind you may directly read the blog at http://vsstuff.blogspot.com.

More later! Happy New Year!

Friday, December 26, 2008

Welcome to Holland--poem

Seems the link isn't working so here is a reprint of the poem.

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 guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. 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, 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."

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, the very lovely things about Holland.

Written by Emily Perl Kingsley

Tuesday, December 23, 2008


Our experience without electricity for 5 days has been a pretty big turning point for me. I said that although we were without electricity, we were not without power. I did not feel powerless during this time, I did not feel I could not take care of my family. I felt that I planned as well as I could. I had plenty of water to start with--10 gallons. I had plenty of firewood. I was able to cook on top of my stove. And I have Roger. I was able to think without the interruption and buzz of all things electrical.

It was hard to be in the dark so early in the day and it was hard that it took so long for the light to register in my living room in the morning. The girls went to sleep early . . .and woke up early! :-) We played. We sat and read. We cuddled. One night it was so cold we all slept in the living room. We used the water from our flooded basement to flush toilets. But there was the thinking time.

We learned a lot about our neighbors. Two of our neighbors stayed, one went to a hotel and we all checked on each other each day to see if anyone needed anything. One had a stove and generator, the other bought a generator after the freezing night. Another neighbor had to leave and go to a hotel because they had no way of heating their house and the temperature dropped considerably. It was a bonding experience. I am forever grateful for all of their friendship. I miss talking to them all every day. :-)

I learned about priorities. Heat/shelter. Water. Food. The rest is gravy. I am trying to keep it all in perspective through this crazy time. It is so easy to be overwhelmed by expectations of gift giving and such. But I found that we have a different focus.

We cut our gift giving drastically, due to financial issues. No one besides the kids is getting a store gift. It is just the way it goes. Even though I took a picture this summer for our Christmas card--I haven't gotten them made up. I can't sit down and write a summery letter to everyone. This year has been so tumultuous I can't possibly do it justice and I don't have the desire/energy to sugar coat it. So this is it.

Don't get me wrong--good things happened, but lots of crazy things did too. Katharina's diagnosis. Roger's roll over accident. Our entire backyard had to be dug up for a new leitchfield. Nick's roll over accident. Katharina's therapies. Alex diagnosed with a speech problem. Money issues. Roger working a second job. Granpa (not a typo-that's what I called him) Steiger passing away. My ex-brother-in-law murdered. Lucy dying. And yesterday on Christmas Roger's grandfather (Grand Pepe) passed away.

How does one write some uplifting Christmas letter with all that.

But our blessings are huge. But they are not fluffy. They are not for the casual reader/friend to share. They are defining us. They are strengthening our core and priorities.

The oxygen came back on. We have a beautiful daughter. After her year evaluation this week, it shows progress but still highlights the depth and breadth of work we need to continue to provide. More later.

Roger and Nick, though the crashes were totals and though Roger's accident seriously hurt us financially, not to mention the six staples to his head, both 'walked' away from what could have been devastating accidents.

We are working towards reducing and ridding ourselves of our debt.

Granpa is no longer in pain, but I miss him and I cannot watch a military funeral in a show or movie without sobbing. I miss Lucy everyday. I still look for her and expect that she will put her head on my lap. I dream of her walking down the hallway and wake up sad that she isn't there. I wish beyond belief we had gotten to see Grand Pepe one more time and we will miss his smile and good soul immeasurably.

Our year.

We found strength because we were torn down. We work hard to erase our debt that has been made more painful with this economy. Two kids in college and two with therapies and preschool, have made things even tighter. We work hard to give Kath a normal life while we watch her struggle to pick up a spoon with her claw grip then celebrate her going up and down the two laundry room steps by herself.

Roger and I use a team approach to handling our lives. I am in charge of most of the decisions and day to day things while he works, works, works. We learned that if we don't hold onto one another during this, we will not be strong enough apart to keep standing. Leaning and swaying together has made us able to weather some of our troubled parts of the year.

Not to make this a more emotional writing . . .we are so thankful for all of you. You who have read this blog, called, emailed, prayed, stopped by, lent support. We may seem distant and distracted, but it is not because we don't care about what you are doing or how you are doing. It is just that we have been swaying and holding on, and some days, it takes all our strength to do that. And more.

We are one of the lucky ones. We have four wonderful kids. Chris is a senior at Bennington his year and the excitement of deciding what the next step will be is in our home. Nick is a sophomore who is enjoying his classes and his friends--and video games. Alex is 4 and has begun to love her friends at school, as well as her new Baby Alive who poops and pees (oh brother!). And Kath is right beside her hugging her baby in the crook of her stiff arm, laughing as she and Alex dance and sing in the living room, helping to make cookies (and eat them) and feeding Bucca too many dog treats.

We are good. We are even great. But to a casual reader I may sound like a complainer or exaggerator, but to those out there who are going through this or have, you can probably tap into this vein too easily and understand the angst mixed in with the joy. I try to get both sides across but sometimes I do feel bad--because of my poor writing ability --this may only come across as weighted and sad when the truth is more balanced most days.

So to all. Merry Christmas. Happy New Year. Happy Hanukkah. We celebrated the day with the kids and Abbi in the morning and then Aunt Eileen decided Christmas Eve to take Amtrak up. So we played with Baby Alive who never seems to hold it long enough for Alex to get the diaper off and the baby on the potty. Mrs. Goodbee is the house the boys bought for the girls that talks to them and is 2 feet tall. And Kath telling us she didn't want anymore presents. "Kath, do you want to open another present?" "NO!" The boys enjoying their gifts-Chris putting his new sheets, blanket and comforter on right away and Nick reading the books and pointing out the cool parts of traveling and bridges and watching The Dark Knight (waiting to get his game system back to play his new games). We ate homemade lasagna, tofurkey with dumplings, gravy, potatoes and carrots. Pumpkin pie and cookies were dessert. The pudding was soupy. :-)

We missed the family not with us. We enjoyed the family with us. We hope you did too.
Thanks or joining me for the year in reflection. We do not feel the powerlessness that we felt a year ago. We may have a long way to go, but we are at least starting to be able to grasp onto the sliding deck of this crazy ship we found ourselves on. We do not know what the destination is, but I have water, firewood and I know how to feed my family. And just like that poem I posted that Donna told me about a lifetime ago--we may not be going to Italy, but Holland is pretty nice too.


I have to go learn how to make some cloth diapers for Baby Alive before she eats and pees us out of house and home. Oh, and feed Kath before she eats all my crackers. :-)

See this site for the poem. If I did it right.


Wednesday, December 17, 2008


Today is the first day in 5 days that I woke up to having electricity. I learned A LOT. One lesson was that I will not spend as much of my children's waking hours on the computer. So I will write more about how we handled no electricity but found plenty of power during a difficult situation. And since today is also my birthday (not a plug, just a defining reflection for me)I find myself extremely reflective about my past year, my upcoming year and the way I spend my time.

So . . .more later. Hope everyone well and enjoying their own 'time.'