THE UPSTATE UPDATE

2+2=4, but add one more to make it 5!

2012-02-14T16:22:00.000-08:00

Go team!

2012-02-14T06:47:00.001-08:00

Ryan stalking the Paladin at the recent Furman game.

How many pictures can I take of one kid doing school work?

2012-01-12T09:04:00.001-08:00

I'm not sure, but I'm sure I'll stop when I no longer feel this need to prove that Ryan's actually doing very good work!

Working on his own...

2012-01-09T06:44:00.001-08:00

My goal over the past few months has been to get Ryan to work more independently and here he is working on a handwriting worksheet while I get a few things done in the office.

Class Act.

2012-01-05T15:32:00.001-08:00

Our Fancy Christmas Dinner.

2011-12-25T14:19:00.000-08:00

Rourk and Ryan getting into the Christmas spirit!

Lilly and I got out our fancy dresses for Christmas dinner.

The look on Ryan's face when he realized that mincemeat pie isn't the same as strawberry pie.

Christmas Morning.

2011-12-25T14:15:00.000-08:00

Christmas Break.

2011-12-24T14:10:00.000-08:00

The kids and I made a gingerbread house today. It was a lot of fun despite the sugar rush they experienced from insisting that they taste all the decorations.

Merry Christmas.

2011-12-24T03:13:00.001-08:00

Abundant Life Christmas Program. December 15, 2011

2011-12-15T14:08:00.000-08:00

Still hanging on to Dolly.

2011-12-14T18:14:00.001-08:00

The Great Leaf Pile.

2011-11-13T13:18:00.001-08:00

Number Five

2011-11-13T13:16:00.000-08:00

Family Tradition.

2011-11-04T09:43:00.000-07:00

Every year since before Rourk and I got married we have been taking a picture with our pumpkin. This is like the 18th picture or something like that. I'll have to scan and post the others soon. It's a hoot to see all of us over the years!

Fall Festival at Abundant Life.

2011-11-04T08:18:00.000-07:00

Halloween 2011

2011-11-04T08:14:00.000-07:00

The Puppy and the Pirate.

Pumpkin Carving.

2011-10-30T16:25:00.000-07:00

In-home skating rink.

2011-10-28T11:56:00.000-07:00

How long will it stay straight?

2011-10-28T05:07:00.000-07:00

After a week....

2011-10-21T16:44:00.000-07:00

After a week of having a cat in the house there has been no sneezing, coughing or hacking from Rourk. I take that as a good sign that he's not going to be allergic to Meow-Meow. It probably sounds crazy to say this, but I swear that cat was meant to be with our family. She is the most easy going cat I've every met! Look at her there in the picture. She's in the middle of our chaotic playroom dozing while the kids are watching a movie. I think she loves them as much as they have fallen for her.

Emily Rapp's Blog

2011-10-20T18:04:00.000-07:00

http://open.salon.com/blog/ronansmom

Notes From a Dragon Mom

2011-10-20T17:28:00.000-07:00

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.

Santa Fe, N.M.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.
I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.
How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?
Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.
Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.
We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.
Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.
All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.
But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.
But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.
Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.
NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.
And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.
I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.
But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

Lilly makes Meow-Meow a house.

2011-10-18T16:42:00.000-07:00

Homework.

2011-10-18T16:39:00.000-07:00

Some nights it take all of us working together to get homework done. Rourk and I were playing tag team tonight to get Ryan to finish his worksheets.

That string...again.

2011-10-16T16:52:00.000-07:00

Tuckered Out.

2011-10-16T16:48:00.000-07:00

After playing with R and L all afternoon Meow-Meow is all tuckered out. So far everything is going well. She is so easy going and that's saying something since Lilly had toted her around for the last 24 hours.

Meow-Meow.

2011-10-15T12:49:00.000-07:00

How can you be eight?

2011-10-12T10:19:00.000-07:00

The toothfairy visits again.

2011-10-09T10:18:00.000-07:00

R and L at gymnastics.

2011-10-08T10:10:00.000-07:00

Fire Safety.

2011-10-07T18:50:00.000-07:00

Sparky

Ryan practicing going to his "meeting place."

Ryan with r2d2.

This was Ryan's favorite part.

Ryan was serious about the foam.

Ryan and several student from Hidden Treasure attended the fire safety event at the Parker District Fire Department. Everyone had a great time, but my favorite part was the foam they created at the end.

All Smiles.

2011-10-06T06:08:00.000-07:00

Roxy Red Fox arrived today and just as I predicted Lilly is all smiles.

31 for 21.

2011-10-05T16:21:00.000-07:00

I am not promising that I'll keep up; I am already four days behind. And, I am certainly not promising 31 posts, but I couldn't let Down Syndrome Awareness month pass me by and I certainly could not forget that this is the 5th annual 31 for 21 event. So here I am! Follow this link, and hear more!

Down Syndrome Awareness Month: 1981-2011!

2011-10-04T16:34:00.000-07:00

This October marks 30 years of Down Syndrome Awareness Month, a time to celebrate the achievements and abilities of people with Down syndrome!

Fall for Braces.

2011-10-01T14:01:00.000-07:00

Lilly went up and down this slide at least 100 times.

And Ryan must have stood in line at the rock climbing wall for 20 minutes without the first complaint.

Each year Dr. Summers has his annual Fall for Braces. I confess I haven't met Dr. Summers personally, but I'm pretty impressed with the event and all that he puts into it each year. Ryan and Lilly had a great time and according to Rourk they'll be future orthodontic patients one day.

Fancy Faces.

2011-09-30T07:04:00.000-07:00

Ryan

2011-09-29T17:09:00.000-07:00

Get it while you can.

2011-09-25T15:30:00.000-07:00

I learned a lesson on our trip and that is to go ahead a get your daughter a souvenir if all she is asking for is an $8.95 fox stuffed animal.

Upon our arrival at Niagara Falls we stopped at a visitor's centre to pick up a map of the attractions and as soon as we walked in the door Lilly spotted a fox stuffed animal and asked for it. I quickly told her she should wait because she might find something else on our trip that she liked better. I explained the whole weigh-your-options concept to her and she seemed to be okay with this. Rourk backed me up and I promised her we'd get her a souvenir before leaving Canada.

She wasn't annoying, but she didn't relent about the fox. She asked about it several times, several times a day that is, but Rourk and I agreed that we'd have many chances to get something in Toronto. Somehow that didn't happen and just our luck when our days became numbered we couldn't find a fox. I started kicking myself because we had driven by that vister's centre three or four times before we left Niagara Falls. It would have been so easy to run inside and purchase the fox, but I believed in our theory and stood firm. In desperation we hit every toy store in Stratford the night before leaving the country and I even tried to persuade her to get a beaver and at one point a skunk, but she wouldn't hear of it. Lilly wanted a fox. She wanted a fox so much that she marched up to an employee in one store and asked for a fox herself. You know, I have to respect a girl that knows what she wants in life.

We never found a fox.

And you know what happens whens you're me and you can't find a fox in Canada and you are getting closer and closer to the border and your daughter says, "You said we'd get a fox in Canada!" You kick yourself a little more about not stopping in Niagara Falls, and then you explain the internet to her and you change your promise. You promise that you'll order her one once you get home. She didn't let me forget this either. We weren't home an hour when she asked me about her fox and the internet. In her calm, mild-mannered way she demanded that I sit down and get her that fox. She sat me down at the computer, pulled a chair up next to me and carfully decided after looking at a dozen or so foxes that she wanted Roxy Red Fox.

I guess I could have used this moment to explain to Lilly that I did my best to find her a fox and that we don't always get what we want in life, but that just didn't seem right. It didn't seem right because my daughter was, well, humble in her desire to have a fox. We walked all over Niagara Falls, we went into the gift shop at the Butterfly Conservatory, the Toronto Zoo, the African Lion Safari, several shops near Marjorie and Barry's house and numerous, cool toy stores in Stratford and she didn't once ask for anything else. I guess it goes back to her being sure of herself and what she wanted and I am proud of her for that. So in a few days Roxy Red Fox will arrive it our house in an Amazon box and I think it's fitting that Amazon boxes always have that happy face on them because it will be a happy day in our house indeed.

Family Vacation.

2011-09-25T10:02:00.000-07:00

After 1880 miles, 32 hours in the van, 10 states, 2 border crossings, 1 state park, 6 hotels, 5 swimming pools, 3 nights with our awesome cousins and hours of fun we are home from our trip to Toronto and the surrounding area. I'll admit that there were moments that were tough with the kids, but if you haven't considered taking a road trip with your children then please add it to your list. It is a trip you won't regret!!

The Trip.

2011-09-25T10:00:00.000-07:00

Click here to see a map of our trip. On our way to Toronto we took an eastern route and then on our way home we decided to go through Michigan and Ohio. When you are driving over 800 miles one-way a change of scenery seemed important to us. I am so glad that we did this. We also got off the interstate near Erie, Penn and drove several miles on the Seaway to see the vineyards and the beautiful views of Lake Erie.

Hawks Nest State Park, West Viginia.

2011-09-25T09:59:00.000-07:00

We made a brief side trip to Hawks Nest State Park in West Virginia for a picnic and to give the kids a chance to stretch their legs.

Lake Erie.

2011-09-25T09:57:00.000-07:00

Crossing the Border.

2011-09-25T09:53:00.000-07:00

Niagara Falls on the Canadian side.

2011-09-25T09:45:00.000-07:00

We walked to the falls on Sunday morning and ate lunch overlooking them. The weather was perfect! I won't bore you with all the details of the day, but that evening we walked down for a second viewing of the falls and Lillys said, "Not that again, it's just a bunch of water."

Rainforest Cafe for Dessert.

2011-09-25T09:42:00.000-07:00

Butterfly Conservatory and Floral Clock

2011-09-25T09:40:00.000-07:00

We visited the Niagaral Falls Park Services Butterfly

Conservatory and the Floral Clock. We've been to several butterfly exhibits and this one was by far the best.

Lilly was thrilled that she was able to get a butterfly to sit on her finger.

Friends travel to Canada.

2011-09-25T09:39:00.000-07:00

I'd be remiss if I didn't include a picture of our friends traveling with us to Canada. You'll see them in many of the pictures I've posted, but I thought they needed an entry just for them. This picture was Ryan's idea and they are sitting on a hedge in front of the Floral Clock.

Fort George.

2011-09-25T09:37:00.000-07:00

Lilly took her "map holder" job very seriously.

Lake Ontario, Niagara-on-the-Lake and Welland Locks.

2011-09-25T09:35:00.000-07:00

Lilly entertaining herself with a stick and dirt while Rourk and I enjoy the view of Lake Ontario.

I could have spent an entire day wandering around the shops in Niagara-on-the-Lake.

We were lucky and got to see a couple of ships pass through the Welland Locks.

Visiting with Marjorie and Barry.

2011-09-25T09:34:00.000-07:00

Ryan and Lilly paused long enough for a quick picture with Marjorie and Barry on the front steps of their beautiful home in Toronto. A special thanks to both of them for hosting us during our stay. I'm still thinking about the fresh pasta from Green's and my shopping trip with Ryan and our lazy day at your house on Wednesday.

For those of you keeping track of the family tree: THP & Caroline Alice (Marks) Lamb --> Lenore --> Arlee --> Rourk. Thus Rourk is Marjorie's first cousin once removed (just like many of the rest of you).

Toronto Zoo.

2011-09-25T09:27:00.000-07:00

African Lion Safari, Cambridge.

2011-09-25T09:26:00.000-07:00

The kids loved the peacocks.

That's Lilly the elephant.

I wonder how many fools have broken this rule while visiting the park?

We looked over and as soon as this van stopped the baboons jumped up on top of it. Let's just say that we didn't stop and give them a chance to climb on the van.

That's a Toyota Corolla behind the rhino. He was much bigger than the car and there were three others at the edge of the road that you can't see in the picture. Those guys were pretty intimidating.

Stratford, ON and going home.

2011-09-25T09:20:00.000-07:00

Our last stop before heading home was in Stratford, Ontario. Rourk's parents were there for a family gathering ans to see their cousin, Tom Rooney, play in the Merry Wives of Windsor. It was also Rourk's mother's birthday so we had a quick dinner with them to celebrate. Unfortunately we didn't get to see much of the town or any Shakespeare, but it was a nice break before heading home.

Picture Day.

2011-09-14T07:53:00.000-07:00

Did I tell we have carrots?

2011-08-06T09:01:00.000-07:00

It wouldn't surprise me to learn that we've pulled hundreds of them since May. This is just one of three bowls full that Rourk gathered the other day. And to think, I don't really like carrots.

2011-07-30T14:12:00.000-07:00

Canoeing on the Saluda River

2011-06-18T09:40:00.000-07:00

Cousins.

2011-06-03T13:48:00.000-07:00

Skywheel in Myrtle Beach.

2011-06-03T13:35:00.000-07:00

2011-06-03T13:34:00.000-07:00

Crabby Mike's, but Mike is not crabby.

2011-06-03T13:33:00.000-07:00

Evelyn's Baptism.

2011-06-03T13:30:00.000-07:00

The Important Ones.

2011-06-03T13:28:00.000-07:00

Pink.

2011-06-03T13:23:00.000-07:00

Pink with just a touch of ketchup and mustard

Ready for summer.

2011-05-21T15:36:00.000-07:00

It's Halloween everyday.

2011-05-21T15:33:00.000-07:00

Visitors

2011-05-21T15:31:00.000-07:00

We've have two Mallard ducks visit us for breakfast and dinner the past few days. They've discovered the sunflower seeds in our bird feeders.

Banana and Cheese Sandwich.

2011-05-21T15:28:00.000-07:00

It isn't something I'd eat, but Ryan has been making his own sandwiches lately and a favorite is banana and cheese.

2011-05-15T15:17:00.000-07:00

Baby Take a Bow.

2011-05-15T09:22:00.000-07:00

Lilly's Spring Sing.

2011-05-07T06:30:00.000-07:00

End of another year...

2011-05-07T06:27:00.000-07:00

Ryan just finished his third year at Foothills Gymnastics! Next year he'll move up to the competition team; I can't wait to see him compete and improve his skills.

Happy Easter from the Freeman Family.

2011-04-24T10:39:00.000-07:00

2011-04-24T10:38:00.000-07:00

2011-04-24T10:37:00.000-07:00

Special Olympics Easter Egg Hunt.

2011-04-24T10:35:00.000-07:00

Spring Soup.

2011-04-24T10:33:00.000-07:00

Having too much fun!

2011-04-24T10:31:00.000-07:00

Spring Recital is coming up...

2011-04-24T10:26:00.000-07:00

2011-04-24T10:24:00.000-07:00

Sooner than I thought...

2011-03-11T15:27:00.000-08:00

Just the other day I told you that Ryan would be reading soon. I didn't really mean soon as in a few days, but Ryan's teacher, Miss John, sent this book home this past Wednesday and Ryan can read it. It is a simple book for sure with pictures of our family, Ryan's teachers and classmates, but he can read it. He has even started sounding out words if he gets a little stumped. All I can add is WOW! Isn't that about the best thing you've heard all day?

Circus Day.

2011-03-08T16:32:00.000-08:00

Ryan's school is having Spirit Week and today was circus day. I made Ryan a clown costume and here we are getting into the spirit of things.

The Entertainment for Tonight.

2011-03-06T17:10:00.000-08:00

Follow this link to hear Ryan and Lilly sing their version of This Little Light of Mine.

Unicorns.

2011-03-06T14:16:00.000-08:00

I've made fun of pink unicorns for as long as I can remember. Now look at me, I have a daughter that loves wearing her unicorn costume and coloring them.

Funny Girl.

2011-03-05T16:14:00.000-08:00

Isn't this a universal kid thing?

1969...there abouts

2011-03-04T06:38:00.001-08:00

Stories.

2011-02-27T18:39:00.000-08:00

Several weeks ago I started asking Ryan to tell me a story at bedtime. At first he just looked at me as if he didn't know what I was asking of him and that's when I'd just start a story by saying, "once upon a time." My story would be a random one about the four of us and would usually just recount the events of the day. "Once upon a time, Ryan, Lilly, Daddy and Mommy played baseball in the backyard. It was sunny and warm. Everyone had a wonderful time. THE END. I purposefully kept the stories short and to the point.

Tonight Ryan told me a story.

"Once upon a time. Ryan, Lilly, Daddy, Mommy, Granny, Opa, Max and Eric." There was a "big, brown nest" and a "dragon-dinosaur" Ryan then made a rasping sound as he put his hands in the air like claws. I asked him if the dinosaur was scary and he replied, "No, mommy not a dinosaur, a dragon-dinosaur!" He went on to say, "dragon-dinosaur was flying in the sky" and then "a cowboy with a rope." I asked him if the cowboy roped the dragon-dinosaur and Ryan said, "yeah and then flew away" "THE END"

I think that's the best story I've heard in my entire life.

I wish for just a moment I could bring those of you that don't have children with speech and communication issues into our world. Our world is one that when Ryan was born we just prayed that he would talk. I clearly remember in the hospital saying to Rourk that I hoped Ryan would be a "talker." Ryan was just hours old and I knew enough about Down syndrome to wish for that. So to be sitting here seven years later listening to him tell me a story is awesome.

Any you know what? It kinda dawned on me in the last few weeks that he is going to be a reader, too. Sure, that's something I had hoped for, but not something I dwell on that much. But here he is working on blends and sight words and handwriting and all sorts of other things that I have had to get schooled in just so I can keep up. Imagine my surprise when I pulled out a worksheet with B, L and N blends and he was saying them before I had a chance to even ask him. That's when it hit me that he'll be reading soon.

After Ryan shared his story with me he quickly drifted off to sleep. I watched him sleeping for several minutes and saw for a brief moment the young man that he will become in a few years. It's not the first time I've seen that young man. I saw him the other day sitting at our dinner table and once when he told the lady at McDonald's that he was fine after she asked him how he was doing. I've seen him when he consoles his sister when she's hurt. I thought about these times tonight and then said a quick prayer of thank-you for my son and for the excitement I feel for his future.

Awesome work Ryan!

2011-02-17T15:26:00.000-08:00

From Ryan.

2011-02-11T07:00:00.000-08:00

There is nothing like getting a handmade Valentine's Day card from your child. And these that Ryan made are that much sweeter because the note that came with them from his teacher said that he made them all by himself. This is HUGE! And he is writing his name independently. I am so proud of him and to top it off he had three star days this week. It just keeps getting better and better.

Baking with the best.

2011-02-09T16:13:00.000-08:00

Ryan's class made cookies at school the other day and his teacher was sweet enough to send us pictures. It looks like everyone had a great time and made some wonderful cookies.

Great day at the gym.

2011-02-04T14:21:00.000-08:00

2011-02-04T14:20:00.000-08:00

Wake board makes great snowboard!

2011-01-12T11:27:00.000-08:00

Day Three

2011-01-12T11:25:00.000-08:00

Another day...snowbound.

2011-01-11T06:49:00.000-08:00

Rourk and I have pretty much come to the conclusion that this, playing in the snow, is what we will be doing for the rest of the week. I just don't see how enough of this snow and ice is going to melt to make it safe for traveling. Our road is still a sheet of ice...no sign of pavement. We are making the best of it though by watching movies, do some extra house cleaning. I have a couple of books to read and the kids are getting good use of their Christmas presents. Might as well enjoy it!

Fearless....

2011-01-10T09:43:00.000-08:00

Getting ready...

2011-01-10T09:36:00.000-08:00

Just the beginning...

2011-01-10T05:42:00.000-08:00

We woke to a beautiful snow this morning. I'm thinking there's 7-8 inches out there right now with more to come. The kids are already begging to go out and I am doing my best to postpone the trip out for a little longer.

White Christmas 2010

2010-12-25T12:55:00.000-08:00

First Christmas snow since 1963!!

They are screaming, "Merry Christmas."

Snowball Fight

Christmas Eve Program at St. James.

2010-12-24T15:37:00.000-08:00