One blessed year. Thinking back.

Last year.

Today.

Last year on Thanksgiving Eve (you know, the night before the big day) we all drove down to Tulsa for a big family dinner. We got a couple of hotel rooms that night, 'cause who really has room for 10 extra people, including one who comes with oxygen tanks, a sat monitor, and nebulizer?

That night was a long one, for me and daddy. Ralph's sats were really crummy that night and started to trend downward. He was snotty and wheezy and I had left home without the big green booger sucker that I love so much.

It was late and everything was closed. Daddy agreed to stay with Ralph at the hotel while I made a trip to a 24 hour big name drugstore for nose drops and a booger sucker. I was sure that I saw one down the street. Guess. Yep, it was closed. 

And so was the next one that I found. And the next. I must have driven 50 miles in a strange town before I hit the jackpot. It was around 3am when I got back to the hotel. Isn't that the way it goes? Never enough sleep, especially on an important day.

Thanksgiving day, Ralph was not himself. He was very lethargic and slept on the floor most of the day. We made the trip home that evening. As we drove through the city I remember thinking maybe we should just take Ralph to the hospital before going to the house. I figured I should put him to bed and monitor him for awhile before deciding.

I put him to bed and laid down myself. His crib was next to our bed. I had his sat monitor positioned under the crib so that I could see it without getting up or even lifting my head. (I'm certain that I had learned to check his numbers without even waking.) After progressively bumping up his oxygen to over a liter and not seeing any improvement in his sats we decided to take him in to the ER. Here is what I had to say about it last year.

Ralph spent his first Christmas in the hospital. His first birthday. Mother's day. Now Thanksgiving. It was getting to the point that a major holiday wasn't a major holiday if we weren't spending it in the "joint."

It was a short stay, thank goodness, less than a week. And he was discharged one year ago today. He has not had a hospital stay since then! Huge!

Thinking back on those scary, fragile days makes me feel so thankful. Ralph is such a big boy these days. Big and strong. And healthy. Wow, did I just say healthy? From my keyboard to God's ear.

Ralph was so sweet this morning that I just had to get it on video.

Isn't his hair getting long? Did you see him pointing to the music? I just love it!

He sings Christmas songs in church with his Sunday school class tomorrow. It's gonna be interesting and waaaay too cute. I warned the other kids to not let me leave the house without a camera.

Happy Thanksgiving!

Thanksgiving horror!

This totally made me laugh! Make sure your little kids are not looking over your shoulder, OK? I don't want to be responsible for scarring their psyche.

I'll never forget the Thanksgiving we spent at my mom's house when she lived in Kansas City. Thanksgiving with my family is always a big deal. The dinner is big. We use the china. We use a white table cloth. 

It was 1991, I think. Wesley was just a baby. Our little family of three had one bedroom. Family from Illinois stayed in another. Grandma and Grandpa were there, too. It was a busy, full house!

Then...the puking started. I can't remember if it started before or after the big Thanksgiving meal, or what. I DO remember the smell. 

This stomach crud swept through the whole family. The group from Illinois ended up fleeing to a motel room. James was so delirious that he fell down the stairs! Memorable. For all the wrong reasons!

Do you have any Thanksgiving horror stories to share?

I would have normally cropped this photo, but this really shows how tiny she is!

This little pumpkin is starting to crawl! Looking at her on hands and knees it is hard to believe that those scrawny little wrists will hold her up. She looks like a little lady bug.

Frozen pizza and tater tots?

Imagine watching a child open a Christmas present. Oooooh! Their eyes light up. It is something fantastic! Watching them inspect the precious new toy and try it out sends you to a happy place back in your own childhood.

Then someone snatches the new toy away and shoves another gift in their face. No time for playing! There are lots of gifts left to open.

Have you ever experienced this? I have seen it a few times. It always makes me sad. I think we are doing our kids a great disservice by overloading them with Christmas gifts. It takes away from the holiness of the day. It cheapens the gifts themselves.

I've been struggling with simplifying the Christmas season for several years. I've tried, without much success so far, to get grandparents to cut back to one gift per child. With difficult economic times settling in on our country, it seems that many are ready to hear the message of creating a more meaningful Christmas experience.

I encourage you to check out Advent Conspiracy. The concept behind it is to worship fully, spend less, give more, and love all. How can one spend less and give more at the same time? I think it is an example of the law of diminishing returns where the value of the additional stuff you give decreases as you buy and give more stuff.

I'm sure that we all have an example of an especially memorable Christmas or holiday where we did things differently. I remember Thanksgiving 1999 in particular. Thomas was born a few weeks before and I was NOT going to cook a big traditional dinner. We ended up eating frozen pizzas and tater tots. The kids loved it! I'll never forget that year.

Another year when money was extremely tight, I bought a 20lb bag of rice and and some fabric remnants to make rice bag bed warmers for all the kids. (You put these in the microwave oven for a few minutes and you have a nice source of moist heat for your aching back or just to thaw out your freezing toes.) They loved these and had a great time lining up at the microwave every evening before bedtime.

Sometimes when holiday preparations seem overwhelming I think, "we could just have pizza a tater tots again."

What are some ways that you keep your Christmas meaningful and manageable?

**Tomorrow, just for fun: share your Thanksgiving horror stories!**

What a great weekend!

We had a busy and fun weekend. Here are Jordan and Ruby waiting to leave for church. We were actually on time today! Woo-hoo!

Here is the start of the Turkey Trot 2 mile race. Ruby and I took Richard down to the park Saturday morning so that he could run. 

He didn't run quite as fast as he had planned. He is still battling some pesky injuries. Nothing a week of rest can't fix! 

Thomas had his birthday party Saturday night. I even let him invite some friends this year. It was pretty fun. We had cake and ice cream then watched the movie "Up." Of course there was stove-top popped popcorn to go with the movie. Am I the only one who pops corn like this anymore?

Oh yeah. Thomas is a serious, sober boy, but he CAN smile! We all had a great laugh about the flowery wrapping paper!!

Hope you had a great weekend, too.

Is this even OK?

Dad and Ralph were having so much fun last night. But...

Last year in our town, a very young girl with Down Syndrome died of complications from atlantoaxial instability. Her symptoms resembled a respiratory infection, if I remember correctly. Scary. If you are unfamiliar with the term check HERE.

Is this kind of daddy/son play acceptable? Am I being a wet blanket? What do you do with an active kid who is not yet old enough for AAI screening? How could I live with myself if a spinal cord injury was mistaken for a respiratory issue?

I told my husband that I would tape this and ask for feedback. Sorry, I HAD to laugh when Ralph kicked him in the face! So what do you think?

Lydia --> my hero!

Dear Lydia,

You don't know me, but I read your blog today and I've decided that you are my hero. Who ever thought that a little orphan girl in Eastern Europe would be so loved by a young girl the the USA when no one has ever paid any attention to her? And, who ever thought that a young girl like you could could inspire a thirty-something mom like me? Well, you have.

I, too, have a great love for God and for his little ones with Down Syndrome. My heart breaks for the forgotten and discarded ones around the world. Reece's Rainbow is doing a great work and I love this organization.

When I committed to raise $1000 for Maxim for the Angel Tree I was afraid. I was afraid that I couldn't do it. I was afraid that I would let myself and others down when I failed to meet my goal. I was just afraid that it wouldn't make a difference anyway.

Thank you for your childlike faith. What a breath of fresh air! It is what I need. I've been inhibited by what others might think of me. I should only care what God thinks of me. People are going to think I'm crazy! Best wishes and God bless you as you run this race!

Love,

Stephanie

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Please consider whether you can help Lydia reach her lofty goal. 

Happy Birthday Thomas!

I like to call him 'doc.' He is now in double digits! Here is his mad scientist look:


He is a very tidy and organized boy, but he wasn't always that way!

He has incredible eyes. I call them doll eyes. Remember the sparkly glass eyes in the old fashioned dollies?

He's smart, too. He figured out how to start up this four-wheeler at the age of two! By the way, do you see a little bit of Ruby in this face?

I love you Hank, 'doc', doll eyes! Hope I didn't embarrass you too much!

Sensory part II

As an old friend used to say to me, true originality is concealing your source! With that said, I'm borrowing heavily from others and mixing in my own experiences today.

Have you ever been extremely tired, but needed to drive somewhere? Either on a long trip, or just trying to get home late at night? What do you do to stay awake? What do you do to keep your focus?

Turn up the radio. Sing.

Roll down the window. Turn on the AC.

Drink something. Chew ice.

Eat something. Crunchy Cheetos? Even better - sunflower seeds which keep your mouth busy!

You are giving yourself sensory input in order to stay focused on completing a boring task!

Now think about a child who is losing focus in school. Could a little sensory input make a big difference? Do you know any pencil chewers? Hair twisters? Toe tappers? We all do these things from time to time. Some of our little "things" are harmless but some are destructive and attract the wrong sort of attention!

The trick is to find ways to provide enough of the right kind of sensory stimulation without destroying anything or making a spectacle. I've heard lots of good things over the past few years about having kids sit on exercise balls instead of a typical chair. That makes me think back to of all the boys in school who would tilt their chairs back and rock on the two back legs. I used to think they were being naughty and dumb. Maybe my teachers thought the same thing because they would always get into trouble for this. Now it's clear to me that they were just trying to stay focused and needed the kind of input that could easily (more safely?) be provided by sitting on a ball.

This makes me wonder if many of the ways our children get into trouble, or just irritate us, are examples of sensory needs not being met. Maybe we (*I*) should view this as an opportunity to help them find appropriate ways to meet those needs.

Try chewing on gum, a straw, or some food-grade plastic tubing (which you can cheaply obtain from any hardware store) instead of eating your shirt sleeve. Or chewing up your pencil. Or chewing your hair. Ick.

What about the child who cannot tolerate certain sensations? Like shirt tags, snug clothing or haircuts. The obvious answer might be to avoid or remove the offending sensations. *Disclaimer - I'm just thinking out loud here, because I'm NOT an expert* What about providing more and different input? Counter-intuitive?

I have heard it suggested to give a reluctant child a haircut while they are sitting IN a tub of rice or beans. That reminds me of what I tell my kids when they have itches or they bug me for snacks between meals - a dog in the hunt doesn't feel the fleas! 

I'd love to hear your ideas.

I learned something that I already knew.

As children we learned about the 5 senses in school. You know, hearing, sight, smell, taste and touch.

Today, thanks to Sarah Bommarito of The Therapy Spot, I learned about 2 more senses: proprioceptive and vestibular. Of course, us moms really already know about these extra senses. It's instinct. But sometimes it is good to know there is a name for those things that you've been aware of but couldn't put a finger on.

Proprioceptive. Sensors located in the joints and tendons enable a person to know the location of each part of the body. The Romberg test is a test of proprioception performed by standing with feet together with eyes closed. Those with proprioceptive loss, or lack of development, will be able to stand still with eyes open but will sway or fall with their eyes closed because they are unable to keep their balance.

Pressure on the joints and tendons provides input to this sense. A newborn baby with arms and legs flailing is unsettled and in desperate need of proprioceptive input. This baby can be calmed by providing input in the way of swaddling. Moms have done this for ages! Some people find that they sleep better at night with a heavy blanket (providing input).

Vestibular. Sensors located in the inner ear facilitate awareness of the body's position in relation to its surroundings. In my mind, I simplify this sense as one of movement. As moms, we know that our babies are calmed by movement (vestibular input). Which of us has not done the "mommy sway" as we attempt to calm a baby in our arms? Oh, and keep that shopping cart moving, right?!

I encourage you to look into different ways to satisfy your child's need for sensory (all 7 senses!) input. If you are dealing with a child who has suffered sensory deprivation due to hospitalization or institutional care, seek assistance from a therapist trained in multiple sensory integration. 

The other day I wrote that no one is too far gone and no one is unlovable.

It's the truth.

But do I believe it?

Am I willing to live my live in a way that shows that I believe it? What could possibly be holding me back?

Check out Katie in Uganda. She is a single Mom and has adopted 14 children. Oh, and she just turned 21 about 2 weeks ago. At first, I'm tempted to say that she is an amazing woman. A real saint!

But, then I recall what people have said to me..."oh, how do you do it?" and "you are a real saint!" or "I could never do it." (Remember my what-not-to-say post from last month?) And it dawns on me that when people say they can't, they usually mean they won't.

So here I am tonight wondering what I would and would not be willing to do. As Katie said,

"As believers, we should already KNOW our calling; it is to love the Lord and love our neighbors by caring for them in whatever broken state they are in. When He said that "the poor will always be among us" I don't think he meant that as an excuse not to worry about it but as a reminder that there is ALWAYS a neighbor, no matter where we are, in a worse condition than we are. I can only believe that God created us to make this world a little better. That he designed us in love to show that love to others. I just don't know what everyone is waiting for."

What am I waiting for? It is always possible to do the will of God.

Wordless Wednesday

My message

I had the privilege of sharing my testimony with the women of my moms' group at church today. Normally this would have had me freaking out with nerves. The first time I shared my story, I cried the whole way through.

Today was very different. I have a message now that I didn't have before. I had people praying for me as I prepared. 

My main messages were:

1. Keep Christ at the center of your home. Your kids will not be fooled, even if you go to church all the time and serve in ministry.

2. Little girls need daddies.  

3. Ralph has given me new dreams and the courage to take risks. 

I was able to share things that I had not ever shared publicly before. I just hope that in an attempt to be "real" I managed to be uplifting. Because I want people to know that no one is too far gone and no one is unlovable. 

Pondering at the Park

Today I promised Leroy that I would take him and Ralph, and Ruby of course, to the park. The weather has been so beautiful lately that I thought we should take advantage of it. You never know when it is about to change for the worse!

Naturally, nothing ever happens as planned around here. We didn't get out the door until after lunch because I was putting out fires all morning. When we finally did leave the house, the first thing was to get some gas. Leroy was so irritated with me for that, I though he would have a fit.

We went to our favorite playground in the city. I was so afraid that it would be packed due to the awesome weather, but no. I pointed Ralph in the direction of the swings, my favorite! He lost his footing on the sandy sidewalk. He was really skating on the sand! Must be because he is such a lightweight.

As I was pushing Ralph in the baby swing, I noticed that he was looking at something, but nothing was there. And, then after a moment I figured it out. The autumn afternoon sun was in a perfect position for Ralph to see his shadow swinging and my shadow standing. 

I don't know if he has ever taken notice of his shadow before. I would guess not. I started waving and then asking him to wave to mommy's shadow. After a while he was giggling and waving to his own shadow as well as mine. What fun!

I give Ralph a fair amount of freedom here to walk about and try things. Ralph wanted to try spinning in this cup again today. It's so funny that when Rose tries this I have to push her around. With Ralph I just set him in the cup and he starts to spin. I don't have words to tell you how weird it is...he just spins with zero effort...like he has some innate spinning power. Kinda scary.

There were three teenage girls standing and chatting on this saucer swing. Ralph walked up and they started ooohing and ahhing over him. I asked if he could get on the swing with them and set him down in the middle of them. Silly boy only lasted 10 seconds. He signed "all done" and so I rescued him.

Like a lot of two year old children he plays around other children but he doesn't play with them. He doesn't seem to care right now, he's just having a blast at the park. Then I started to get a little sad wondering what happens when he gets older and wants to play with the other kids. Will they accept him? Will he get hurt?

Of course he will. I get the old "no one will play with me" all the time from my other children. I'm not afraid. I'll handle it when we get there. Is there a way to prepare each other? I wonder.

A drop in the bucket.

Be a drop in the bucket for Maxim. Can you spare $10?

Maxim is a little boy living in a mental institution (HELLHOLE!) in Eastern Europe. He should be going to preschool, getting hugs and kisses from his mommy, getting tossed up in the air by his daddy.

All because he has Down Syndrome, he was rejected by his mommy and daddy. Because he has Down Syndrome he will never have a chance to go to school. Unless...

...his new mommy and daddy find him. Maxim is available for adoption! There is no shortage of people willing to adopt, only a shortage of funds. It costs roughly $25,000 to redeem one child through adoption.

Only by the grace of God, was Ralph born to me in the United States of America. When I learned about the sad fate of children with Down Syndrome in Eastern Europe I knew I had to do something. Will you help me?

My goal is to raise $1000 before December 31 for Maxim's adoption grant fund. If my Networked blog followers each chip in $10, that would make $800! If each of my Facebook friends chip in $10, that would be over $3000!

If you contribute $35 or more you will receive a beautiful porcelain photo ornament of your sponsored child to hang on your tree! This is a very special way to "share Christmas" with an orphaned child, and to make it possible for other families to afford the high cost of rescuing them from orphanages and mental institutions around the world!

Please be a little drop in the bucket.

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You can donate three ways.

1. Send a check to Reece's Rainbow
PO Box 4024, Gaithersburg, MD 20885

2. Paypay through the link at Reece's Rainbow.

3. Paypal through the Chip In link at the top left hand side of this page.

Speaking of flying...

These photos are for the cross-country team banquet on Friday. The girls are making a slide show for the seniors. I thought I might as well post them here, while I'm at it.

Richard. Born on the 4th of July.

He's almost all grown up now. Ready to fly away.

I gave him about 5 minutes notice that we were going to get some photos taken! ha! There were several shots that were really good, but we had to only pick one today. 'Cuz I'm out of money. But I needed them today.

Apparently, someone in Dublin (that's in Ireland) decided that I should buy them a plane ticket. No. Joke. I guess they didn't think I'd miss that $400. 

My dispute has been filed and should be resolved...in about 10 days. That sounds like a long time to me.

Knock me over!

I was knocked down by a fever yesterday. Almost literally knocked down! In the space of half an hour I went from feeling just fine to bundled up on the couch, freezing and shivering. I'm a firm believer in the power of a fever to kill whatever it is that is making you sick. But, oh dear, what misery. 

I'm thankful for my teenage boys who were willing and available to help me take care of the babies yesterday. I'm well aware that, as a mom, I'm not really allowed to get sick so it's nice to have them to cover for me.

So, I still need to give away a book, don't I? Thank you for all the lovely comments in October. I made some great new friends last month. To choose a winner I numbered all my comments in the order they were received. Then I used random.org to choose a number. Surprise, surprise! Your consistency paid off Barbara, you win! 

If she is a woman of her word, and I believe that she is, it may well be the Gifts 2 that keeps on giving.

October Giveaway

Thank you for your support during the 31 for 21 challenge during the month of October. It was so nice to have more comments to look forward to each day! I'm not too good to offer a freebie in order to get some blog love.

I need a day to go through the comments and draw for a winner. If I were completely pulled together I would have been doing this as I went through the month of October, but I hope you know me better than that!

I'll post the winner of Gifts 2 before midnight tomorrow. Good luck!

IT'S HERE!!!

IT'S HERE!! The 2009 Reece's Rainbow Angel Tree Project is live today.

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Announcing our 4th Annual


CHRISTMAS ANGEL TREE

The Reece's Rainbow Down Syndrome Adoption Ministryis a 501c3 charity which promotes and facilitates the international adoption of children with Down syndrome.

In only 3 years, more than 225 children with Down syndrome and other special needs have found their "forever families" at the end of Reece's Rainbow!

Your gifts have made that possible!

The Angel Tree is our most important fund raiser each year, and this year we have (166) orphans with Down syndrome around the world who are in need of grant donations (and adoption!)

From November 1-December 31, 2009, each of our orphaned children is praying that YOU will be their "Christmas Warrior". Please help them raise money in their adoption grant fund so a *forever family* can afford to rescue them from life in a mental institution.

There are families lined up and waiting to save these children,but they need financial help to do it! With an average cost of $25,000 to adopt internationally, every penny helps. Even the smallest donations really add up, and can truly change the course of a child's life!

*** With your donation of $35 (or more), you will receive a beautiful, porcelain Christmas ornament with your sponsored child's photo on the back. ***

This is a special way to share Christmas with an orphaned child, and to make it possible for them to spend NEXT Christmas at home with their new family!

Regardless of your faith, ethnic background, or nationality, your gift is life-saving in nature. Our goal is to raise $1000 or more for each of our waiting children. You can help by donating and sharing this Angel Tree with others! This is a very meaningful and personal gift idea for the holidays too!

*** Be SURE to watch and share our new video (click link to the right)....powerful, moving, compelling, and definitely worth watching! It really captures the essence and urgency of our work! ***

We also ask you to please share this official Angel Tree announcement with everyone you know!

Visit our home page at www.reecesrainbow.org throughout the year for more ways to bring our children into loving families. All donations are tax deductible to the fullest extent of the law. EIN 20-5466141

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I'm so excited! This is Maxim and I think he is a darling! My goal is to help raise $1000 for his adoption grant fund before December 31.

The goal for the 2009 project is to raise $1000 for each child's adoption grant fund. Won't you help me spread the word?