Sunday, October 31, 2010

We Are Not Alone

Celtic Woman sings a beautiful song giving credit to the people behind the scenes.

You raise me up, so I can stand on mountains
You raise me up, to walk on stormy seas
I am strong, when I am on your shoulders
You raise me up, to more than I can be.

For my last post of October, I want to recognize and thank the ones who have raised us up to be more than we could be.

We have been most fortunate to have many beautiful people who are part of our lives and have traveled with us in one way or another.

Our families have been the backbone of support, learning with us, embracing our new life with open arms from the very first night we found out Wade had Down syndrome. They have walked with us every step of the way.

Our church family has been so wonderful that I wish I could wrap them up and give them as a gift to every other family in the world who has a child with Down syndrome. They have, simply by being themselves, loved and accepted and celebrated Wade for who he is. I often think that no legislation, no matter how detailed the laws, could ever bring about the change that comes with the love of God flowing through humans to those around them. New and better laws can change to a certain extent the way society at large treats our children, but unless the actions come from the heart, they will make little difference in our day-to-day existence. So thanks to the warm-hearted family of God who have made loving a lifestyle.

And what a line-up of dedicated professionals we have had who daily inspire me with their patience, warmth, and caring. Beginning with the service coordinator, and continuing with the therapists and special ed teachers, they not only answer all my questions, and tutor me in what I need to know, but also look at my child as an individual and strive to stretch him to reach his potential. And they do it so skillfully that he doesn't ever feel stretched. Wade thinks he is the luckiest kid around to have all these great play dates every week.

As we have traveled along the way, we have met other families who have been willing to share with us their successes and failures. Through this, I have experienced a phenomenon unlike any before. Never before have I attended large gatherings of complete strangers from all walks of life and felt the strangely warm comfort of coming home to people I have known before. Although genealogists would say we weren't related at all, we know better.

So thanks to you, and you, and you, for raising us up to be more than we could be.

And because we have this wealth of people who raise us up, we are never alone.

But most important of all, we are not alone for God is with us.

We are not an amazing family, but we are owned by an amazing God. Our prayer to Him has been, Teach us how to bring up the boy who is...born. Judges 13:8

And God answers abundantly every day. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. James 1:5

You might wonder why, during the busy days of our lives, I have taken the minutes to blog for the month of October.

I will answer that question with a verse that I think of often as I count the blessings that are ours. For unto whomsoever much is given, of him shall be much required. Luke 12:48

We have been given so much--extra chromosomes, extra vision, extra compassion, extra love, extra friends, and an extra chance to raise our other boys to be better people than they ever would have been otherwise.

It has been an epiphany like no other, and it's too good to keep to ourselves.

And that is why I blog.

Saturday, October 30, 2010


"As long as we all three say it," said Piglet, "I don't mind," he said, "but I shouldn't care to say 'Aha!' by myself. It wouldn't sound nearly so well."

Over the last four years, we have had many "Aha" moments. Moments where we suddenly understood what other families experienced, and how it could feel to love someone who processes the world differently from nearly everyone else. In the first 24 hours after we found out the possibility that Wade might have Down syndrome, I thought in leaps and bounds, covering territory I had never traveled before. I remember thinking, "So this is how other families feel when they have a child with a disability."

I wondered how other families ever rose above their grief to go on with life. Did they always carry sadness with them as they did the grocery shopping, and the car pooling, and all the other daily routines? Did they wish secretly that their burdens would just go away? Did they forever wonder why life had singled them out for this job?

Today, after living four years with Wade, and after meeting many, many families with similar circumstances, my questions now have a different form: What grief? What sadness? What burdens? And why did our family get so lucky to be chosen to learn such wonderful things?

And I am so happy that I cannot keep my moments to myself, but I must share them with you because, after all, saying "Aha!" by myself really doesn't sound nearly so well.

Friday, October 29, 2010

Do What Comes Next

I often think that the most successful people in the world are not the ones who achieve world fame; they are not the ones emblazoned on billboards; they are not the ones who continually make the headlines.

No, the most successful people in the world are the ones who simply do what comes next. They somehow have the enviable ability to sift through the chaff and focus on the golden wheat. It doesn't bring them attention, but I'm guessing it brings them peace.

My mother has a friend whom I have long admired. She was a foster care mother for years, providing a home to many young people (one of whom was a young man with Down syndrome whom she still speaks of affectionately). Then in her forties, she married a widower whose 10 children she received with open arms. Her husband later suffered a stroke and she spent his remaining years tenderly caring for him. It must have been lonely at times to be so housebound in the winters of Manitoba, but her letters to my mother told of the warm socks she was knitting for the Ukraine and of the bright colors of the school children's clothes as they played in the snow outside the window. I think it is so fitting that her name is Mary.

I have a friend I think of often. She has dedicated her life to caring--first for her school students, then later when the need arose, for her father who had Alzheimer's, for her aging grandmother, and now, still, for her mother. She works quietly at home for a publishing company, and nobody sees the hours she devotes to simply doing what comes next. But yet she writes me letters of encouragement and laughter. What a gift she has--my friend, who is also named Mary.

I think of my grandmother. I wish I had known her. Her mother died when she was seven and she was left alone to cook and care for her father and brothers. Pioneering in North Dakota could not have been easy at any time, but it breaks my heart to think of her at seven doing the work of a grown-up. Because of this, she was only able to get a third-grade education, but later when she had children, she studied their school work with them and educated herself. I wish she knew how many things she taught me; how many truths I find myself quoting that my mother learned from Grandma Curtiss.

I think of Nevin's grandmother who became deaf at the age of thirty-eight and never heard the voices of her last two children. I think of how she gathered her courage, learned how to lip read, and stayed interested and connected to the world until her death at 102. I think of her words the last time she saw Wade not long before her death, "He looks like he's doing all right!"

Yes, he is doing all right. And it is because of the courageous and wonderful people before us who have taught us by their examples to simply do what comes next.

Thursday, October 28, 2010


What do you know? The Great Book and its complicated system actually works. Look, they are having a tea party! (Not the political kind.)

Or maybe getting along with your brother is more like this: I made a snowman and my brother knocked it down and I knocked my brother down and then we had tea. ~Dylan Thomas

Sometimes being a brother is even better than being a superhero. ~Marc Brown

I sought my soul, but my soul I could not see. I sought my God, but my God eluded me. I sought my brother and I found all three. ~Author Unknown

Wednesday, October 27, 2010

Did the Government Train Them?

So I'm looking at the Strite Brother's elaborate system of debits and credits and rewards and upgrades and I'm thinking..........

........wouldn't it be simpler just to get along?

Monday, October 25, 2010

Letter to a Friend

Dear Friend,

I haven't met you yet, but I think that someday we will. I think we have something in common that will draw us together before we ever speak a word.

That link between your world and mine comes in the form of an extra chromosome.

Right now that may not look very attractive to you.

Right now you may be very afraid and very overwhelmed.

That's okay. I was too.

You fear that this extra chromosome will change your world; you fear that you cannot handle the world it will bring.

You fear you will always grieve from now on; you fear that the burden is too heavy.

I did too.

You wish there would be a miracle; you wish the test was wrong; you wish this was all a bad dream.

I know--I've been there.

But sometimes the miracle you pray for may not be the miracle that you receive.

And I know because now I live with a miracle every day--a miracle in the form of a little boy with Down syndrome who did change my world forever, but not at all in the way that I had imagined. And the miracle wasn't in changing him, but in changing me.

So how did this miracle change me? Let me tell you.

I have learned that you don't have to be perfect to be loved--very, very much.

I have learned that I am stronger than I ever thought I could be.

I know that I am not afraid any more.

I know that my fears have been turned into things of joy and wonder and beauty.

I know the incomparable sweetness of a little boy with brown eyes and a button nose, who is so happy every day that the happiness sparkles and floats away like fairy dust, generously spreading the magic to everyone he meets.

I know that my world has become a better place to be because there is a very small person in it who teaches me to love unconditionally and with abandon.

I know that I often wish I could be like him--to see the world through eyes of love, to believe that everyone in it is a friend, to see the best in everyone, and to believe that everyone loves me back. I am learning, but I can only learn slowly what he does so easily.

You may have been told that your child will do things more slowly than other children, and that may be true. But you also need to know that there are some things which he will do effortlessly--and that those things are some of the most important things in the world.

Because as my little boy goes simply on his way believing, he leaves behind him the seeds to grow a better world. A world where there is more love than hate; a world where perfect love casts out fear.

Right now, this is all so new and so big and so unknown to you, and you really don't want to talk to me because it might bring that world too close and you're just not ready for that yet.

I understand.

But, in spite of your fears, you also might have a curiosity about this new world, so let me show you the way to a window for you to peek in to see the faces--the beautiful faces of the people who live there. It's called Kids with a Little Extra. Go look. It's a warm, happy place.

And I'll wait to meet you until some day later on. And then you'll tell me how your world has changed too. And we will cry tears of joy together.

Until then, remember that we love you--Wade and I.

---Wade's mom

Sunday, October 24, 2010

Come Apart and Rest A While

Or you could say, "Rest a while, or you will come apart."

I'm so glad God created Sundays and then said, "REST!" It's a guilt-free mini break every week--healthy and rejuvenating for both body and soul--a visit to God's spa.

My sister gave me a book called Prayers and Peanut Butter: The Mother Book. The author told how in her youth she used to admire the serene, mature mothers she met who "smiled tranquilly and drifted on by".

Years later as she was shopping wearily with her own children, she caught the interested gaze and smile of a young girl and smiled back as she went on her way. Then she had an epiphany. It wasn't Serenity and Tranquility; it was just Being Tired.

So, in honor of Sundays and Mothers Being Tired, here is my favorite nursery rhyme.

Here is wicked little Walter,
Singing sweetly from a psalter.
But I can see, and so can you,
His catapult beneath the pew.

(It was a moment of pure luck that I confiscated the water gun before it walked into the sanctuary this morning.)

Saturday, October 23, 2010

Buddy Walking with Savannah

It's not every year we get to do two Buddy Walks.
Ours, here in Augusta, was the first part of October.

Then today we went to Savannah to participate in their Buddy Walk and to take some notes from their success.

It was a great day;
the weather was perfect;
the city was charming;
the extra chromosomes were out in full force;
and we met our favorite movie stars...........
Deedah and Jonathan!

And when you're that close to the ocean, you just have to visit the beach.....

The ocean delighted Wade
who ran so fast his legs were a blur just like the little sea birds.
We now call him Sand Piper.

Friday, October 22, 2010

Guys and Dolls

Somehow that male nurturing instinct is just a little.........different.

Here I thought Christopher had drawn such a nice pink doll.

Then I saw the title.

At our house, Curious George has plenty of adventure.

In fact, he's no longer even curious.

And the dolls live life on the edge. How about some extreme triking and swinging?

Waa, waaaaa! Uh, oh, she didn't like that.

Maybe she'll like going down the slide better.

Or maybe not.

He's sure they're all in love with him.

I know I am.

Thursday, October 21, 2010

Recognize the Similarities; Celebrate the Differences

We're having Lecture No. 45 on the different abilities we all have--how we're not all good at doing the same things and how that's just okay!

Chris says, "Yeah, I know, like Wade is really good at Down syndrome."

And in other related news, Wade had his picture in the local paper recently. I especially like how he's just sitting there in that new ball pit being really good at Down syndrome.

Wednesday, October 20, 2010

Tell Me a Story

We all love a good book--and in this economy, it's certainly the best way to travel!

Wade loves the audio books on More Starfall and follows along with the words, saying them out loud--great for practicing his ability to produce longer sentences.

So for today, here are some links to some virtual libraries.

Lil Fingers--online audio storybooks

Ziggity Zoom--more online audio storybooks ( as well as more printables--great alphabet tracing worksheets and color flashcards)

Storynory--online audio books for both younger and older children including stories from authors such as Rudyard Kipling, Oscar Wilde, Lewis Carroll, and Charles Dickens.

Children's Books Online--an adorable antique collection of books to page through and read online; some of them have audio

Aren't these pictures charming?

And then, because we all love a good story, let me tell one on Nevin.

Remember a few days ago I posted a link to the weird and wonderful tales of Musicophilia. In it were several instances of otherwise normal people who experienced musical hallucinations--so real that they were sure they were hearing live music from somewhere. These poor people heard whole symphonies inside their heads, music that could not be shut off (including one old lady who wasn't amused to be wakened every morning to the strains of "The Old Grey Mare, She Ain't What She Used to Be").

Last night Nevin was on his way home after dark on a lonely country road (well, okay, as lonely and country as you can get a few miles south of our metropolis), when he stopped at the stop sign and heard church bells behind him plain as day.

Only there are no church bells anywhere around.

He opened the window, and they were still there ringing.

He backed up to see if the sound would become closer. They still rang the same.

Lovely. Weird. Hallucinatory.

Then he realized they were coming from behind his seat.



He had forgotten that he had picked up our repaired chiming clock at the jewelers that day.

Guess we won't have to call for Dr. Sacks after all.

Tuesday, October 19, 2010