Well, I Love You Too

In order to encourage Wade to speak in longer sentences, I often have to prompt him. For example, if he says, "Crackers", I'll say, "I........" and then he'll remember and say carefully, "I... want... crackers... please."

But sometimes he forgets what comes after I and then he just fills in with "I.......love.....you!"

And even though that wasn't what he intended to say in the beginning, it still thrills me to my toes every time I hear it!

Bye-Bye Adenoids; Welcome Back Tubes

We've been fighting fluid on Wade's ears again for over a month. He was on antibiotic in October, but at his November appointment the fluid was back (or had never left).

So he had surgery today to have his adenoids taken out and the third set of tubes put in.

In spite of being on antibiotic, his right ear was still very full of fluid, which appeared to have been sitting there for some time. The tube was also out of his left ear, but a perforation remains which is larger than the hole for the tube would be. So the doctor didn't replace the tube in the left ear, but treated the hole to encourage healing. We will have to watch that ear more carefully now because of increased risk of infection.

His adenoids were very large, so it was a good thing to have them taken out as well.

And in order to make sure I worried properly before surgery, Wade managed to have an allergic reaction yesterday to the antibiotic he was taking. Big, lumpy, itchy, red hives which were still itchy, lumpy, and red this morning.

But now we're home and doing fine, thanks to God, the prayers of friends, and a terrific doctor.

And Wade is joyfully singing.

Did you know that songs with no tunes can be utterly beautiful?

It's a Guy's World

Superman flies across a gaping chasm!

"This," he said, "is an escalator running backwards."

What do I smell??

How do mother's hold babies? Like this?

Or like this?

A bag of cheap flour, a sifter, and a happy boy

A boy, a pocket knife, a stick, and an admirer.

Aw, Mom, can't he come in?

A boy and a barber.

An all-guy camping trip! What could be better?

Snuggling in a favorite blanket (thanks, Grandma!).

That's all, that's it, good night!

When Did This Happen?

I kissed him as usual and said, "Good night, little boy!"

But he spread his arms wide and said proudly, "I beeg, beeg boy!"

And as you can see.......he is.

Yes, that's a gun and it's going, "Pow, pow!" The real measure of a "beeg" boy.

All in a Day's Work

Children's Hospital Boston has a new resource specialist who was made for the job.

Read the story here.

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.

Aha!

"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.

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.

Brothers

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

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?