Bird with a Broken Wing

While attending the National Down Syndrome Congress Conference last weekend in Orlando, we heard an eloquent presentation by Dr. Elizabeth Harry, professor of special education at the University of Miami.

Melanie, Bird with a Broken Wing is the beautiful and heartbreaking story of Dr. Harry's own experiences with her daughter Melanie, who was born with cerebral palsy. For all parents of children with disabilities, this story captures the essence of what love is really all about.





When love beckons to you, follow him,


Though his ways are hard and steep.


And when his wings enfold you, yield to him,


Though the sword hidden among his pinions may wound you.


And when he speaks to you, believe in him,


Though his voice may shatter your dreams


as the north wind lays waste the garden.




But if in your fear you would seek only love's peace and love's pleasure,


Then it is better for you that you cover your nakedness and pass out of love's threshing-floor,


Into the seasonless world where you shall laugh, but not all of your laughter, and weep, but not all of your tears.


--Kahlil Gibran

Photo Diary

Waiting for spring...




waiting...



waiting...




...it came!






Wade graduates from his class at Bible Play School




Graduating is hard work




And then came summer...












Summer school

How Did We Get There from Here?

The strangest thing about this conversation is that it all took place very seriously, almost as if it were.......logical.




Chris: Girls were made out of bone; boys were made out of dirt. Guess that's why girls play with bones and boys play with dirt.



Me: Girls play with bones?



Chris: Yes.



Me: I've never seen girls playing with bones.



Chris: Well, they do.



Me: Have you ever seen a girl playing with a bone?



Chris: No, but you played with bones when you were little. You just don't remember it.



Me: I don't think so.



Chris: Well, they play with fake ones.



Me: What do fake bones look like?



Chris: Oh, some are blue, some are flue, and some are clue.



Me: Oh!!!!!



Chris: Well, anyway, I'll bet a girl would take a bone from a dog.



Me: I doubt that!



Chris: A dog would take a bone from a girl!



Me: Now, that I believe!



Chris (triumphantly): So the girl DID have the bone. You just proved it yourself!



Me (completely dazed): I have nothing left to say.




(And if that wasn't the Cheshire cat grinning at me, then I'm not Alice.)

Kindermusik

We've finally found a music therapist for Wade. Music is one of his great loves and, therefore, provides a perfect opportunity for teaching. Right now we are hosting a Kindermusik class at our house every week with some little friends, and then will continue on over the summer with one-on-one music therapy. Wade is absolutely delighted.






Wade had day surgery again in March to have the tubes replaced in both ears after fighting with congestion and fluid all winter. It didn't take long after surgery for me to tell a big difference in his ability to reproduce sounds accurately. We've been told that hearing through fluid on your ears is like hearing underwater.




Somehow, I don't think our other boys would have been so utterly happy with this much ear trouble. Wade's pleasant disposition can make it difficult for me to tell if something is wrong with him or not.
I often wonder how much people would be willing to pay for the gift of being so radiantly happy almost all the time!

Sleepytime

Funny Mama! She tucks me in bed when I'm not tired at all.







Maybe I'd better go convince her how alert I am. I'll just climb out of bed and walk over to the door and...(yawn) lie down and think about it for....a....while....zzzzzzz.

W is for Wade

We've been practicing matching words to pictures, using mostly names. One day a couple of months ago I walked into the living room to see Wade playing with the pictures and names. He had laid them out and had matched them correctly completely ON HIS OWN! I ran for the camera!!

School Days

Wade started a new era this fall when he graduated from the Babies Can't Wait program at age three.
He now gets an educator from the public school system who comes out once a week to work with him. He loves play time with Miss Motley.

We also enrolled him in a Bible play school two days a week where he is in a class of eight typical children who, we hope, will further inspire his verbal language skills. He gets speech, OT, and PT during the days he is there.
The second day of play school, he played hooky to attend college. We took him in for a clinical correlation with a class of first-year medical students who were studying Down Syndrome. It was an interesting day for us all.
This fall, we found a music therapist who is just getting established locally. He offered to come to our support group and do a free demo session with the children. That was a fun evening and Wade was happy to participate in the music!

Buddy Walk Augusta

Team Wade

Ladybug the Clown

It's hard to have a serious talk with a clown.

You know it's not an ordinary day when you get picked up by a dog.

What a large shirt for a small boy!

Oh well, he just walked without it. What fun!

Wall Art

I did it! I did it! I wrote beautiful 1's just like Mommy showed me.


Wait a minute. That wasn't the chalkboard.


Oops!

This and That

No more injections! Wade did not need the third set of injections….hurrah!
He will need to continue wearing the glove and will have periodic check-ups to make sure the scar tissue doesn't start to harden again.
He throws a ball over seven feet now (documented by the PT today) and continues to work on jumping.
Speech is coming slowly; he tries so hard that sometimes it can be quite funny. But every week I see improvement.
He is very proud to have jobs to do: setting the table, emptying trash, putting clothes away, climbing out of bed (with those flexible legs) and waking us all up in the morning.
Sometimes he even needs to multitask like the rest of us.