Day in the park...

My brother in law, Dan, put this video together of the kids playing at the park a couple of weeks ago.

It was a super windy day that we attempted a picnic. We got grass in our food, and dust in our eyes. From a grown-up perspective, it wasn't an ideal day at the park. But then, seeing this footage, it really was pretty perfect.

Fun at the Park from Dan Nelson on Vimeo.

Max's Song of Love...

A while ago, I read a review of Songs of Love on 5 Minutes for Special Needs. I was instantly intrigued, and thought, if ever there was an organization made with kids like Max in mind, this is it!

The Songs of Love Foundation is a national nonprofit 501(c)(3) organization that creates free, personalized, original songs to uplift children and teens currently facing tough medical, physical or emotional challenges. Each CD is professionally produced with lyrics containing the child's name and references to all of his or her favorite activities, things, people, and pets. Songs are written and performed in any language in the musical style that the child likes best (pop, R&B, rap, rock, alternative, etc.), by a variety of talented professionals.

I turned in our application, full of things that Max loves. I got a phone call a few days later asking for more information on Max. The lady with Songs of Love let me know they don't usually get kids whose favorite music is opera. ;)

I was really curious what they would come up with after listening
to some of the other songs for other kids. I knew it would be special whatever we got, but was not prepared for it to be so perfectly made for him.

Not only was it an opera song, set to beautiful piano accompaniment, by Danny Obadia, but it was written and performed by an opera singer, Charity Tilleman-Dick. An opera singer, who has had a bilateral lung transplant, and came out with her beautiful voice still able to share with the world, and one very special little boy, our Max.

These are the words she wrote for our Maximilian...one in seven billion.

THERE ARE MILLIONS, EVEN BILLIONS
OF PEOPLE GOING ROUND AND ROUND
IN SEARCH OF WHAT TO DO
AND FOR MILLIONS, EVEN BILLIONS
MAXIMILIAN, YOU KNOW WHAT'S FOR YOU

YOU LIKE YELLOW SUNSHINE DAYS
FULL OF MILLIONS OF YELLOW SUNSHINE RAYS
ON A BEACH OF THE ATLANTIC OR PACIFIC OCEAN BLUE
MAX, A CURIOUS MONKEY NAMED GEORGE
IS THERE WITH A PIZZA FOR YOU

THERE ARE MILLIONS, EVEN BILLIONS
OF PEOPLE LOOKING HIGH AND LOW
IN SEARCH OF LOVE THAT'S TRUE
BUT OF MILLIONS, MAYBE BILLIONS
MAXIMILIAN, LOVE FOUND YOU

YOUR MOM, SHE LOVES YOU MORE THAN WORDS CAN SAY
YOUR DAD LOVES SPINNING WITH YOU IF HE CAN EACH DAY
AND YOU LOVE THEM AND OPERA - WHAT A FINE CHOICE
THE KIND OF SINGING THAT TAKES THE MOST WELL-TRAINED VOICE
CURIOUS GEORGE! SOUND THE DRUMS!
CURTAIN CALL! HERE IT COMES!

OUT OF MILLIONS, OUT OF BILLIONS,
OF PEOPLE LIVING ON THIS EARTH, WE GOT LUCKY - IT'S TRUE
'CAUSE FROM MILLIONS, ACTUALLY BILLIONS
WE GOT OURSELVES A MAXIMILIAN
WHO IS ONE IN SEVEN BILLION
MAX, WE ARE SO GRATEFUL FOR YOU


I wanted to share a few videos of Max enjoying his song. The first two, were his first times listening to his song. Now he wants to listen to it multiple times a day. He was almost ready for bed when Steve brought in the mail, so we let him listen to it a few times before going to sleep. That's why he's so quiet and still in these first two videos.



This one makes us smile so much to watch him "singing" along silently. He's moving his mouth along, like he's singing all of the words. We've never seen him do this along to music, so it's curious to us if he's actually singing along, at least in his head.



This one was a more active Max, but he's now got a cold, which explains the stuffy nose he's singing with in this video. When he puts his hand up to his mouth, he's asking for "more", he knows the song is almost over when she sings her aria, so he always asks for "more" at this point.



You can hear some of the song in each of these videos. But, if you want to download the whole song, or as a ringtone, you can go to the Family and Friends Song&Ringtone Download Page and enter in Max's last name and code: Watson 22654 to get your own copy. Each song costs Songs of Love $250.00 to produce, which they give without any cost to the family. This is such a fabulous organization, and they have given us such an amazing gift.

St. Patrick's Day fun...

We got to all have fun together this past Thursday. Sure, it's St. Patrick's Day, but more importantly in our house, it's our wedding anniversary. As it always turns out, Abbey is with us for Spring Break on March 17th, so we got to have a fun day together.

The day started with Max visiting with his friends at school. Here are a few of the things he's worked on in March, to lead up to St. Patrick's Day.







Then we got out for lunch, and tried to make it over to see the bagpipes at the Irish pub in our neighborhood...we had just missed them, but we're going to track them down around town and try to get to listen sometime soon. Abbey wore this for her "green" addition to her black wardrobe on Thursday.



And put it on Max because he was eyeing it while they sat by each other in the van...he doesn't seem so impressed.


But still, pretty cute.

Spring is Springing...

We're all sneezing and itchy eyes...but, we get to see lovely things like this which is causing the sneezing....

Marmelade...

When I was a little Deana, I always loved having breakfast with my grandparents. Sure, Grandpa could cook up a great big breakfast, full with eggs and meats and potatoes, sometimes cooked outside over a smokey fire. But my favorite part was the toast.

I've always had a silly morning stomach. I almost never wake up hungry. Almost never like to wake to the smell of food cooking. But, I knew then and I know now that if I don't eat even a little something, I'll drag through until lunch. So, I'll often eat a slice or two of toast.

In order for Grandma to make enough toast for all of us, she would use the broiler, or the toaster oven. I would help slather the butter on all the pieces so it could melt into the toast as it cooked. Then, we had our choice of jams, all homemade. Red plum, boysenberry, apple butter, and orange marmelade. I would eat all of them, but my favorite was the orange marmelade.

I first tried it because Paddington Bear loved it...and he lived in England, and from a very early age I was smitten with England. I don't remember my siblings sharing my fondness for the bitter chunky jam, instead going for the sweet stuff, leaving it for me and my grandparents.

It's still not a shared flavor in my house, but I still love it. When I woke up this morning, and opened the blinds to find a heavy grey sky, it took me back to an English morning...so I thought I needed an English breakfast. Still not an eggy meaty heavy breakfast, but a breakfast I eat in England. Toast, tea, and orange marmelade.

When I was last there, I picked up a tin of tea from Harrod's, and as we were leaving the airport, took the extra jam from my breakfast...orange marmelade.



It turned my regular Monday morning into something special. Memories of breakfasts in my favorite places, with my favorite people.



And now what do I see? The sun peaking through the grey and blue sky.

Making Me Smile...

Since I'm short on words lately, maybe a few photos to share. These have all made me smile the past week.

Birthday teapot, cup and saucer from my mom, with English Breakfast Tea steeping.



It's getting increasingly difficult to get a photo of Max smiling. I think he's figured me out and puts the smile away as soon as the camera comes out. So, I tried to zoom from my chair to his to get this shot of him giggling.



Classic Max, having his glasses anywhere but on his eyes.



Learning to write his numbers, and his LONG name.



Almost time to plant!



And, it never fails to make me laugh when I see a dog sitting in a driver's seat.

End The Word...

As we rode in the car silent after the first neurology appointment with Max over 7 years ago, I couldn't keep the tears from streaming down my face. We had no diagnosis. There was no talk of a rare metabolic disease. There was no talk of severe forms of epilepsy. There was no talk of surgeries, and physical and developmental disabilities.

We left only with a test done to see if the shaking he was doing was anything to worry about. But I had one thing on my mind.

The first words that I could form to Steve through my silent sobs, "I don't want him to be retarded.".

And then I sobbed more...harder that time, and without restraint.

The guilt at that point, that punch right in the heart that took my breath away, the feeling that I didn't want him to be retarded, was the thing that made me sob. What did that mean? He was who he was...he was my baby...why did that come out of my mouth? Did it mean I didn't want my perfect little 3 month old baby?

Of course that wasn't the case. When those words came out of my mouth, without thought, without filter, it was a feeling deep inside, I don't want him to be different. I don't want him to be picked on. I don't want people to think he's anything but the perfect baby I saw him as. I didn't want doctors to think he wasn't worth helping because he was "just retarded".

We do have a diagnosis, several in fact. And with all of those diagnosis, I've never heard the term "mentally retarded" to label him medically or to qualify his mental abilities. Max has never been, to my knowledge, been called a retard out of meanness.

But, when I hear that word used, flippantly, or harshly, I can still feel that punch right in the heart. That initial moment of, "please don't treat my baby any different than the perfect human being he is.". Each time that word is used to label someone or something as "stupid" or to say that someone is less than perfect, it furthers the disrespect for all humans.

Those who know Max know that he is not stupid. He does have so much to offer in this world. He's beautiful, and bright, and deserves the same respect any one else does.

And that is why I have again this year, taken the pledge to End The Word.

It's for my son. It's for another new mom who will leave a doctor's visit shattered that her child will be looked at as not equal to other kids because of medical diagnosis. It's for the word to get out that being disrespectful with your words and name calling is not okay.

So, if you use the word retard, or retarded, please reconsider. Remember, RESPECT for all people.