{sean}

"You look past where I am and see all kinds of possibilities. You don't see what the world sees. You look straight inside my heart and find me."

{sean}

"Show me everything you know, take me as far as I can go. Teach me as much as you can. Thanks for never giving up on me"

Children with special needs are like flowers...you never know until they fully bloom what color or how tall or how strong they will be, but adding the ingredient of love will always make them stronger. All buds deserve a chance to bloom.

{sean}

"Wherever you go I will follow. I'm hoping that you know how much I love you. You are my guiding light."

Sean's first words to me this morning were, "You look beautiful." How did I ever get so blessed?

{sean}

"I know you think I drift away from you into my own world, a space where there are no words, no rules. I know you worry about me when I go here, but it's just my way of coping."

{sean}

"I am never alone when you love me. Don't worry so much about me, your strength and love guide me."

{sean}

"When I close my eyes I run with the wind and can be anything I want to be. When I open my eyes I remember I am limited...until I look at you and then I remember I am not dreaming. Your love keeps me strong."

{worth reposting} 2006 Summer Camp - the best week of the year!

In 2006, Sean was back and so was his buddy Linds!! This time it was superheroes camp and they were The Incredibles.

{worth reposting} 2005 Muscular Dystrophy Summer Camp - the best week of the year!

In 2005, Sean was a Sith with his buddy Linds at Star Wars camp.

Stretch's Upgrades

The exterior evidence of Sean's "upgrades" installation. Well, the scar AND the unmistakable increase in height. Didn't even get the whole scar (gotta give a teenager some privacy - he did give me permission to post this pic).

It's about time for a post-surgery update. Sean visited with Dr. D'Astous today and came away with a glowing report. There is still much pain ... and now boredom with the whole ordeal. But physically he is healing well and making the adjustment to all the internal change. Dr. Osborn also put Sean on Tamiflu to protect him from all the nasty bugs out there. And Sean got his swine flu vaccination.

So I suppose there's nothing more for us to do except to try to ease him back into life after surgery. He is quite enjoying wearing underwear again! Clothes are also a nicety to which he had become unaccustomed. Hoping for lovely weather so we can make some outings out-of-doors.

Here's to looking tall & handsome!!

My Guy

My guy is home from the hospital! He charmed his way through surgery & rehab...now he's home for recovery...and just as charming. Even when suffering, Sean kept his cheerful demeanor - sharing a smile and a giggle whenever the opportunity arose. His compassion and empathy touched many. He brightened days for many with his sense of humor and undeniable courage.

The surgery itself went far better than expected, lasting only five hours instead of eight hours as scheduled. And Sean continued to amaze with how quickly he was able to overcome post-surgery challenges. He is setting some kind of record for healing. A true champion.

107 Days Until Christmas...Will You Be Ready?

Will I be ready? Yes...and no. Today we (finally) got the word that Sean's spinal fusion is scheduled for December 2. So it will be a holly, jolly hospital season this year.

I am so ready for Sean to get this long-awaited surgery. When I told him the surgery date he looked at me and started crying. "I can't wait that long. My body hurts. I can't take it any more." I can't take it any more, either...seeing my angel unable to find any relief from the pain. For that reason, I WILL be ready.

On the other hand, will I ever really be ready? Ready for one more major step in the progression of this disease. Ready for him to experience even more pain and suffering in hopes that it will bring some measure of relief to him after he heals.

Bitter tears fall as I think of his precious childhood spent knowing too much of pain.

Grateful tears fall as I attempt to comprehend how I could be so blessed to be his mother. To have his sunshine fill my every day. To know true strength of character. True courage.

2005 Summer Camp - the best week of the year!

Speaking of my two teens and a tween, here they are!
Dasha is 12 years old. Sean is 13. Luba is 16.