Last year I remember Jamie stayed up most of the night listening to Jonathan breathe, counting his breaths. Jonathan had just had open heart surgery the previous week and was recovering. We were still freaked out, afraid he might pass on our watch. Sunday morning, as I headed out to the race, Jamie left with Jonathan to see the cardiologist. We were both scared his heart was failing. He already had fluid behind his heart - a result of his lungs adjusting to the new influx of oxygen. The ultrasound revealed no more fluid so that put us at ease and I was able to run with more confidence.
This year is completely different. Jonathan is healthy and a joy. He is progressing so much more than we ever imagined. He is wearing braces on his legs to force him to bend his knees. On his own, he likes to "straight-leg" it on hands and feet. The braces force him to crawl. He no longer cries when I put them on - a few weeks ago he would cry, insert thumb, and lay on the floor. It was slightly heart-wrenching. He is putting on the pounds - about 19 pounds or so now! He eats like a champ and can feed himself. He LOVES his big brother, Jackson, and wants to be in anything Jackson is playing. He "talks" constantly, loves to interact by grabbing our faces and smiling into our eyes. Jackson often wrestles with him and instead of crying, he endures it with a grin.
In the last year I have found peace like no other I have ever experienced. We were so devastated upon learning his diagnosis after he was born and now cannot imagine him without it. In actuality, I have come to appreciate the Down syndrome. Selfishly, it has changed my life and the way I experience my relationship with God. Real difficulty, agony, and hardship are no longer strangers. Because of that, I have real peace like nothing I have ever experienced. I highly recommend it.:)
The Bell Center has been such a breath of fresh air in a difficult year. I benefited as much as Jonathan. Betty Bell and her staff were instruments in our education and healing this year. Without the Bell Center, we would have experienced all this much differently.
Please help Jonathan by giving financially to the Bell Center. You can go to this website: www.firstgiving.com/jonathanwarren and give safely and electronically. Our goal is to raise over $20,000 - the highest amount ever donated through this race. The deadline is 25 January 2007.
Please send this to anyone you think would be interested in helping us. Thank you for your donation!
See the recent pictures below!
Love,
Julie:)
juliewarren@mindspring.com
This is Jackson at his school's Christmas program. I dropped him off earlier that day wearing a Christmas outfit his Nana made and later returned to watch his show only to find him wearing this t-shirt and pants... bad sign - his replacement outfit I sent to school months earlier. It could only mean one thing... His teacher explained that she smelled something, unable to discern who it was. She never suspected Jackson so
she was surprised when he admitted to "soiling his suit." She figured he must not have been able to unbutton his outfit on his own. Ugh.
Jonathan crawling after a ball under the kitchen desk.
Jackson, Jonathan, and Daddy decorating for Christmas.
Jackson posing as an angel at Zoolight Safari.
Jonathan "chilling" at the Zoo.
Boys looking at Christmas lights at the zoo with friends.
Celebrating Mommy's birthday.
Boys opening gifts at Nana and Pops' house.
Jackson and Aunt Betsy decorating cookies for Santa.
Jonathan sampling Santa's cookies.
Jackson and Aunt Betsy watching a movie.
Mommy and Jonathan on Christmas Day.
Boys with Daddy on his birthday.
Daddy celebrating New Years' Eve with sparklers.
One morning while getting ready for the day, I heard on the baby monitor, "Mommy! Daddy!" I ran upstairs to find both boys in Jonathan's crib.
Jonathan giving himself a kiss. See, he's just as self-involved as the rest of us!
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