Teddy's birthday brings mixed emotions for me. I almost ended up in tears walking the toy aisles because the toys that would entertain Teddy aren't the ones marked 3-5 years of age. I'm reminded, not that I ever forget, of how far he lags behind milestones ... and how he may never hit some milestones ... and how much I would love to hear him say, "I love you."
Instead, I know that for now, his laughs, smiles, arm flails, squeezes and tackles are his way of telling me, "I love you." And by that measure, Teddy tells me, "I love you" many times every day.
As much as that sadness lingers for what isn't and what may not be, birthdays also serve as a reminder of how much Teddy has accomplished. Two years ago today, Teddy got into a seated position by himself for the first time (in our tent at Crater Lake National Park after a horrid night's lack of sleep ... not that I still remember that). Last year, we caught him clapping for one of the first times ever while taking his 2-year pictures. He used his gait trainer at his birthday party last year for close to 30 minutes, which was a record for him, and a long time for everyone to dodge him because he had no concept of steering and crashed into everything and everyone.
In the past year, Teddy's babbled. He's learned to give high fives, although we need to keep working on that to keep it fresh in his mind. He's given me my first true, intentional hug. He understands the command, "load up," and willingly grabs on for a piggyback ride (although we're still working on holding on the whole time). He's able to climb on and hold on while I get him tucked into a back carrier. He's climbed everything that could possibly be climbed. He can walk fairly long distances holding two hands for assistance. He can walk short distances holding one hand for assistance. He can walk 10 feet by himself. He can balance standing for nearly 5 seconds. He can stack rings. He plays the "stinky feet" game. He's taught us how to understand more of his preferences when he communicates his wants.
|This is typical Teddy, climbing and smiling.|
When we got Teddy's diagnosis last November, we were shocked to read in the literature provided to us after we left the geneticist's office that, "Most affected individuals die before 3 years of age." We wouldn't share the name of his syndrome with our parents until we received clarification from our geneticist that there was no reason to believe Teddy's health or life was in immediate jeopardy.
In the past 8 months, we've connected with 10 other families who have children with the same diagnosis as Teddy, which has been a tremendous blessing. We've mourned with those families as two children passed away this year well before the age of 3. And we still remember their losses.
But today we celebrate Teddy. We celebrate that he's defied the medical literature, and hopefully his story will someday be included to give other families a better prognosis. We celebrate all that he's accomplished and look forward to another amazing and fun-filled year with him.
Happy 3rd birthday Teddy!