Tomorrow we take Jeremiah for his first appointment at Cincinnati Children's Hospital. He has been diagnosed with Eosinophilic Esophagitis and Eosinophilic Gastritis. Pronounce those.
This is a long awaited appointment at the Cincinnati Center for Eosinophilic Disorders. We got a referral from our GI Doctor in Dallas way back in May. It is only an hour long appointment with a PA but we are beyond excited to get our feet in the door here. It is the only center in the nation of its kind.
When I think about Jeremiah, I don't think about a kid whose sick or whose belly constantly hurts. He's just our Jeremiah.
He's the hilarious child who rode a camel with his dad last night, and when he got off yelled, "That was awesome. That was crazy awesome." He's also the kid who constantly tries to convince me that watching Blue's Clues or Backyardigans or whatever his current favorite show is will make him feel better. This convincing especially happens when he is crying because he was put in time-out.
Truth is, he doesn't eat. He is still on a bottle most of the time drinking a special supplement for nutrition. BUT that has never defined him in our minds. Yes, it's different. And boy are we seeing that with Eliza who loves to eat. But it's okay.
There are websites that say Jeremiah's quality of life will be diminished because of his disease, but we don't think so. We know that the older he gets, the harder it will be to not eat when everyone else is, but it doesn't mean life is less enjoyable. Our lives will probably never be wrapped around food, instead our time will be most meaningful when we are chucking the football at each other or pushing Eliza full speed in a wagon or reading books or whatever.
We choose happy.
Oh Jenny I love how you are so focused on the Lord. I know you didn't say it, but it is evident. Keep up the awesome work!
ReplyDeleteJust last night my dad was telling me about a friend who is severely disabled, who I believe has been in a wheelchair since birth with little or no control of his extremities. He's lived 15 or 20 years past what the doctors predicted, establishing a career, getting married, and raising children. His brother (who is no longer alive) had the same disease, but didn't embrace life as much. My dad's friend said his brother's problem was that "he thought he was handicapped." :) Jeremiah's situation is obviously much different, but it's a good lesson: you are not defined by your limitations!
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