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The Days You Live For, and the Ones You Want to Forget

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Some days never end in our house. There are nights when our son Andrew is up most of the time because of the sleep disorder no doctor seems to understand. But in the middle of the night, he will give you a smile that will melt your heart. And you push forward.  

Once morning arrives, you pray that he will agree that going to school is a great idea. You pack a lunch and two snacks that are on his diet, since he cannot eat anything on the cafeteria menu. As you help an almost 12-year-old put on his clothes, shoes and coat, he hugs you and says words you waited for years to hear from him: “My mom, my sweetheart.” And you push forward.  

Some days the report from his dedicated teacher and aides are “out of sorts” or “hit the floor a lot today.” The days you live for include phrases like “loved playing with his peers” or “used a lot of great language today.” And you push forward.

There are days you spend in the hospital getting treatments for his devastating immune system disorder that you cannot pronounce.   Sitting with him in the hospital bed watching him rewind the same section of Thomas the Tank Engine for hours has to make you laugh or you will cry. He finally lets the movie play, turns to you with full eye contact and lets out a full belly laugh. And you push forward.

Except for swimming and the occasional fast food meal, the family never goes out in public. The stares at his flapping and loud repetition of odd phrases are just too heartbreaking. But every night we pray that tomorrow may be a little easier for us all. And He pushes us forward.

By Becky Barnes, mom of Andrew, 11

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