Waiting is the hardest thing to do
It was 5 am when I heard it. That awful alarm clock. Even though I wake each morning to my favorite sound - the beautiful music of Mumford & Sons - I really hate getting up early, especially on a day like today. I jumped in the shower and went through the motions. I washed, rinsed, and shaved. I haphazardly dried my hair only because I knew it would be two days until I could do it again. When I woke Ben, he got out of bed rather quickly, got dressed and headed to the van. He even carried our overnight bag for us. He fell asleep almost instantly as I tried to wake myself up. The drive to Philly is never fun this early in the morning, but the drive to Children's Hospital is even less fun.
Ben has had chronic GI issues since birth. We've bounced around from doctor to doctor and facility to facility hoping each time that THIS was going to be the time we'd find some healing for him. No one has been able to find a solution - or worse, a cause - for his problems. And yet he does everything we ask of him. He tries every medication, every treatment option, and every test, no matter how invasive or probing any of these things are. And he continues to smile, continues to be a light in the room. As I, myself, begin to waver in my belief that we will find a solution, he gives me a reason to continue to hope. His current doctor informed me recently that he is astounded that Ben is not having serious stomach pain with the medication he's on, and I confirmed that Ben does not utter one complaint. He just deals with it. If only all of us could deal with life's little blows this well.
So far, we've made a few discoveries with our new favorite GI doctor (Dr. Boyle - just picture Gene Wilder with short gray hair - that's our doctor), which is better than not knowing anything. Further tests will confirm and hopefully help us treat him, but it's taken 13 years. The staff at CHOP is fantastic. The nurses all have really big hearts and treat us with kindness, but it's Ben again who steals their hearts. One of the nurses sent me to the cafeteria to get lunch. She insisted, actually, and said that he was in good hands for half an hour. I didn't want to leave, but when I returned, she had tears in her eyes. She said, "Leanne, you have one special little boy there. He told me I have a lovely personality. I've never had a teen talk to me that way in here, and so polite to boot." This is the same nurse who has undergone some of the procedures just so she would know what the kids were going through. No wonder she and Ben got along so well - they have similar "care" factors.
As a treat for Ben, I've been slowly redoing his tiny closet-less bedroom. He's had hand-me-downs and a mish-mash of furniture forever, but also not much room to store things. I started this project with the desire to let him know how much he's loved. I asked him yesterday how much he likes it so far and he said he 'absolutely loves it'. He's said a few times along the way, as I've painted, or sanded, or designed and shopped, that he does not want me to spend the money or time on him - he doesn't want to cause me any stress. I reassure him that this has been a joy to do for him. He's worth every minute and every penny. It's not finished, yet, but we are getting there. The picture on the left is right after I painted and the floor was installed. The one on the right was after the closet and desk were installed. The closet is from IKEA (Pax system with lots of pull-outs and built-in drawers) and the desk is a make-shift homemade space out of a kitchen counter. It's so spacious and organized and will work just great for him. If only solving his medical problems were this easy.
Ben has had chronic GI issues since birth. We've bounced around from doctor to doctor and facility to facility hoping each time that THIS was going to be the time we'd find some healing for him. No one has been able to find a solution - or worse, a cause - for his problems. And yet he does everything we ask of him. He tries every medication, every treatment option, and every test, no matter how invasive or probing any of these things are. And he continues to smile, continues to be a light in the room. As I, myself, begin to waver in my belief that we will find a solution, he gives me a reason to continue to hope. His current doctor informed me recently that he is astounded that Ben is not having serious stomach pain with the medication he's on, and I confirmed that Ben does not utter one complaint. He just deals with it. If only all of us could deal with life's little blows this well.
So far, we've made a few discoveries with our new favorite GI doctor (Dr. Boyle - just picture Gene Wilder with short gray hair - that's our doctor), which is better than not knowing anything. Further tests will confirm and hopefully help us treat him, but it's taken 13 years. The staff at CHOP is fantastic. The nurses all have really big hearts and treat us with kindness, but it's Ben again who steals their hearts. One of the nurses sent me to the cafeteria to get lunch. She insisted, actually, and said that he was in good hands for half an hour. I didn't want to leave, but when I returned, she had tears in her eyes. She said, "Leanne, you have one special little boy there. He told me I have a lovely personality. I've never had a teen talk to me that way in here, and so polite to boot." This is the same nurse who has undergone some of the procedures just so she would know what the kids were going through. No wonder she and Ben got along so well - they have similar "care" factors.
As a treat for Ben, I've been slowly redoing his tiny closet-less bedroom. He's had hand-me-downs and a mish-mash of furniture forever, but also not much room to store things. I started this project with the desire to let him know how much he's loved. I asked him yesterday how much he likes it so far and he said he 'absolutely loves it'. He's said a few times along the way, as I've painted, or sanded, or designed and shopped, that he does not want me to spend the money or time on him - he doesn't want to cause me any stress. I reassure him that this has been a joy to do for him. He's worth every minute and every penny. It's not finished, yet, but we are getting there. The picture on the left is right after I painted and the floor was installed. The one on the right was after the closet and desk were installed. The closet is from IKEA (Pax system with lots of pull-outs and built-in drawers) and the desk is a make-shift homemade space out of a kitchen counter. It's so spacious and organized and will work just great for him. If only solving his medical problems were this easy.
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