What do you get when you have an almost 12 year old that recently lost his 16 year old sister AND read the book "Freak the Mighty" at school (spoiler alert: the small and sickly boy dies) AND has a chronic illness? You get a child that is afraid of dying before they turn 16 years old.
That is our latest battle. Maxwell is terrified that he is going to die young. With missing half his immune system, it is a real fear for him anyway. He has always feared dying young. Despite us telling him that he is being treated with amazing (and expensive) medicine that is keeping him well, the fear is in the back of his mind. Add on that Catherine unexpectedly died at 16, and you have a recipe for one scared child.
So what do you do? You call the amazing pediatrician that has treated all your children and explain the situation. He has an appointment on Monday for a "physical" and some assurance from the doctor that he is fine. After telling Max that he had an appointment with the doctor, he told me he was scared that they were going to tell him there is something wrong with him. No matter how much I have promised him he is fine, there is a real fear there. This is part of losing someone you love. You see it happen around you but you think you are invincible. When it happens in the bedroom next to yours to someone you love, it becomes way too real. I hate that he is so scared and I wish I could make it better. I'm hoping that the pediatrician can make him feel better.
With Max being so filled with fear and anxiety, he asked for some alone time with me. He wanted to go to Joann Fabric and listen to Disney music. So we planned it for tonight. We stopped at Starbucks and wandered around the store for about an hour just chatting. On the way home, he put the soundtrack to "Chicago" on the radio. It was like a large projector was playing memory after memory of Catherine in front of me. The panic hit hard and fast. I yelled at him to change the music. It was all too much. Here's the thing, when you have children that lost that same person you did, you spend a lot of time focusing on them and their grief. That doesn't leave a lot of time for yourself. So I bottle up the grief and feelings until they can't stay bottled up anymore and I have moments of panic and sadness. Maxwell put his hand on my arm and smiled at me. He knew what I was going through and was so sweet and empathetic. So he changed the music to the most God awful rap. It was a window to his world and while it was amusing to watch him rap along (all hand and arm motions included) it was also quite horrifying. Catherine and I had the same taste in music. Max and I do not. It may be time to diversify a little. But I did appreciate the glimpse into his world. For that time we were out tonight, he seemed more free and less stressed. I hope it was the reprieve he needed. I wish I could get the same reprieve.
That is our latest battle. Maxwell is terrified that he is going to die young. With missing half his immune system, it is a real fear for him anyway. He has always feared dying young. Despite us telling him that he is being treated with amazing (and expensive) medicine that is keeping him well, the fear is in the back of his mind. Add on that Catherine unexpectedly died at 16, and you have a recipe for one scared child.
So what do you do? You call the amazing pediatrician that has treated all your children and explain the situation. He has an appointment on Monday for a "physical" and some assurance from the doctor that he is fine. After telling Max that he had an appointment with the doctor, he told me he was scared that they were going to tell him there is something wrong with him. No matter how much I have promised him he is fine, there is a real fear there. This is part of losing someone you love. You see it happen around you but you think you are invincible. When it happens in the bedroom next to yours to someone you love, it becomes way too real. I hate that he is so scared and I wish I could make it better. I'm hoping that the pediatrician can make him feel better.
With Max being so filled with fear and anxiety, he asked for some alone time with me. He wanted to go to Joann Fabric and listen to Disney music. So we planned it for tonight. We stopped at Starbucks and wandered around the store for about an hour just chatting. On the way home, he put the soundtrack to "Chicago" on the radio. It was like a large projector was playing memory after memory of Catherine in front of me. The panic hit hard and fast. I yelled at him to change the music. It was all too much. Here's the thing, when you have children that lost that same person you did, you spend a lot of time focusing on them and their grief. That doesn't leave a lot of time for yourself. So I bottle up the grief and feelings until they can't stay bottled up anymore and I have moments of panic and sadness. Maxwell put his hand on my arm and smiled at me. He knew what I was going through and was so sweet and empathetic. So he changed the music to the most God awful rap. It was a window to his world and while it was amusing to watch him rap along (all hand and arm motions included) it was also quite horrifying. Catherine and I had the same taste in music. Max and I do not. It may be time to diversify a little. But I did appreciate the glimpse into his world. For that time we were out tonight, he seemed more free and less stressed. I hope it was the reprieve he needed. I wish I could get the same reprieve.
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