I've never heard of that... Are you sure it's not just reflux? Lots of kids have reflux..."
"Why are you pushing so hard to find something wrong with him?"
"Doctors today make mountains out of molehills... He's fine!"
The reality is that when you have a child with severe medical issues, there will always be people - many of them - who believe that you're making it up. The accusations range from hypochondria to Münchausen syndrome by proxy to plain old garden-variety insanity.
The truth of the matter is that every new symptom, every new reaction, and every new diagnosis fills me with dread. Each time we learn more about what makes Aidan tick, I am both thankful that we're able to get him wonderful care, and angry that any of this is happening to him. With each new discovery, I mourn the loss of the happy, carefree life I envisioned for him before he was born.
My therapist likes to ask what I'd do if I had a magic wand. I rarely know what to say. But I can confidently tell you that, in this situation, if I had a magic wand, I'd know exactly what to do. The same thing that any mother of a hurting child would do. I'd find a way to take all of his pain and all of his suffering away from him. I'd gladly take it on myself, if it meant that he'd be able to lead a "normal" life.
This obviously isn't possible, and that's okay. We're okay with where we are. But please, stop and think for a moment before you speak. We don't like this. We don't wish this upon our children. Want nothing more than to give our children the gift of normalcy.
"Why are you pushing so hard to find something wrong with him?"
"Doctors today make mountains out of molehills... He's fine!"
The reality is that when you have a child with severe medical issues, there will always be people - many of them - who believe that you're making it up. The accusations range from hypochondria to Münchausen syndrome by proxy to plain old garden-variety insanity.
The truth of the matter is that every new symptom, every new reaction, and every new diagnosis fills me with dread. Each time we learn more about what makes Aidan tick, I am both thankful that we're able to get him wonderful care, and angry that any of this is happening to him. With each new discovery, I mourn the loss of the happy, carefree life I envisioned for him before he was born.
My therapist likes to ask what I'd do if I had a magic wand. I rarely know what to say. But I can confidently tell you that, in this situation, if I had a magic wand, I'd know exactly what to do. The same thing that any mother of a hurting child would do. I'd find a way to take all of his pain and all of his suffering away from him. I'd gladly take it on myself, if it meant that he'd be able to lead a "normal" life.
This obviously isn't possible, and that's okay. We're okay with where we are. But please, stop and think for a moment before you speak. We don't like this. We don't wish this upon our children. Want nothing more than to give our children the gift of normalcy.
I know what it's like, too, when people think you must be making it up. I'm offended at the idea that I should just accept that feeling crappy is my destiny. If we are not feeling our best we at least owe it to ourselves to understand why that is and then we can figure out what life with that new understanding will be. We aren't looking for life to be fair, rosy, or perfect - we are just looking for answers; answers that will tell us how we go forward from here to find our new normal. There's nothing wrong with that. Nothing.
ReplyDeleteI'm glad to have you to share this with. All of it.
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