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Today's key word is INSPIRATION ......
Let me tell you a little bit about inspiration! Nothing, and I mean NOTHING, is as inspiring to reflect on your life, your family, your everything, than watching your child fight for his or her life.
These little kids are sooooooo amazing with what they have to put up with.
It's not like they are really given a choice, and it really because what they see as "normal" because it's all they know.
Because it IS their "NORMAL" ...
These kids keep going - they keep smiling and laughing - they keep waking up every day and enjoying their lives..... AMAZING and INSPIRING doesn't begin to cover it.
As a parent of TWO of these amazing kids, four if you count the oldest and youngest with their less rare issues .... I can tell you that I have learned we have to handle each kid a different way.
With Noah - you cannot tell him he has an appointment until the day of or his anxiety gets the best of him and he psych and stresses himself out. When he does find out it's a repetitive bombarding of "Will they poke me? Will I get a shot? Are they going to hurt me?" And what do you say? When I'm 99% certain nothing like that will be going on, I tell him so. But I still haven't figured out how to handle when I don't know. Because there have been times where we have gone in and they have wanted to do tests when I thought they wouldn't. So now he doesn't necessarily trust me on that matter anymore, so he spews it at the doctor as soon as he sees them. He carries around so much anxiety and it stems mostly from the countless tests, surgeries, hospitalizations, pokes, prodding, and the trust between him and the medical community is lost.
Nathan has his moments where he's like Noah. He sees a particular clinic and he'll start yelling "Nooooooooo I don't want to go there!"
And it's heartbreaking because no child should be afraid of their doctors, of the clinics, etc. It's hard to see them react the way they do because it's coming from a place of fear.
I feel, at least in my experience, that the most important thing to do is to....
1: Make sure that they don't FEEL like they are DIFFERENT in their own home, as much as possible.
2: To support them in whatever way you can without drawing a bunch of attention to their medical issues.
3: There is no shame in bribery ....
4: Talk to them, be open to their questions, make sure you help them understand their medical issues without making them feel different.
5: Celebrate their medical issues.