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Out of the mouths of babes....


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DD4 and I are talking on the drive on the way home from ped yesterday (about 4 hours one way). She is doing usual 4 year old chatter - then starts to talk about the teddy bear the naturopath gave her "to take care of" in between her hydotherapy appointments. She named him Linden. Here's the jist of the conversation...

 

DD - Linden is all better now mommy, he can go back to Dr. L

Me - Oh, that sounds good - remember you can keep him longer if you want

DD - Dr. L is going to make me all better

Me - Sounds good to me

DD - I don't want to be sick anymore mommy

Me - I don't want you to be sick anymore either

DD - I don't want anymore fevers mommy

me - I don't want you to have anymore fevers either honey

dd - I really want to be a grown up someday

Me - i really want you to be a grown up someday too

dd - I really want to be a grown up someday mommy, but my insides tell me I won't be

 

Ooooofff - what could I possibly say to that?...

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Ooooofff - what could I possibly say to that?...

 

You tell her with absolute certainty that Linden got better and so will she.

 

Last night, my son (9) and I were talking/'reminiscing' and he brought up how he used to be obsessed with doors (long story). He then went on to realize that he didn't have any obsessions anymore - no need for evenness, no need to control his environment, no need for special numbers or have things 'just right', no tics, no muscle pain, no brain fog...nothing. He has been sick since the age of 6, maybe longer. Last year at this time, he was miserable, feeling like the unluckiest kid on the planet because he had 3 diseases (Pandas, lyme and pyroluria). Last night, he was struck by how totally normal he feels now.

 

Kids don't have the same sense of time adults do. They live in the Now. If they are sick, they think they've always been and always will be sick. If they're healthy, they tend to not remember how awful they once felt. So yes, it's heartbreaking when they feel despair. No child should feel that way. But as a parent, you can help reassure them that you know it won't always be the way it is today. That they have a future where they will be healthy and not have to see doctors all the time.

 

It's really, really hard to feel optimism, but kids can - and do - get better. We all take individual paths to get there, but you have every reason to believe that your daughter will reach a point where all of this becomes a distant memory. She needs to know that you believe that. Because it's true.

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I can realte, my PANDAS son is also 4 years old, and has been on this roller coaster for 2 years now. He often says things just like this, and you're right, it's heart breaking. We just keep reminding him how his family loves him very much, and his mommy and daddy, along with all of his doctors are fighting the "bad guys" in his brain very hard, and we're not going to let them win.

 

The most heart breaking one for me was when during an episode we woke him up before we went to bed to go potty (for obvious reasons!) and he was half asleep, sitting on the toilet, and he just said "Mommy, I don't want to be sick anymore, can you make it go away now?" I cried myself to sleep that night.

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During the height of my DD illness she told me in a firm voice numerous times--Don't make me feel better. If I was doing research or reading, she would try to stop me and tell me she did not want to feel better. She even told her pedi not to make her feel better. With her having autism, I tried to figure out the reasoning for this wording and decided maybe it was a sign of depression. I will never know as she is expressively delayed.

 

I relate to the heart break as it made me want to cry to think she wanted to or thought she deserved to feel this badly.

Edited by Mayzoo
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