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A Reflection - 2 years later


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Last year I found it helpful to reflect on what I had learned in our first year after dx. So here I am again – 2 years later.

 

-I’ve learned just how disappointing it is to still need to be here after 2 years!

 

-I’ve learned that I can get my son back - I saw it myself – unfortunately for all too brief of a time.

 

-I learned that placing your children in giant plastic bubbles to keep them from catching strep is apparently frowned upon by society.

 

-I’ve learned that being right all the time is very overrated – especially when it’s because you suspected your other child had PANDAS.

 

-I’ve learned that having an incredible medical team already in place and an early diagnosis doesn’t lessen the heartache of watching your other child slip away from this disease.

 

-I’ve learned that this disease can affect each child so differently that just when you think you’ve got it figured out – it throws you for another loop.

 

-I’ve learned that I have different (and higher) standards and expectations for my PANDAS daughter than my PANDAS son – and that’s not right. It’s something I need to work on.

 

-I’ve learned that apparently I will never run out of tears – of sadness, frustration or joy.

 

-I’ve learned that the marriage I discovered that strength in last year can be really tested when not tended to.

 

-I’ve learned that sometimes my husband can be smarter than me (only sometimes.) Just because he believes we should spend some time focusing on each other instead of PANDAS it’s not because he cares less about the children – it means he cares enough about them to want to give them the type of happy and stable home a strong marriage can provide.

 

-I learned that I’m still REALLY bad at taking time out for myself to recharge!

 

-I learned that there are a lot of people out there in the world trying to spread the word and gain awareness for this condition –and I’m thankful for that.

 

-I’ve learned that no matter what we call this damn disease – it doesn’t matter to my 4 and

5 year old who are suffering. They just want to get better.

 

-I’ve learned that I have an unreasonable hatred for black and white Chinese bears.

 

-I learned that no matter how much I learn about this – in the grand scheme of things I know nothing – and I have to keep on learning.

 

-I learned that for every time I question why God would do this to my children – I find my self asking him for the strength to carry on the fight to help them. And I find myself giving praise twice as often for the wonderful blessings He has given me in my children.

 

-I learned that the small things others take for granted become so much more important – like an unprompted “I love you mommy”, a hug, or simply eating dinner without having to have 4 of everything at the table!

 

-I’ve learned just how important it is for us to continue to come together to share our stories and experiences because helping just one child get through this – even if it’s not our own – is so rewarding.

 

-And I’ve learned that that kindness and generosity of folks who were strangers to me 2 years ago is endless.

 

Thanks again to everyone for their support and sharing. This community has been invaluable to our family as we continue to “fight the good fight”.

 

Here’s hoping next years post is all about what I’ve learned about “Life After PANDAS!”

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Thank you!

Last year I found it helpful to reflect on what I had learned in our first year after dx. So here I am again – 2 years later.

 

-I’ve learned just how disappointing it is to still need to be here after 2 years!

 

-I’ve learned that I can get my son back - I saw it myself – unfortunately for all too brief of a time.

 

-I learned that placing your children in giant plastic bubbles to keep them from catching strep is apparently frowned upon by society.

 

-I’ve learned that being right all the time is very overrated – especially when it’s because you suspected your other child had PANDAS.

 

-I’ve learned that having an incredible medical team already in place and an early diagnosis doesn’t lessen the heartache of watching your other child slip away from this disease.

 

-I’ve learned that this disease can affect each child so differently that just when you think you’ve got it figured out – it throws you for another loop.

 

-I’ve learned that I have different (and higher) standards and expectations for my PANDAS daughter than my PANDAS son – and that’s not right. It’s something I need to work on.

 

-I’ve learned that apparently I will never run out of tears – of sadness, frustration or joy.

 

-I’ve learned that the marriage I discovered that strength in last year can be really tested when not tended to.

 

-I’ve learned that sometimes my husband can be smarter than me (only sometimes.) Just because he believes we should spend some time focusing on each other instead of PANDAS it’s not because he cares less about the children – it means he cares enough about them to want to give them the type of happy and stable home a strong marriage can provide.

 

-I learned that I’m still REALLY bad at taking time out for myself to recharge!

 

-I learned that there are a lot of people out there in the world trying to spread the word and gain awareness for this condition –and I’m thankful for that.

 

-I’ve learned that no matter what we call this damn disease – it doesn’t matter to my 4 and

5 year old who are suffering. They just want to get better.

 

-I’ve learned that I have an unreasonable hatred for black and white Chinese bears.

 

-I learned that no matter how much I learn about this – in the grand scheme of things I know nothing – and I have to keep on learning.

 

-I learned that for every time I question why God would do this to my children – I find my self asking him for the strength to carry on the fight to help them. And I find myself giving praise twice as often for the wonderful blessings He has given me in my children.

 

-I learned that the small things others take for granted become so much more important – like an unprompted “I love you mommy”, a hug, or simply eating dinner without having to have 4 of everything at the table!

 

-I’ve learned just how important it is for us to continue to come together to share our stories and experiences because helping just one child get through this – even if it’s not our own – is so rewarding.

 

-And I’ve learned that that kindness and generosity of folks who were strangers to me 2 years ago is endless.

 

Thanks again to everyone for their support and sharing. This community has been invaluable to our family as we continue to “fight the good fight”.

 

Here’s hoping next years post is all about what I’ve learned about “Life After PANDAS!”

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I have learned to be thankful for what I have each and every minute because we all know - we can awaken on any given morning and our children can be "gone" again, with no rhyme or reason. Thank you for this post that I have been reading while my son watches "Chicken Run" on my bed. He says his feet are cold. I will go now, and warm them up and hold him close, all night - yes - another thing I am thankful for - not really giving a flying fig anymore what people think and not following the advice of pediatricians regarding separation with a 5 year old. He can sleep with me if it makes him feel safe.

 

Love and blessings and many, many good things for you all! 2012 will be our year. Keep fighting the good fight!

 

Thank you Arial.

 

Kath :)

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I have learned to be thankful for what I have each and every minute because we all know - we can awaken on any given morning and our children can be "gone" again, with no rhyme or reason. Thank you for this post that I have been reading while my son watches "Chicken Run" on my bed. He says his feet are cold. I will go now, and warm them up and hold him close, all night - yes - another thing I am thankful for - not really giving a flying fig anymore what people think and not following the advice of pediatricians regarding separation with a 5 year old. He can sleep with me if it makes him feel safe.

 

Love and blessings and many, many good things for you all! 2012 will be our year. Keep fighting the good fight!

 

Thank you Arial.

 

Kath :)

My 7 year old dd has been sleeping with me for almost 3 years

If she is happy I am happy

She will break her habit when she feels ok about it..

So I dont listen to the Pediatricians any more..

 

Tracie

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