Happy 5th PANDAversary to me!

[airial95]

It’s that time of year again, our PANDAversary! It has been 5 years today since we have been on this journey.

 

It was 5 years ago today that our doctor told us about PANDAS.

 

It was 5 years ago today that he went against what little was known about PANDAS at the time and suggested we try 30 days of antibiotics for our 26 month old son rather than sending us to a psychiatrist to medicate him, even though he was “too young” according to the diagnostic criteria.

 

It was 5 years ago today that I looked at my husband upon leaving the doctor’s office and told him we needed to find a new doctor because “if he thinks some penicillin is going to bring our son back from being the spawn of Satan – he’s lost his mind.”

Turns out, he wasn’t out of his mind.

 

Every year, on our PANDAversary, I’ve shared my thoughts and reflections of the previous year. I’ve found it helpful for me to reflect on how far we have come on this journey. After reading through my previous reflections (http://latitudes.org/forums/index.php?showtopic=22212&hl=) I realized this year was different.

 

After 5 years, I find I’m no longer even thinking about “Life without PANDAS”.

 

After 5 years, I’m finally just enjoying living LIFE.

 

Are we fully recovered? Nope. Not even close.

 

There are still flares.

 

There are still way more meds than any kid should have to deal with.

 

There are still fights with the school.

 

There are still lots of doctors’ appointments, blood draws, and hassles with insurance.

 

There are still bad days.

 

But there’s also LIFE.

 

There are sleepovers with friends.

 

There are football games.

 

There are family trips to the beach.

 

There are lazy snuggly mornings curled up binge watching Netflix.

 

There are even some times when they’d rather be with friends than with Mommy.

 

There is time for Mommy to do yoga, read a book, or have a beer with friends (although still not enough!!)

 

There’s logging onto Facebook JUST to catch up with old friends! (Who knew??)

 

This year, we decided to stop waiting to live our lives until the PANDAS is gone, we decided to start living the lives we have -

now.

 

Have we given up the fight? Nope. Not even close.

 

The fight will continue, just as it always has.

 

But we are not putting our lives on hold anymore for PANDAS.

 

Life is too short.

 

We may not be living the lives we thought we would before PANDAS became our reality, but we are making the most of what we have.

 

Do our sleepovers with friends look like something out of Norman Rockwell? Nope. Not even close.

 

Do our football games always end with having snacks with the team instead of tears and a tantrum? Nope, Not even close.

 

Do our family trips to the beach involve a lot more crazy than your typical family? That would be an understatement!

 

But through it all, we are finding our own happiness and creating memories that involve more than anger, fear and tears.

 

God has given us so many blessings, and we decided it was time to start appreciating them!

 

And yes, it took me 5 years to figure that out.

 

It took me 5 years to grieve for the loss of the life I had imagined, and to fully embrace the one we have.

 

Looking back on my previous reflections, I wish I would’ve gotten to this place sooner, but I realize I needed to get to this place on my own pace.

 

I also realize that the all of the hard work and effort into helping my kids has played a big role in getting to the place we are now.

 

Will I still be in this same place next year? Only time will tell, but until then, I’m going to try to make the best of the crazy, unpredictable life that I have. I’ll take each day as it comes, cherishing the good days, and keeping perspective on the bad ones.

 

Folks are often asking for stories of hope and recovery. I can’t speak to full recovery, but I can share our story of hope through the chaos.

[philamom]

It’s that time of year again, our PANDAversary! It has been 5 years today since we have been on this journey.

 

It was 5 years ago today that our doctor told us about PANDAS.

 

It was 5 years ago today that he went against what little was known about PANDAS at the time and suggested we try 30 days of antibiotics for our 26 month old son rather than sending us to a psychiatrist to medicate him, even though he was “too young” according to the diagnostic criteria.

 

It was 5 years ago today that I looked at my husband upon leaving the doctor’s office and told him we needed to find a new doctor because “if he thinks some penicillin is going to bring our son back from being the spawn of Satan – he’s lost his mind.”

Turns out, he wasn’t out of his mind.

 

Every year, on our PANDAversary, I’ve shared my thoughts and reflections of the previous year. I’ve found it helpful for me to reflect on how far we have come on this journey. After reading through my previous reflections (http://latitudes.org/forums/index.php?showtopic=22212&hl=) I realized this year was different.

 

After 5 years, I find I’m no longer even thinking about “Life without PANDAS”.

 

After 5 years, I’m finally just enjoying living LIFE.

 

Are we fully recovered? Nope. Not even close.

 

There are still flares.

 

There are still way more meds than any kid should have to deal with.

 

There are still fights with the school.

 

There are still lots of doctors’ appointments, blood draws, and hassles with insurance.

 

There are still bad days.

 

But there’s also LIFE.

 

There are sleepovers with friends.

 

There are football games.

 

There are family trips to the beach.

 

There are lazy snuggly mornings curled up binge watching Netflix.

 

There are even some times when they’d rather be with friends than with Mommy.

 

There is time for Mommy to do yoga, read a book, or have a beer with friends (although still not enough!!)

 

There’s logging onto Facebook JUST to catch up with old friends! (Who knew??)

 

This year, we decided to stop waiting to live our lives until the PANDAS is gone, we decided to start living the lives we have -

now.

 

Have we given up the fight? Nope. Not even close.

 

The fight will continue, just as it always has.

 

But we are not putting our lives on hold anymore for PANDAS.

 

Life is too short.

 

We may not be living the lives we thought we would before PANDAS became our reality, but we are making the most of what we have.

 

Do our sleepovers with friends look like something out of Norman Rockwell? Nope. Not even close.

 

Do our football games always end with having snacks with the team instead of tears and a tantrum? Nope, Not even close.

 

Do our family trips to the beach involve a lot more crazy than your typical family? That would be an understatement!

 

But through it all, we are finding our own happiness and creating memories that involve more than anger, fear and tears.

 

God has given us so many blessings, and we decided it was time to start appreciating them!

 

And yes, it took me 5 years to figure that out.

 

It took me 5 years to grieve for the loss of the life I had imagined, and to fully embrace the one we have.

 

Looking back on my previous reflections, I wish I would’ve gotten to this place sooner, but I realize I needed to get to this place on my own pace.

 

I also realize that the all of the hard work and effort into helping my kids has played a big role in getting to the place we are now.

 

Will I still be in this same place next year? Only time will tell, but until then, I’m going to try to make the best of the crazy, unpredictable life that I have. I’ll take each day as it comes, cherishing the good days, and keeping perspective on the bad ones.

 

Folks are often asking for stories of hope and recovery. I can’t speak to full recovery, but I can share our story of hope through the chaos.

Nicely said! Thanks for sharing!

[HopeinHIM]

It’s that time of year again, our PANDAversary! It has been 5 years today since we have been on this journey.

 

It was 5 years ago today that our doctor told us about PANDAS.

 

It was 5 years ago today that he went against what little was known about PANDAS at the time and suggested we try 30 days of antibiotics for our 26 month old son rather than sending us to a psychiatrist to medicate him, even though he was “too young” according to the diagnostic criteria.

 

It was 5 years ago today that I looked at my husband upon leaving the doctor’s office and told him we needed to find a new doctor because “if he thinks some penicillin is going to bring our son back from being the spawn of Satan – he’s lost his mind.”

Turns out, he wasn’t out of his mind.

 

Every year, on our PANDAversary, I’ve shared my thoughts and reflections of the previous year. I’ve found it helpful for me to reflect on how far we have come on this journey. After reading through my previous reflections (http://latitudes.org/forums/index.php?showtopic=22212&hl=) I realized this year was different.

 

After 5 years, I find I’m no longer even thinking about “Life without PANDAS”.

 

After 5 years, I’m finally just enjoying living LIFE.

 

Are we fully recovered? Nope. Not even close.

 

There are still flares.

 

There are still way more meds than any kid should have to deal with.

 

There are still fights with the school.

 

There are still lots of doctors’ appointments, blood draws, and hassles with insurance.

 

There are still bad days.

 

But there’s also LIFE.

 

There are sleepovers with friends.

 

There are football games.

 

There are family trips to the beach.

 

There are lazy snuggly mornings curled up binge watching Netflix.

 

There are even some times when they’d rather be with friends than with Mommy.

 

There is time for Mommy to do yoga, read a book, or have a beer with friends (although still not enough!!)

 

There’s logging onto Facebook JUST to catch up with old friends! (Who knew??)

 

This year, we decided to stop waiting to live our lives until the PANDAS is gone, we decided to start living the lives we have -

now.

 

Have we given up the fight? Nope. Not even close.

 

The fight will continue, just as it always has.

 

But we are not putting our lives on hold anymore for PANDAS.

 

Life is too short.

 

We may not be living the lives we thought we would before PANDAS became our reality, but we are making the most of what we have.

 

Do our sleepovers with friends look like something out of Norman Rockwell? Nope. Not even close.

 

Do our football games always end with having snacks with the team instead of tears and a tantrum? Nope, Not even close.

 

Do our family trips to the beach involve a lot more crazy than your typical family? That would be an understatement!

 

But through it all, we are finding our own happiness and creating memories that involve more than anger, fear and tears.

 

God has given us so many blessings, and we decided it was time to start appreciating them!

 

And yes, it took me 5 years to figure that out.

 

It took me 5 years to grieve for the loss of the life I had imagined, and to fully embrace the one we have.

 

Looking back on my previous reflections, I wish I would’ve gotten to this place sooner, but I realize I needed to get to this place on my own pace.

 

I also realize that the all of the hard work and effort into helping my kids has played a big role in getting to the place we are now.

 

Will I still be in this same place next year? Only time will tell, but until then, I’m going to try to make the best of the crazy, unpredictable life that I have. I’ll take each day as it comes, cherishing the good days, and keeping perspective on the bad ones.

 

Folks are often asking for stories of hope and recovery. I can’t speak to full recovery, but I can share our story of hope through the chaos.

What a blessing this was to me. Thank you for sharing !!!