Connected…

I was staring at the screen looking at 14 other mothers.  Women who have at least one child with the same PTEN mutation my girl and I have.

A quick scan of the “room” on this Zoom call showed me newly diagnosed, seasoned veterans, moms of teenagers, and moms of toddlers.  There were some mother/child combinations, and some with “de novo” or spontaneous mutations.  We lived mostly in the US, although one joined us from Australia.  Even as I watched my screen and jumped in to the conversation where I could, my mind was racing.

I “know” at least a few dozen more PTEN moms, and yet, Facebook algorithms being what they are, the call notification didn’t circulate as widely as it could have.

A few of these moms “know” us from this blog.  That was flattering and mind-blowing simultaneously.

It was like a “first date” with old friends-ones who I’m not likely to meet in person any time soon.

Listening to each one talk I wanted to spend hours with them.  I wanted to hear their stories in intricate detail.  I wanted to know about overlaps and differences.

Each story made me feel like I could fill out a giant Venn Diagram.

As moms I am sure some of us are alike, and some different.  In some cases if we lived nearby we might be the best of friends, and in others mere acquaintances.

Yet I felt an instant bond with every single one, and as I am notoriously terrible with names I admit even writing a note or two next to some names to help me remember their story.

We all had a common desire to be heard, and to hear.  We wanted to be heard by our children’s doctors, which with only 2 notable exceptions as locations seems to be a coast to coast failure.  And we wanted to hear other stories.  We wanted to feel less alone.  We wanted to know what happened with other people’s children.

I think on this call my girl was the oldest at 16.5 years, but there were others who had been diagnosed longer, as she was already 8 when our diagnosis came in 2011.

I had plans to attend the PTEN Foundation Symposium in Boston in May.  My plane tickets were refunded this week. I had hesitated canceling even though I knew for weeks in my heart it was not to be.  I hesitated because I was just so excited to meet some more moms like me.  Moms who have spent their child’s entire life being detective, advocate, voice, cheerleader, motivator, educator, and have earned their own type of medical degree from decoding research they once thought was impossible to understand.

I know there will be other gatherings, and I am grateful to the PTEN Foundation for that.  But, the need to connect runs deep.

I wonder why I feel so compelled now to meet others.   I have been doing this quite a few years with only a small handful of PTEN moms.  And truth be told I’ve been advocating for this kid’s medical mysteries since 2003!

I just saw this shirt pop up in my newsfeed.  I’m well aware of how deeply ads are targeted to us personally.  And it definitely is true.  I am by nature more introverted, especially in large groups, finding it easier to write than speak.

Except lately I miss people.  Not all people. Don’t worry I haven’t totally lost it yet.  But, the kind ones.  I miss the kind ones.

Something about a pandemic can help you reevaluate the importance of connection.

My family of three has spent so much more time together than we have in a decade. It has been a blessing in this difficult time to reconnect.

I have spoken to a few more old friends too.  Previously we were too busy to text, and certainly too busy to call.

I have learned how easy it is to Zoom, and FaceTime. I know now the value of face to face contact – even through a screen.

I have to ask myself if in a different time I wouldn’t have made an excuse not to get on that call.

In my heart I know the answer.

And I’m grateful for the forced lesson in the value of connection.

#beatingcowdens

#strongertogether

Finding the Rainbow

My mom has always loved rainbows.  I mean she REALLY loves them.  She would take us all outside when we were younger to look at them after a storm.  She would sometimes pull the car over so we could see them.  I remember always knowing they were special.  But, like so many things in life I think I am only starting to “get it” now.

Rainbow

What a June this has been!

There has been rain and more rain.  It only started to feel like summer a few days ago.  And while I am sure we will all be complaining of the heat soon – it is nice to see some sunshine.

As I walked out of my house to make a quick run to the store tonight there was rain.  Lots of it.  I went back in for my rain coat.  I had to be ready to pack lunch for Meghan as we head to her appointments tomorrow.  So, I had little choice.

As I was listening to the all familiar sound of the wipers on the windshield, I found myself looking for the rainbow in the sky.  There was sun, there were clouds.  There was rain.  I knew I would find it if I looked.

I thought about these last – almost 2 years since the Cowden’s diagnosis.  I thought about the twists and turns and sleepless nights.  The days when I was sure the sun would never shine again.  Yet – somehow it did.

I thought of my husband.  My strength in tumultuous times.  I thought of how he began school 2 years ago this week, setting out for his electrical licensing exam, never knowing three short months later life would be forever altered with mine and Meghan’s diagnoses.

I thought about how the course that was only supposed to take a few months, and the test that should have been in early 2012 ended up being in January of 2013.  I thought of him trekking to school two nights a week, and studying every spare moment.  I thought of how flat out proud we were as he passed the written exam with ease.

Through tests, surgeries, scans, cancer, agonizing waiting – he persevered.I am not sure I could have kept my focus.  But he took it a step further.

Perhaps it was out imminent family health crisis, or maybe his own internal motivation, in June of 2012 he began his journey towards better health on Isagenix.

While continuing in school  and under extreme stress, he has managed to lose, and maintain the loss of about 45 pounds.

meghanleigh8903.isagenix.com
meghanleigh8903.isagenix.com

He took the second and final part of the exam on June 4th.  The passing score came in the mail Monday.  Now all that stands between him and his Mater Electrician License is some tedious NYC paperwork, and undoubtedly some more fees…

As I looked for the rainbow I couldn’t help but think, that even though they are sometimes hard to see, and even thought the days are sometimes dark and cloudy –  they are there.  They wonder, the beauty – all perfectly placed to be appreciated.  If we look…

Tonight's rainbow 6/26/13
Tonight’s rainbow 6/26/13

I am so proud of my husband.  I am so grateful that he is so often the rainbow on that cloudy day.

My mother taught me to look for rainbows.  I get it now Mom.  I get it.

My husband helps me find them.

I am a lucky girl.

Thyroid sonogram tomorrow – 10 AM.

We’ll be looking to make our own rainbows along the way.