… some rain must fall.

Last summer we invested in a new roof for the house.  I’ve never regretted it.  Truth be told we had no choice.  There were leaks and dry rot.  All sorts of potentially serious places for significant damage.   Lots of horrendous storms have pounded down on this roof since the summer of 2013 – both literally and figuratively.  But we’ve stayed safe and dry.  I have to figure its some combination of strong plywood, and a well done roofing job, coupled with our strong family bond, deep faith, and our ability to keep laughing.

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The weather forecast this week is pretty awful.  And I started thinking about how, “into every life some rain must fall.”  And I started to wonder, whether maybe we’ve actually had enough rain.

Cowden’s Syndrome brings its own share of cloudy, overcast, generally awful days.  And life, well it can get dicey and complicated even without Cowden’s Syndrome.  This year has been wild.  Full of so much sadness, and hurt, and sorrow.  And in between there peeked in some fun, happy times.

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This month has been tricky.

These last 2 weeks….

I’m really starting to think it might be time to consider an ark.  I’m not wallowing.  Nor do I think we are the only ones buried enough to need that ark (we’ll share,) but wow.  Just, wow…

rain 5 ark

Two weeks ago tonight we rushed Meghan to Lenox Hill Hospital for emergency surgery on the AVM in her right knee.  The 50 ccs of blood were removed from the knee-joint, and by Wednesday we were sent on our way.  Thanksgiving weekend was spent home.  Low key.  Leg up.  Resting.

We had goals.  All geared towards December 8th.  Goals set by the medical team.  Swim practice was to begin again tonight.  And Mom, FYI – goals are different from plans… 🙂

We slowly weaned off the crutches, and the pain medicine.  We moved to an ace wrap as needed.  By last Monday the 1st she went to school still in pain, but unassisted.  The swelling was going down.  The healing had begun.

But by Friday she couldn’t do it.  Had to stay home because of the pain.  The swelling looked a little off too.  More rest.

rain 1

Sunday she woke up late and come down the stairs declaring the pain was worse – and “different.”  The knee looked horrendous.  And very similar to its pre-op state.  More resting.  Some pictures.  Some brainstorming.

ER 11/24
ER 11/24
Living room 12/7
Living room 12/7

All the while Allie, our oldest dog was having troubles of her own.  Allie, lethargic for a bit – collapsed on a walk.  Felix called me to pick him up carrying 70 pounds of dog.  Off to the vet for abdominal x-rays and a negative test for pancreatitis.  There was no discrete mass of the x-ray, just some shadowing.  They decided to try to treat for pancreatitis despite the negative test.  There aren’t too many other good options and I am worried.

And so we got medicine for Allie, and got her boiled chicken and rice for her bland diet.

And we took pictures of Meghan’s leg and elevated the knee.

Today we got up early to give Allie her medicine together.

Then Meghan dragged her painful, aching leg around school until I could get us an appointment.

1:30 arrival at Lenox Hill.  Sonogram initially showed no blood.  Then, wait for it…. there it is.  But no obvious spot its coming from.  Shocking really.  Could it be residual from the procedure two weeks ago?  It looked to be about 5ccs.  Nothing compared to the 50, but I remember a time less than 5ccs of blood in the knee-joint freaked them all out.  Now all of a sudden – we’ll just wait and see.

They used words like “discomfort,” and “irritating.”  She used words like, “excruciating.”

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Not the first time we haven’t seen eye to eye.  But he’s all we’ve got.  One of very few doctors in the north-east to operate on these in kids.

I get not racing back in.  I do.  But validate the kid for the love…. I know she’s super sensitive, but that just means she feels EVERYTHING, INCLUDING the stray blood in her knee.

Wrap it.  Elevate it.  Put swim off another week.  (Tough talk from the guy who initially said she wouldn’t even need crutches.)

In the car Meghan told me to get my Christmas shopping done.  Just in case.  She hopes she’d wrong – but it doesn’t feel right.

My money’s on her- and it’s a bet I hope to lose.

Allie, she’s super mushy.  Who knows?

photo 1 (5)

Online shopping here I come.

I’m done with the rain.  Really over it.  Rainbow anyone?

rainbow real

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.