You Can’t Have a Rainbow Without a Little Rain

rainbow rain

As a young child a can remember hearing stories of rainbows in Sunday School.

This week I needed lots of reminders that I am not alone.  God keeps His promises.

Yesterday we saw Endocrinology at MSKCC in NYC.  They spent an hour and ten minutes preforming a detailed sonogram of Meghan’s thyroid.  She was an angel – calm and patient.  I watched the whole thing, uncomfortable with how much I am able to see on an ultrasound now.  The things we learn through repetition.

It was obvious to me that the many nodules – well over 10 – are still there.  At least three are quite large.  I watched as they were measured, and my “numbers” brain frantically tried to recall the stats from December that had led us to January’s biopsy.

We spent an hour waiting on the ninth floor, the pediatric cancer unit.  And as I have said before, and I will say again, if you ever need to count your blessings, I mean truly count them, I strongly suggest you swing by there.

rainbow not thunderstorm

Meghan played on her iPad as I watched.  Chemo pumps beeping.  Children from 2 to 20, some seasoned veterans, some terrified newcomers, attached as the poison to kill the evil cells drips into their body.  Some sleeping, some resting, some running.  And their parents. Dark eyes.  Worry.  Terror.  Fake smiles.  Bitten up coffee cups.  “Count your many blessings count them one by one…”

“Mom, I am not scared of thyroid cancer.  I am only scared if they don’t catch it early enough.”  I knew what she meant. She went back to playing.

In the doctor’s office there was a moment for us to be relieved, kind of.  The nodules are slightly larger, but are growing slowly.  They are still in that same “precancerous” state, but we are not in imminent danger.  No biopsy right now.  We get at  least another 6 months out of the thyroid.

Then there were the other conversations.  The ones about hormone levels that won’t regulate on lab work.  The MRI that showed a pituitary “diminutive in size.”  The inconsistencies of these tests with her current development.  The statement from the endocrinologist that this lab test (having already been repeated 4 times,) “defies human physiology.”

Yeah, and…

So he drew the labs again.  This time at “his” lab.  And a thyroid panel, and a few other things.

He’ll call me Monday.  Then I will find out more about “human physiology.”

At swim practice last night I met a mom.  She has an only child too, just about Meghan’s age.  And she is BRCA positive. So, after a day of doctors, somehow we were placed in each other’s path last night.  And, I had conversations with a virtual stranger that I probably haven’t had with some of my closest friends.  There are no coincidences.  Of this I am sure.

And this morning – barely able to move from stress and fatigue, salivating for a day of “vacation,”  we dragged ourselves out of bed again.

rainbow snoopy

I packed the bags – always bringing lunch and a few snacks, and we headed out – a little later than I wanted.  As I crossed the bridge I had the sinking feeling that I didn’t have my wallet.  Back across the bridge.  Back home.  Back out.  An accident on the FDR assured me that I couldn’t use the $14 parking coupon I had printed.  Into the $42 lot we went. We made it into the office at 10:03.

The vascular surgeon is uptown.  He has been inside of Meghan’s knee 4 times, so he knows her well.  This time we had less overall pain to report.  But, of course he never felt the pain was connected to the AVM anyway.  So I recounted tales from her PT evaluator, and her swim instructor about how difficult it is for her to run without limping, or to push off to start a race from the block  I had his attention.  The legs have different girth.  The left is undoubtedly stronger then the right, having been spared the AVM.  Do you take her for PT he asked?  Um… constantly.

Fortunately we love Dr. Jill!

We took her out of soccer and dance and put her in swimming.  There isn’t much else we can do.

Oh, and could you look at her wrist?  The one she hurt at the school carnival almost 4 weeks ago.  She was victorious at her quest to climb the rock wall.  Stubborn, competitive child.  But has paid the price since.

For a few days I told her to suck it up.  I admit it.  But it kept going.  Knowing Meghan as I do, she will keep me abreast of every pain – but the SECOND it stops, its like it never happened.  This one wasn’t quitting.  Dr. Jill helped us.  We tried a brace. Then another one.  Then no brace.  No better.

So as I watched the doctor manipulate her wrist I couldn’t help but remember my frustration the day after the carnival, when all of her friends walked around unscathed, and she suffered terribly with pain all over.  I remember thinking how cruel it was that she had to make a conscious decision to suffer in agony the next day – if she wanted to keep up with her friends.

He examined it for what seemed like forever.  Then he asked me who my orthopedist was.  I laughed out loud.  The one subspecialty we have NOT found – is pediatric orthopedics.  So he asked if she had a rheumatologist.  I said we were headed there July 9th.  He said try to move it up, and call him after I saw her.  She needs and MRI of that wrist.

“I don’t think it’s vascular…”  And after that we will get one of the knee – just to be safe.

There went two more days off the summer calendar.

40 blocks away was the geneticist.  He is the one we credit with saving my life.  And I credit the angels with placing him in our path two years ago.

We spoke at length.  He has more questions.  More research.  He has a theory.  He will call me.  He will send me the articles.  The conversation lasted an hour.  He is brilliant.

She hugged him and told him she wants to be a geneticist.  We have a friend for life.

The people training on the  new teacher evaluation system in NYC frequently declare “This is going to create more questions than answers.”  I don’t know why I find the system to be perplexing.  I should be used to it by now.

It rained tonight.  Thundershowers.  They have been happening a lot lately.  Maybe I need a lot of reminding.  The rainbows are there.  The promise remains.  Nothing happens by accident.  God’s timing is perfect.

6/28/13
6/28/13

“Count Your Many Blessings…”

Count your many blessings, count them one by one.  Count your many blessings see what God has done…”

The song has been stuck in my head all afternoon.  I remember as a youth singing the song in church.  I must have sung it plenty of times, because the lyrics are stuck in my subconscious.  And, as things int he subconscious tend to do – they often pop out at just the right time.

rare supermoms

 

A busy weekend full of blessings.

Saturday we celebrated the anniversary of my Mom and StepDad.  25 years is quite a milestone, and we were so thrilled to celebrate with family and a few dear friends.

Mom and Ken anniversary

 

What a blessing that among the guests we had Grandma and Pop, and Grandma Hansen.  Although we missed Grandpa Hansen we were so thrilled to count our blessings together.

Mother’s Day morning I woke alongside my awesome husband.  I was greeted by my beautiful daughter and lots of hugs and kisses.  Some hand made cards, and a few nice gifts and we were off to church.

We traveled after church. to visit with Felix’s Mom and Dad.  We endured the (It could have been worse) Belt Parkway and spent some time with his parents, sister and nephew.  Felix’s Grandma passed away just a few short months ago, so this day was especially difficult for his Mom who was very close to her Mom.

On the return trip we make a quick visit to my mom and got to see the grandparents again.  How many 39 year olds can kiss a few Grandmothers on Mother’s Day?

How lucky am I to hug my Mother – a feisty lovable survivor of cancer and life?  How blessed am I to have her in my life -by my side?

As we headed home, absolutely exhausted.  That song started in my head.

“Count your many blessings…”

HappyMothersDay

I thought of the friends I have who are desperate to be mothers.  The friends who had to struggle to have the children they have.  The friends who have miscarried, and friends whose young children live in Heaven.  I thought about friends who miss their Moms, whose hearts ache every day at the loss – whether it was last week or a decade or more ago.  I thought about my friends who never got the years with their grandparents that I have had.

Shame on me for feeling tired.  How lucky am I to need a list to shop for Mother’s Day Cards?  How fortunate am I to have so much visiting to do that I can sparsely fit it all in?

One might think Mother’s Day is for relaxing – or spending quiet time alone.  But, I am aware that those years will come all too soon.  For now – let me run, and visit, and hug and chat.  Let me relish the moments in a life that is fleeting.

I kissed my little girl tonight.  I held her almost 5 foot frame and cuddled her as best I could.

She won’t be in school tomorrow.  A rampant virus, and her rotten immune system are not a good match.  She won’t plant with her science class the way she likes to.  She won’t play in the yard with her friends.

Tomorrow will be yet another day in the complicated life of a little girl with a multifaceted Rare Disease.  A day of  differences and disappointments.  A day she will handle with the same graceful smile she uses for every other aspect of her life.

My_Greatest_Bles_4bce6cc17bc3d

My daughter is the one who reminds me to count my blessings.

And, oh do I have many!