You’re Invited…Nicholas’ First Birthday Party

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Categories: Blog

Carolyn Savage

Last night I fell down a rabbit hole of memories.

I was flipping through my phone and unearthed videos and pictures that I hadn’t seen or thought about in what seems like an eternity.  It’s hard to remember what it was like when Nicholas was a newborn.  How perfect he was on this day exactly one year ago…and then how far from perfect we ventured in the months following his birth.  There are times when the memories of what our son went through seems like a dream.  A really, really bad dream.  Especially when I look at him now.

You’d never know.”

I hear that a lot and I agree.  It’s hard to imagine that Nicholas was so very sick.  And the medical mystery that surrounded his deteriorating condition and perplexed doctors at five different hospitals…well, I am just eternally grateful he survived.

Nicholas still wakes every night for a feeding.  I know from a nutritional standpoint that he really doesn’t need it.  I know from a sleep training standpoint that I should let him work it out and end our 4 am rendezvous.  But they last all of ten minutes, and that time I spend rocking him in the dark and snuggling his body close to mine … Read the rest

Nicholas’ Fight

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Categories: Blog

Carolyn Savage

A couple of weeks ago I listened to a priest talk about how sometimes it makes sense to pray for God to take something away.

Here’s my struggle Lord.  Please take it from me.”

The homily struck me because I’ve never prayed for a challenge to be “taken away”.  I’m a realist and I know life’s unwelcome curveballs don’t just disappear.  They require journeys.  Long, hard, sometimes gut-wrenching journeys.  The good thing about journeys, however, is that they end.  Sure, they often leave marks on us, but we determine how those marks manifest themselves in our daily lives.

I knew I couldn’t control the journey…but I couldcontrol what I’ll look like…be like…at the end.

This always held true for me…until now.


People often ask me if Nicholas will grow out of his disease.  It’s a question that pains me because I wish I could say yes.  I would love to think that with time Nicholas will get better.   The cold, hard truth is…he won’t.  Sadly, he’s going to get worse.

Typing those words makes me cry.

They also instill resolve.  You see, there is a cure for PCD.   I’m not sciency enough to explain how the cure would work but I can tell you it has a … Read the rest

Craving Family…The Four Week Itch

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Categories: Blog

Carolyn Savage

It’s been four weeks since the boys left for college.  Some times I wonder what my life would be like if our early family of four had stayed a family of four.

Sean and I would be empty nested right now.  NOW!  At 46! I’d be kidless!  The mere thought of it makes me twitchy…and curious.  Other than being well rested and probably duly employed, I think I’d be bored.  And sad.  I always knew there were more children in our future.  That feeling of being incomplete was ever present before our four youngest came to be.

Now that Drew and Ryan are away at college that feeling of “incompleteness” is back–but different.  I certainly am not craving another tangle with pregnancy.  Those days are over and our family is definitely complete.  But when the boys are gone two pieces of our family are missing.  Of course, I know they have to be gone.  They are 21 and 18.   College is the right place for them to be.  They have futures to prepare and dreams to chase.

I used to think the toddler years were the hardest stage of parenting.  Now I’m actually convinced that the emptying of the nest is more difficult.  The adjustments are gargantuan.  Shifting one’s … Read the rest

The Lessons of My Half Full Cup…Six Years

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Categories: Blog, gratitude, IVF, Logan, perspective, Resilience, thankful

Carolyn Savage

It’s been six years.  Can you believe it?

It was just like today.  Cool, sunny, with blue skies and fluffy white clouds.  I remember opening the windows in my bedroom that morning wondering if today would be the day.   I tried to relax and forget about the kerfuffle surrounding my pregnancy.

When the phone rang and I saw it was Sean I thought he was calling to check in on me.  When he spoke, however, I could hear the hurt in his voice.  “Have you seen the paper?

No, ” I replied.  “I told you I’m not reading the paper or watching television until this baby is born.  I can’t take the stress.”  Our story was the front and center of the  current news cycle and not all of the journalists were getting it right.  It was frustrating to see the details of what was happening to me…to our family…getting botched.  So, I promised to stop chasing my tail trying to correct everything and just concentrate on the health of my pregnancy.

“They went to the bishop for a reaction.  He said we’d committed a mortal sin by using IVF.  That no good could come out of the commission of a sin.

That … Read the rest

Gratitude for Nicholas

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Categories: Blog

Carolyn Savage

September is my favorite month.  Mostly because of the weather.  This week we are forecasted to have seven straight days of sun, fluffy clouds and no humidity.


I don’t know if it was the happy weather, or our planets aligned perfectly but something went terribly right last week.  Come to think of it, it was probably the prayers that were so generously sent for Nicholas.  It never ceases to amaze me how quick people…total strangers…are to stop what they are doing and hold our sweet little boy in their hearts.



Thursday night I hardly slept.  I was a wreck thinking about the surgery and the news it could bring.  I know Nicholas has a diagnosis and although it’s not the best, it’s an answer.  I always thought there was peace in answers.  As I get a little more life under my belt I’m coming to realize that sometimes answers beget more questions…and worries.

Our doctor found that pesky collapsed upper right lung lobe during our August check up at the Rainbow Children’s PCD clinic.  As he stared at the x-ray I could read his face.  There was disappointment in his expression.  We all were hoping that as Nicholas grew his airways would become more capable of aerating … Read the rest

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