You’re Invited…Nicholas’ First Birthday Party

AUTHOR: | POSTED: 11/12/15 10:01 PM

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 is special.  It’s cozy.  It’s safe.  It’s quiet and private.  It’s almost like I’m trying to make up for the trauma of his first few months in this world.

It’s also during that time that I often think about Nicholas’s mere existence.

You know…he really shouldn’t be here.  How is it that we did everything under the sun to get pregnant during what was supposedly the most fertile time in my life and couldn’t but then conceived naturally at 45?

I was told carrying another pregnancy after Logan would be treacherous…damn near disastrous to my health.  Yet we didn’t hit a prenatal glitch.  How?

How is it that our newborn baby boy survived a relentless pneumonia that eventually morphed into bacterial meningitis?  Nicholas should have permanent brain injury…or hearing loss…or all of the other things that almost always come with bacterial meningitis in a newborn.  But he doesn’t!

How are you here?”

I’ve learned over the years that answers are elusive.  As I’ve lived this past year with Nicholas and processed everything we’ve been through–everything he’s been through–I’ve accepted that answers aren’t always necessary.  Even though we often want them.  We stomp our feet, and raise our fists wanting so desperately to know, “why?”

Why did this happen?  Why didn’t that happen?  How did this come to be?  Why didn’t that come to be?

I think my life’s experience has shored me up for this journey.  Enduring the pain of infertility;  shepherding Logan into our world while balancing a broken heart with a resolute soul; learning to focus on  the blessings in front of me instead of dwelling on the dreams that got away;  all of it has steeled me for the challenges that come.

Perspective is my weapon.

It allows me to be positive about the present and hopeful for the future even in the face of uncertainty.  Perspective has also allowed me to accept the mysteries of my life.

Today I celebrate Nicholas’ life.  He has brought so much joy into our home.

For that we are grateful.


In honor of Nicholas’ first trip around the sun we are asking our friends and family to consider a gift to the PCD Foundation.  Nicholas doesn’t need a big party with gifts and cake.  He needs a cure.    Funding research is our best avenue to providing Nicholas and other children with PCD the best chance at a healthy and full life.

If you can donate we’d be touched.  And, if you can continue to pray for him…we’d be thrilled.

Either way…just know we are grateful you are here.

To donate click here



Nicholas’ Fight

AUTHOR: | POSTED: 11/9/15 1:24 PM

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 lot to do with the ability to edit the genetic mutation that caused his disease.  Just last week the Today Show ran a piece on the promise of genetic editing.  You can watch the segment here….


Now that Nicholas is on the cusp of his first birthday Sean and I have a few goals.

Goal #1 –  Keep Nicholas Healthy

In order for Nicholas to stay healthy we must be vigilant with his daily airway clearance therapy, nubulized medications, and good old-fashioned hand-washing.  (We are hand washing/sanitizing freaks!)  This week, Nicholas will also begin a six month round of RSV vaccinations to protect him from a virus that could cause him to crash and burn. In addition, Nicholas is home bound for cold and flu season.  We will try to minimize public exposure because a simple cold virus is a serious matter to children with PCD.


Keeping this little guy healthy requires vigilance and self-discipline. He doesn’t get to do many of the things we’d like him to do simply because we don’t want him exposed to germs.

Goal #2 –  Find A  Cure

I’ve mentioned before that I belong to a private Facebook group comprised of people who are dealing with PCD either in their children or themselves.  There’s a lot of talk about cures.  We all know the science is there but it will take research to get the FDA to approve the treatments that PCD patients need to regain their health.  The process will be lengthy, but will likely come in Nicholas’ life time.

The sooner the better.




Of course, I pray. I pray for good health.  I pray for wisdom on behalf of his doctors.  I pray for tenacity for the researchers who are getting so close. And, I pray that somehow…some way…God will take this away from my boy.

That’s new for me.  Let’s hope it works.


On Wednesday I will be posting a way that you can help us celebrate Nicholas’ birthday.  We aren’t throwing the typical big first birthday blow out.  We can’t allow him to be around too many people right now.  Instead, it’s going to be a virtual birthday party.  

Consider this your formal invitation!  

Craving Family…The Four Week Itch

AUTHOR: | POSTED: 09/28/15 12:50 PM

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 focus from daily life with someone to one without is confusing.  After all, for 18+ years I focused most of my decision making on what was best for each child.  When even just one of them leaves it forces a redefinition of every routine in our house.

Don’t misunderstand.  I am elated for them. So excited in fact that sometimes I wish I could take their place.  The idea of going back to college and learning…and having fun…well, it’s all so appealing to my 46 year old self.  I am desperate for them to take advantage of every second of their collegiate experience.

That being said, somewhere around four weeks apart, I get kidsick—or family sick.  I would equate the feeling to my 4pm craving for chocolate.  I just need a taste.  I am happy to report we got one this weekend.  Drew turned 21 last week and a birthday celebration was the excuse we needed to pull everyone back into the nest.  It was a 48 hour leave for them and a 48 hour reprieve for me.

Because time was of the essence, we made the most of it…

Friday night high school football game...with everyone!

Friday night high school football game…with everyone!


Saturday cross country meet with Sean coaching MK's group!

Saturday cross country meet with Sean coaching MK’s group!


Sunday soccer cheered on by the big brothers!

Sunday soccer cheered on by the big brothers!

The time went by in a flash.  Before we knew it I was rushing through the aisles of our grocery store, both boys in tow, picking up essentials…like Ramen Noodles and cases of water.  Drew needed to depart first so he followed me to the store in his car.  Time had run out and as soon as I stocked him up, he needed to hit the road.

As I stood in the check out lane memories of grocery trips past flooded over me.

They were scanning their items.  I remembered practically dancing a jig in the checkout lane in order to keep them from destroying the candy display.  

We were walking to Drew’s car.  I remembered the frantic logistics of wrangling two active young boys in a grocery store parking lot.  “Hands in my pockets.” I used to scream at them.  I figured if each one had a hand in my pocket they couldn’t get far enough away to get hit.

As Drew slammed his trunk shut, groceries all tucked away, I knew the dreaded time had come.

First he gave his brother a hug… I remembered when I had to strap them into opposite sides of the car to keep them from hitting one another.

Then he gave me a hug…I remembered a day when I would have never let him out of my sight in a grocery store parking lot.  

He bent down a little during our embrace.  I remembered the way he felt on my hip.

And then he was gone.

Ryan left a few hours later.  And the house grew quieter.



Those first few moments after a child leaves to go back to…well…wherever they belong, are hard.   That lump in my throat gets a little thick for a moment. Then I remembered…College is good.  They are growing up and moving forward.  Their futures are bright. My motherhood tank is full.  All is as it should be and I’m grateful for that.

Now…to survive the next four weeks.


I would like to wish our oldest a very happy 21st.  It’s hard to imagine that more than two decades have past since he changed our lives for the better.  I can only hope that the rest of his life will be as blessed!

Drew, age one, 9/22/95

Drew, age one, 9/22/95

Drew, age two, 9/22/96

Drew, age two, 9/22/96

Drew, age six, 9/22/00,

Drew turns 18! 2012

Drew turns 18! 2012

Drew (21) and little brother.

Drew (21) and little brother.

The Lessons of My Half Full Cup…Six Years

AUTHOR: | POSTED: 09/24/15 10:33 AM
CATEGORIES: Blog, gratitude, IVF, Logan, perspective, Resilience, thankful

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 did it.  I am convinced you can hear blood pressure rising. It makes a buzzing sound in your ears which feel like they are burning off of your head.

I grabbed my cuff, wrapped it around my arm and noted the reading.  145/95.  Time to call the doctor.



I’ll never forget the moment right before he was born.  I closed my eyes and waited for the hurt.  Not the hurt of the actual delivery.  The hurt in my heart.  I knew as soon as they cut the cord, he was no longer mine.  I was scared.

Scared of what was coming next.

I’d prepared for the moment.  I’d worked long hard hours with a wonderful therapist who helped both Sean and I reframe the moment.  “Don’t look at it like a loss.  Look at it like a gift.  A gift you get to give another family.  The ultimate gift.”

So that’s what we did.

Here he comes.”  I could feel them digging inside of me.  Trying to get a grip on the little gymnast that was doing anything and everything to evade their efforts.  When they finally lifted him out I clenched my eyes shut.

Here it comes.  The hurt.

Do you want to see him?”  Those were the words that snapped me out of my trance.  Then I heard him cry. A loud, beautiful cry.  My eyes flung open as my instincts took over.

Of course.  Yes.  Yes.  I want to see him.

Then came the gift.

You see, when they held him up over the curtain something magical happened.   As I stared at my baby I realized it didn’t matter that he wasn’t mine.  It didn’t matter that I wasn’t going to get to rock him to sleep, walk him to his classroom on the first day of school, or usher him through his childhood.  This wasn’t about loss.

It was about love.

I knew in that very moment that I loved this child the same way I loved my others.  His birth was a triumph.  His life was a gift.

logan picture 7j

The year after Logan left was tough.  Actually horrible.  I was struggling trying to figure out what to do with my experience.  I wanted so badly for something good to come of the whole thing but I was flailing.  Looking back on it now I realize that I was dealing with a nasty case of post partum depression.  I wish I would’ve taken more time to figure things out—the whole “something good can come of this” sentiment could’ve waited.

logan birth 11

I still get little twinges in my heart when I think of Logan.  And, make no mistake.  I think of him every day.  But time really does give way to polished perspective. Because of Logan I am better able to find my way through tough stuff—and we’ve had some tough stuff.

I also continue to concentrate on being grateful.  A wise man once told me,  “If you keep your eye on gratitude it’s hard to stay depressed.

Although I take issue with the notion that clinical depression is easily combatted with attitude, I understand the sentiment behind his statement.  So, I walk with gratitude.  Actually…sometimes I stomp.   I’ve learned I can be grateful and angry at the same time.

logan birth 3j

I still go to mass every Sunday even though Drew explained I was pretty much excommunicated.  At least, that’s what he told me one day after his high school theology class, “You know, Mom, no one has to actually tell you you’re excommunicated.  You just are if you commit a mortal sin and don’t seek forgiveness.

Hmmm.  What do you think about that?”  I asked as we casually drove home from school.

I think Jesus would be okay with you saving Logan’s life.   Religion and it’s rules are man made you know.

He went to St. Johns Jesuit and was taught to think.

I love the Jesuits.

logan birth 11

So, it’s been six years.  Six years of unexpected blessings and hardships.  Six years of happiness and challenges.  And, six years of gratitude and perspective.  To say that Logan was a gift sounds kind of cliche—but he was.  He was not only a gift we gave to another family, but also a gift we received that has guided us.

We are stronger because of him.  We are wiser because of him.  We love more deeply because of him.

He is my half full cup.

Happy Birthday, Little Man.

logan birth



Gratitude for Nicholas

AUTHOR: | POSTED: 09/21/15 11:17 AM

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 that part of his lung.  At nine months we thought it would be inflated.When it wasn’t we knew we needed to take another look.  Could there be another reason for this collapse?  Something we were missing?



I think mothers are especially talented at letting our imaginations run wild.  And, because we are mothers, running wild means our minds sometimes sprint to the darkest of  places.  I honestly think the phenomenon of maternal worrying begins at the earliest moment of motherhood.  You know…that second when the baby comes out and we all hold our breath waiting to hear the cry?  I can’t tell you how many women I’ve talked to who lament about that moment saying it was the longest few seconds of their lives.  Think back to that moment.  Was your first question, “Is he alright?–Is everything okay?”?

I bet it was.

So, that’s what my brain was doing Thursday night.  I was hanging out in scary places.



When Friday finally rolled around I was relieved to get the whole thing behind us.  Answers were coming.  We prayed for the best.

The procedure itself took a little longer than we anticipated.  Not only was Nicholas having a bronchoscopy but he was also having his ear tubes removed and replaced with larger in diameter T-tubes. Hearing problems come with Primary Ciliary Dyskinesia due to the fact that the ear canals rely on cilia to move fluid away from the ear drum.  Defective cilia means fluid and fluid will always interfere with the ear drum.

As a result, there were two different surgeons that needed to do their thing in the O.R. and that added up to a two hour procedure.  As Sean and I sat in the surgical waiting room I noticed all of the other parents.  Rainbow is a pediatric hospital.  Knowing all the operating rooms were filled with children is gut wrenching.  There wasn’t a person sitting in that room  that day who didn’t wish to be somewhere else.

But there we all sat.  Doing what parents have to do.  The determination and strength in the room was palpable.  If you ever want to survey a bunch of strong women, trapse through a pediatric hospital and talk to the mothers.  They are women who have advocate for their children a whole different level.

Even more remarkable than the strength of these parents is the fact that they are grateful.  Thankful that their child was being taken care of by people who cared.  Trust me when I say there is no greater gratitude than that of which we have for Nicholas’ doctors and nurses.  I am keenly aware of the fact that he wouldn’t be here today without their dedication and compassion.



After the surgery was over, each doctor spoke with us.  Nicholas’ new tubes went nicely into place.  They were able to suction a lot of fluid from his ears during the procedure bettering the chances that he could escape the hearing loss that so often plagues children with PCD.




Then came the great news.  Nicholas’ upper right lobe was inflated.  Hallelujah.  After talking with his pulmonologist we still aren’t 100% sure it was truly “down” during that August x-ray.  You see, there is a gland called the thymus that sits just above the upper lobe of the right lung.  Sometimes it can cloud an x-ray causing the upper right lobe to appear collapsed–even though it’s not.  It could have been thymus we were seeing on that film.  Or maybe Nicholas needed an extra month of growth in order to pop that lung up.  Regardless, it’s up.



So, here I sit on a glorious Monday morning.  Instead of worrying about what they could’ve found during last week’s surgery I am planning to take him to the park with his sisters.  Instead of worrying about an upcoming surgery I can start to plan a first birthday party.  And instead of sending a frantic text message to his doctor about ill health and clogged ear tubes, I can take a deep breath and enjoy my little man.



***The wonderful Tara Dzienny took these photos of Nicholas.  To learn more about her beautiful photography please visit her page here!