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Getting “Picked Up” at Physical Therapy and More Monday Morning Weirdness…

AUTHOR: | POSTED: 02/1/16 1:43 PM
CATEGORIES: Blog

Back in the early days of this blog I used to start the week off by rehashing some of the random happenings of my life.  And by random happenings I mean weird sh*t.

Today, I am resurrecting that tradition because let me tell you…the weird sh*t is flying around here.

#1:  I Got Propositioned…at Physical Therapy

First off, limping into PT three times a week is depressing.  My progress is slow (and slow maybe overstating it.  Stalled might be more like it.) PT is humiliating–because trying to bend a joint that won’t bend is frustrating–and not to mention painful.  I wince, whimper and cringe my way through it all the while trying not to make eye contact with any of the other people in the place…because…you know…who wants to bond over PT?  Anyways, last Friday as I was attempting to straighten my right leg when the old man on the table next to me muttered something.  I wasn’t sure if he was talking to me, and in hopes that he wasn’t I ignored him.  That is until he muttered the same sentence louder and kind of cocked his head at me.

Not knowing what he was saying, again…I ignored him…which he didn’t like.  Next thing I know I saw him vigorously pulling the arm of his home healthcare aide and repeating what he had been muttering for the past few minutes, but this time he was also pointing at me.  The aide, who was clearly annoyed…and very loud…made a bit of scene.

Aide –  Whatch you want, man? Slow down!  Say it again.  What?!?  You sure?!?!

The man gave her the thumbs up and that’s when the the aide turned to me and said…loudly, “He wants to know if you got a boyfriend.

Smiling, I responded,  “I do.  Married for almost 23 years with six kids.”

To which the aide turned to the old man and said, “Dude.  She got her own old man and six….SIX (she was holding up 6 fingers)….kids.  You don’t want no piece of that!

Me :  “No, sir.  No you do not.”

He left me alone after that.

#2   This license plate…

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I gave birth to Logan on September 24, 2009.

Curious if this ever happens to any of you….

Someone in my city drives a car with this license plate and whenever I see it…which isn’t that often…I find it unsettling.  I guess it’s because I tend to see it at significant times in my life.  I saw it on the way home from the hospital after Logan was born.  I saw it a week later a few hours after I learned our surrogate had miscarried our baby…and I saw it last week.  I tend to see it a couple of times a year and each time I was able to think of a reason I was being reminded of that date.

Except last week I couldn’t come up with a reason and that bugged me because… you know…me seeing that license plate has to mean something.  Right?!?!

If you’ve been a long time reader here you know the day Logan was born changed me.  It changed me in ways I could’ve never, ever imagined.  It’s still changing me.

And someone has that date on their license plate.  (And they got a new car.  It used to be on a white car.  Now the car is red.  And I know that about someone I don’t know and that’s weird.)

Do any of you ever notice a license plate or car and then see it at random times?  Please tell me it’s not just me.

#3  My Newly Decorated Kitchen is Haunted Or We Have A Sink Hole Under Our House!

Sean had our kitchen cabinets painted as a Christmas gift to me.  It’s something I’ve wanted to do ever since we added on to the back of our house changing our kitchen into an interior room.  No outside light coming in equals dark.  Add dark brown walls and it was dreary.  New cabinets were out of the question because of our six kids and tuition…so…painting them was the perfect compromise.

I can’t tell you how many times I researched painting them myself but when push came to shove, I was afraid I’d mess them up.  I guess at 46 I’ve learned when a job should be trusted to the professionals.

It didn't occur to me to take before pictures until after the painter had removed the doors.

It didn’t occur to me to take before pictures until after the painter had removed the doors.

But you get the idea.

But you get the idea.

Cue entry of our favorite local contractor.  He said it would take a week.

Jacob's Ladder is our contractor.  We highly recommend them!

Jacob’s Ladder is our contractor. We highly recommend them!

It took a week.

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And I love them.

White and bright...so much better!

White and bright…so much better!

But as most decorating projects do…one thing led to another and I found myself changing out some counter top decor.  Which is where the weird sh*t comes in.

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I found these 2 gallon glass jars at Walmart. They were $11.50 a piece and I instantly knew I needed them. They can hold a ton of flour and sugar and they look good on the counters.

So…here’s the weird part.  Several times a day I find them askew.  I always shove them into the backsplash and without fail..the next time I check…they have slid a few inches away from where I shoved them.

What.the.hell?!?!?

I don’t know what is causing this.  Could be the cat; Could be the giant jar of kisses.  Or it could be the sink hole that every once in awhile I imagine is forming under my house (Because…have you seen those things?  They are scary as sh*t!  Tornados and snakes used to be the two main themes of my nightmares but recently sinkholes are making more frequent appearances.)

Anyways, I’m investigating.  I’ll let you know when I figure it out.  Hopefully my “aha moment” doesn’t come from the bottom of a sinkhole.

*****

Happy Monday!

The Bittersweet Gift of Nostalgia

AUTHOR: | POSTED: 01/13/16 9:22 AM
CATEGORIES: Blog

There are certain times of the year that get me feeling nostalgic.

January is one of them.  I don’t know if it’s the lull after the chaos of the holidays or the weather that forces us midwesterners into the confines of a roof with walls.  Actually, now that I think of it it’s probably a combination of both heightened by the exit of grown children who were home and have now returned to their various lives.

I love having our two oldest son’s around.  Even though my grocery bill doubles along with the laundry and clutter, there’s something comforting about having all of our children under one roof.  I guess I worry less when I can account for their whereabouts based on the presence of shoes the size of boats in our mudroom.

I like our full house.  It feels safe.

Drew and Ryan both went back to their respective universities this past Sunday.  Even though I remain excited for them, as I towed both of them through the grocery store in preparation for their departure I felt a bit like I was getting sucker-punched each time they threw something in the cart.  Drew’s list was a little more cumbersome.  He lives in an apartment and needed household supplies and food.  As I schooled him on the best pasta sauces that come from a jar, a teeny tiny part of my brain was confused.

How the hell did we get here.   Aren’t you still four?

October, 1999

October, 1999

Sean hit a home run with his Christmas gift this year.  He gathered all of our home videos and had them converted to DVD.  When we opened them Christmas morning I could hardly wait to pop the popcorn and settle down for a viewing.  Neither could the boys.

It was interesting watching our sons watch the younger versions of themselves.  They weren’t very interested in watching the hours and hours of swim meets, soccer and basketball games we’d recorded.  There was a lot of fast-forwarding through that stuff.  Instead they loved watching themselves as babies.  Hearing their voices and laughing at their first steps or toddler stumbles.  They loved seeing their friends and remembering what each of them was like when they were younger.  Honestly, the best footage was whenever we caught one of them dancing.  I bet if you’d asked them they would’ve never guessed that music was such a large part of their childhood. Watching them watch themselves was awesome.

But for me watching that footage was a mixed bag.  I loved the memories and the laughter but watching them when they were babies

November, 1995

November, 1995

…and four year olds

Ryan was a soccer phenom in preschool.

Ryan was a soccer phenom in preschool.

…and eight year olds…

October, 2006

October, 2006

Oh my goodness.  I’d do anything just to be able to reach into that television screen and snuggle those children.  Just for a minute.   It really did hurt a little bit.   And I’m not one to wallow and idealize.  I’m more of an “onward” type of a girl.

This morning I was telling a friend watching those DVDs.  “It was great, but it wasn’t.  I loved it but at the end I was a teensy bit sad.

Oh honey, that’s what nostalgia is.  It’s bittersweet.  It’s happy memories mixed with the reality that they are…indeed…memories.  Just be happy you preserved them.  There’s gold in that.

My friend is a wise one.

Nostalgia is good because happy memories are golden.

*****

For those of you who heard me talk about this on 101.5 The River Wednesday morning these are the tips I imparted…

  1.  When recording your kids skip the games.  Just watch their sporting events, recitals and performances.  Trust me when I say your kids won’t really care to see more than a glimpse of these events in their lives.
  2. Make a point to sit down with each of your kids at various ages and interview them.  I haphazardly did this with the boys and those recorded memories were priceless.  The answers to my questions; their speech patterns and the silly faces they made while they were thinking were hilarious.  They loved seeing that footage.
  3. For those of you in northwest Ohio, we went to Transfer Me To DVD located on Heatherdowns in Toledo.  There are plenty of online companies where you can ship your tapes for conversion but Sean chose to have them done locally.  I’m glad he did.  I couldn’t imagine shipping those video tapes anywhere.  I liked that we could deliver them ourselves and carry them home ourselves.  No risk of anything getting lost in transit.

******

Now if you’ll excuse me I’m off to buy my Powerball ticket.

Slow, Injured and Grateful: An Unexpected Start to 2016

AUTHOR: | POSTED: 01/11/16 11:08 AM
CATEGORIES: Blog

I’m overwhelmed.

It seems that I always am in January.  I think it’s because of all the hype jamming my social media feeds and commercials about starting 2016 the right way.  What’s the right way?  Well according to the implied, subliminal and mostly obnoxious messaging I’m currently internalizing I should be focusing on myself.

According to Weight Watchers I can do this by eating better, exercising more, and cooking colorful vegetables and lean meat in pristine cookware.  Supposedly, if I do this I will feel better, sleep soundly, breathe easier and smile more.  Real Simple and other similar sites are bombarding me with ways to declutter my closets, car, cupboards and medicine cabinet.  Organized places in my home will apparently bring me a sense of peace, calm and serenity.  Who doesn’t want any of that?

And I do.  I want all of it.  I want to be fit.  I want to be happy.  I want to be organized while whipping up healthy meals laden with the organic, free range, farm raised, non-gmo, low sodium ingredients that will make my family salivate.

Problem is…that shit is hard and I am injured.

You see, Christmas got a little out of hand this year.  I started the month of December with the best of intentions.  I was going to slam dunk the 2015 holiday season in an effort to make up for the misery that was the Christmas of 2014.  (You know…2014.  The year of the upper respiratory infection that ravaged my kids while Sean and I bounced from PICU to PICU trying to figure out why our newborn son couldn’t breathe.)

It all started off according to plan.  We had a flawless trip to Minneapolis for Thanksgiving followed by a humdinger start to December that included cutting down the perfect tree and MK’s first Nutcracker performance.

Thanksgiving, 2015

Thanksgiving, 2015

Our tree.

Our tree.

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Tea Princess

Baby Angel

Baby Angel

I even ran my first 5k—a goal I had been working towards since late September in an attempt to do what so many of us are striving to do right now.  Get healthy.  Unfortunately, that fateful evening under the twinkly lights of Blissfield, Michigan, everything took a turn for the ugly.  Or at least my right knee did.

Now, to preface this story I must give you a little background.  I have a crap right knee.  I was born with it—at least that’s what my orthopedic surgeon told me right before my first knee surgery back in 1984.  I was fourteen.  My strongest memory of that operation was right before he put me under, “Knees weren’t meant for running, skiing or dancing (all things I loved).  They were meant for walking. Hear me when I say, Little Girl.  You’ll never do any of those things again.  You walk. That’s it.

He was an ass.  Unfortunately, he was a smart ass.

I’ve had two additional surgeries on my right knee since then.  All of them to try and correct the same structural problem.  As a result, I baby that knee.  I don’t run.  I work out on the elliptical;  I don’t dance—well not on my toes anymore; and I don’t ski.  I take stairs, delicately; I’m careful not to expose it to a lot of impact, and I never kneel on it—on purpose that is.

I honestly don’t know why I thought I could run a 5k.  I guess seeing so many people do it over the years of watching my boys and Sean convinced me that one race here or there wouldn’t make much of a difference.

I was wrong.

I ran that race on a Friday night.  And I finished.  My time was nothing to brag about, but I was so happy.  And the next day I thought my body had forgiven me.  It took 48 hours for me knee to swell up to the size of a softball.  It didn’t really hurt.  Just swollen.  I iced it, took some ibuprofen and tried to pretend it would go away.  That is, until I woke the next day to a basketball.

Shit.

Next thing I knew I was sitting back in my orthopedic surgeon’s office. He told me to stay off of it.  Drained it (which is horrible) and booked me for surgery.  I pushed the operation off until New Year’s Eve in an attempt to not totally trash what was left of Christmas, and promptly ignored my doctor’s orders.  (Seriously…he told me to put my feet up and make Sean do everything.  Dude…I’ve got six kids and Santa is coming.  Can you give me some of that crack you’re smoking?  I think I’m going to need it.)

It’s amazing what us mothers can do—even in pain.

Christmas happened.  We went to the zoo lights, a family winter ball, and Children’s Wonderland.  I hosted a cookie exchange party for adults and a cookie decorating party for our neighbor kids.  We visited Santa on Christmas Eve, and I stood through Christmas Eve mass.  The presents were wrapped, cookies were baked, Christmas dinner was yummy and everyone was happy…except my knee…and possibly my liver.  (Apothic Red and ibuprofen had become my pain relieving cocktail of choice.)

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Nicholas loved Christmas.

Nicholas loved Christmas.

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By the time surgery rolled around I was debilitated…but I hobbled into that O.R. in triumph.  “Boo-yah, Doc.  Now fix this.  I don’t have time for this shit.”

Needless to say, 2016 is off to a slow, foggy and kind of bitchy start.  Slow because…well…duh.  Foggy because of narcotics.  And bitchy because all I can do right now is watch television, peruse my social media feeds and feel bad about not being able to workout, cook, and organize.

I’m currently trying to adjust my attitude.  Of course, I am duly aware that things could be so much worse.  Like last year worse.  In fact, whenever I start getting frustrated I think about January 2015 and ringing in the  New Year in a children’s hospital two hours from home with a critically ill baby that didn’t have a diagnosis.

I’ll take slow, foggy and bitchy over scared for the life of my child any day.

This is where you can find me contemplating my disorganization and the fitness that I'm losing.

This is where you can find me contemplating my disorganization, the fitness that I’m losing, and my gratitude for a healthy baby boy.

Thank God for the gift of perspective.

You’re Invited…Nicholas’ First Birthday Party

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

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
CATEGORIES: Blog

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.

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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.

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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.

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******

 

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!