The Hardest Part…

There are so many aspects of my book Preemie that were incredibly difficult to write; the first time I saw Andie, not wanting to return to the NICU to see her, my breakdown before her last surgery.  But by far the most difficult piece then (and now) is when Andie contracted the dreaded Respiratory Syncytial Virus (RSV).

She was two years old and we’d finally let down our guard.  I can still hear that cocky ER doctor’s voice casually saying, “It will be up to her whether she chooses to fight this.”

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Andie on her 2nd birthday.

Yet as difficult as it is to talk about that time in our lives, I know others can learn so much from our story.

So I wrote about it, again.

This time it was for a guest post on the wonderful blog, PreemieBabies101.

“This is still the hardest part of the story to tell.  The story of my girl born way-too-soon, weighing way-too-little.  Because this is the point in the story where we let our guard down.  Where we actually let ourselves believe that our girl’s prematurity was behind her; that we were in the clear.  It’s the hardest part of the story to tell because we finally met that other shoe that I’d kept waiting to drop ever since we left the NICU.  And it’s even harder to tell because I don’t want to scare you.  I want you to understand that this is our story; our path.  That it was what was supposed to happen to us, not you…”

To continue reading please click the following link:

http://www.preemiebabies101.com/2012/10/my-story-my-voice/

Thanks again for all your support.

Photo Friday

If 12 years ago I’d known that someday I’d be signing books with my girl…

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Does it get any better than that?

 

Preemie Update

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Oh goodness, there is so much to tell you about, and I still haven’t finished telling you about my incredible trip to Chicago!  The next few days are going to be jam-packed.  I’m nervous and excited.  Have a look below at what’s going on:

I just got off the phone with Dr. Dan Rausch from SiriusXM’s Doctor Radio.  This was our second time talking and it was a wonderful interview that flew by much too quickly! If you missed it, it will be rebroadcasted on SiriusXM Ch 81 on Thursday, 10/11 at 3:30, Saturday, 11/13 at 11:30 and Monday 11/15 at 3:30.  Sirius also has a new feature called Sirius On Demand so if you’re a subscriber you can listen whenever you like!

I had the pleasure of meeting Nick Hall of the wonderful organization, Graham’s Foundation while I was in Chicago.  Be sure to check out the Q&A about Preemie that they have featured on their site – A Q&A with Kasey Mathews, Author of Preemie: Lessons in Love, Life, and Motherhood  

I’m also so excited that our own Andie Lou is the featured preemie in the October issue of Preemie Family.  This is a pdf format that you’ll probably need to download to read.  Preemie parents, be sure to subscribe!

And it looks like I’ll be featured on this website tomorrow Authors Promoting Authors.

I really should be packing right now because we leave today for my parent’s house in Syracuse, New York!  I have 3 (!!)TV (!!) interviews and a book signing scheduled for tomorrow!

I didn’t think I was that nervous until this morning when I pushed the garage door button to close the garage door WHILE I was driving out (thank goodness for those electronic eyes) and then proceeded to drive in a totally different direction then my kid’s school.  “Uh, where you going Mom?” I heard from the back.  It was then that I realized that, Yes, I Am Nervous!  Let’s hope saying it out loud has the same effect as saying I’m Afraid out loud!

My first interview is with Jim Reith from WCNY.  It will be taped at my parent’s home and aired Thursday, 10/11 at 6:30 pm.  Hopefully you can catch the interview right before you head over to my book signing!

In the late afternoon, I’ll be joining Matt Mulcahy and Megan Coleman on NBC 3at 5:30 and Michael Benny on CBS 5 at 6:10.

The book reading/signing is at the Barnes and Noble in DeWitt, New York at 7:00 pm so please come by if you’re in the area!

Once again, thanks so much for all of your support.  I stood in the middle of a Barnes and Noble the other day gawking at the enormity of books lining the shelves. The fact that anyone would buy my book, let alone take the time to read it (and even write to me as so many of you have done!) is simply humbling.  Thank you.

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Me and Preemie at a busy Barnes and Noble with lots of books from which to choose!

Whirlwind Syracuse Media Tour

Sitting at the cafe at the Fayetteville Wegman’s reflecting on what a whirlwind yesterday turned out to be!

A van pulled into my parent’s driveway at 11:30 yesterday…

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and Jim Reith and I sat in my parent’s living room for a wonderful interview.

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My Dad walked in just as we were about to start and plopped down right across from me (no pressure)!

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My Dad is just a little proud!

The interview aired on The Jim Reith Show last night as The Main Event! Click below to watch.

 JIM REITH INTERVIEW

A few hours later, Lee, the kids and I piled in the car to head to the local TV studios.  Live TV – Gulp!

I felt really nervous until we drove past my grandparent’s house that is right near the studios.   Driving past their house, I knew they’d be so proud if they were still here to see this, especially my grandfather who read six newspapers a day and watched every news program available!

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It was so fun for the kids (Lee and me, too!) to get a behind the scenes peek at live tv!

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And then it was my turn to sit with anchors Matt Mulcahy and Megan Coleman.  They are fabulous and made me feel so comfortable! You can watch part of the interview by clicking on the link below. Sadly, the footage of Lee, Tuck and Andie on air didn’t make the taped video piece, but take my word for it, they looked pretty darn cute sitting in the studio!

Interview on NBC News Talk Tonight 

After that interview, it was off to the CBS studios to meet Michael Benny and sit with him for an interview. No taped video yet, but hopefully soon.  He was a delight and brought Andie on camera at the end of the interview!

As soon as I left Michael’s studio, we raced over to Barnes and Noble for the book signing.

I couldn’t believe how many people were there!

And the stories…  The stories of other preemie parents, grandparents, and so many others who hadn’t even known a preemie baby story but were touched by this one.  My High School guidance counselor was there and slipped a silver “pocket angel” into my hand just before I began my talk.  He’s always been my angel.  A friend and fellow preemie mom I met through the book and have gotten to know on Facebook drove an hour and a half to meet me…

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as did one of my oldest and dearest friends…

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Out for dinner after!

It was all so joyous and I am so grateful to everyone who was there and all of you who were there in spirit, too!

Before leaving the TV studios, just for fun Lee took this photo of the kids and me…

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Then, we show up at Barnes and Noble and that exact van was there.  “Maybe they’re here for you, Mom,” Tuck said.  “Yeah right,” I said in reply.

But they were.

And it was pretty darn fun to end such a whirlwind of a day with my entire family gathered around to watch the 11:00 news!  (Video of that one to follow, too, if it becomes available!)

Visions

In this excerpt from Preemie, right after Andie’s sudden birth, I tell Lee about the vision I had of her as a healthy, happy 5-year old.

“For two days, Lee continued to go back and forth to the NICU alone. He left Polaroids of Andie on my bedside table. I covered them with a box of tissues. On Wednesday morn- ing, he was about to walk out the door when he turned and looked back at me. His eyes were red from lack of sleep and his hair was sticking up every which way. “You’ve got to see her at some point,” he said and then walked out.

Fifteen minutes passed before I moved the box of tissues and picked up the Polaroids. It was hard to see her beneath all the tubes and wires, but when I held the photos at arm’s length, I saw she was more human-like than I had thought. I ran my finger over her tiny fingers, her closed mouth. Her eyes were like the eyes of a baby robin I’d discovered as a girl in a fallen nest. Everything was there, just miniaturized.

When I looked up from the photos, Lee was standing in the doorway. “I had a vision,” I told him. “I saw two paths. One leads to a funeral in a week. The other to a beautiful five-year-old girl.” He stood still, watching me. “I’m going for the latter,” I said.

Relief flooded his face and my journey as a NICU Mom had begun.”

I held onto that vision and called it upon it repeatedly to keep from losing faith throughout the days, months and years that followed.

And then, five years later Lee showed me the photo he’d taken of Andie out twirling in the backyard.

I sucked in my breath.

It was her, the girl in my vision.

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For Photo Friday, is there a vision of you own you’d like to see? 

Chicago – The Beginning

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I was sitting at the gate B28 in the Manchester, New Hampshire airport wishing I had never agreed to attend the conference.

My mind flitted and flurried with worry after worry – soccer games, school lunches, dogs, cats – when in reality I was afraid to get on the plane that would soon be thousands of feet above the ground.

I’m afraid, I whispered out loud.

It helped.  Still, I didn’t want to board that plane.  I didn’t want to leave my babies behind.

A pre-boarding announcement caused me to jump in my seat.

I’m afraid, I said again.

Then I began my Why did I even write this stupid book chant which thus far has occurred before nearly every video, radio and live-in-person talk I’ve given.

Why, Why, Why?  I wanted to stomp my feet on the airport terminal floor.

I checked my email one last time before moving to take my place in line.

And with permission from the author, I share the following email which came at just the perfect moment, leaving me certain that I was in just the right place, at just the right time, and certainly not alone.  Thank goodness I had tissues in my bag!

Hi, Kasey.  My daughter and I stopped by my office last week and the man I work for told my daughter he had a gift for me, and he asked her to bring it over to me.  When she handed me your book Preemie, my knees went soft.  He then went on to say that he was walking through the book store, recognized your Andie, knowing her through some interaction with you and knew I had to have the book. You see, my healthy 5 year old daughter that handed me that book was a 28 week preemie born at Brigham & Women’s where she spent 89 days in the NICU in 2007.  I read the entire book last night and felt like I just relived my own journey. 

We were fortunate to not have too many severe complications, and in fact, never required any surgeries, but I felt as though you had written my thoughts exactly.  Nurse M was one of our primary nurses, and we occasionally had Nurse Y on our team.   We had follow ups with Dr. V ( I knew from your description of her exactly who she was!) and the Center for Healthy Infant Lung Development with Dr. R for a few years until we received the all clear.   We had our ups and downs, throughout our stay, but are so mindful that it could have been so much worse.  I found fenugreek, Reiki and massive parking bills throughout our days too!   We did break the cardinal rule and became very friendly with the family that was in NICU A with us for 8 of the 12+ weeks.  Somehow, we began talking and we had each other to talk to, watch over the other’s baby when we weren’t there, but even now to this day, just to have someone understand what it’s like to deal with monitors and feeding tubes instead of play dates and outings.  They were visiting Boston from Maine, and although they have since moved away, we get the kids together at least a few times a year.  This morning, after reading your book, I called her and shared it with her. 

I really just wanted to thank you for writing your story.  I always felt that I wanted in some way to write ours down, or in some way help other families through the nightmares of this experience.  I feel very fortunate that we ended up at Brigham.   We’ve always felt an immense debt to the nurses….who during our time there, also helped me find my voice as a new mother.  Each one of our team had over 30 years of experience, and they could tell us down to the day, what was going to happen, and for the most part, they were right on.  I also felt that they somewhat protected us from becoming “research” with the young doctors and learning students.  We were, above all, a family trying to pick up the pieces of our shattered hopes and dreams.   It wasn’t until 2 years later, I would have my grocery store breakdown…I suppose it was after all of the therapy visits, the more frequent doctor visits, etc. that I was finally able to just absorb what had happened, and process all that I had missed.  I had been on bed rest at Brigham for 8 weeks prior to her arrival, despite their wishes to send me home prior to gestation week 24.  I told them from day one, I was not leaving that hospital without my baby.  At 35 years old, my first pregnancy that we were told would never happen, I knew she was my miracle, even before I knew she was a she!  I wasn’t giving up…..and neither did she. 

My preemie turned 5 just a few weeks ago and I, like you, simply could not believe this day had come.   We continue to keep in contact with the nurses, we invite them to her birthday every year just so they know how much we always appreciate her life, thanks to their caring ways.  I’ve attached a picture of her, just because I still can’t look at it and believe how amazing she is….just like your Andie.

Thank you again….it’s so nice to know that we weren’t alone!

Barbara 

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Jillian Grace – 28 weeks 2 lbs 5 oz 14 inches

Photo Friday

The book was nearly finished when the publisher asked for a current family photo.

Gulp.

Self-timer?

Wait.  Two years prior we’d bid on and won a photo session at our school auction.  Would Ramsay be available anytime in the near future?  I hadn’t seen him in weeks.

I bumped into him (literally) at school that afternoon.

He arrived at our house with his Kindergarten-age son Jasper, a box of Legos and loads of photography equipment in tow the following afternoon.

“Tell me your story,” he said.

I read him the preface of Preemie instead.

Everyone has a story. Mine began in November of 2000 when I thought I’d given birth to the smallest baby ever born. She arrived four months prematurely, weighing one pound, eleven ounces and measuring eleven inches long. Imagine a potato with tiny arms and legs. Several days after my daughter’s birth, I mustered up the courage to ask a nurse if she’d ever seen a baby that little. When she replied, “Oh honey, this hospital floor is full of babies this small,” I no longer felt quite so alone.

After my daughter was born, I longed for a compassionate woman who had been in my shoes to sit on the end of my hospital bed and share her story with me. It wouldn’t matter how different or similar our stories were, just to have someone who understood what it was like to have a pregnancy end halfway through, resulting in a baby that didn’t resemble any baby I’d ever seen. I wanted to see her nod in understanding as we discussed the daunting task of raising, loving, and believing in a child born at 25 weeks.

That woman never arrived. Due to hospital privacy rights, we were discouraged from even glancing at other babies or parents in the Neonatal Intensive Care Unit (or NICU). I was lost, incredibly lonely, and terribly wrought with guilt and fear. 

So I’d like to sit on the end of your bed and share my story with you. Your story and mine are sure to be different, but if hearing my story allows you a moment away from yours, if it leaves you with a sense of hope, then this story was worth writing down.

“I get it,” he said.

Out of 189 photos he took, these were our four favorites.

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One of them made it into the book.

Big heartfelt thanks to Ramsay Thomas of Mountain Bliss Photography, (http://www.mountainbliss.net)

Think we made the right choice?

Photo Friday

THEN

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December, 2000

 

NOW

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August, 2012

 

Facing Fear

On Monday, I had a radio interview on LA Radio’s Answers For The Family withAllen Cardoza (click this link to listen – www.answers4thefamilyblog.com).  It was the longest interview I’ve had so far, and I was nervous about an hour-long, live interview.  But it turns out there was no need to worry.  Allen’s insightful questions led to a lively conversation and it felt like we could have talked for a second hour!  (Plus, with commercial breaks on either end, the interview ended up closer to 45 minutes!)

We were about half way through the show when Allen read an instant message sent in by a preemie mom.  Her son had been 3 pounds at birth and spent 3 months in the NICU.  At 12 years old he continued to have respiratory issues, and Mom spoke of her ever-present fear; her fear of losing him.

Did I have any advice?

At first, my mind went to the practical.  I spoke about our visit to the pulminologist’s office that I’d written about in the book.

“I listened to the petite doctor with tight curls tell me that because of her birth history, Andie would never be cured of asthma. I declined her offer to prescribe a variety of daily preventative drugs. Instead, I tried to strengthen Andie’s lungs my own way.  At a physical therapy supply store, I bought a bunch of “lung development games” and brought home straws, feathers, and cotton balls, cheering the kids on as they blew the “bunny tails” across the kitchen table. The kids and I blew up balloons and played kazoos, harmonicas, and whistles.”  (From Preemie Chapter 28)

I spoke about how I refused to let others limit my child’s potential, and I encouraged that mom to search for a similar store in her area and create her own at-home, lung-improvement routine.

And then I remembered something else.  It was a really powerful moment I’d had withKaren McCarthy, the energy healer with whom we’d worked.

“I can’t keep living like this,” I’d said to her.  “I can’t keep living in this constant state of fear.”

I’d explained to Karen how I’d tried pushing my fear way down deep into the recesses of my belly, how I’d tried running from my fear, how I’d tried to pretend that it didn’t exist, but no matter what, my fear was still there.

“What if you just looked your fear right in the eye and said, ‘Yup, I see you. I know you’re there.  I’m afraid.’”

I had nothing to lose.  So I did.

I acknowledged my fear.

“I’m afraid,” I said out loud.  Many times a day.

And everything changed.

I’d brought my fear to light.  I taken away fear’s ability to breed and grow in the dark.

My fear was still there, but it no longer had the same control over me.

I shared that story and once the interview was over, I hung up the phone with a big smile on my face.

I hadn’t been off the phone for more than a few minutes when I remembered my upcoming trip to Chicago for the Preemie Parent Alliance.  Instantly, I felt a familiar dull ache in my belly.

“I’m not even going to talk about the trip,” I’d said to Lee a few nights prior.  “I’m just going to pretend it’s no big deal and just get on the plane and go.”  My stomach had burned as I said it.  It’s burning now.

I’m afraid.

I’m afraid of leaving my children.  I’m afraid of the plane falling out of the sky and my children growing up without their mommy.   I’m afraid the kids won’t get their school lunches on Friday or make it to their soccer games on time or remember to feed the dog and the cat.  I’m afraid I’ll get on the wrong plane, or miss my plane or take the wrong shuttle to the hotel (prior experience proved that’s a legitimate one!)

I’m afraid.

I’m afraid.

I’m afraid.

Ah…I can breathe.

Thank you to the woman who wrote in asking for the advice.  It was just what I needed.

Now I can start packing for my trip.

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What about you?  What are you afraid of? Are you willing to bring your fear to the light? 

(Hey Massachusetts friends, I’ll be signing books at the Fiske’s booth at Celebrate Holliston on Saturday, September 22nd! Would love to see you there!)

In the Blink of an Eye…

I blinked…

and summer was over.

The kids are now back in school.

It isn’t until they’re actually back in school that I realize I haven’t formed a complete thought in about 2 ½ months!  I kind of wondered if I’d ever find my writing voice again.  It bopped in for a few fleeting moments this summer, but quickly ran elsewhere when cries of I’m bored, I’m hot, I’m hungry, I want this, I need that, swirled in the air.

But on my morning walk with Meg today, I realized we were not alone.  My Writing Voice had gleefully jumped aboard my shoulder half way down our favorite path.

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We love our morning walks!

Ah.

Back to school.

Our children’s Waldorf School has a wonderful tradition of beginning and ending every year with a Rose Ceremony.  The incoming first graders are paired with eighth graders, who are beginning their last year in the school.  In the fall, the name of an eighth grade student is announced from the left side of the stage, followed by the announcement of a first grade student’s name from stage right.  Both children, the big one and the little one, cross the stage and meet in the middle.  The big one, the eighth grader, then hands the new first grade student a welcoming rose.  In the spring, the entire process is repeated, but at that point the first grader hands a rose to his or her graduating eighth grader.

It’s impossible not to cry.

I’m crying just writing about it.

Somehow the teachers always manage to get the student pairings just right.  When Tucker’s little guy crossed the stage, I inhaled a quick breath and squeezed Lee’s hand.  Could I be the only one to notice that this first grader was a miniature Tucker?  The way they both shyly forced themselves across the stage in their khaki pants, button down shirt and tie?  The way their hair sloped down on their foreheads over their big eyes?  The way they both leaned side by side, flat against the back wall when their turn was over?

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He was thrilled about the picture taking!

“Your first grader looks just like you,” I dared to say to Tuck after the ceremony, imagining he’d shoo me away in embarrassment.

Instead, he looked at me with those big round eyes and a rare toothy smile, “I know,” he said.

Andie began middle school, entering the sixth grade.  In true Andie fashion, she’s already lamenting the end of the year.  “I just can’t believe Tucker will be graduating,” she keeps saying.  She spent much of the summer weepy at bedtime, grieving the loss of “the little boy Tucker used to be” and now at bedtime she’s begun turning the focus inward.  “I’m so sad to be growing up,” she says.  I keep reminding her, and myself, that her little self still lives right within her.  Sniff.

So, what’s new with the book?  Well, I’m still doing quite a few radio interviews (ClickHERE to check out the latest) and I just booked a flight to Chicago for later in September where I’ll attend the annual Preemie Parent Alliance Summit.  Upon my return, I’ll be traveling down to our old town of Holliston, Mass for a book signing at the annual Celebrate Holliston event (I’ll be at Fiske’s booth if you’re in the area!).

Earlier this week, Preemie was featured on the website of one of my favorite authors, Katrina Kenison!  I was so honored! To read her incredible post, please click this link –www.katrinakenison.com and don’t forget to comment and/or share it with your friends!

And now, as we all try to find our back-to-school rhythm, Meg and I will continue to take lots of walks, reflect on this summer and all the others, and invite my Writing Voice to come along!

(Right about this time last year I was in the same reflective place which I wrote about HERE.)

So what’s new with you?  Are you sending kids back to school?  What emotions does fall stir up for you? I’d love to hear!