Conquering Fears

Have you ever had one of those days where you are SO extremely excited for something but are equally terrified, nauseous and anxious about it all at the same time? I’m talking like a hard-core physical reaction from nerves here…not just some giddy nervous excitement.  It’s a crazy feeling but one that I have experienced quite a bit lately. Need an example? Remember when we took books to Children’s Hospital? I was so excited…SO, SO excited to be able to give back to the place that gave so much to our family and to see some familiar faces, but while driving there I had to fight my urge to do a U-turn in the middle of the interstate and drive back home. My hands were sweaty, I was breathing heavy, I may have even cried a little bit…maybe. The thought of walking into that building without my little girl conjured up a whole variety of emotions in me.

That day was hard, but I had one a few weeks back that may have surpassed it.

On Friday, September 23rd I made my first official trip to the Avera Children’s Specialty Clinic without little Charlotte. I hadn’t seen Dr. Sami (cardiologist) or his nurse Holly since the horrible day that we lost our little girl. I take that back…one day I saw Dr. Sami from a distance as he walked through the building where I work, and immediately my heart started pounding and I saw little spots in my vision. HA! If the sight of him from 50 feet away sent me into a panic, I could only imagine what sitting down with him face-to-face was going to be like! Bottom line, I was nervous as hell. But on the other hand I wanted this day so badly. The people in that clinic took care of me before they ever took care of Charlotte and in a crazy way, I missed them.

So why all of a sudden did I get up the courage to go back into a building that I knew was going to be so incredibly difficult???

A “Books for Charley” donation! Pretty good reason, right!?

That morning I loaded up a cart of books in my office (I work right next door) and rolled my way over to the clinic. Once again, my heart rate started to pick up (good thing I was going to a cardiology clinic!), my stomach started to churn and I fought the urge to turn and run. Ok…so maybe, just MAYBE there were some more tears. I walked through the front door and with a lump in my throat announced that I was there to drop off some books. I did it. I was IN the building!

From there it’s pretty much a blur. I spent an hour in the clinic that day, mostly talking to Dr. Sami and Holly. We talked about everything…life, Charlotte, the future. We talked about the amazing response we got for “Books for Charley” and about how some of Dr. Sami’s other patients actually contributed as well. We hugged, we cried, we laughed. It was a good day. A good, scary, exhausting day.

But now for the exciting news! We were able to donate an additional 195 books to the clinic! That brings the 2011 “Books for Charley” grand total to ONE THOUSAND TWO HUNDRED AND THIRTY FOUR BOOKS! Yes, 1234 books! And that’s not including about 300 books that were a little more “worn” and will be going to a local women’s and children’s shelter. You guys are SOOOOOOOOOO awesome and I can’t even begin to thank you enough!

I stopped by the clinic again this morning to drop off some more books. This time around I did it with my chin up. I wasn’t nervous, I wasn’t anxious, there were no tears. And when I got to the clinic, what did I see??

A little library in the waiting room! How awesome is that?!  (Sorry for the blurry cell phone pics)

What’s even more awesome? Check out the bottom shelf!

CHARLEY!

The clinic manager had the staff pick out a special little shelf that they could put our little girl's name on.  My heart totally melted when I saw this.  It couldn't be more perfect.  If any of you from the clinic read this...THANK YOU SO SO SO MUCH!  I love that our little girl will continue to be a part of the clinic and hope that our little Charley library can bring smiles to the faces of lots and lots of kiddos!

As for "Books for Charley"...You haven't seen the last of us!  My plan as of now is to use this event as a way to continue celebrating the life of the Amazing Charlotte Delene Ritchie.  Look for the event to return in full force next May.  I've got all sorts of ideas bouncing around my head for round two!  If you have books that you wanted to donate before then, just let me know and we'll work something out.  I will never ever turn away donations!

What a lucky girl Charlotte was to have such amazing love surrounding her!

Tiny Pumpkins

Despite the unseasonably warm temperatures that we've been enjoying in South Dakota, I can see the tell-tale signs of Fall all around me. The trees are covered with vivid red and orange leaves, Halloween candy and costumes have taken over the stores, there is football on TV every Saturday and Sunday. Usually I love Fall, but this year the change of seasons finds me feeling empty and apathetic...


Last year we were enjoying Fall with Charlotte-- picking out her Halloween costume, cheering on the Huskers and Packers, taking trips to the local apple orchard so we could make homemade applesauce. This year I'm not quite sure what I'm supposed to do or how I'm supposed to feel. It's just not right.


Last October I read this blog post written by a fellow heart/angel mom, Kristine Brite-McCormick that depicted her similar struggle with this time of year. The post, appropriately titled "Smashing Pumpkins," described the dreams that she had of trips to the pumpkin patch with her daughter Cora...dreams that never had the chance to come to fruition as Cora was taken from her much to soon as a result of an undiagnosed heart defect. As I read Kristine's words my eyes welled up with tears.  A year ago couldn't even begin to imagine what she was feeling, but my heart ached for her none-the-less.


I read Kristine's post right away in the morning, and needless to say I wasn't very productive the rest of the day. I just couldn't stop thinking about Cora and her mom.  My wheels were turning and as soon as my work day was over was on a mission.  I picked up Charlotte from daycare and immediately set out to find the closest place that sold pumpkins.  Cora needed a pumpkin...


I'm not sure what I thought I was going to accomplish with this pumpkin. I knew that I wasn't going to fix anything for Kristine or take the sadness away from her, but something deep inside me wanted her little Cora to have a special pumpkin all her own.  I sent the picture below to Kristine hoping to at least elicit a smile...hoping that she would feel the love that we were sending her direction.

This weekend I found myself thinking of Kristine and Cora a lot.  I re-read Kristine's post from last year and was again overcome with emotion.  Last year I could only sympathize...this year, unfortunately, I can relate.  Precious Cora never got her own pumpkin, and the only one Charlotte had was the one we made for Cora.  


Two perfect little girls, one perfect little pumpkin...


To read more about Cora please visit Cora's Story.  Her life was cut short by an undiagnosed congenital heart defect, but through her mom's advocacy, Cora is saving lives!  THANK YOU, Kristine for all that you do, and for showing me everyday that though our lives will never be the same, we WILL survive this!

A Yankee Through and Through

This is kind of how I feel today.

Maybe next year Yankee fans.

Mr. Owen

Meet my nephew Owen.

Owen is a typical 4 year old boy.

He has a super-duper sweet side...

but also has one of the best “stink-faces” that I’ve ever seen.

He is ALL boy.  

Owen sporting a black eye right before family pictures.  

Yup, ALL boy.

His favorite singer?  Lady Gaga.

His favorite aunt?  Aunt Kristen.

(Hehe! Sorry other aunts!  I just tell it like I hear it...)

How did I gain the title "Favorite Aunt?"  I would like to say that it's because of how insanely cool or hilariously funny I am.  And while both of those things are true, I know deep down that there is one thing that pushed me to the top of the list.  

I'm Charlotte's mom!

It's true, I became a heck of a lot cooler in this little boys eyes when Miss Charlotte came into the picture.  Owen LOVED (and still loves!) “Baby Charlotte.”

Yes, I realize that all of my nephews and my niece loved little Charlotte, but something about “rough-and-tumble” Owen loving on our little girl could always make me smile.  He was smitten with her from day one and was always looking out for her.

Owen and Charlotte 7/2010 

 He had waited 3 whole months to hold Baby Charlotte and you can see the excitement in his face.

I will always remember when he shared his helicopter with her at Christmas.  He set it on her lap, looked at me with a very serious face and said, “Aunt Kristen, this toy is for big kids, not babies… (pause)...but Baby Charlotte can play with it anyway.”  

Not only did he share toys with Charlotte, he also shared his "meek" (a.k.a. blanket).  Charlotte and Owen had matching blankets…his red and hers green.  If Charlotte would start to cry you could always count on Owen to show up with the green blanket (or his red one if the other was no where to be found.)  He would calmly tuck it right up by her face--Owen knows from years of experience that a special blanket can make everything better. 

Owen may be the little brother in his house, but he definitely stepped into the big brother "protector" role when it came to our little girl.  He was well aware of the things that would make her cry and tried to make sure that didn't happen.  At the Congenital Heart Disease Awareness Banquet last year he stuck by her side because he knew that she got scared when there were lots of new people around.  I love this picture of him hovering beside her like her own personal bodyguard!

One of my favorite things was the look on Owen’s face when he would see Charlotte.  Tear.  He would get this bashful little grin on his face, but you could tell that on the inside he was SO excited. To this day there is still a sparkle in his eyes when I mention her name...she totally won his heart.

Two weekends ago I was back in Omaha and stopped by my sister’s house. As I was leaving Owen followed me outside where we ended up playing a little basketball (Translation: Owen shot the ball and I prevented it from rolling down the driveway). In between shots something in the grass caught his eye.

Owen: Aunt Kristen, it’s a butterfly! 

Me: Where? 

Owen: Right there in the grass! It’s a monarch.

Me: (smiling) You’re right smarty pants, it IS a monarch.

Owen: It’s tiny. I think it’s a baby!

Me: (catching my breath, smiling, fighting back tears) 

I think you’re right O-Boe. It’s a little baby butterfly…

I don't want to be the overly sentimental grieving mother who takes every gust of wind, ladybug, butterfly, etc. and turns it into a symbolic message from my angel daughter...but I have NEVER seen a monarch as teeny tiny as the one we saw that day.  How fitting that it little Owen that spotted it fluttering around in the yard as we were playing.

I pray that he keeps finding little baby butterflies dancing around him.

I pray that he forever carries the memory of little Charlotte with him.

I hope and pray that he knows that every time I see him, I think of her and smile.  

I love you O-Boe...and Baby Charlotte does too!

Section "C" Under the Tree...

Yesterday Matt got a phone call at work letting him know that Charlotte's headstone had been placed earlier in the day.  Again, one of those out of the blue events that can change the course of your whole day.  One phone call is all that it takes.

When I visited the cemetary this past weekend there was only a patch of fresh grass marking the place where we laid our little girl to rest.  No stone, no temporary marker...just a patch of grass and a bouquet of flowers that I brought along with me. 

This weekend when we go back it will all be different.  I'm not sure how I feel about that.

A headstone is an in-your-face reminder of our reality.  Our baby girl died...

A headstone is permanent.  She's not coming back...

A headstone hurts more than I had prepared for. 

 

 

A Change of Seasons

Last week felt like it was about three weeks long.

Monday was one of those days where I just wanted to hole up in my office and not have to talk to or make eye contact with anyone. The day started out okay, but about half way through the morning I hit a wall and could totally feel myself shutting down. I’m pretty sure that I cried for about 4 hours…

What was it about that day?

I know I don’t need an explanation—I have a pretty justifiable reason to have bad days, but I am always curious how a totally normal and routine day can all of a sudden turn into a boo-hoo, I want to go home kind of day.

It seems to be happening to me a lot lately…and the only explanation that I have is the change of seasons.

Cool, gloomy days = Fall
Fall = Halloween and Thanksgiving
Fall = One season closer to Winter
Winter = Christmas and New Years

Four big “celebration” days…two of which fall on the 31st of the month…nothing like a little salt in the wound.

So yeah, I’ve been a grump lately. I think that my brain is trying to ease me into the craptastic (Yes, I just said craptastic) few months that are looming ahead of me.

I miss our little girl every minute of every day—some days it’s a dull ache in my heart, others it stings like its brand new.

Last week was a stinger…

It's Official!

Today is an AMAZING day for newborn babies around the country.

Thanks to the incredible advocacy and hard work of some equally incredible people, every newborn baby will now have the chance to be screened for critical congenital heart defects (CCHD).

Congenital heart defects occur in approximately 1 in every 100 live births making them the most common defect in newborns.  Twenty five percent of these defects are considered critical to the point where intervention is required.  While some children are identified prenatally (like our Charlotte), others can go days, weeks, even months without diagnosis.  Unfortunately there are also many other families that first hear the words “congenital heart defect” through a coroner’s report.

It crazy knowing that we do a heal pokes to screen for rare metabolic disorders and hearing tests before discharge from the hospital, but there is  no screening for a disease that causes up to 3% of all infant deaths within the first year of life.

Until today that is!

I am THRILLED to tell you all today that the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) has voted to recommend that all newborns be screened for CCHD.  This recommendation acknowledges the use of pulse oximetry as a screening tool to help detect heart problems in newborns.  Early detection means less infants sent home undiagnosed.  Early detection means LIVES SAVED.

For those of you that are unfamiliar with pulse oximetry, that glowing red light is from a probe that can be wrapped around the hand or foot to detect the amount of oxygen in a person's blood.  In infants with CCHD, this level is often low (Charlotte's averaged 75-85% after surgery where a normal number is closer to 97-100%.)  The test is SIMPLE, PAINLESS, and VERY INEXPENSIVE.  

So, you might be asking what this means for all of you.  I need you to do me a HUGE favor.  If you are pregnant or know someone who is, PLEASE let them know about this recommendation and encourage them to request a pulse ox test on their newborn before leaving the hospital with them.  Some states will work on implementing this practice on a department of health level, but others will still require further legislation.  States are NOT required to implement screening at this time, despite the SACHDNC recommendation.  PLEASE PLEASE PLEASE help spread the word.

I remember how I felt the day that we learned about Charlotte's heart.  It was a terrible, terrible day, but looking back on it I can see that it was a blessing.  In the words of heart-advocate extraordinaire (and heart mom), Annamarie Saarinen, "The only thing worse than having a newborn diagnosed with heart disease is having a newborn go undiagnosed with heart disease."

Congratulations to everyone who worked so hard to get this to where it is today!