Wednesday, July 21, 2010

Please Meet My Friends Reagan & Piper Jane



A couple months ago
a certain Reagan from Reagan's Blob Hooray! emailed me about her daughter Piper who lives in a hospital. I couldn't wrap my head around that thought, having a child who lives in a hospital, so needless to say, I thought about this email a lot.

And then, in my blogging travels I happened to visit Reagan's Blob Hooray! and cybermet Reagan and her tiny hero of a daughter Piper Jane and I fell in love. I can't see how anyone could visit this blog without becoming a Super Fan--of Reagan because she's beautiful and stylish, but oh-so-funny, but also her handsome, talented husband Jake and of course, our unsinkable Piper Jane.

I emailed Reagan back and begged her to guest post for me. I asked, "Will you write about that moment when you have to say good bye to Piper at the hospital and you feel your chest all heavy and HOW DO YOU GET OVER THAT FEELING?" Because I wanted her to tell me something that would calm the mother in me. I wanted to know that if I had to, I could do it too.

This is her response.



When I leave Piper's house on a good day, she's distracted by a toy or a book and the sting of separation is faint. We played on the floor, she likely tried to pull my earrings out and she pretty much mauled me with Pippy love for the last few hours. I smile that the visit was successful and I get in the car already looking forward to the next time I can see her. When I leave on a bad day, she makes a puss face, holds onto the bars of her crib and watches me leave. My chest is heavy and I hate myself for having obligations that take me away from her. I get in the car and put on a french song that I'm pretty sure translates to exactly how I feel (I don't speak french, for all I know the song could be about total nonsense, but please don't tell me the song is about total nonsense), and cry medium to gigantic tears on the way home.

Piper Jane is my three year old daughter, and she lives at a rehab facility about 30 miles outside of Manhattan, where my husband and I live. She has never been home with us, and has spent her whole life bouncing from one hospital to the next. She has a rare condition called Cerebro Costo Mandibular Syndrome. Her tiny little Pippy body is effected in many ways, but probably most severely in her rib cage, where she only has half the ribs she should. Having a small rib cage prevents her lungs from expanding all the way, so she is very dependent on a ventilator and unable to come home.

People ask me sometimes what it is like for me to not have the Pip at home and how it feels to leave her. It's never easy, it's a little isolating at times and often I don't feel like I can call myself a real mom. I feel guilt for my good health, having a job, doing fun things with friends and not being able to see her every day. When I'm asked these questions, things stick out to me like the time I came home to my husband taking apart her crib after realizing it wouldn't be used for a very, very long time. That one was hard for us, she was 7 months old.

I can vividly remember the shock of finding out my baby was sick while I was 17 weeks pregnant, the annoyance of tests and three times a week ultrasounds, the trauma of her early/emergency delivery and the endless worrying during her first fragile year of life, but I can even more vividly remember my favorite visits with her, and the hilariously adorable things she does. Her milestones are really marathonstones, <-let's pretend that's a thing, and we celebrate achievements that might go un-noticed in a more normal family situation. It's our way of coping, surviving and learning to love the trials that the three of us have been given.

She is scared of feather boas and hand puppets and lays face down with her hands over her head to hide from them. She turns the pages while I read to her, holds her arms out when she wants to be picked up and that Pip even puts her arms through her sleeves all by herself when I dress her. One day I discovered that Piper Jane recognizes me and I'm pretty sure she even knows I'm her mom. It became obvious that I'm her favorite. Booyah. Don't be jeal!

Just after she turned two, I got a video message from Jake of that little Pipsqueak standing up for the first time, in her crib, holding on to the bars with the most wobbly knees and biggest grin I had ever seen. I know the first time standing is a big deal for every child, but for a little Pip it is even more of a challenge, and we all went ape. Bakers (my family), Breinholts, nurses, childhood friends, former roommates and coworkers all going ape in honor of a Pip. Let me know if you want to go ape with us next time. (secret-I don't really know what "go ape" means)

Sometimes Piper Jane gets sick. Almost every winter she gets a nasty infection or pneumonia that sends her to the PICU. She has had every kind of line (IV, PICC, Art, IO...) you can get and looking close at her little body can feel like looking at a pin cushion. She has been hooked to a room full of huge machines, given heavy medications that induce a coma and had allergic reactions that cause her little body to swell so much that she is unrecognizable. We don't leave her side. We don't sleep and we don't eat enough. We sit by her bed for several hours without saying a word. We pray, we cry and we wait. And then she gets better. She always does. Pippy fights and kicks (literally, she kicks) until she is well. She spends the next few months recovering and she starts back up with therapy to regain the progress she lost. We hate those times, they are scary and hard and it hurts more than anything to see your child so sick. We worry that we'll lose her. We worry that she wont recover. And then when she gets better we try our best to appreciate the sunshine she brings us. Like that one time she looked down my shirt and laughed.

We carry on as if it's all normal. We have to, it's the only way we can be happy and thankful. Jake let's me fuss to pieces over doing Pipsey's hair and dressing her in miniature clothes so cute I want to both decorate my apartment in them and eat them for a meal...and he stays up late making her a custom chair that's just her size so she can use it for therapy. We both melted into soggy puddles this year when she was interested in her birthday presents for the first time. Last December we talked the whole way home about how she pounded and strummed the volunteer's guitar at the Christmas party and then turned around to make sure we were watching her. We put on our nicest clothes and take family pictures. We use the Pandora app and sing songs together (Piper hums her own little song). We lay on the floor and let that Pip go to town studying the inside of our noses, poking us in the eye and tapping Jake's watch.

Our family is different, our trials are very trial-y, but we can do it because our Pip is so dang Pippy.



We do our best to be a happy family.

We're the Breinholts and we're nailing it.




The Jolly Porter is back for the summer!


What to do on Pioneer Day, other than go to Spanish Fork:





I am c jane and my favorite post on Reagan's Blob is
this one--warning you will cry.
contact me:
cjanemail@gmail.com

75 comments:

madsta said...

what brave and strong people!- I hope this winter is better for you x

Mim said...

What a brave, fierce loving family. thanks for pointing to them - that little girl is more adorable than anything.

Bridget said...

I found Reagan a few months ago and love reading all about her, Jake, and Piper-- so glad you are doing this post on her! She is awesome.

We live in a Zoo! said...

Not the best way to start my day, crying, but I have nothing, NOTHING, to complain about do I.....
Said with wide eyes and a heart full of thanks that my children are healthy ='{

J said...

Piper is so adorable. Thanks for sharing your story and your adorable daughter :) I will definitely be following along on your blog for now on, wanting to cheer you guys on, crying with you and enjoying every milestone-- just like you. Thanks again! :) GO PIPER! :D

Kelly said...

Awesome post, Reagan! Thanks again for bringing Sweet Pip to our family. And thanks for inviting her to guest blog, CJane.
-Kelly Baker Fink

Crystal said...

What an inspiring mom! I used to work at a long term pediatric care facility http://www.saintmaryshome.org/.
I always found the courage and optimism of those children to light up even the darkest day.

Thanks for sharing you story. You are a great mom!

Catherine Dabels said...

Thanks a lot. It is 7:42 am and already I have a headache from all the crying! Little Piper Jane is so sweet.

appledapple said...

I'm in awe, truly!

ellen said...

I've met Jake and Reagan and one of these days I'd love to meet Piper the rock star!

Kelly said...

I've been following Reagan's blob for quite some time now and sometimes wonder if she has any idea how many lives have been touched by the Pipster. She brings inspration to my life on a daily basis. Miss Piper is my hero and my life is SO much better for having "known" her. I cried big fat tears of happiness for the Breinholts when I saw the video of Pip walking - really it made my day. Odd how someone you have never even met in non-cyber life can touch your heart so deeply, isn't it? Piper is the cutest, most determined, and best dressed little bird I have ever laid eyes on. And dats da truth.

And Reagan isn't bad herself ;) Reag you are an amazing mommy with an amazing soul and you never fail to CRACK.ME.UP!

Kelly said...

I've been following Reagan's blob for quite some time now and sometimes wonder if she has any idea how many lives have been touched by the Pipster. She brings inspration to my life on a daily basis. Miss Piper is my hero and my life is SO much better for having "known" her. I cried big fat tears of happiness for the Breinholts when I saw the video of Pip walking - really it made my day. Odd how someone you have never even met in non-cyber life can touch your heart so deeply, isn't it? Piper is the cutest, most determined, and best dressed little bird I have ever laid eyes on. And dats da truth.

And Reagan isn't bad herself ;) Reag you are an amazing mommy with an amazing soul and you never fail to CRACK.ME.UP!

Randall @ Happy For This Moment said...

Thanks for spreading her blog message, I have enjoyed reading it so much.

Becki said...

I was first introduced to Reagan’s blog this past April when her birth story was on Design Mom. Ever since I check it daily to see how Piper is doing. I have fallen for a precious little girl that I have never met. She is one of the cutest little girls that I have ever seen and each day I see her picture she makes me smile. Reagan…as a mom I admire you strength.

The Boob Nazi said...

That picture is so cute of her. I can't imagine this, and I don't even have kids.

Cody and Kylie said...

Such an inspiring story. What wonderful parents to a true gift of a girl. Thank you for sharing. :)

Elizabeth said...

wonderful -- and I wonder if Reagan would consider contributing to the website Hopeful Parents (www.hopefulparents.org) -- I am currently on the editorial board and would love her to join our community!

The crazy Shaw Family said...

I am so glad I am the only one int he office today. I am sitting here bawling, and I really hope that no one calls or comes in for the next few minutes, so I can compose myself! Thank you for this glimpse into the life of another amazing family!

mushbelly said...

Great post Reagan! Only makes me love you and your little family even more.

Michelle
(mushbelly)

Kimpossible said...

Yeah! We love the Breinholts. Though I've never met her, I love getting updates on her from Reagan. You have no idea how awesome they are.

Laurie M. said...

Thank you for sharing your story. I can't imagine the heartache of seeing your child go through this. Your strength is amazing! Piper is beautiful!

Tifani said...

Oh what a sweet sweet family.!!!!! That little Piper is ADORABLE!!! Wow what a neat story and I am so glad that our paths have crossed so we can relish in all of her accomplishments, hang in there, you are a very amazing family and I am so glad that Courtney has crossed paths with you also, she is amazing herself and makes your gloomy days brighter!!!! loves and hugs
Tifani

Shortcake and Company said...

I, too, have been reading Reagan's blob {and her new hair one too} and have wondered the very thing you asked her to write about. My heart breaks for Reagan and Jake in some ways but her courage and zest for life is inspiring to me. And pu-lease! That Pip is beyond cute and feisty. It makes me smile big smiles. Thanks for highlighting such a fabulous gal and blob.

SLP said...

Love you guys! Waaay to go Pip!

Chels said...

oh. my. gosh. this is my favorite post ever. I love pip!

Miggy said...

I always love to see Reagan pop up in the blog-o-sphere and then I get to brag that I know Reagan, Piper and Jake in real life! If you think she's awesome on the internet, you would probably be tempted to worship her if you met her in real life. She's that cool. And that Pippy...a little rock star if I ever saw one. I heart the Breinholts.

Jodi said...

Wow that was really hard to read trough misty eyes that wouldn't clear... but so worth reading. Thanks for the introduction!

Darcie said...

Just hopped over to Reagan's blob for the first time... thanks so much for introducing her. That Piper Jane is pretty easy to fall in love with, isn't she. :)

L said...

What a precious little girl that Piper Jane is! I'm so glad you have shared this family with us, Cjane! What a strong mommy Reagan is--an amazing family all around! I am adding another blog to my daily read! Lori

Kristen said...

I am sitting here like a big cry baby - I will tell you a hundred times over Reagan that you are more of a mom than ANY other mom in the world. And I just love and adore Piper. I hope it's okay that I link to this on my blog. I think everyone should know how cute and amazing she is.

Kelley said...

I'm bawling at my desk - the kind of bawling like you do when you are 8 years old and in REALLY big trouble and saying you are sorry. What an amazing family. I would say she's every bit as much of a mom - probably even more so - because of Piper. Wow. What an inspiration.

Nicole Braden said...

What a wonderful story, thank you for sharing!

kjtroxel said...

I claim I know Reagan...but I don't really. She is my BFF's, brother's, wife's, sister. Reagan's charm and bravery has touched me since I first learned of sweet Piper.
This post makes my heart happy...as always

Cardalls said...

Wow really puts life into perspective! What an amazing little girl and what an amazing spirit she must have to be given such challenges. Her parents must have equally great spirits!

Megan said...

What a beautiful, inspirational story. I can't wait until I get home to go to her blog and immerse myself in her life.

Anne said...

That little Piper, her mom and dad are really something!! I am just one in a long line of folks that feel the same. God Bless Them.

One little thing, though. Why is it that some people feel the need to describe to everyone just how hard, where, and in what manner they cried while reading this and other touching stories? I don't know, it just troubles me as a sort of "look at me and how sensitive I am". So unnecessary. It's about the story, not you, the reader!! No, I'm not finding negative in a beautiful story. I'm pointing out an irritating habit of some readers!

Kyler and Hillary said...

mY TWO favorite blogs in 'one'! Although I feel like I know you Cjane - we have never met...but I am proud to know and be Reagan's COUSIN! what a great day to see her featured on your blog. She probably wouldn't claim me because I'm not half as cool as her - but I'll claim her any day and of course that pipsqueak too because she is a fighter and a sweetheart! I love both these blogs (my inspiration).
Have Reagan and you connected yet that our grandma lives around the corner from you?

Emily said...

Beautiful story! I'm definitely checking out her blog. That Piper Jane and her family are an inspiration. Thanks for the reminder that my trials aren't nearly as "trail-y" as others.

Damaris said...

thanks for posting this. I've read her blog before and am glad she's getting to document her daughter's life.

Tana said...

I just want to (gently) squeeze that little peanut! What a sweetie! Thanks for the cry and the inspiration this morning before I put on my makeup. Didn't have time to post until now. Great blessings come in all kinds of packages!

Debby said...

Oh my gosh, what a wonderful story. It is sad but there is so much love going on there. Such strength as well. Piper is such a cutie. Thanks for sharing this with us.

Andrea said...

What an amazing family, I have spent a good portion of my day reading their story. Thanks for sharing!

AshleeMattMaxJack said...

LOVE!

thorney said...

Pip is so adorable. Thank you for sharing your story today, I am going to visit your blog right now.

Blessings, Mari

Breezi@ Not Your Average Fairytale said...

Piper is SOOOO CUTE! I love the feisty in her eyes. Three year olds are awesome like that.

THanks for sharing your story.

Julianne said...

Reagan just amazes me in so many ways...whether it's speaking her mind during a difficult time or getting my haircut just right, or her sense of style, or melting my heart with Piptures and videos or when she waves and smiles back to my daughter's (who love her btw) as we pass by her window on our way to the bus stop! A million reasons to love that beautiful mama and her family.

Jaelyn said...

I went to school with Raegan. I didn't know her to well, but I do know that her strength is unbelievable. She will truly be blessed for making the best of her situation! Thank you for sharing her story. It makes us appreciate and not take for granted our lives and the many blessing that surround us.

Sammi said...

How brave of them. Will that little girl ever get to go home? I cannot imagine that. I was crying reading that post!

annie said...

Thanks for this post. I used to be in Reagan's ward in Manhattan. I didn't know her well, but we share some mutual friends and I have always thought she was amazing.
Their story is inspiring. They make the very best out of their situation and that's all anyone can do.

Nate & Courtney said...

Wow, what an amazing family. I'm trying to get the word out about a good cause. Please visit my blog if you have a few minutes fellow cjane readers...
http://nateandcourtstaley.blogspot.com/

Brenda said...

That was the sweetest, most touching post. What an amazing family! An amazing and strong mom who loves her little girl to pieces! Thank you for sharing this, Reagan! :)

HD said...

Wow, amazing. And Piper is too cute for words.

Jennifer Jayhawk said...

I have been reading the blog now for a couple days when I have free time. What an amazing family.

I am in love with Piper Jane!!!

Cheryl said...

Piper is so adorable... I'm sure that makes it even harder to leave her. Very inspiring story of a brave family! Thanks!

Jenny said...

There are some truly amazing families in this world. And even more amazing little kids! Thank you for sharing this one.

It sure makes me even more grateful for my healthy children. I need to hold them closer and snuggle them tighter!

Andrea said...

reagan one day you and your little pipsqueak are going to be famous for how awesome you both are. i'm very happy to be your half stalker half internet friend :)

T said...

yeah... 'cause I'm not crying already you're pointing me to another amazing post? thanks for sharing such a strong family with us - I think I'm a little in lub with that sweet little girl!

Lisa said...

I am now going to devour your blog and try and figure out how to be amazingly positive inspite of overwhelming trials. Thanks for uplifting and carrying us all to a higher place!

Doty Family said...

Ah,that story had me crying! My own little girl who is 3 is named Piper also. What an example you are. And she is beautiful!

lizbonj said...

LOVE THIS POST!!! JUST ABSOLUTELY LOVE IT!!!!

Julie said...

Thanks so much for introducing us to this amazing family. I sat and read Reagan's blog for 2 hours-I'm hooked!

twolovies said...

WOW. I just spent a good chunk of my weekend reading her blog and catching up. So, so, touching.

Lucky ♥ Holly said...

The face of courage takes many forms.

ecometrochic said...

Thank you- perfect to close a day in a week of trying to be brave mommy while hubby is on a business trip. Being brave and 'nailing it' is what I'm about right now.

MLS said...

I began reading Reagan's blob a while ago. On the day I discovered it, I read it all the way through! (I was at work too!) I emailed her, told her I loved her.

So happy you have discovered her too. And now, all your readers will love her too.

Mad props to the Pips. The world is blessed because she is in it...

Charlotte said...

What an awesome story of love, trials & survival. HUGS TO YOU!! xoxo. P.S. Will go ape for you when required. :)

Jenni said...

This made me cry tears of sadness and happiness all at once. What an adorable mother and little girl. And I love her sprity attitude. Thanks so much for introducing me to his family.

Schmutzie said...

My older brother has multiple differences both mental and physical, and this post reminded me of the specialness of my original family and of my older brother.

I have never been able to explain how all the hard times were worth the gift of him, and dammit if I'm not tearing up now remembering.

He turned forty! And he's happier than ever, and my life is blessed for having him in it, even though I'm far away.

Amy said...

Thank you for posting a guest blog about someone who has a person with disabilities in their life. As someone who can relate, I have to say that you truly know God's grace, love and peace when you are faced with these trials. I wish that blogs had been around when my own family was facing these things. It would be such a blessing now to go back and see pictures and stories that were documented through the years. Serious kudos to Reagan and Jake. They know parenting through and through, even if they don't feel their path has been traditional. I always feel that God blesses the best of parents with His most special children.

Maggie said...

So, so, so beautiful. The Breinholts blow my mind with their awesomeness.

Chad & Bonny Day said...

Love Reagan's blog or blob i should say, not the first time I've cried reading it..I love her and her little family. Especially Pip..she inspires me everyday! thanks for posting this!

Watson Family said...

Holy cow... I'm balling my eyes out. What a precious little girl. We're praying for her and her mother and father! She has the opportunity to touch so many lives... and I'm sure she will!!!!!!! God bless you all!

Chandra said...

I LOVE REAGAN, JAKE, AND PIP! :)
http://www.momomod.com

Lillie Bowen aka Margot Diersen said...

I so hope and pray a cure can be found for Pippy! She is such an amazing child and it would be truly miraculous and wonderful if she could be well. We all must ask!

Geo said...

I love you.