Sharing Truth

People say that I am brave, but I'm not.
Truth is, I'm barely hanging on...

The above statement couldn't be more true in this moment. Like I've said before, I am so touched by music on this journey, and if you haven't listened to I Will Carry You, by Selah, please take a few minutes to do that. It is the most perfect 4 minutes of a song I feel tells our story so well. Go ahead...I'll wait.

When I sit down to blog, I've usually had a topic in mind for a few weeks. I've rolled it around in my head, considered its message, polished my thoughts and usually have processed the feelings involved before even sitting to type. Bear with me...because tonight is no such blog.

To share my heart in real time is a very vulnerable position for me; but today, in the span of about 10 minutes, I was flooded with emotions that I need to get out. About an hour ago, I shared a couple pictures of Pipes. Pictures I hadn't seen, but when I look at them, I could immediately tell you what was going on in our NICU journey when they were taken....and it's not what you think. You can "like" and comment about that sweet sweet baby snuggling her lovies; but I know the truth behind the pictures.

What you don't know: is how much I had to edit these pictures to feel ok to post them. The unedited pictures brought up a slew of memories of where we were last year...quietly suffering through the hardest time of our life. You see, my grief didn't start the day Piper Grace died. I have actually been pretty proud that I've been able to live, hold my head up, and give back the way we have in the months since June 2015. 

Tonight reminded me that my grief, the dirty ugly shitty grief that sneaks up on you and grabs your throat...reminds you that life isn't normal...THAT grief - started this same time last year. 

Tonight I realized that my journey with grief may hit a tough tough patch...starting now. I grieve the conversations we had to make. I grieve the feeling of losing a battle while my child was still alive, I grieve this time of year because of the word "de-escalation."

Last year, this is when it hit the fan. When Piper cued us in that her journey on Earth may not have meant to be long. When we had to be honest with ourselves, and agree that we needed to be ok with letting her say goodbye. This time of year sucks. March. April. May. All months we struggled with grief as we watched poor Pipes get bluer and bluer. We prayed that her time here wasn't for nothing. We let go of our selfish need to keep her here for us. This time last year, we gave it to God and Pipes - we relinquished control, we let her be...and waited for her farewell. 

If you have ever had to do that...it's the suckiest thing ever, waiting for someone to exit this world, knowing it's best for them...but your heart is breaking at the thought of it. These pictures today, reminded me of my loss of control. My start of the ugly grief...and that scary wait.

Here is my sweet sweet baby, last March. UNEDITED. The difference in her color might not seem too vast for you, but they remind me of the end of our Earthly fight; and regardless of the good that has come of this, it's still damn hard to remember coming to the realization that her body was too tired. Sweet, peaceful, tired Pipes...teaching us.

               

I'm really unsure that this post even has a point, other than to be real and share a struggle a fellow mom might be having. If I'm making no sense, I apologize. (Not really, I make perfect sense to myself, so who cares! HA!)

Maybe the point is: it's 100% OK to NOT be OK! Let's be honest with ourselves, kind to our fragile hearts and minds, and remember that any journey in this life is NOT on a straight road.
To be clear, my effing journey is on a dirt road, covered in cow poop and pot holes, with blind curves and tummy turning hills...but I'm ok with that. Word.

Just a Drop in the Bucket...

Woo Hoooooo!  Check out the fancy new blog design! A HUGE thank you goes out to Jodie Gerling, for coming to my rescue and sprucing things up for me! You rock my face right off, woman!
***
Have I mentioned that I've been getting my head shrunk? Ain't no shame in my game. Since February 2015, while Piper was still alive, I've been going to a therapist. I love to talk...I love to talk about myself...I love therapy. 
The result: my overly egotistic self now thinks I'm a psychologist. (Duh!)  In all seriousness though, this has really helped me dig into the how and why I want to grieve, give back, and tap into coping skills while incorporating my faith in this recovery process. 
Something I've been mulling over for a while now, is me getting tinges of anxiety and feeling overwhelmed. I've analyzed, then OVERanalyzed why; and have come to this conclusion: (I'm billing you for this session later.) I get SO excited to help, to make a difference, to give back, to have Piper be remembered...that I regress into the thoughts that everything I can do is too small. I look at this big ole' world and have the humbling realization that I am just a mere drop in the bucket. Just a small tiny blanket drive lady, trying to make a difference, but just a drop in the bucket that is children's hospital philanthropy. 
Blankets, hospital committees, NICU meals, bereavement bath products...does it make a difference? Have you ever had thoughts like this? "Am I even making a difference?"
This is when I have to stop. Slow my roll, and tell myself, "Hell YES it does!"  Now, all my psychotherapy comes in handy when I am so excited to share with you my thoughts on giving back... Do NOT let being, "just" a drop in the bucket, extinguish your flame! Your drop means something to someone. Your light has a purpose. Hold that light out and shine the way, baby! 
Matt and I have had discussions recently about our faith in God as youngsters. We were raised as Christians, and were pretty darn boring teens. No crazy fall to rise from, no huge mistakes, prude - boring teens. As a Christian, and a quiet one at that, this led me to feel like I had no real profound testimony to share with others. I always had God's light within my heart, and carried it with me through this life. 
What Piper has done, is allow me to take my light, extend my arms, and hold it out for all to see. Piper's life has given us a reason to shine that light for others, regardless of how big or small the audience. My drop in the bucket is awesome, my flame will be bright, and I will shine it for you, Pipes!
While compiling my words for this post, a song from childhood came to mind that I'd love for you to hear. It's perfect for this topic. (The YouTube video might be corny, but the words touch my heart.) I urge you to give it a listen, and think about how you use your light.  Go Light Your World ***
NOW, it's time for another PIPES shirt order!!!!! Some of you missed the last order, and we are excited to offer these again! T-shirt money goes straight into the Grace Blanket account and has been used in these ways thus far:
   * Blanket purchases to stockpile for August hospital delivery    * Bath product purchase for NICU bereavement team    * Website domain purchase    * Non-profit filing process    * NICU family meal event (we fed over 50 parents this January!)    * Footprint keepsake supplies for NICU nurses to create for families    * Blankets blankets blankets for NICU/PICU babies!
In short - Y'ALL ROCK. This is YOU shining your light! Thank you so so much!
Here are shirt ordering specifics! Call, text and email me ASAP!  817.319.8116 or tarajarvis13@gmail.com (yes, shirt prices are increased from last time...I spent waaaay more on tax & shipping than I bargained for!)
* $18 - Adult Sizes S - 3X * $12 - Child Sizes XS - XL * $10 - Baby Onesies NB - 24mo
When you call, text or email, I need from you:
* how many & what size * your shipping address * I can take cc payment over speaker phone, you mail a check, or meet me with cash! * your order isn't recorded until payment received. Emailing me doesn't ensure you get a  
  shirt...money talks, baby!  * I'll text or email you our address for check mailing. (Just not posting it here, duh!) * Checks payable to: Grace Blankets or Tara Jarvis DBA Grace Blankets 
SHIRT ORDERS/PAYMENT DUE BY MARCH 5th! (2+ weeks)
Questions? Call me. Text me. Email me. 
Check out all these fine folks sporting their Pipes shirts! How amazing! What a great way to get the word out about our blanket drive cause, CDH awareness, and remember such an awesome person!
We love you all! Can't wait to talk soon! #PipersPod

 

 

 

Realizing "Everyone's Here!" will never be a thing. Ever.

I've had this blog on my mind for a while now; and like always, I've had to swirl it around in my head for weeks before actually typing. I miss you guys! Ok, here goes.

It has been 5 months of navigating this grief thing. The weird path that has no directions, instructions, or ANY clearly marked route for that matter. Screw that. Screw grief.

I've realized, that I, like any momma thrust into the loss of a child, am blazing my own unique trail through the grief process. My path has looked a little bit like this:

   * Suck it up buttercup days. I rock, I'm cool, I got this.
   * Sleep all day...I'm a terrible mom....hours of cartoons.
   * I will make Piper's life mean something! "Let's sell Tshirts!!!!"
   * I'm uplifted by love and support, always.
   * I miss the scary place. I miss the hospital. I miss those people.
   * I'm awesome! "Let's create a non-profit!" "Let's meet Paul Rudd!"
   * I can look through pictures...I still can't watch videos. This sucks.
   * Xanax and wine?...Don't mind if I do! Cheers!
   * I share Piper's story multiple times a day. I am meant to be her storyteller.
   * I love doing family things we didn't get to do last year. Am I happy or guilty?
   (REPEAT. REPEAT. REPEAT.)

Grief is no joke. Most days I am happy and sarcastic and silly, and I have made it a point to TRY to not feel guilty about that. Others, though, I am stopped dead in my tracks by missing Pipes. Little things will sneak up on me, like the smell of Noodle & Boo lotion, a picture a nurse texts me, or seeing a specific blanket. The sneaky things stab my heart a little; but I wouldn't have it any other way.

The latest little sneak up of emotion happened when my brother, aka "Uncle Whiskey," made it home from Iraq. I had been in a text loop with my mom all day, being updated on his ETA. His homecoming. I breezed through the day, happy for mom & dad to be able to see him, excited for his fiance to get him back home! Excitement - the emotion of the day. Easy.


It was the text "His plane just landed!" that caused a stir of emotions I didn't see coming. My excitement for my brother being home, sneakily morphed into a dumping of grief emotions. I realized, all day, that I was so happy for our family to all be on American soil again...that everyone was home and accounted for. That night, I discovered that my heart didn't feel the same way. Someone will always be missing. And it will always hurt.

I sobbed the night Drew came home. I wished I could be there to welcome him. I grieved at remembering all we went through during his deployment. All he missed, the good and the bad, came roaring back. I had grieved for Piper with our family; but I hadn't gotten to grieve Piper with my brother...and my body felt that on a primal level. So. darn. weird.

For those who don't know: Drew had been on a night watch when he got the news that Piper was cue-ing her exit from this earth. He was allowed to stop, call me, and was the last family member I spoke with just minutes before Piper passed. I was heartbroken for him to be so far away. He was heartbroken for me to be to saying goodbye to my baby. Two hearts, a world away from each other, both shattered by her tiny sweet soul.

With the holiday season upon us, I am reminded of the way I felt when Drew came home. With family living their lives miles apart, we rejoice in the fact that we get to spend these holidays together, but no, we are NOT all here and accounted for. There's a teeny tiny person that will always be missing.

Piper has scarred by heart.
We will always notice that she is the little heart tug we feel when celebrating as a family, and I choose to be thankful for that empty feeling in my stomach. She made her mark on all of us, we miss her, and there will always be a void.

For those who have lost a child, or a loved one recently....I see you. I acknowledge their absence. I know they are missing from your celebration.

It hurts like hell; but I love that we've loved so much.

Last year, I smiled through Thanksgiving lunch, then headed to the hospital to see Pipes. We were all "here," just not all at home.

This year, I will be still, look around the table, and be thankful to celebrate with family. I will be thankful that, although not what we expected, this year, Piper Grace is home.

Our Life Lately...In List Form

I cannot express the outpouring of love our family has received since Piper passed in June.
We have been keeping our heads down, wrapped up in Grace Blanket busyness, and have tried so very hard to soak up every bit of the support you all have sent. Thank you, for your words, your prayers, and most of all - for keeping your memory of Piper Grace in your hearts always!

I have too many updates to tell you about, and don't want to wait to blog them one at a time, so today, I will throw at you LISTS! Kind of like the David Letterman of blog posts, if you will. Please take the time to scroll through, and check out how YOUR love and giving has impacted our family and this community as of late.

Grace Blanket Drive Grand Totals

* 2, 512 blankets were donated to Children's Mercy Hospital this August!
* From 172 donors
* From 80 cities
* From 17 states

TOP DONORS: (based on boxes received)
  1. Kansas City Metro - 61 boxes
  2. DFW Metro - 36 boxes
  3. Tx Panhandle - 23 boxes

I have gotten message after message from our NICU nurses about the blanket craziness that is going on at the hospital right now! Every baby with a brand new blanketed bed...every night. It's like Christmas for them, and we cannot thank YOU enough for your giving! As a result of all the new blankies, the hospital was able to donate their old worn out linens to our Great Plains SPCA!

PLEASE keep Grace Blanket Drive on your mind for this event EVERY year in Piper's memory. We will make this drive bigger, better, and share more love each and every year!

T Shirt Orders & Donation Opportunities

We have officially begun "Pipes" t shirt sales for the Grace Blanket Drive fund! Sport your Piper pride and help us fund further philanthropy with your purchase.

* $12 per shirt (sizes Youth Small through Adult 2X)
* Call Tara @ 817.319.8116 to run a credit card over the phone / or to plan local meet up!
* Email Tara (tarajarvis13@gmail.com) for address to mail checks for shirt payment
* Payment Due: 9/19/2015 - no late wiggle room at all!
* Shirts are expected to be completed / shipped by first week of October.

Grace Blanket Drive is excited to be providing a NICU parent meal and creating a nursing school scholarship this year with the help of your giving. We have a TON of ideas coming down the pipe (pun intended) for future philanthropy. Stay tuned!

With our new Grace Blanket Drive Fund: we are able to accept monetary donations year round, and even set up monthly commitment donations! Email Tara for more info! The Lord is working through Piper Grace's tiny life, and we are in awe!

Shirt Graphic!

A Piece of My Momma Heart

As many who have grieved the loss of a loved one know, many days you have your guard up. A "wake up - buck up buttercup" mentality that gets you through the day. I admit that most days, to function with this crazy 3 year old I have, I have my guard up. The blanket drive, tshirt sales, and Tallan have kept me busy and moving...but like I learned with Piper, some days just call for being still. Some days call for the lump in your throat to be released. Some days call for counting the minutes till bedtime, so you can cry with your spouse. Some days call for allowing memories to flood, while you be still.

As a fairly sentimental person, I can feel when "Piper" days are upon me, and am good about acknowledging the emotion I feel. Fighting this emotion does not honor Piper's memory...so I've chosen to open my arms to it. It allows me to be a better mom, and be grateful for every single Tallan quirk. It allows me to be a better spouse, as these days remind me to check in with Matty to see how he's coping. It allows me to be a better person, because I understand the silent strife and struggle the stranger next to me might be dealing with.

My "Piper Days" are often purposely triggered by a quiet drive, and a playlist that will forever be linked to this past year of our lives. My soul is so touched by music, and I've found that Piper's Playlist helps me reset, remember, and love this journey with my whole heart. I'd love to share this playlist with you. It was played at her memorial service, and each song touches my heart for a different reason. Songs you may have heard before, but may take on a different meaning now.

   * A Thousand Years (Christina Perry) - I think of a mother's love being infinite.
 
   * I Won't Let Go (Rascal Flatts) - unwavering support. I think of this as my song to Matt, or God's song for our family.

   * Never Grow Up (Taylor Swift) - Piper's sweet innocence.

   * You Decorated My Life (Kenny Rogers) - An oldie! This one has special meaning, as it was the song my Dad sang me to sleep with when I was little. How a love for someone can change everything.

   * I Will Carry You (Selah) - 100% the theme song for our journey. My favorite. Brutal!

   * See You Again (Wiz Khalifa)  - what I will say to Pipes when me meet again!

   * To Make You Feel My Love (Garth Brooks)  - the undying love Matt and I had for Piper, and how we wanted her to know so badly, how much she was loved.

   * I Can Only Imagine (MercyMe) - duh!

   * Though You Slay Me (Shane & Shane) - praising God through the hard times.

   * Somewhere Over the Rainbow (Katharine McPhee)  - uh...duh!

   * Word of God Speak (MercyMe) - my daily reminder.

  I'd LOVE to hear how one of these songs speaks to you. They will forever be my Piper songs.

A Thank You

Since last Christmas, I have planned on blogging a HUGE thank you to the staff at Children's Mercy. This was when I thought I'd blog Piper's home coming. This thank you now carries a different meaning for me. Not a thank you for getting us healthy, for sending us home....but a thank you for loving our daughter when home was no longer an option.

NICU doctors and staff face miracles, struggles, and heartache every single day. They all could choose to protect their hearts, and distance themselves from patient journeys. Our family at CMH did no such thing. They fought for Piper and celebrated as she succeeded. They fought for Piper when she backslid and struggled. They loved her when she wasn't supposed to live a day. They found fun in the good days of Piper's 10 months of life, and made our NICU journey bearable.
They continued to love her when we realized her fight was ending. They chose to love her even when heartache was eminent, and for that, we will always love them. I miss them every day, and cherish their friendships. I'm grateful for what they taught me, and I'm so proud of their choice to love each baby, every day, regardless of circumstance.

I'd love for you to jot down a couple names, and add them to your prayers, or happy thoughts list. These people have all laid their healing hands on Piper Grace. Hands that I believe are blessed by God to do his work here on Earth.  (If I miss anyone, it is unintentional! Just going from my scatter brain's shotty memory and scribbled notes!)

Fetal Health Gals: Cristy, Kristen, Andrea, Amy, Karen, Valerie

Primary Nurses: Ashley O., Allison, Marcela, Katy, Ally, Jenn, Claire, Michelle, Sarah

Day & Night Nurses: Julie, Kara, Hilary, Coleen, Stacie, Tina, Lindsay, Christina, Michelle J., Ashley S., Jen S., Kayla, Becca, Dot, Robyn, Annie, Brittney, Jenny, Lauren, Stephanie, Jayna, Greta, Katelyn, Shayna, Sam, Jessica, Tess, Christie, Elaine, Susan, Amanda Ab., Kristyn, Rachel, Sarah W., Melissa, Sara C., Amanda Ar., Linda, Jen K., Stacia, Annie O., Amy S., Julie T., Carla., Alicia., Mary, Carrie, Brenda, Jenny H., Patti, Amy Sl., Maureen, Sheena

Respiratory Therapists: Callie, Maggie, Matthew, Brian, Caree, Theresa

PT / OT / Music Therapy: Stephanie, Mich, Liesel

Nurse Practitioners: DELO, Lisa, Jill, Sara J., Kerry, Daphne

Doctors/ Surgeons / Fellows: Dr. Cooper, Dr. Olsen, Craig, Dr. Petrikin, Dr. Iqbal, Tim, Dr. Palatto, Dr. Kilbride, Dr. Nyp, Dr. Troug, Dr. Weiner, Dr. Sharma, Dr. Lachica, Dr. Oshode, Dr, Bernbaum

PaCT Team: Dr. Linebarger & Nurse Tonja

THANK YOU all for loving so hard, for caring so fiercely, and for being the biggest badasses ever to grace a NICU!

A Quick Note for Tal...

I'm up at 4am, my mind too full of thoughts. In my sleepless state, one question keeps running over and over in my head. Will you remember this?

Are you too little? Will you remember, Tallan?

Will you remember our silly drives to the hospital, and you knowing when we were getting close?
Will you remember calling her Pipes, and giving her every toy in the basket?
Will you remember our chats, our lists of things we planned to do with your sister?

Will you remember Mom & Dad's fear? Our sadness? Our hope? Our joy?
Will you remember holding your sister and not having a care in the world about her tubes?
Will you remember, Tal?

Will you remember crying with me when I was sad about Pipes?
Will you remember giving me a reason to get out of bed?
Will you remember making me a better mom? A mom who taught her child to pray, about Jesus, about Heaven?

The last year of our lives has been full of tears, and love and heartache...and Tallan, I hope and pray you remember. Remember how our family stuck together. How you were my shining light to cling to...my joy...my heart.

I vow to remind you. I will remind you, not just of your sweet sister, Piper; but I will remind you of how amazing you were this year. I vow to always remind you of the miracle that you are to me, my healing heart, my soul. I'll always remind you, babe.

You woke up tonight (well, morning) at 3:45am upset, and told me you missed Pipey. We sat and snuggled and prayed to Jesus and Piper in your heart. I had tears rolling down my face, some from grief, but most from overwhelming pride and love for the sweet smart person that you are. You make me a better me. I love you, Tallan Hope, and I will do my best to always help you remember.

Love,
Mom

Grace Blanket Drive is up and running!

Thank you all so much for loving us through this past week after saying goodbye to Piper. We are overwhelmed with the kindness of others who have surrounded us with prayer and compassion as we navigate through this loss. This blog is pretty "down to business," so I will save my sappy words for another post, on another day.

A couple months ago, I had been contemplating having our Grace Blanket Drive take place in August, Piper's birth month. The outpouring of people wanting to give back in Piper's memory has led me to believe that that is  FABULOUS IDEA! Consider it done.

We will officially be accepting blanket donations to gift to the NICU at Piper's amazing Children's Mercy Hospital, here in KC. We cannot express in words, how grateful we are for this sweet place. Let's blanket them with love and warmth! (See what I did there?)

Spending so much time in the NICU has allowed us to observe many needs that others may not think of when donating to a hospital. Donating a blanket not only reaches one family, one baby..... donating a blanket means adding to the NICU's linen closet supply. This supply blankets over 75 beds per night with clean linens; and why not add a touch of warmth and flare to these beds! A new blanket can give the feeling of home and comfort to a new NICU family, that blanket can be laundered, circulated, and make baby beds for as long as that little blankie can hold up. One blanket....will add a touch of love to multiple babies...and THAT, my friends, is awesome! 

Feel free to click back through our original Grace Blanket Drive blog post for further back story on our decision to pay it forward to our favorite hospital. Please join us, recruit your office, tell your friends, and let's cover these babies in love and prayer from around the nation!

THE NITTY GRITTY:

CONTACT: me, at tarajarvis13@gmail.com for my address to mail blankets to.
TIME FRAME:  Please have all blankets in the mail by AUG. 1st, 2015.

WHAT IS NEEDED?

• NEW baby blankets of all types, colors or prints! Have some fun, and use your creative gifts! Nurses love a fun spiffy new blankie!

• Sew your own! - About a square yard of fabric will do. (flannel & cotton hold up well to industrial washing.)

• Buy a Blankie!
• any medium sized baby blanket or throw 
• cotton or flannel receiving blankets 
• crib sheets & fitted sheets are great too

INSIDER TIPS:

• Hospital Rules - new/new with tag blankets only please. This ensures the safety of patients. 

• DIY Fleece Tie Blankets - are known to NOT hold up well to all the hospital washing. We will absolutely still accept these as donations, but use these as gifts for NICU families/babies to take home. They will not be able to stay in hospital linen rotation due to short laundry life span...those poor fellows. 

If I am missing anything, please shoot me a message! I try my best to reply asap.
Again, thank you all for helping us shower love on this precious hospital. I cannot wait to start getting blanket mail, it will do my momma heart good.

One more question: Grace Blanket Drive donated 930 blankets to the hospital last year...

DO YOU THINK WE CAN BEAT THIS??????

Pipes - snug as a bug in her custom threads!

Sweet Sweet Piper Grace

What a difficult time I'm having putting feelings into words. Bear with me.

Last blog, I spoke about the frustration of Piper's inability to wean off Nitric Oxide, having Pulmonary Hypertension (PPHN) flare ups, and starting the new med, Flolan.  Since then, we have quietly geared up our mental and emotional preparations if our final push to control her ailments failed. 

About 6 weeks ago, Matt and I had a very intense and uncomfortable meeting with Piper's team. A recent echo had shown absolutely NO positive progress in her pulmonary pressure control, and numerous attempts at trial-ing off nitric oxide had been in vain. The last resort medication...hadn't worked. Going home...officially off the table. Her body...never meant to thrive for this long. We had prepared for this once before, 10 months ago, but this conclusion still slayed me. 

The meeting then turned to the conversation of Piper's comfort. What would the rest of Piper's days look like, and what could we do for her to be happy during that time? Our answer...stop bugging her. Stop pushing her lungs to go home when they never will, stop weaning narcotics, stop pushing her tired body. Quiet her storm, and let her live without a care, until she was ready to let go. 

So that's what we did. We stopped stressing Piper out with external stimuli....and the result is what YOU guys have seen on social media these last few weeks. Piper chill. Piper smiling. Piper silly. Piper comfortable. 

While enjoying these last few weeks of joy with Piper, Matt and I knew that, with her pulmonary pressures as bad as they were, that eventually we would get a cue from her that her body was worn out. Her heart would be too tired to pump blood to lungs, too tired to oxygenate cells efficiently, and too tired to stay awake and live a happy life. Matt and I agreed to watch very closely for her cues, knowing that we did not want Piper to suffer and panic and her body shut down. 

I'm going to be honest, having this knowledge and just waiting for something scary to happen has been exhausting. Posting happy pictures of our girls, being thankful and happy for the time we have, and dodging the "Piper homecoming" questions as best as we could while staying positive until we were ready to share this part of our journey...has hurt my heart. I wanted to prepare you too. Was I prepared? Were we prepared? I'd like to hope so...but all I could do was wait, and be still, and love on Piper Grace. 

This Wednesday, well actually Thursday at 1:00am, we got a scary hospital call. Piper was not agitated, but her oxygen saturations were very low and not coming up. I drove up to the hospital to hold her, knowing full well, that this could be "the time" we were preparing for. Matt quickly joined me, thanks to my MIL racing up to help with Tal. We sat and held and comforted her...and her oxygen sats slowly increased to acceptable levels. With her no longer critical, Matt and I drove home at 5:00am Thursday morning to get some rest, both of us knowing that that episode was Piper's final cue. (Excuse my language) We took that cue: "Get your shit together. Get your mind right. Make the calls. It's time." 

Thursday afternoon, we sat and chilled with Piper Grace, surrounded by a dozen or so of her favorite NICU team members. We loved on her, chatted with her, thanked her for her time here with us. 

I was holding my Piper Grace, with Matthew at my shoulder, when she left us at 8:04 pm Thursday, June 11th. Our hearts are utterly shattered. Dozens of nurses lined the hallway outside of her pod, and we sent her out with so much love that it was palpable. 

Writing this for you is difficult, because I struggle with wanting Piper's story to remain positive. We did not lose this battle, this was not a tragedy, she didn't fight for nothing. I spent the weeks up till now preparing my thoughts for this exact moment...

Who says you have to live to 86 to have a full life and leave a mark on this world? Piper has reached so many in her 10 short months, more than I could imagine, more than we will ever know; and for that, I am so proud. 

Another thought: everyone's prayers are different. If your prayers for miraculous healing went unanswered, it does not mean God was not involved. Ask yourself: what has Piper taught me? Can you imagine the infinite answers ranging from tiny to huge? Thank you, Piper Grace, for teaching us. 

Piper taught docs and nurses about CDH, PPHN, and the roller coaster of extended hospital stays. Piper taught us to praise God as she lived longer than 5 minutes. Piper taught us to have hope for a positive outcome. Piper taught us to be grateful for status quo. Piper taught us to find your happy everyday. Piper taught us to LOVE FRICKIN HARD, and appreciate your time with those you love. 

My final lesson: in difficult times, believers and non believers alike tend to use the phrase, "everything happens for a reason," and some people might take offense to that...but I don't. I think the trick to that phrase is being okay with not knowing that reason. Piper's journey could lead to the salvation of others, it could lead to a new nursing career for momma. It could have been to show this hard world that there's still some amazing good to be shared. It could be that the people we met along this journey will be in our lives forever. The beauty and freedom if this?...I don't need to know the reason. I'm ok with that. 

I hope as Matt and I walk through this life together, that we run into friends, acquaintances, and strangers that shed light on what Piper's story has done for them. THAT is the reason we shared, and we will always be so grateful to have shared her with you. 

Please surround us with your love and light and prayer as we navigate grieving for Piper. This has been a loooooong road, and we are weary, but she is whole. Praise Him for his ultimatel healing and loving arms that now hold our sweet girl. Please remember her goofy gappy smile, and hold her in your heart always...I know we will. 

Thank you, Piper Grace, for allowing us to love you. 

* We will be having a private memorial for Pipes. If you feel inclined, we'd love for you to contribute blankets to the Grace Blanket Drive (email me) or give to Children's Mercy Hospital of Kansas City in Piper's memory. *

** Pics below are a window into her last day with us, surrounded by the ones who loved her and cared for her most. CMH Team - WE LOVE YOU ALL. Thank y'all for being with us yesterday. **

ONE LAST Bday Hat Pic: 44 weeks 4 days - with her primary nurses Allison, Jen, Ally, Ashley & Marcela. (missing in photo: Katy & Claire)

The farewell team: Dr. Jeni, Delores, Allison, Marcela, Ally, Robyn, Tess & Ashley

Piper Grace Jarvis
8.4.14 - 6.11.15