Thursday, June 4, 2020

A Birthday

There was a birthday today. 

My baby's birthday was today. 

It was quiet and solemn around the Jarvis house today; not because festivities were limited due to COVID distancing or protests, but because my baby is not here. 
He died - and I'm still pissed. 

I've discussed with Matt recently that I have not blogged a lot about Jett Matthew. 
There wasn't the months and months of updates, of pictures, of write about and get off my chest. No - this time, there was a warning, his birth...and then he was gone. 

I haven't known what to share about Jett; because his loss 
feels so much different than Piper's. 
What I can share is real & raw (duh - have we met?)...and angry. I've realized I have been afraid to share my anger with you. I am so proud of the fun and love and giving that we choose to share with Grace Blankets and our family. I try so very hard to keep things positive; but for now, love me through my anger, please. 

I remember this 1 year birthday mark with Piper. The outside world has turned for 365 days, the distant friends may assume that time has softened the blow of infant loss; but NO, my momma heart is screaming in pain: 

Time is a shitty shitty thing. 
I speak from experience when I say, yes, eventually time makes pain less acute. 
I feel we are in that space of time since Piper died. 
That first year though - time stands still for the Jarvis family. Why the fuck do I have to know this from experience? I am so angry at the repetitiveness of this! Ya'll! 

My deepest worry when preparing for Jett's arrival, was that his short time on Earth would make him less significant for others, than Piper. (I know any mom that's experienced a miscarriage, a late term loss, stillbirth...understands where I am coming from.) I SEE YOU, mommas. Your babies are significant - regardless of their time here. 

Jett would have been 1 year old today;
and I am still struggling with the lack of closure and redemption for our family. I am beyond grateful to be a part of a special needs, NICU mom, KC, CMH mom, loss mom community...and I watch other families walk their own journeys of hardship with their babies - BUT there always comes the redemption stories. The rainbow babies. The full term babies. The babies that enter these families lives and heal old wounds. I am so happy for these stories...but I am still so sad that they are not mine. We had no such redemption story. No baby that came without fear and pain. No baby to snuggle without counting the minutes until they were gone. I am still pissed. 

Yes - we know the countless outside the box options of continuing our family.  For now, try to not fix this - and just hold space for Jett right now; and pray for our family. We continue daily, with the goal of being open minded, pure in heart, and led by God for our next steps...BUT also with the notion of being perfectly content and ok with our family as is. 

We have loved the support and outpouring of love this year, and I have had countless conversations with others offering advice and help with family planning. I have realized we are all just trying our best to fix each other's pain, to make it sting less, to offer solutions that can help solve a problem. 
I urge you to step outside your comfort zone the next time you are around someone in pain. Do not offer well intended advice to make yourself feel better in the silent moment. It's awkward  - but allow someone to be in pain. Hold reverence and respect, and sit with them in pain. No solution necessary.  It's hard...but YOU will be the support they remember. 

If you have read this far and haven't chalked me up to being a bitter asshole - THANK YOU. 
Again, I am so proud of our little family, our little cause, and the positivity we try to spread out in the world....but I needed to be real for a sec. It's still hard to see happy families. To watch siblings play. To witness redemption stories....and not crave them with every cell in my being. 
This is loss. This is grief. 

I am a mother of 3, I viscerally felt that there was someone missing today. Someone important.
His name is Jett Mathew - and he would be 1 year old. 
There was a birthday today. 

                          (all photos cred: Andy Pollard)

Monday, June 17, 2019

Jett Matthew - Home

* Trigger Warning: This blog will contain horrible language (duh), and extremely raw and real discussion of death and dying. If you need to read Jett's original diagnosis blog to understand where we are coming from, CLICK HERE.

Upon Jett's entrance into this world, Matt and I knew we were waiting for ONE question to be answered moving forward. This answer would determine our plan, our course of action, our time.
Would Jett's tiny pulmonary arteries be as bad as assumed? Are they able to be helped surgically?

YES = surgery, lots of wait and see, a big huge MAYBE on survival of said surgery, and then months of hypoplastic left heart surgeries to come.

NO = NO. No help can be offered surgically. His arteries are too small, will always be too small, his body will live with current stability for a while, but his heart structures will cause his eventual demise. Hospice care.

We got our answer from the heart team 3 days into our NICU stay..... NO.
We were prepared for NO. Actually, we would have been shocked otherwise. We knew we would have limited time, we knew this was God and Jett's ballgame now. Love. Snuggle. What now?

If you follow our social media, you saw how great Jett was at breathing on his own in the NICU.  This is when we choose our miracle. Jett's little body created vessels most babies don't have. These helper vessels try their best at balancing blood flow to the body with the crappy plumbing of a heart he was given. These vessels are literally TIME...but they expire. We knew that going in. Helper vessels may make us stable enough for we quietly geared up. What a miracle that a tiny baby body, in my tummy, tried his best to create its own vessels...for TIME with us.

Once we received word of our NO from cardio, Matt and I set out to accomplish "normal baby milestones" with Jett. Room air breathing with no oxygen help, full feeds via OG tube, parent training on said OG tube. These were the HOME parameters.  Quietly we cherished the snuggles, hoped for the best, and then snuck the mister home - June 14th - after just 10 days in the NICU.

So - HOME doesn't mean it's sunshine and rainbows. Home means hospice would follow Jett, we would check in with cardio to see how his ticker was progressing (or digressing), and eventually suffer the same loss we've done before with Piper - a baby who was too blue, not enough oxygen and blood flow to sustain life, we would have to say goodbye. Months? A year? Our literal deja vu have extended time, and still lose. We knew this. We had to come to terms with this. We choose to love. This fucking sucks; but let's love anyway. It's ALL we can do. I'm terrified to watch for the warning signs, I'm in a panic that we have to do this again, I'm trying SO SO hard to be present and grateful BUT I AM SO AFRAID of the pain I know is coming.

June 16th, 2019 - Jett gets his front door debut with Daddy on Father's Day! It is 3pm here...and life would fucking kick us in the face by 6pm. 

After brunch and afternoon snuggles with the family, and the house quieted from visitors, Mimi and I headed off to the Target to grab some baby supplies, then to grab take out dinner. 
Matt, Tallan and Jett stayed home to start a feed. 

I arrived home to lights, sirens, police cars, ambulance, fire truck, people. Everywhere. Panic. 
Running in the front door, I am only allowed to our stairway before I'm stopped by the chief medic. Matt is feet behind him at the kitchen island with firefighters, and is crying, looking at me and shaking his head. Jett is lying on the counter. We are done. 
Not able to get to my husband, all I can remember is screaming for Matty, and clawing at this poor man's shirt, as he explains Jett's heart has zero. Zero electrical activity. 
While we were gone on errands, actually in the last 10min of our drive home, Matt noticed something wrong, grabbed Jett to wake him with a diaper change, discovered no breathing and called 911. 

Matt Jarvis, alone with his limp newborn and 7yr old, called for help, began CPR and directed Tallan to open the door for first responders. He fucking had to do CPR. Alone. Terrified. 
My worst nightmare. Our worst nightmare. 
Our preparation for grief, quickly turned to processing trauma. 

Do you know what happens when a child dies at home? Police stay to take pictures like it's a crime scene. We were confined to our front office and couldn't go near the kitchen, where Jett's body lay. We had to vomit out every fathomable medical term we knew about Jett to explain his reasons for hospice care at home and for his medical condition causing this demise. Police stay until the Doc in charge of Jett contacts them to verify this condition. Matt and I are questioned about his diagnosis and the events of the day...separately. This is so fucked up. That's all I could say as I waited. It's all my brain would think. This. Is. So. Fucked. Up. 

The above scenario is protocol, and I am so thankful we had discussed this with with our palliative care team while we were still in the hospital. Once doctors are contacted, things ease up; but damn what a trip it is until then. These poor young cops are pacing, deer in headlights, tears in eyes, mortified. I realize "We're those people. We are their nightmare call. Baby. Dead. We are those people."

Surrounded by family and our palliative care team, who came running, we ended our night able to hold Jett Mathew one more time. He left the hospital with a crappy heart; and it was way more tired than we imagined. It stopped. Too tired to compensate for shitty plumbing. Stopped. 

Last night was a movie I felt I watched from above. I've never felt visceral pain like this. Matt was alone and had to do the unthinkable and I am sick about it. I am scared to death of what this does to him, to Tallan. I replay over and over myself screaming and clawing for him. I just needed him, I needed him to know it was ok. There was nothing we could do, nothing. I'm so so sorry for what he's experienced. I am sorry we have to do this again. We held our baby last night and said goodbye; and the fact that we've been here before is so fucked up. So unfair. So painful that there are NO words to describe it further. PAIN. 

After such trauma as last night, comes the silence. What now? 
We prepared for this, but not for the acuteness of how it happened. We are in shock. We've held one another up, that's all we know to do. We thanked God for the family surrounding us and for the small amount of time Jett spent with us. We thank God for the ability to remain upright at the moment. We will sit with this pain for a while, and let it be our reminder that there was love. We will remind each other we are enough.  We are enough. 

Jett Matthew Jarvis  - I'm so sorry this happened. That your heart never gave your body a chance. That we had to spend so little time with you. I may never know why our family has had to endure such loss; but I remain so grateful for you. I'm so grateful for our time spent loving you. We are in pain, but trust you are not, and for that I am thankful. You are HOME. 

We are not alone in our pain. We are in no need for divine answers for "why?" All we needed was love...and that was given. We are tired and numb and our hearts ache but we have LOVE that endures. Please, God, use this for good. We are so grateful for each other. That's all I know to say. 

Monday, April 29, 2019

Deja Vu

Ugh. Y'all.
I have no idea where I begin, but want you to know my heart has been set on writing this blog for a while now. I shall start from the beginning; and beg for your grace with my language, because frankly, I don't feel like censoring myself, my thoughts, my feelings, OR my F-words tonight.

The Timeline

Matt and I were quietly excited to be ready, trying, then pregnant this fall! After a couple years of grief counseling, a move, another move, we were overjoyed about adding one more to our family. About closure. About coming full circle and having life resume after we froze for a bit with Piper's death.

In November,
I answered a phone call from a familiar number, Children's Mercy Hospital here in KC.
* For back story - Matt, Piper and I had our entire genomes coded when Piper was born, to test, at the highest level CMH Genome Center, if we had any matching mutations that could explain Piper's condition. NO matches for any of us were found in 2014. Along the road, when narrating Piper's story to new friends, we do mention that any random day, on any random year, at any random age, we could get a call that the genome team had plugged in a new gene finding, and have a mutation explain it all. One day... far away.... we could get a call.
I was not prepared to receive that call so soon, this Fall, this November 2018.*

The person on the phone was our genetic counselor, who explained that a new gene mutation has been discovered, a double mutation of the HYAL2 gene, that they believe was the cause of Piper's birth defects. A homozygous mutation (meaning a gene copy from mom & a copy from dad) causes the pathological results of:
      * Cleft lip & palate
      * The VAST array of any heart defects
(Piper's Diaphragmatic Hernia defect is assumed to belong in these findings, and will be added when more and more cases are discovered.)

At the end of this call, I had to disclose that I was currently 10 weeks pregnant with a new baby, and that this call was changing everything, triggering PTSD, causing alarm, wreaking havoc on what I thought was about to be a rainbow pregnancy. This call frickin' sucked. What did we do? What will happen? What the hell do we do now?!!!!!!

A week later, I began the journey of the shittiest deja vu you can imagine.
With a new gene to target, I immediately went in for a CVS (Chorionic Villus Sampling) to gather genetic material from baby, and target test for this specific gene mutation on HYAL2. Matt and I, shocked into silence and despair in this last week, completed this procedure, then hopped on a plane to Disney. JOY.

In December, 
 While striving for a fun family week at the happiest place on Earth, Matt and I awaited the phone call from the genome team. Three scenarios were in front of us.
     * NO mutation of HYAL2 = all good, nothing wrong, breathe.
     * ONE mutation of HYAL2 = baby will be a carrier of this mutation but show no symptoms
     * DOUBLE mutation of HYAL2 = we will experience a pathological result of any defects I listed
        above: cleft lip, cleft palate, heart defects, diaphragmatic hernia?

Mid-vacation, we received our call. Good news? Baby had a Y chromosome and we now know it's Jett Matthew in my belly!
Bad? Double mutation of Jett's HYAL2 gene means I am no longer in ignorant pregnant bliss. I am now in hell. The same hell I've lived before. The hell that caused so much trauma that my body viscerally reacts when I think about going through it again. Double mutation. Fuck.
At this point we knew Jett would experience any number of birth defects; but we wouldn't know which until we got home, switched all care to Children's Mercy, and scanned for what we could find.

NOVEMBER. DECEMBER. - We have been in agony and fear and dismay since this Fall and haven't been able to share. It has been MONTHS of congratulations, phone calls, cute pregnancy questions, facebook bump comments, shower questions that we have been fielding in silent fucking misery. Statements like "ohhhh, your family is so deserving of this after what you went through!" or "Jett will come and heal your hearts!" have been met with a smile and a "thank you;" but received in such a dark place in my brain that it's been torture. Do I argue with you? Do I dare burst the bubble of what people HOPE AND PRAYED for our family, and tell them I'm actually living in terror? Do I tell the truth? Do I mention that all this has done is make me feel like the biggest fucking disappointment and failure? Do I ruin your day by sharing that THIS, this deja vu, is Matt and my daily nightmare?
This has been the struggle. Pushing through the darkness and despair of disappointment, while maintaining a happy face for our daughter, for our friends, while we gathered more information.

Since January, 
All my OB monthly scans have been at Children's Mercy.
Our first scan at 18 weeks immediately showed this little face, that was a spitting image of a gal I knew, Piper Grace. God and Piper must've known we'd smile, and not be phased by the discovery of the same little cleft lip & palate for Mr. Jett. What some parents find devastating about a facial defect, we chuckled, knew this was coming, and had decided we'd know who sent Jett, when he showed his gappy clefty grin on camera.
Cleft lip and palate... check. Pathological result #1 of gene mutation.

OUR JOY, albeit small and comical to our family, is that on this scan day, we saw a completely formed and functional diaphragm. 2 big functioning lungs. A belly where it was supposed to be.
This was my reminder. This isn't Piper's story all over again. It feels the same, some things may be the same, but to treat this journey as it's own. Deja vu with fear and pain and anger and baby defects, but damnnnnnnnn, boy has a diaphragm!

We would have to wait a few weeks to Echo Jett's heart to see what we would be dealing with. We knew every case found with this mutation WILL have a's just a crap shoot on which one(s).
Again, like with Piper's first blog, we started with fixable problems; and ran into some road blocks and deal breakers along the way.

Jett's fetal ECHO stomped on our hearts, and showed a multitude of problems. An explanation for my medical and nurse friends below:
     * Hypoplastic (too small) left ventricle
     * Mitrovalve blocked and not functioning
     * VSD (hole between lower chambers)
     * ASD (hole between upper chambers)
     * Tricuspid valve leaky (but helping with flow)
     * Aorta is good and helping with flow
     * Collaterals present (extra vessels created by body to help with bad heart plumbing)
     * Pulmonary Atresia. (Deal breaker. Teeny Tiny Pulmonary arteries not able to help with blood
        flow to the lungs.)

If you're still with me, basically Jett has hypoplastic left heart syndrome (HLHS), PLUS the additional Pulmonary Atresia.

HLHS is fixable. (If you've followed us since our time filming the Inside Pediatrics docu-series for Children's Mercy, you'll remember baby Winston's story with this heart condition.) Repair involves multiple surgeries from birth to toddlerdom, to revise plumbing of the heart. These repairs are serious, always life threatening, but this is fixable.

BUT. (Can I stop here and just say I'm sick of MY story always having a "BUT!")
Pulmonary Atresia is our deal breaker. Our game ender. Our ultimate trauma deja vu.
Jett has wayyyy too small pulmonary arteries. These arteries are what take deoxygenated blood to the lungs so he can breathe, so he can stabilize enough at birth and LIVE through any heart repair surgery. These pulmonary arteries MUST be normal, girthy and healthy to even begin discussing heart plumbing repairs.
Jett's are tiny. They can't be tiny in this life scenario, but dammit they are tiny and they are THE reason we are unsure about his life on the outside.

So. Here we are again. We have gathered all the information, and are left with the probability that life will not be long once Jett is born. There is just too much stacked against his little heart.
We have to do this again. We have to plan for this again. We have to prepare our family for this AGAIN. Except this time, we know how painful this is. We are not ignorant to infant demise. We are not ignorant to the strain of NICU time. We are not ignorant to the trauma and agony that comes with knowing WE TRIED SO HARD, ONLY TO FAIL. AGAIN.

What will be different - is that the nursing and clinician veil that once was apart of our journey with Piper, is no longer there. We know this hospital, we know these people, we have walked these halls.
From the moment we learned of the direness of Jett's condition, we literally have had CMH love from every possible angle. People who know, who knew Piper, who choose to not be afraid of our story and RUN to us in love and support, have been my saving grace during this silent journey. Girls who will choose to RUN to our birth, even though it may end in heartbreak, girls who will RUN to care for Jett if he's stable enough to spend any NICU time...These staffers have held my shattered heart these last few months, and I am so grateful.
When I ended that November phone call I was pissed. Please God, don't make this why we moved back! I don't want to be back so we can have our hospital, our people. Please don't make that the reason we're here.
NOW - I am so so so thankful. We are here, surrounded by Piper's people, who love on anyone Jarvis and will accept Jett Matthew with joy and hope for however long that may be. God placed us among these people, because they heal more than babies. Their love heals my heart. (MUSH ALERT!)

Whew. Now ya know.
Damn. That's a lot to spill, and I thank you for allowing me to spill it. Thank you for your grace.

Our family is in preparation mode as best as we can be. All grandparents, aunts and uncles have been informed and we will all await Jett's early June arrival. My layperson, although NICU-wisened brain, is preparing for the few scenarios we may meet when Jett is born. Here's what I know:
     * We plan to intubate and assess to give little man ample opportunity to tell us what he needs.
        We have not given up enough to just birth, swaddle, say bye. NO - he will have a chance to
        show us all what life on the outside may mean for his body.

     * Jett may not stabilize well. His pulmonary arteries may be so minuscule that life on the outside
        and remaining stable is not possible.

     * Jett may stabilize enough to be moved to the NICU. To live as long as those pulmonary arteries
        allow. A surgeon may asses his situation here, and determine the ability to enter any repair
        surgery, or if these arteries are just too small to sustain life.
        Only God and Jett know what his body can do and handle on the outside. We will just wait and
        see. If Piper Grace taught us anything, it was to prepare our hearts for the task at hand, knowing losing a baby may be in that preparation; BUT (ohhh, kind of a good "But") never assume we know the time frame of this little life. She showed us 10 months of love we didn't know we'd have. I will not just assume Jett will die immediately. We are prepared for that, absolutely, but I know Jett's time here is not in my hands in the slightest. Hope & Preparation for despair is a tricky thing to try to explain, but I can assure you your heart has room for both.

Emotionally, I have run the gamut during these last few months.
Full disclosure, there were some dark dark thoughts. Why? Why did I have to meet this Matt Jarvis if the end result of our love would only bring heartache to all involved? Why? Why did we need to continue our family? Why does NOTHING in regards to family and babies work out for us and bring pain? Why do we just bring everyone pain?
Then, in the midst of the fear and the dark, God tapped me on the shoulder.
He has reminded me to look back. Things went perfectly. We created all things good and perfect when we were ignorantly not paying attention! Tallan Hope Jarvis, in the midst of all this pain, is the light He gave to us. SHE was what worked out. SHE is why we had babies. If the worst of the worst happens I know, Matt knows, SHE - Tallan Hope, IS ENOUGH! Thank you, God, for this gift you gave before I knew how precious she'd be to our family. We three are enough.

Most days, as the lady carrying the baby, I deal with the brunt of the reminders of what will happen when this is all over. I think the thoughts, I feel the feelings, I say the things on my brain to the only dude (poor guy) who knows what it's really like to go through this hell twice. Matthew Jarvis didn't know this would be our journey 18 years ago. He is my quiet agreer to my thoughts, my literal pillar of support when my despair causes such panic that all he can do is physically hold me up while I cry. I am so sorry. I am so sorry he has to do this again. I want to grab his face and apologize every day, that he has to endure this again. It sucks, but Gahhhhhh I would be lost without his strength.

We are slowly coming into the time frame we are comfortable with telling Tallan. She is fully aware of cleft lip & palate; but has not been briefed about Jett's life prognosis. We are finding a window between her carrying a burden for too long, and also being prepared for what birthing him means to our family. We are determined to not allow her entire childhood be reminders of this frickin trauma. Our goal is essentially to explain that something keeps going wrong when we have babies, that we don't know why that keeps going wrong, BUT (good "but" again!) that SHE is what has gone right. We will not harp on what we are losing but constantly remind her of how perfectly and wonderfully she was made by God for our family. She has the perfect example in her sister, that lifespan is not determined by us, that years on Earth doesn't make life more meaningful. She will spend her childhood knowing SHE IS ENOUGH and that good has come from our losses as a family. We are worried about this grief for her, but know what resilience she has shown and will show moving forward. She will move mountains, my friends.

If you are left speechless, pissed, angry, confused about why the hell this would happen again - welcome to our world. We have experienced every emotion listed. We go through bouts of complete and utter anger of the unfairness; only to be followed by the "thank you's" that allow the light back in. Thank you, God, for Matt Jarvis. Thank you for allowing us to be near our hospital. Thank you for allowing me to share, even in the dark times, what my heart is feeling. Thank you for Tallan Hope. Thank you for Jett Matthew, and for the advancements, even in this year, our two babies have helped make in the genetic knowledge of the medical community. Thank you for my health. Thank you for allowing me to carry Jett to term. Thank you for giving me the knowledge that I can get through this, because I've been here before, and survived.

I read an article ( detailing Psalm 91 recently that cut me to the core, and I will leave you with those thoughts. For the people who wonder "why?," or when I ask "why!?,"

"God doesn't pledge to keep us from all worldly suffering and trouble, but he does promise to be with us, to rescue us in his perfect timing, and graciously honor us for walking the path of pain with a heart of faith."

Matt and I have to become resolute in the fact that we may never know why we will have to endure these two experiences. It may hurt, it may be unbearable at times, but I know we will survive. I know we will strive to make good once this storm passes. I know we are grateful to have each other, and SO SO look forward to the days we are living life with this as our memory, not as our present. It will take time, but we have faith that endures, and love that knows no lifespan.

**P.S. - With the above million word blog of information, we have decided to press PAUSE on Grace Blanket Drive this summer, until things have calmed down emotionally. 
IF you are in KC and want to drop blankets by, we will be happy to see ya; but let's not plan on mailing us blankets from afar. We will post when we feel it's time to resume, and do all our fun deliveries late fall. Thank you so much for understanding. 

Monday, June 11, 2018

Reflections from Daddy

Monday. Blah.
It's not just any Monday, though. As much as Matt and I don't want to over emphasize this day, our minds and bodies remember the trauma of this day.
This day - 3 years ago - Piper Grace left us for heaven.

There isn't a fancy memorial, no sweet balloon release, no gravesite to visit...but we choose to be still today, and acknowledge the pain with reverence. We quietly give this day some space.

Motherhood calls and gets me out of bed most days that I feel down about Pipes; and today was no exception. I'd decided to stay busy, guest blog for a KC mom group, and hang with Tallan Hope. (Matty is traveling - and that made me extra bummed.)

Running errands, with the car stopped, I open an email to the sweetest words from world's sweetest man. Matthew Jarvis isn't the blogging type. He is my silent supporter, who shares in my grief in his own quiet way most times. Today - he wrote. He shared his thoughts on our journey with Piper and after her death. Quiet, Dr. Jarvis...spilled his guts.

Me being the oversharing A-hole of the family.... of course I want you to read his words. His heart.
So here it is. Grief and loss - 3 years later - from the heart of Piper's Daddy:

"Hey babe,

I know today is definitely a day where few parents or siblings can even begin to imagine the emotion we feel as we think back to what experiences we had with Piper and Children’s Mercy. To imagine it’s been 3 years is crazy but I know it feels like it was literally yesterday. 

When I start to remember those 10 months I instantly smell the smells (shampoo), remember the smiles, and instantly are proud of the way we took on that unimaginable life experience. To this day there is not a day that goes by where I don’t stop for a moment and remember something about her or the experiences we had or the worries we went through. In those moments, I realize the blessing it was and how much stronger and focused Piper made us.  To hear Tallan discuss Piper and be confident when discussing the loss of a sibling at her age I know that because of Piper, Tallan will be able to handle anything life throws her way. For that I ‘am thankful! From our perspective, we worry about losing those memories and diminishing the impact Piper had. 

I think we don’t always see the impact she has made at his woven itself into the very fabric of what we do every day. For you, reviewing the impact Grace Blankets has had (the stats yesterday were mind blowing) and to even think how many individual lives have been touched by what you do every day is amazing. We may never know all the stories but we do know that it’s working and you’ve created an organization that impacts families in the worst of times. The way you view any one in need and whole heartedly take initiative to help not waiting for someone’s request but by taking action because you’ve experienced that and how people may not request what they truly need. For me, I think Piper has helped me to live life without fear, without anxiety, and to realize that every day no matter how small we have the opportunity to impact someone. To truly cherish what matters most in life because as we both know tomorrow is not promised we only have today.

I’m not writing these notes because today is a day of sadness. I’m writing you to say how much I love you and how proud I’am of what you’ve done as my best friend, an amazing mom to two amazing daughters, and what you do every day for our family! I wouldn’t have made it without you babe and wanted you to know that I see what you do every day and truly am in awe!!

I love you!

Sunday, November 26, 2017

Woo Pig Sooieeee Ya Later!

I've just realized I have only blogged when we've had big news...and well, here I am blogging, so read on mah friend.

Matt, Tal and I have been in Central Arkansas for a smidge over a year now.
While it has been an adjustment for all of us, we have officially settled in, unpacked, gotten to know some people. Matthew has loved his new position with Walgreens, and Tal has thrived in all things 5 year old! Things have settled...and God laughed.

{Cue Big News}
About a month ago, Matty was approached about a new job. (Uh, what?)
Once again I find myself in awe of the man he has become, the mind he takes to work with him everyday, and his ability to excel in whatever is set forth in front of him.
Matt has been asked to be a Director of Pharmacy for Rx Savings Solutions. A job where he can brainstorm, create, and implement ideas, from scratch, that will help this company change the pharmaceutical industry. He is SO SO SO excited about what this means for his career; but most of all, he has made sure that this will be such a great thing for the future of his family.

The new job means we have to relocate...AGAIN. (seriously. I just unpacked, bro!)
The new job means we move....BACK TO KANSAS CITY!!!!

Apart from the minor (super minor. super minor) heart palpitations I've been having about boxing our lives back up again, we are excited to come back to a city we love, back to family we love, back to friends we missed dearly!

With the news of this pending move, I've had a lot of time to reflect on our short time here in the Little Rock area. Being finally settled for me, meant I had made friends. I had released the guard that is up when you know NO ONE. I have some women close to my heart that have made such an impact in such a short amount of time. I will always look back on this Arkansas time and remember how welcome and loved we have felt here.

I am so grateful...for the woman who saw a sad/self conscious mom, alone at the Christmas Program, and became my first friend.

I am so grateful...for the woman who grabbed my hand and dragged me to dance sign ups; and became my sweet as sugah, tell anything to friend who didn't judge my dirty mouth, who always laughs at my jokes!

I am so grateful...for the neighbor who {coincidentally} had also been through child loss, and became my cry anytime friend, my wine friend, and "I get it" deep friend. God put our houses next to each other for a reason, momma!

I am grateful...for the neighbor who got the wrong mail, who dragged my self conscious/bad mouthed self to Bible study, who listens and hears my heart so well it's scary.

I am grateful...for all the women who have allowed me to tell our Piper's story, who have loved and supported our cause. I am so appreciative of the welcome and generosity you all have shown.

Most of you consider me a goob. An outgoing, crazy gal who has no filter.
While I am ALL of those things, my experiences with Piper have created a very tough, guarded, sentimental, though careful with my emotions woman. I was pretty nervous about moving to a new state, with new people, and new wounds to re-open as I spoke of our family and our loss. For the people who have entered into our lives here - I am so grateful for all of you, and you will always hold a special place in our hearts. Our story.

We will be listing our house - THIS WEEK! Matt starts his job in KC - THIS WEEK!
Prayers, please, for calm and patience during the selling/moving process. We would love to not live separately from Daddy for too long! Tallan and I will join him for some KC house hunting ASAP, and get moved as soon as this Arkansas house sells! We are stoked for our next adventure!

Thank you, Arkansas, for rocking our faces. Woooo Pig!

Monday, June 27, 2016

Grace Blanket Drive 2016!


Our 3rd Annual Grace Blanket Drive is officially LIVE! Help us make this year the BEST EVER!

We are now accepting blanket donations to gift to Piper's NICU at Children's Mercy Hospital, here in KC...

AND THIS YEAR, we will also be expanding our donations to some areas close to YOUR hearts as well! Grace Blankets friends in Amarillo, Lubbock, Houston, Little Rock, and Florida will be helping us deliver to their area NICUs! How amazing is this? YOU guys are making this happen, and we are beyond excited to increase our scope of service!

Spending so much time in the NICU 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. In KC, this supply closet 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! 

Please join us in giving back to our NICUs, recruit your office, tell your friends, and let's cover these babies in love and prayer from around the nation! We will accept blankets for ALL areas...and then divvy our stock among our new hospital friends. 


** CONTACT: or text 817.319.8116 for the address to mail blankets to! **

(We're moving and I'll give you new shipping info!)

 Please have all blankets in the mail by AUG. 1st, 2016.

  • NEW baby blankets of all types, colors or prints! Have some fun, shop around and use your creative gifts! Nurses love a fun spiffy new blankie! 
    • any medium sized baby blanket or throw 
    • cotton or flannel receiving blankets 
    • crib sheets & fitted sheets are great too, and always needed!
  • DONATE MOOLAH! We can take care of the shopping for you, if you'd rather donate funds to our cause! We use our Grace Blankets fund each summer to buy additional blankets for hospitals. Contact me: we can take CC's and checks!
  • 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.
  • Yes, this is safe for all. With hospitals' Back to Sleep & Safe Sleep regulations, nurses use these blankets as bed linens underneath babes...not to cover them up! :) They can also be a great sibling support gift, and social worker scenario gift for families in need leaving the hospital. 

We are so excited to be continuing our work with our Grace Blanket Drive for the sweet babies of Children's Mercy Hospital, and now other NICUs nationwide!!! 
Named after our sweet Piper Grace, and made possible by her very own prayer warriors!

We are counting on your help! Can we beat last year's total?
2014 - 930 blankets donated
2015 - 2,512 blankets donated
2016 - TBD!!!!!!

Please do not hesitate to email me with questions! 
Here's to warming hearts, by blanketing babies with love!


Saturday, June 11, 2016

On this day...

A year ago, on this day, Piper Grace left this earth. 
I was aching, body and soul. The "worst case" had finally caught us, our fears realized, our grief began...a year ago today. 
The drive home from the hospital the night Piper died, I remember being quiet. Silent with a million questions running through my mind.
  "What do we do now?"
  "Did that just happen?"
  "Will we be ok?"
  "How much worse will this hurt?"
  "How long? How long will this hurt?"
Piper's entire life, starting in utero, we planned to lose her. We planned, not knowing the day or hour, but we hoped, we loved her, celebrated her, learned from her and still planned for her to leave us. We prepared our hearts for the day they would break, not knowing how shattered we would feel. Shattered. What a perfect word for how her departure felt. 
Here I sit, a year later, shattered still - but glued together with the love and support Matt and I have received. Glued together by the awe we have in how Piper's story has touched others. Thank you, for loving us this year, for remembering our sweet girl, for helping us through.
I truly believe our family was touched by God's Grace during this time. When anyone said "I can't even imagine how you cope..." the answer is GRACE. How fitting, right? Grace.
Yes a year has passed, we have lived and loved and learned some things. I look back and am proud of our strength. Our hearts have endured turmoil, and yet we survived. It's allowed me to view life's struggles with a different lens. There's not much I fear I can't handle. My heart can handle it. Bring it on, life! Thanks, Pipes, for teaching us to stress less, and conquer more!
I'm proud of my marriage. I've never been more grateful that I married by best friend. In the midst of our NICU journey, the man next to me wasn't just my husband of 10 years. As my heart shattered, I turned to the 15 year old boy that was my best friend. He held me up. He knew my strength and reminded me of it. He wiped my tears, validated our decisions, and was our rock. Matthew Jarvis, I love you as my husband, but you, as my life long friend, was what got us through. I'm so proud of us. 
I'm grateful for the teaching moments Piper's life and death has afforded me. Tallan Hope has been so receptive to chats about death, Heaven, God, Jesus; and I am thankful for her frank and curious mind. 
I've spoken to a few groups, strangers, starbucks patrons, anyone really...about Piper Grace. The biggest lesson I've learned this year, is that I DO NOT HAVE TO KNOW how Piper will touch others' lives. I am here merely to share her story, and watch as she affects so many people in so many different ways. I think many people ask "why did this have to happen?" or the dreaded "everything happens for a reason," and I sigh and say that I do not need to know why. There's no ONE why, right? Think of how Piper's life has affected you. There are a million different ways she's touched you all, and it's my single most favorite thing to hear about. 
Yes, Piper Grace Jarvis died a year ago, on this day. Matt and I kind of made a point not to build up expectations for this day. No rehearsal of emotions we assumed we'd have. No grave site to tend to. No balloons to release. We chose to acknowledge this day quietly as a family, and contemplate how far we've come in this past year. 
A year ago, this day sucked; but the day she left us seems insignificant when compared to the day she arrived, the days we loved her, the days she taught us. I will be grateful for ALL the days I had with Piper Grace, even this one. 
(Pics following are of our final hours with Piper.)