Celebration of Life

We hope you can join us this Saturday, 1/18, to celebrate the life of one remarkable little girl… her time on this earth was brief, but her impact enduring.

 

Celebration of Life

Emerson N. White

9/12/06 – 11/15/19

 

Date: Saturday, January 18, 2020

Location: Denver Botanic Gardens, Marnie’s Pavilion

https://www.botanicgardens.org/

Time: 1-5pm

 

It is an open house style event, there will be no formal service. Please feel free to come and go as you’re able to between 1-5pm.

Parking at the Botanic Gardens is free as space permits. There are ample spots and, given as January is off-season, they shouldn’t fill up.

All guests will receive free admission to the Gardens for the day. Once parked, please enter through the Visitor’s Center – tell them you’re there for Emerson’s Celebration of Life and they will let you through. Once in the Gardens, signs will mark the path to the event location. It is only a short walk from the entrance.

In honor of Emerson, we ask that you wear pink (if you have any pink in your closet this time of year) and, if you have one, we ask that you come with a story to privately share – I’m building a memory book and would love your input. Cards will be available to record your memory on.

We look forward to seeing you Saturday…

 

Christmas 2019

Dearest Emerson,

What I wouldn’t give to turn back time… if only I had known what God had planned, I would have held you tight & never let go. I would have made time for extra snuggles, one more story… I wouldn’t have asked you to wait… we would have watched TV together, side by side, all day long… baked cookies & pumpkin bread… If only I had known…

Today was Christmas. The tree looked oddly bare without all your gifts underneath it, and the house was eerily quiet without your boundless anticipation and excitement. I went to church last night in hopes of feeling closer to you, instead the hymns brought tears and sadness beyond comprehension. I promised that I would miss you, that promise I have kept. I also promised that I’d be okay, I’m working on that one my sweet girl.

Six weeks without you feels like a lifetime. It’s hard to understand how someone so full of life can one day simply cease to exist. It doesn’t seem possible, yet my brain knows it happened. Still my heart tries to hide from the truth. I know you would want us to be happy, though, especially today. You loved Christmas, you prepared for this day for months.

In your honor, precious angel, we celebrated today. We laughed and shared memories of Christmases past with you. We looked through photos and shed a few tears, but mostly we smiled. We were so blessed to have you in our lives… we are all better because of you – more patient, more accepting, more loving. Your life was the greatest gift we’ve ever received.

I hope your day was filled with endless Playmobil Hospital sets, L.O.L. Surprise! Dolls, American Girl accessories, and so much more! I can only believe that the celebration in Heaven on this, the birth date of Jesus Christ, was far grander than anything my mind can dare to imagine.

Dearest Emerson, you are so loved & so missed. Until I am blessed to hold you again…

Merry Christmas to all!

We hope you can join us for a Celebration of Emerson’s life, all are welcome.

Date:                 Saturday, January 18, 2020

Location:         Denver Botanic Gardens, Marnie’s Pavilion

                          1007 York St, Denver CO  80206

Time:               1PM – 5PM

It will be an open house event, there will be no formal service. Please feel free to come and go as you’re able to within that timeframe. All guests will have complimentary access to the Denver Botanic Gardens for the day – there are indoor exhibits, but also outdoor spaces to explore, weather permitting. We ask that you please wear pink (if you have any clothing that color) in Emerson’s honor.

In lieu of flowers, donations can be made in Emerson’s name to: The University of Nebraska Foundation Transplant Fund. More details on how and where to direct those funds will follow.

If you know you’ll be attending and could kindly drop a reply indicating as such, I’d greatly appreciate it. It’s not at all necessary; RSVP is not required. It would be helpful, though, for planning purposes, to have a general idea of how many to expect.

Thank you.

Christmas through the years…

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Forever in Our Hearts

It’s been 1 week & I’m still breathing… one day, one hour, one minute at a time.

I’m overwhelmed by the beautiful messages from each of you, they remind me how much Emerson was loved and how much her life had impact & meaning. Thank you.

Eme proved that it is not the years in your life, but the life in your years that matter most… She packed enough love, joy, & inspiration in 13 short years to span a full lifetime. Her days here may have been short, but they were rich & oh so blessed. It was an honor to be her mother & to walk beside her on this journey.

I want to give everyone a brief explanation as to what happened, as so many have asked:

Emerson was doing really well – she had a great Halloween & even weathered a (very) cold night to walk door to door, collecting as much candy as she possibly could. She loved Halloween! Immediately after the costume came off, her focus quickly shifted to her Elf on the Shelf (Candy) who would be arriving on Thanksgiving Day &, of course, Christmas. On Sunday night, 11/10, we sat in bed forever as she scrolled through an endless list of things she’d found on Amazon… each one she “had to have” for Christmas. She was in great spirits. I went to sleep that evening completely oblivious to & unprepared for what the next 5 days would bring…

Emerson awoke Monday morning with a fever. I took her to the local hospital Monday afternoon where they started IV antibiotics, stabilized her, and life flight transferred her to Omaha. She arrived in Omaha early Tuesday morning and passed on Friday. Emerson was in septic shock; blood cultures were positive for both klebsiella and e-coli. Eme deteriorated very quickly upon arrival in Omaha. The many details beyond that are still too raw and painful to recount. Her dad and brothers flew in Wednesday to be with her… heartbroken, we all had time for personal & private good-byes. Her passing was peaceful, she went very quickly and without pain.

The support we received from current & former staff at Nebraska Medicine was incredible – so touching & heartfelt… former PICU nurses came in from home & other jobs, everyone from the transplant team was present… The compassion and empathy from so many helped to ease an impossible situation. There were so many tears, each one reminded me that her life had reach. Every memory reminded me that her battles were not fought in vain.

As I sit here today, 7 days later, I’m not sure I’ve completely allowed myself to accept the reality of what happened. I’m still expecting her to turn the corner or call my name… the silence is deafening. I’ve had many distractions at home from people checking in on me and from the boys who are here until after Thanksgiving break. The distractions have kept my mind busy and helped to protect my heart from the pain. It will take a long time to work through this and I’m not sure I’ve even begun. I lost my best friend 7 days ago… She relied on me & I vowed to protect her always, 7 days ago today I could not.

We are planning a Celebration of Life for Emerson on Saturday, January 18, 2020 at the Denver Botanic Gardens. All are welcome. More details to follow…

Thank you for being a part of Emerson’s journey & for making a place for her in your heart. Your prayers lifted us through the darkest of times & multiplied our celebrations. May the footprints she leaves behind forever imprint themselves upon you. May the lessons she taught carry us all through this life. God bless.

Happy Spring!

2019 started a little rough with a lengthy admission in Omaha, but we’re home now – adjusting to a new med routine and increased level of cares. All in all, Emerson is well, although tired. Managing pain and hydration have been challenging, but thanks to the great team in Omaha who trust me to care for her and who work so well with us from afar, Eme is able to stay at home… with her best friend Bella… & all is well in her world 🙂

While we’re thankful to be back in Colorado, though, our thoughts and prayers are with those affected by the terrible flooding in Nebraska. The pictures are simply heartbreaking; the scope of devastation, incomprehensible. I pray that our friends are safe and that the long road to recovery can soon begin. Love to you all!

Overdue Update

I’m not on Facebook often, but I was recently informed of update requests on Eme’s page and signed in to look. To be honest, it put a pit in my stomach as it’s never my intention to keep you in the dark. It seems trite to say I’m very busy (aren’t we all?), but it’s true. More than that, though, are the lingering after effects of this journey for me. Call it PTSD perhaps. I know other moms who fought alongside me for the lives of their children – similar yet unique journeys, each with their own challenges, blessings, and outcomes – and we all deal with it in our own ways. For me the memories are mostly too difficult to recall, and I do my best to suppress them. After being thrust into the spotlight for years, I crave peace and anonymity.

I’ve always said this happened to Emerson and to our family for a reason, and I’ve always believed something positive will come from it – not by happenstance, but because I decide to create positive change. I still believe that with all my heart, but I’ve had to let it go for now. The pressure it created was crushing – What will it be? What positive change can I create that fits the enormity of our journey?… it will have to be big, the price we paid is huge. And how on earth am I going to find the time and energy right now to accomplish it? I have faith it will come full circle in time, but for now I’m accepting that perhaps it just happened. No rhyme or reason or greater good, it just happened. Indeed our journey isn’t over yet; I’m still in the dugout fighting. And maybe for now, that’s enough. Maybe for now, caring for Emerson is all I have to do.

That said, I appreciate those who’ve followed alongside us through the years and I acknowledge the incomparable healing power of all your prayers. It’s not my intention to only update when Eme is in the hospital, but that, of course, is when I have time to do so. Our lives are chaotic and constantly changing – it’s all good, but crazy! Never a dull moment in the White household!

Emerson is (knock on wood) doing pretty well. We’ve been extra careful this winter & have all, so far, been spared this season’s nasty flu. And a new central line last fall, along with a new line protocol, has kept her infection free and out of the hospital. We are seeing an increasing decline in her kidney function, however, and weekly labs are concerning for the health of that transplanted organ. The dietician is adjusting Eme’s TPN formula weekly to accommodate for the kidneys’ declining ability to filter essential electrolytes from her bloodstream. There’s no doubt it’s a concerning development. We’re planning a trip back to Omaha soon to meet with nephrology and her transplant team.

Clinically, Eme has slowed down… despite a “healthy” winter, she doesn’t have the energy to do much these days. She’s sleeping more and tiring out quickly; we rarely leave home without her wheelchair anymore.

Educationally, we made the decision to home-school Emerson this year. Adding one more thing to my plate everyday has been a challenge, but we felt it best to control her exposure to germs in the winter months and also to provide her more targeted learning opportunities. As she progressed in grades at school, the classroom material simply became too difficult for her. Eme, as a likely result of 2 cardiac codes, has a very hard time grasping basic educational concepts. At age 11, she’s been working on writing her name, “EME”, for 6+ years with continued inconsistency. At home, we’re working our way through identifying letters of the alphabet and learning their sounds. It’s a tedious process! She’s so wise and savvy in so many ways, but educational concepts are a significant struggle.

Thank you, as always, for your concern and for your prayers… they are felt.

Happy spring to all!

The Umbrella Effect

We are never getting out of here.

Emerson continues on lots of IV support. Twice they’ve tried to turn off her PICU drip – the first time she lasted about 15 minutes, the second time hours, but not long. She’s back on vasopressin this morning to control excessive urine output and resulting electrolyte imbalances. Add to that increased ostomy output from her transplanted bowel, and managing Eme’s fluid balance continues to be a very big challenge. Basically her transplanted organs (kidneys and bowel) are in abundant overdrive, wasting excessive fluid & critical electrolytes.

To illustrate the degree to which Emerson is struggling: average & acceptable urine output for her is roughly 50-70 mls/hour; her kidneys are excreting 500-700 (even up to 1,200) mls/hour. Her bowel output is over triple what it should be and significantly increased over her “norm”.

The infection that brought Emerson in is a distant memory. The resulting organ fall-out from the infection, though, is proving to be the hurdle we can’t jump.

Many really great doctors are involved and no one knows what to do. I just had a lengthy conversation with a senior endocrinologist here and he stated the rather obvious – Emerson is extremely complicated. He said they’ve been discussing her for a month, and she is the most involved and puzzling case he’s seen (and he paused)… in a very long time, if not ever.

It’s August 1st and this week marks 4 weeks inpatient. Bradley embarks on a new academic/athletic adventure in 14 days and Collin is off to college (yikes!) in 18. We have to get home. We had a few weeks, but time is up. We desperately need to get home.

In a nutshell, we’re never getting out of here. It’s the umbrella effect – you plan for rain, it doesn’t come; you don’t plan for it and it does. So, I’m shaking things up a bit. Maybe planning to be here forever means we’ll actually get out. I don’t know… thinking she’s going to discharge “next week” hasn’t worked. Maybe this will. Ugh.