Don't Be Afraid...Promise!

"What brought you here today for the pet therapy handler training?" the instructor queried. 

As that questioned was answered by student after student, I contemplated my own response:  tell the truth or tell the answer that would be easiest for the class to hear.  I opted for a combination of both.  I shared that my daughter was the inspiration behind wanting to visit the pediatric ICU and how, though short, her life brought much meaning and motivation for many.  I kept it short, sweet and upbeat. 

However, as our class took a couple periodic breaks and then we headed to lunch, I noticed that people avoided making eye contact with me.  It was quite the mixed group of students but I kind of knew right away why they weren't looking at me. 


Her death.

You see, I get it.  It makes people uncomfortable.  It isn't the way the world works, a child's death, and it just plain and simple makes us uncomfortable. 

Except when the death happens to your child.

For us, we must speak about our child, my Everly, just like I must have air to breathe or food to eat.  Whether it's just the mere mention of her in my count of "how may children do you have" (which I was asked for the first time this weekend) or I expound on her life and Trisomy 18 diagnosis because someone is truly interested and this is new for them. 

I survey the lay of the land, the situation, the person or persons I am addressing before I speak.  I try to temper my statements based on all of these pieces of information.  When asked at my training class, I wanted to answer the question as to why I attended the class honestly but keep it upbeat and moving. 

But even though I did that, I still was received politely but almost with a bit of avoidance. 

It just boils down to the fact that we, as a society, have a hard time reconciling an event that seems almost is out of balance with nature.  Children don't die.  They just don't. 


But, alas, my friends, they do.  And we have to help make those people in this awful, lonely, isolating club feel okay and loved.

But we have to take it one step further.  Please.  We must help our children, too.

I know what you're thinking because I did, too, at one time.  I can't tell my child about xyz event (death, divorce for example) because it will shatter them, scare them, on and on.  I know the drill.  I did it, too.  I wanted my boys to think nothing bad would ever happen.  That there was nothing scary out there. 

The only thing is that it's not real life.  Bad things will happen.  While I don't think that making all the details known or giving out a scary impression is the right way to go, I do promote that sharing certain events with your children is not only appropriate but healthy.  Obviously, each child is different so maybe this isn't feasible for all.  But you know what I mean, I hope.

Why?

Because my 8 year old son needs kids his own age.  He's told us that he doesn't want to go to the park because there's no one ever there that he can talk to.  I asked why and he said because when he tells them that his sister passed away, they either run away or ignore what he says.     

Now keep in mind, this is a MATURE 8 year old who attends youth grief counseling bimonthly, lives in a house where Everly is openly and frequently spoken about and understands how others may not grasp the gravity of his situation.  If you know my son, you know he's open and honest.  He's also  super proud of being Everly's brother.  However, he must want to share with these particular children but, unfortunately, these children weren't prepared to respond. 

Understandably so. 

It's not in our parenting manual for "how to teach your child what to say when his/her friend's sister passes away."  But it doesn't mean we couldn't equip our child with a sentence or two for tough, general situations.  And even more important, how to be empathetic and show compassion.  That running away or ignoring his statement is very hurtful and saying almost anything (I'm sorry is an easy response) is better than nothing.

That brings me back to my training class.

At the end of class, one brave lady approached me and engaged me in conversation about what I had shared and our dogs.  I'm so thankful she did! 

As we've counseled Kendan on these experiences, which I might add have caused him to avoid one park in particular because it's happened more than once, we've shared with him that so many people, including adults, just do not know how to handle this type of news.  That most parents haven't taught their children how to respond and handle difficult situations when confronted.  Ourselves included.

Until now.

It's happened to me a number of times now since Everly's passing; it also happened to my mom, Jimmy, Garren and my dad.  We've all had similar scenarios to Kendan's. 

Folks might see us out but are fearful of approaching, engaging or just mentioning Everly or anything regarding our grief in general.  

Don't worry.  We understand.  We get it.  I know this awkwardness exists. 

But it doesn't have to and we want to help. 

I've had three braves souls tell me personally that they haven't reached out to me sooner because they didn't know what to say.  How I appreciate the honesty! 

So, here we go.  Below are 5 statements that might help:

1.  I'm sorry.  Short, simple and truthful.  Just knowing you acknowledge and that you care goes, oh, so far!

2.  How is your day today?  Each day for us is different so this question allows us to answer better than just how are you...but, honestly, that question is okay, too. 

3.  My favorite picture of Everly is _______.  Something that never gets old for us. 

4.  What are your plans to continue to keep Everly's memory alive?  This gives us a chance to share something positive and something that gives us joy.

5.  What do you think Everly is doing right now?   This type of statement does make us smile.  We love to think about her being tube-free, happy and not confined by earthly constraints.

Please know that the only question that hurts is the one that is never asked. 

I have an article here that we think is well-written and offers helpful advice.  If you aren't sure how to approach a situation like ours, how to help, what to say...this is a great resource. 

My prayer is that this post will help.  Please know that we try to meet you with a smile and are ready to connect and visit.  Don't worry about making us sad, or that we will cry the minute you mention her name. 

We may cry if you don't.

Team Everly

I am so excited to share with you that we have Team Everly shirts available now!  I know some of you already know but there's a few who may not have seen on Facebook. 

For months prior to Everly’s untimely passing, there was much thought about having “Team Everly” shirts made to spread the word about this amazing little girl. Her story should be told, shared and spread so that others can learn and gather inspiration. With that resolve in mind, her family began the process of commissioning a graphic designer to create a shirt for “Team Everly.” One of the underlying themes that were shared from all who came to know Everly was that she loved as she was loved.

So, with that principal in mind, the idea for a heart was the obvious choice. Her family believes it’s the perfect design to honor and promote Everly’s message of love and living…receiving a diagnosis like hers doesn’t mean that her life is any less valuable or that she is any less worthy of love and compassion. We hope that you will join “Team Everly” and spread love, too! 

By the way, these shirts are available in a dozen colors and are made of the softest t-shirt material around...sure to become your go-to choice quickly!!  Onesies and child sizes as well as adult plus sizes available, too!  Hurry as deadline is Mar. 31!

Thank you for all the orders that have placed already! We are so excited that so many people love Everly enough to wear her shirt!  All proceeds will go to future Everly's Angels projects!

Please visit lovingeverly.etsy.com to place your order!  If you are a local Everly friend, please email me.  Thank you!! 

What's Next?

Today marks seven weeks since Everly went to Heaven. 

No, today isn't any easier than it was before but we've learned to cope better. 

Everly at 4 months old.

Right away we knew that keeping busy would be beneficial for us.  Necessary even.  And busy we've been!  So much so that I'm having to carve out this time to write much like I did when I would hold Everly in my lap and write in previous posts.
So, here I sit trying to encapsulate our life for the past few weeks since Everly's Celebration of Life February 20 and the only comparison I have is that it's like a roller coaster.  It really has been. 

We've had a touring-like schedule during the day, with Jimmy working long hours and me with the boys, school and catching up, but each night ends the same for Jimmy and myself:  tears of sorrow and hearts hurting an unspeakable, unimaginable pain that is our now constant companion.  

Please understand that I share this not for sympathy but because I know it's hidden well. I know  we have disguised it. 

It's there.  All.  The.  Time.


Love in daddy's arms

Know this when we are out.  When we are working in the yard.  When you run into us at Publix.  When you see us at the gym.  When we are at church.  Yes, even when we are laughing.

During the day, we are consumed by work, activities, functions, workouts, school and just the normal humdrum of our daily lives.   

But when the sun goes down and the children are all nestled in their beds, visions of sugarplums, unfortunately, are not what's dancing in our heads.

Simply put:  we miss our daughter.  We miss holding her.  We yearn to hear her, smell her, to kiss her, to see her smile.  It is still to us, 7 weeks later, unfathomable that we will not have that again while on this earth. 

It is every parent's worst nightmare.  To lose a child. 

But here we are living it.  Having to go on and move forward.  Having to figure out how to live when you have a hole that can not under any circumstance be filled. 

How does one do that?

That is what we've been trying to figure out for the past 50 days, 7 weekends, 1176 hours and 70,560 minutes.  

But, just like a modern day fairy tale, this story does have a happy ending. 

We have to make it so.  We are responsible from here on out with how we choose to live.  We have free will for how we handle our sadness.  We make decisions daily to live with intention in our grief or to let it get the best of us. 

Everly would want us to be happy.  To make others happy.  To encourage active living. 

 We desire to take our love for Everly and to love others.  We long to share how she lived life to the fullest and help others do the same.  Diagnosis, limitations, predicaments do not have to be barriers.  We hope to share these messages. 

So with that Everly's Angels was born.

Everly's Angels is still in its infancy with planning, goals and how it will impact others.  However, our heart is and will remain to share love with all and to help others live life well. 

We do not know right now where it will lead but we have taken the first few baby steps...

Everly spent much time in the PICU as well as some time in the NICU at birth.  I was fortunate that I could spend every night there while Jimmy or my parents were with the boys.  However, not all babies and children were able to have a caregiver remain in the hospital with them.  Some parents both work full-time, some have other children to care for at home and still others just live too far away to make it a feasible option to commute daily.  As unbelievable as it was for me to accept, there are other situations where one or both parents were not allowed to visit the child in PICU. 

After spending time contemplating the experience we had in the PICU even though it was a "hospital" stay, we realized that two things made it so...the nursing staff (y'all already know how we feel about our friends there) and how we chose to spend our time.  We chose to make the most of each day we had with Everly, including those hospital ones. 

Our heart has been touched that one of the ways we would like to help is with our time.  God wants us to give of our time, talents and treasures. 

And so we shall.

I began the process last week of becoming a Pet Therapy volunteer with Ala, our 5 year old malti-tzu, at St. Joseph's Children's Hospital.  Some of you may know that Ala has been making therapy visits to nursing homes and in elementary schools for the past 5 years now.  So, we are thrilled that we will be able to bless those children in the PICU with what might be there only non-medical visit of the day.

The babies in the NICU sometimes aren't able to have a caregiver stay with them 24/7 for the same reasons as those in the PICU.  We would like to fill in some of the gaps.  So, my parents, myself and Jimmy have a heart to become "cuddlers" there...feeding, changing diapers and providing another set of arms to soothe a crying or fussy baby.  Right now, they have no openings for this volunteer position but the application is in :-)  Prayers that a spot opens up when God deems it the right time.

Our almost 16 year old son also was touched by his sister and has a heart for special needs children.  He volunteered this past weekend at a local church's respite care day for parents.  He enjoyed it so much that he has decided to continue to go back. 

Jimmy and I also were asked to participate in a NICU Parent Support Group to assist other parents.  Some of these parents, like us, will be entering this new world of machines, tubes and special needs like we did.  Some just need to know that living outside the NICU is possible.  And others just need someone to talk with who understands.  We are so excited about this new project! 

These are just three examples of ways we are beginning our new "next."  Our heads are buzzing with ideas for the future of Everly's Angels and our hearts soaring!  We now have an open Etsy store with Team Everly t-shirts, sweet peas and even specially designed bookmarks.  All proceeds will go into future plans for Everly's Angels. 

We do not know where this new path will lead us, nor who will be touched by it but we do know that the way Everly touched us is how we would like to impact others.  If you have a heart to get involved or just would like to help us brainstorm with us, we would love to hear from you!  I know many of you are much more experienced than we are and we need YOU. 

Thank you, family, friends and complete strangers, for walking alongside us on this walk.  Thank you for taking the time to get this far down in the page, too.  We appreciate every single thought, prayer, call, message or kind gesture toward our family and on behalf of our family. 

With God's love and with your support, we CAN continue and not only continue but to share Everly and her message with ALL!

Matthew 5:16  In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven.

One Day at a Time

It's been just over 5 weeks since Everly left this earth.

Oddly now is harder than the first few weeks.  There was a switch that occurred after her Celebration of Life on February 20th.  Not sure why or what even that it was, maybe it was the reality of Everly's absence, maybe it was seeing the urn and knowing, maybe it was just saying our final goodbyes, but whatever "it" was has made the time since hard.  Grueling.  Punishing. 



6  months

As we make feeble attempts to put one foot in front of the other, I recall reading recently that some say one experiences a numbness of sorts immediately following a loss.  However, others state that it is God who actually places a supernatural hedge of protection around in those early days.

I'm in that camp.

I am not convinced one can function, think, or possibly even breathe without that covering from our Father above.  When you lose a child, the world doesn't seem to make sense.   To know their life was cut short, the loss of experiences, memories and moments with them...it's nearly impossible to see past that.  It seems such a gift from Him to surround you with some numbness or covering to allow you to wake up each day and face the world. 

Now a few weeks out from the shock of it all, our emotions and thoughts are changing.  That hedge of protection?  It's there but now there's a few carved out walk-throughs meant to help us move forward.  Grief isn't stationary and so we must move in some direction. 

That move is hard.  Plain hard.

I am finding that simple tasks are no longer simple.  I have become well-skilled at paper shuffling...one side of my desk to the other, never really making it to the intended destination.  My beloved to do lists continue to get longer while the check marks seem to missing.  Deadlines, due dates seem unimportant and even when I force myself to pay attention to them, there seems to be some invisible barrier that prevents my focus and attention.   

Late in the evenings, I can sit down at the desk to attend to all the matters that need "attending" and after hours later I've made no more progress than when I first sat.  It's as if my mind checks out, is on vacation or just can't snap it together.  Not sure exactly what it is and pray that it won't last long.

The boys understand our tears, our quiet moments and are comfortable talking about how they miss Everly.  They respond well to seeing her pictures and videos and are happy to participate in talks about her.  They are responding well to their grief counseling for kids.  Their discussions are private from us so there's no fear of us "finding out" what they talked about.  It's been a good fit for them an for that we are glad. 

Jimmy shares my sadness and weeps when I weep and struggles with this grief as I do.  Both of us talk, along with the boys, talk about how much we miss her.  He also feels comfort from the caregiver group that meets while the boys are in their respective sessions.  My parents are also struggling with the intense sadness we feel by the huge hole Everly's absence has left.  Mom just went back to work and misses that routine she had of coming straight to our house from work to see Everly.  Dad is staying busy and is continuing to focus his time and energy on the boys and errands for us.  They both are experiencing the same bouts of sadness we are as well.

We are in just a state of being right now.

It isn't a place I believe we will stay.  But grieving a child is painful, messy, uncomfortable and out of line with what we "should" be doing.  But there is no avoiding it. 

6 months

Hearing Everly's name, sharing her pictures, planning for the future...those are all things that make our whole family happy.  We love to hear, say and read Everly's name...it reminds us that she did and does exist.  It validates her, our memories of her.  Please do not ever worry that you will make us sad by mentioning her.  We are already sad and there's nothing you can do to make that worse so don't worry.  Instead bring her up, let's talk about her...not mentioning her is what hurts.

Thankful, we are, to have the scriptures to rely on at times like these...when the pain seems to great, the wound too deep.  But in those moments, in that deep grief, God has a way for us to climb out of the pit. 

Jeremiah 29:13   You will seek me and find me when you seek me with all your heart.

We have the promise of something MORE, something BETTER, something GREATER! 

Everly, our Everly, is already there, is already experiencing this.

John 16:33  I have told you these things, so that in me you may have peace.  In this world you will have trouble.  But take heart!  I have overcome the world. 

Just as we chose to spend each of Everly's days on this earth focused on living in the moment, we are making a choice now to not let death rob us of our memories with our Sweet Pea.  We are pushing through the pain, the sadness, the loss the best we can so that we can have happiness and joy again. 

Romans 15:13  May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.    

                       

March is Trisomy Awareness Month

Today kicks off a month of Trisomy Awareness. 

Elizabeth Joy & Everly Marie

Our family will be spending the day with two special Trisomy 18 families.  The Adams and Marquart families both lost their blessings this past year in May and July respectively.  Though our losses bring us together, our memories and shared love for our girls bonds us.  I know we all, including spouses and children, look forward to this opportunity to reflect on a journey that only few have experienced. 



Melanie Rachel

Everly, along with Elizabeth Joy and Melanie Rachel, were born with a rare and life-limiting genetic condition called Trisomy 18.  This condition occurs when there is an extra 18th chromosome present.  At this time, doctors are unsure as to what causes this type of abnormality to occur. 

Though we are not great fans of statistics, they give some general idea of the outcomes for these babies.  More than 50% of babies carried to term will be stillborn.  Less than 10% of babies who do survive will live to their first birthday. 

Everly made it 11 months and 6 days. 

Trisomy 18 can affect just about every part of a baby's body.  Most (90%) have heart defects of some kind.  Physical and mental challenges are characteristic for our sweet children.  It is not uncommon for them to have:  difficulty with oral feeding, kidney problems, physical malformations, spine issues, digestive concerns and many more issues as well. 

However, babies and children with Trisomy conditions are loving, entertaining, communicative and bring so much joy to their families!  They offer SO much to all who know and love them!

So many in the medical establishment leave no hope for our babies.  When we received the Trisomy 18 diagnosis for Everly when she was 5 days old, we were told to just take her home and love on her.  Yes, we did, but we should have been given the other side that it is possible to seek treatments and help, too.  I'm glad we didn't just listen to them but listened to Everly and followed her lead. 

Everly was a light for all of us in our family and to so many who friends and family and even people who didn't know her!  She was amazing and brought so much awareness to Trisomy 18.  She defied so many odds and so many statistics!  She continues to be that light as we think back to all that she did and continues to do even in spirit. 

Here are a few other awesome Trisomy 18 kiddos that I followed along my own journey and are also now chasing butterflies and rainbows with Everly:

Nora Rose

Chase

Araya

Unfortunately there is very little research and funding to help learn more about Trisomy conditions.  

There is no cure for any of the various Trisomy conditions this time.

Please help us this month raise Trisomy Awareness!  Feel free to click here to download a graphic to use for the month!