WHY WE EXIST

This story is one of hope, love and joy. Everly Marie Hopkins was born February 20, 2014; the only princess in a family of two older brothers. It was 5 days after her birth that the family learned she had a rare, life-limiting genetic condition called Trisomy 18. For 11 months and 6 glorious days, the family loved little Everly, fulfilling an ever-expanding bucket list of experiences with her. The time was not without its challenges but the joy of having her with them another day overcame them all.

Just 3 weeks short of her 1st birthday, their little princess met Jesus. No "preparations" can prepare you for the loss of a child. None. But after the unimaginable loss of Everly, the lessons they learned, the love they shared, the joy she brought and the hope they have in reuniting with her one day, Everly's Angels Foundation was born. Out of the ashes beauty will rise.

The lyrics of the song "Beauty Will Rise" by Steven Curtis Chapman after his daughter passed away speak our heart for the foundation and for the love and hope we still have.

It was the day the world went wrong
I screamed til my voice was gone
And watched through the tears as everything
Came crashing down

Slowly panic turns to pain
As we awake to what remains
And sift through the ashes
That are left behind

But buried deep beneath
All our broken dreams we have this hope

Out of these ashes beauty will rise
And we will dance among the ruins
We will see it with our own eyes
Out of these ashes beauty will rise
For we know joy is coming in the morning
In the morning, beauty will rise

So take another breath for now
And let the tears come washing down
And if you can’t believe, I will believe for you

Cause I have seen the signs of spring
Just watch and see

Out of these ashes beauty will rise
And we will dance among the ruins
We will see it with our own eyes
Out of these ashes beauty will rise
For we know joy is coming in the morning
In the morning

I can hear it in the distance
And it’s not too far away
It’s the music and the laughter
Of a wedding and a feast
I can almost feel the hand of God
Reaching for my face to wipe the tears away
You say it’s time to make everything new
Make it all new

This is our hope
This is a promise
This is our hope
This is a promise

It will take our breath away
To see the beauty that’s been made
Out of the ashes, out of the ashes

Out of the ashes beauty will rise.

*Originally published for the Love for Everly blog, this three part entry details the origination of Everly’s Angels Foundation. You are invited to sit back, grab a cup of coffee and become acquainted with the unabridged version of the heart and soul that has become the foundation.

Jeremiah 1:5

"Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations."

PART 1

It was soon after Everly’s Celebration of Life in February that the thought of doing something in her memory was placed on my heart. I didn’t want Everly’s legacy to end with her last breath and I was sure my family didn’t either. Not knowing the purpose or the name even, a seed was planted that quickly took root.

Not too long after, I shared with my friend Jen about the ideas that had been formulating. As is normal for someone grieving, my thoughts were scattered, disjointed. But several common themes kept recurring as I continued to ponder the possibilities. I knew that we all wanted her spirit to be kept alive, knew that the culmination of all our experiences with her needed to mean something, knew we wanted to make life better for others walking the same tortuous path.

After hearing my thoughts, as jumbled as they were at the time, Jen suggested the name Everly’s Angels. I knew instantly that was IT! It fit. It worked. It said everything I needed it to say.

There indeed needed to be a team of angels born out of the ashes of our precious baby girl who would continue to teach people about Trisomy 18, who would help our fellow special needs families, who would minister to those parents who receive lethal diagnoses for their babies and to provide comfort for parents who say goodbye to their child.

And in that moment Everly’s Angels Foundation was born.

From there, it was time to make it happen.

Through a series of God-orchestrated events, we met the right people at the right time who helped us get from point A to point B.

And, I’m happy to share with you that…

Everly’s Angels Foundation, Inc. is an official 501 (c) (3) federally registered non-profit public. We were a registered non-profit as of May 8, 2015, three and a half months after she passed.

So thrilled to see this in PRINT and know what Everly's Angels will do in the future to make lives of others better.

This was the FINAL step and am so excited that it's a REALITY!

I think Everly would be proud.

I love how God’s hand has been in our work from the beginning, from introducing me to the people I needed to meet to helping “see” what Everly’s legacy would be on this earth.

There have been days, and I know there will be more to come, when it’s difficult to see the forest through the trees.

Not with the foundation, but with grief…missing Everly, trying to move forward and all that comes when you no longer have your child.

Everly’s Angels Foundation has given me a way to redirect our my continued pain, my love for my daughter and a way to use her life touch others.

This is my way of spending time with her.

It’s focused time remembering her life, what we learned from it and just magnifying the very essence of who she was and is.

Our Everly.

She will always exist to us but now she can continue to live on through those who fulfill her mission here on earth.

Through Everly’s Angels.

There’s a quote on the back of our Team Everly’s shirts and it reads:

Loved you yesterday, love you still

Always have, always will.

I love it more now than even when I first saw it on her shirt because I see…I know…our work with the foundation is a tangible extension of the deep love I have for her. The deep love we all have for her.

For what her very life meant.

For the legacy Everly leaves.

For the missions Everly’s Angels will fulfill.

PART 2

Taking cues from our life with Sweet Pea, our heart for Everly’s Angels’ purpose is to use our family’s experience, our life together to ease the challenges of others who have a similar path to follow: as a special needs family and, more specifically, those parents who receive a diagnosis their baby has a life-limiting condition.

We have been raising two typically developing boys, one 8 and one 16, so the idea of “special needs” really didn’t impact us any. We were on the outside.

Until February 20, 2014. Then we get a true insider’s view.

What a sweet and sour journey that was and, of course, one we wish we were still on today. But God has other plans for our family.

I don’t think it is sufficiently possible for us with typical children to fully appreciate the challenges that those families go through.

Really there isn’t. But to give some perspective, consider the following:

There are numerous and an overabundance of doctor’s appointments, waiting in a germy waiting room for an over-booked doctor.
A house full of medical equipment that we neither want as home décor but at the same time value as it saves our children’s lives.

The difficulty in going anywhere with all your “stuff.”

The constant worry that this next bug or illness will land your child in the hospital.

Our PICU

Parents who earn honorary medical degrees in record time.
Adding the constant use of acronyms (NG, G-tube, PICC to your daily speech so much so that it seems to lay people (aka non-special needs parents) that you are talking in code.
Many, many, many FUN conversations and phone calls with and to insurance and DME companies. {insert sarcasm here}
The pain of watching your child have procedure after procedure.
“Loss” of parent in a sense for the siblings in the family.

Homeschooling while in the hospital via FaceTime.

Not being able to have any “down” time because without a clone of yourself, the complexities of your child are so much so that you aren’t able to leave him/her with just anyone.

You get the picture, I’m sure. There are SO many more ways I know I honestly had no idea until I lived it myself. But these families need our support, our encouragement and through Everly’s Angels, we purpose to do that, even if it’s a small way.

The other side for us, aside from the special needs aspect, was knowing our daughter’s genetic condition was life-limiting. That is a mighty emotional road. I mean really…to know your newborn baby statistically would not live to see her first birthday? And in some cases of babies who are diagnosed, not only with Trisomy 18, but with a variety of other medical complexities making sustaining life all but impossible through the end of the pregnancy or very shortly after birth.

What then?

Honestly, I think society has it ALL wrong. Superheroes aren’t costumed and have superpowers. Superheroes are parents choose to give all of themselves knowing what is to come, knowing the pain that will ensue and doing it anyway. Those are true superheroes.

Here’s a glimpse into that world:

Parents learn more about the medical world than one would want outside of being a medical professional.
The anxiety that is always present worrying about germs and life-threatening illnesses.

The constant fear that the doctors weren’t telling you the “whole” story or weren’t in your child’s corner when being advised.
Most are on hospice or a palliative care of some sort and ALL that comes with that very difficult and emotional idea.
The complex stress and prolonged grief of not knowing when your child’s last breath will be.

Too much CO2 in her body. Can't get rid of it, even with BiPap. Told it might be the end (this was our 5th time hearing this in her life up to this point and that creates it's own kind of living hell.)

Trying to parent a whole lifetime for this child, soaking in every moment for fear of the time when there will be no more.

Feeling torn constantly between the time you need to give the siblings and the abundance of time you want and need to give this special baby.
Watching your child grapple through their varying medical complexities, not knowing the right path or answer to issues.

Watching your child day in and day knowing that one day in the not so distant future, you will have to say goodbye.

Ultimately having to experience child loss,

the greatest of all losses that exists.

There are no words really to describe this part of the journey.

************************************************************

The list goes on but it’s enough to know that these superhero parents deserve and need our support. So, through the work of Everly’s Angels, we hope to be a beacon of light for these families who endure so much.

We also hope that in both cases the foundation can uplift and encourage not only the parents, but also any siblings in the family. It’s a tough job for any adult but for a child, it’s even harder. We pray that we can provide a bit of cheer and happiness to their life as well.

We chose to live very purposefully with Everly when we received her diagnosis, taking full advantage of every second of our 340 days together. I guess you could say we had the “luxury” of knowing ahead of time.

We created a bucket list for Everly and for our family, making memories and living life together. Ever focused on the present, we were intent about our time together every single day. No moment was wasted, no time slipped by unused.

With Everly’s Angels Foundation, we desire to encourage all people to be purposeful with their time, living live with intention and making the most of every day, just as we did with our precious baby girl.

Because of Everly, our eyes and our hearts have been opened to a new world…

challenges and needs of special needs families

the hearts of families who will lose a child

siblings of families in difficult, life-altering situations

a sincere appreciation for the simple moments each day

the value of living life to its fullest and with intention

...and to educate and promote awareness for Trisomy 18, the

condition that changed all of lives forever.

It is my personal hope, desire and mission that

Everly’s Angels Foundation seeks to carry on the

legacy left by my daughter.

Everly Marie Hopkins (2.20.14 – 1.26.15)

PART 3

In parts 1 & 2, I shared with you the birth of the foundation and then the heart of the foundations purpose and mission.

For the third and final part of explaining Everly’s Angels Foundation, I will share our “who” and “how” with you.

Who is a part of Everly’s Angels Foundation and how exactly do we plan to carry out the mission of Everly’s Angels Foundation?

Our volunteer board of directors consists of 6 people, all of whom have a heart and desire to carry on Everly’s legacy.

The perfect place for a board meeting: Sweet Peas Café!

Crystal Hopkins (President)

Kathy Mullins (Vice-president)

Jimmy Hopkins (Treasurer)

Garry Mullins (Secretary)

Jennifer Garner (Lead Creative Design)

Sarah Edgar (Marketing & Media Relations)

Hard at work planning for the Everly's Angels!

I am so thankful for these special people who love Everly and love our mission as much as myself. Their gift of time and talent is so very precious and instrumental to our foundation and to the families we serve.

We are thrilled to be able to continue to share Everly’s NAME, STORY AND SPIRIT through the work of Everly’s Angels Foundation.

If you would like to help Everly's Angels Foundation, we would love for you to check out the Volunteer page.