Everly's Angels Foundation, Inc. Part 2

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:

o  There are numerous and an overabundance of doctor’s appointments, waiting in a germy waiting room for an over-booked doctor. 

o  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.
 

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

 

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

Our PICU

 

 

 

o  Parents who earn honorary medical degrees in record time.

o  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.

o  Many, many, many FUN conversations and phone calls with and to insurance and DME companies.  {insert sarcasm here}

o  “Loss” of parent in a sense for the siblings in the family.

o  The pain of watching your child have procedure after procedure.

o  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:

o  Parents learn more about the medical world than one would want outside of being a medical professional.

o  The anxiety that is always present worrying about germs and life-threatening illnesses.

 

o  The constant fear that the doctors weren’t telling you the “whole” story or weren’t in your child’s corner when being advised.

o  Most are on hospice or a palliative care of some sort and ALL that comes with that very difficult and emotional idea.

o  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.)
 

o  Trying to parent a whole lifetime for this child, soaking in every

         moment for fear of the time when there will be no more.

o  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.

o  Watching your child grapple through their varying medical complexities, not knowing the right path or answer to issues.

 

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

 

o  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.

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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.

 

                          Foundation Purpose

Everly’s Angels

The specific purpose for which the corporation is formed is to promote education, provide assistance and advance public awareness about Trisomy 18, a rare and life-limiting genetic condition.

Mission Statement

Everly’s Angels Foundation is a 501 (c) (3) non-profit charity striving to provide encouragement and support to special needs families, parents who receive a devastating prenatal diagnosis and families who have experienced the tragedy that is child loss. It is the foundations desire to encourage others to live with intention and purpose, despite a diagnosis, ailment or circumstance, and to make the most of every day.

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)

 

  

 

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.