One Year

One year.  It's been one year. 

Tomorrow marks the one year mark of Everly's passing, an experience never to be relived, yet never to be forgotten. 

I've been in a period of reflection as of late and have been able to take a step back and cogitate on the past year.  I've not only learned about grief during this time but have seen humanity through a lens as never before.  Looked inside myself with a critical eye to see the good and the bad.  Have reevaluated priorities and refocused attention.  This season has brought about the most significant amount of changes or at least observations that I have experienced so far in my almost 43 years of living.

It has been both humbling and grueling.

Grief.  This constant companion, the relentless roar of torment that resides just beneath the surface. Ready to rear its ugly head at any given moment. Grief can strike you when you least expect it. It can be suppressed no more.  In the grocery store, the library, in the shower, a movie, a store...there's no rhyme nor reason to when the agony opens up.  It just is there...the way you and I just are.

I've seen this line...sometimes memories sneak out of my eyes and roll down my cheeks...and how absolutely true that is.  Reading at night with my youngest son is a common time that tears just stream down my face.  There's no reminders, no glaring signs from my daughter, but rather, just cherished memories that work their way in and then out as we read.  Silently the tears fall as we continue to read. 

Something I learned during the past year in being physically parted from Everly is that not all tears are the same.  I had always been under the impression that when you cry, you cry and that's it.  But I've now learned that it's so much more complex than that simple idea.  There are moments like I described above that tears stream down when a thought crosses you.  And you may not make one sound as the tears fall.  Other times, tears stream down in the quiet of the night or standing in line watching a mother and her child or in the busyness of cooking dinner.  Then there are yet times you cry in sorrow and sadness for your broken heart.  This cry is much like a child's when they've been hurt or injured. It's loud and present and for all to hear.

But then there's the last cry which really, by definition, isn't a cry at all. 

This cry is a rite of passage of sorts.  A horrible, awful sound that only a parent who's lost a child, an animal who's lost its young, would know.  It's guttural and can only be described as gut-wrenching and from the inner-most depths of a soul.  There is no place deeper.  This cry consumes your body.  It takes control and only when it's done with you can you have it back.  Once you've heard the howl of total anguish, you can never unhear it.

If I am honest, it is the cry I fear the most. 

It happens. It's agonizing.  And it's depleting and consuming. 

But as we all know with loss and grief of any kind, there's no way around it.  We, I, have to just go through it.

Humanity.  Living with and amongst society allows much time for interaction, engagement, relationships, observations, and involvement.  Child loss stripped me of my outer shell, like a nailbed without the nail, raw and tender.  It allows for pain and hurt to enter at will, protection not offered. By in large, humanity tends to lift rather than tear down; support rather than break apart.  But, naively and innocently, some toss massive needlelike darts straight to your irrevocably broken heart.  And without protection, recovering from repeated throws can be debilitating to the point that you pull back.  Way back. 

As I've walked through the year, I have found that I'm now able to identify what I call "safe" people, places, experiences, and the like.  Those labeled safe allow me time time and space needed to learn how to reacclimatize myself within 'normal' society.  Love, support, encouragement is given with each baby step taken and each step towards being a part again.  Humanity is good.  I've experienced the beauty of people as I and my family have walked this road through grief and loss.  The outpouring of love from strangers on social media, the sacrifice of friends and family, the support of those who we just met.  I believe in the good in people and over the past year, I've been able to see it live out over and over again.  For that, I'm eternally grateful and so thankful to be in a position to experience and see that good.

Me.  This has been one of the toughest parts of the past year.  It goes without saying that you experience life-altering changes once you lose a child, a piece of you.  It is arguably every parent's worst nightmare, after all.  So much of 'me' has changed and, many days, I'm not able to recognize or even find the 'old' me.  Quite possibly, she doesn't exist anymore and that's a bit disconcerting, however true it may be. 

While I experience new emotions now that I'm uncomfortable and a variety of seemingly opposite emotions, the overwhelming 'new' self I'm learning about has new qualities and feelings.  Compassion, deep compassion for others and their suffering and their inner thoughts and true feelings, really wanting to get to know others.  Concern and sacrifice are my new companions.  A burning desire to make a change, to do something, no longer able to just sit back and watch.  A new determination to be the good somewhere for someone.

I feel invincible now.  More than that, I know that I am.  I have, with the mercies of God, survived the unthinkable.  There's nothing I can't do, no experience too much, no situation too uncomfortable for me now.  I know that I can survive anything as much as I know that I'm capable of anything now. 


Priorities.  One of the many gifts Everly gave to us and so many others...focusing on priorities in our life.  So many of us have these all out of order and something like a health scare or in my case, losing my daughter, jolts you into refocusing.  While I don't have it perfect all the time, I am worlds away from where I once was and I am grateful.  No longer do I feel out of balance.  No longer do I feel torn and that I am letting something slip away.  That simple gift is life changing but in the best way possible. 

This past year has been exhausting.  It has been eye opening.  It has been renewing.  Nothing will ever change my love for my daughter, just as nothing can diminish the love we shared.  But the take away from this past year, I pray, will help me find my place in this new, vast world I couldn't 'see' before my Everly. 

In the Midst

I've struggled for the past almost 3 months to find the words I need to say.  Honestly, I don't know if I even have them now. 

I've believed in God for as long as I can remember.  I believe that Jesus died for our sins and is our salvation.  I believe the Bible is the divine inspired, God-breathed word of God.   I also believe in Heaven and that we will be united there with God and our loved ones after we die. 

In other words, I'm a Christian, a full-fledged follower of the one and only Living God. 

So, by default, it should mean that my faith will carry me through the loss of my daughter. 

Logically speaking, right?

I wish.  Man, do I wish.

I've always naively thought that faith alone was enough.  Enough to fill in the gaps.  Enough to make things better.  Enough to understand. 

Enough to escape the pit of grief that falls endless into the dark abyss. 

But having a faith in the midst of the depths of my grief does none of the above. 

In fact, it does quite the opposite. 

I have a hole bigger than all the oceans in the world.  Nothing is better.  And I'm more confused than ever now.

When it was first suspected that Everly had Trisomy 18, I thanked God for her healing.  I claimed my inheritance and thanked Him for it before I knew it to be true or not. Time and time again, I prayed.  I took care of unforgiveness in my heart.  I continued to be in the Word.  I not only prayed for myself and Everly but for others and thanked Him for the countless blessings.  I was in a relationship with Him.

Though I had an intact prayer life before being pregnant with Everly, the hope I carried that He would heal her drew me closer to Him.  I spoke to Him so much each day that I felt like He was on speed dial. 

But now she's dead.

So much of what we do as believers is to praise God when things work out, when there's a 'happy ending.'

"God is faithful" when your loved one was miraculously saved in the car accident.  

Routinely, "God is so good" is a common sentiment when a loved one's medical ailments are healed, in remission or remedied. 

But what happens when that's NOT your story?  When YOUR miracle never came?

In recent months, I have spent a great deal of time researching various theologians' take on this question but I have also sought out insight from fellow grieving parents.  When we don't know, we just want answers.  Need to understand.  Crave a way to make sense of the insanity. 

Grieving dad of two sons, Kyle Matthews' recent blog entry "Why would a loving God let my children die?" addresses this and speaks my heart.  With his permission, I have reposted a portion below with the link above to read the post in its entirety. 

"I still believe God is everything I knew He was before. Holy. Just. Merciful. Good. Sovereign. Wise. If you’ve spent any time in church, you may be saying, as I have heard, “But this is an easy answer! When Adam and Eve sinned, sin entered the world, and that is the source of cancer, and sickness, and natural disasters, and all these things we wonder how could happen if God is truly good. Sin and Satan have temporary and partial reign on earth until God casts them away.” This is wonderful logic on how these things can happen, but it doesn’t answer the larger question; why do these things exist at all? Why must we wait on God eliminating them? Why is “no more death, neither sorrow, nor crying, neither shall there be any more pain” (Revelation 21:4) delayed? What justifies this reign of struggle and sin on earth today? Why did Robyn’s and my sons die, along with so many other sons and daughters?

I have no answer. I have felt God’s presence, and know He is real. I have faith He is God, and I rest in this knowledge. I hope in my life I can have a greater understanding of why death and pain continue. I hope I can feel more peace than unrest. When I think on the vastness of who God is, logically I find no other response than worship and adoration, and I am humbled in admitting my hurt, my loss, and a foolish pride often keep me from these responses. I am frustrated how difficult this is for me."

And while I don't know the answer, I know that no one else does either.  Here.

We all sit and wonder, sometimes fists raised in anger, sometimes heads hung in sorrow, but always desiring, needing to know why. 

Why?  Why did He not offer a miracle in our story?

My heart is irrevocably broken.  The loss of a child is a game changer.  It is a cataclysmic loss.

Nine months out from the last moments I had with my sweet girl, I cling to the idea that my hope in salvation and that my faith in God will carry me through. 

The pain is still so visceral that it feels like it is not enough right now. 

Hope and faith are crucial but in the abyss of never holding my child again, never feeling her warm skin, never touching her body, never hearing her laugh and all the other 'nevers' that will make up the rest of our lives...in the midst...it is not enough.

So I will do all I can...continue to hold onto my faith, holding onto the knowledge that one day on the other side of the veil, the answers will be revealed. 

I will continue to be thankful for God's mercies he bestows upon us, the ones that remind us that it is His hand that does carry us through this darkness. 

I will continue to worship Him, some days with a tender heart while other days, I question but knowing that He can handle that. 

I will continue to try to maintain, strengthen and grow my relationship with Him, knowing that relationships...all of them...have ups and downs. 

It hasn't been easy.  It won't be easy. 

But it's all I can do...in the midst. 

Top Ten Ways You Can Help Someone Who Has Lost Someone

Today marks our 7th month without Everly. 

Everly Marie Hopkins
2/2014 - 1/26/15

Wanna know a secret?  It's not gotten any easier.  In fact, it's many times harder today than last month, harder last month than the month before and so on. 

This has to be one of the most surprising aspects of grief for us.  We had NO idea that the grief would worsen as time went by...it seemed that it would be the opposite.

So, let me give you the heads up on that, nope, gets harder.  Harder with each month.  We are only 7 months into this so I can't speak past this point, but I can barely imagine what month 12, 24 and so on will feel like.  I hold fast to my faith that He will continue to see me through since He has from the beginning.  He can handle my anger, my questions.  He understands.

And I don't really care to get to those points honestly.  Unfortunately, time has a way of not stopping, doesn't it? 

Life moves on whether we want it to or not.  That brings me to what has been placed on my heart to share on this 7th angelversary today. 

How can you help someone that is grieving the loss of a child? 

Like myself, others may also mistakenly believe that the grief has gotten easier, manageable even, as the days have passed. 

It simply is not the case.

After having many conversations with others who are in this same journey and encouragement by them to share our collective thoughts, I would like to offer them in hopes that they may help as you reach out in love to someone who is grieving.

Our family has been blessed beyond measure by an amazing support system.  We have been enveloped by love from the very beginning.  Some of what I have shared below is direct result of this outpouring of love.  To be honest, we didn't even know what we needed until we received it.  So, this list is meant as a way to help you help others, from the perspective of one who's been there.  Thank you for being the hands and feet of Christ as you reach out to your brothers and sisters in need. 


1.  Fear others will forget the baby or child:  Because our babies haven't lived a full life, met tons of other people, or been involved in activities, we worry that our babies are more easily forgotten.  Passed over after they've passed away, if you will.  Help us to know that isn't the case.

2.  Give them the gift of time:  Really, there's nothing better.  The gift of time is my love language in general and I would say that for many in this empty abyss, it is theirs, too.  Showering your friend or family member with your time and attention is generous in every sense.  We are busy creatures nowadays and setting aside time to call a friend, mail them a card, go sit beside them or get the kids together is a precious, precious gift.  The best things in life aren't always things.

3.  Listening:  This is a hard one for most of us.  Why?  Because we want to help, offer advice, make the other person feel better.  I have a present for you all!  You're completely off the hook on this one.  There's nothing you can say or do that will make the loss better.  Sure, your actions will help the grieving process but so will your ability to sit still and just listen.  These grieving parents need to just talk, cry, speak without being fear of judgement or well-meaning platitudes.  Yup. I said it.  Those clichés that are supposed to make us feel better actually do the opposite.  The best words you can say today, tomorrow or next week:  I'm sorry.  Or better yet...nothing.  Just sit quietly beside them.

4.  Let them know when something reminds you of their baby:  Oh, my, how this one makes my heart SOAR!  SOAR, I tell you!  I love, love, love getting messages, texts or emails letting me know that something just reminded that person of my baby Everly.  Why?  Well, first it tells me that someone else has my sweet pea on their mind and that it made an impression enough that they took the TIME to let me know.  It's a powerful gesture...more so than you might think.  Whether it's a new Sweet Pea restaurant, a butterfly in an odd spot, or a license plate name, they mean the world to us! Guaranteed, your friend will think so, too!  Give it a shot and see if they don't light up when you do!

5.  Join them.  A sense of community and cohesiveness goes a long way to combat the intense isolation grieving parents feel when their child has died.  The life they once knew and probably was safe for them was taken away instantly.  It's intimidating, frightening and lonely.  If they are doing something in their child's memory like knitting caps for the NICU or collecting supplies for homeless children, reach out and get involved, even if it's just a small part.  Doesn't mean it has to become your life event but just showing your solidarity and support will be so appreciated.  It also tells that bereaved parent that keeping their child's memory is alive is important to you, too.  They will be so thankful to you for the feeling of security, partnership and union that your involvement will give them. 

6.  Grace.  Though it's been 4 months, 9 months, 2 years, please offer grace and understanding to these heroic parents.  They have to live in a world that has moved past their baby's death.  Let that concept soak for a minute.  They are watching a movie with the most horrific scene but yet they have to get up and function like it really never happened to the outside world.  Kind of hard to imagine, right?  So, just remember that this movie scene is a reality and that it's one that has no end.  There are going to be moody moments because anger is a part of grief.  There's going to be cancellations because at the last minute they realize, though they had the best intentions, they can't attend your baby shower.  There are going to be difficult days for them and your grace will go a long way in helping them manage this unimaginable life.

 

7. Blessing them, blesses you.  Service to others is to be done out of a love for another, or in my belief system, out of a love of Christ.  With no expectation or reward.  However, the funny thing about blessing others is the crazy way it in turn blesses you back.  Have you ever given your seat up for an elderly person or rescued an animal who was in need?  Or what about donating to a shelter for Thanksgiving meals or boxes for children at Christmas?  Doesn't it just feel good?  I love how I feel when I leave the hospital after Ala and I do a pet therapy visit.  I feel like we brightened someone's day, left someone a wee bit happier than when we found them.  The same thing can happen when you bless a parent who is grieving, you are blessed in return.  You've given a gift to the person on the face of this planet deserves it the most.  Thank you for that.

8.  Remember hard days.  The calendar is no longer a friend to a bereaved parent.  It now only marks the time since the last time they last held their precious baby or child.  Throw in a bunch of memory-making dates like Thanksgiving, Christmas, birthdays, beginning of school days, and the like and that's a recipe for misery.  It's a fact that grieving parents have to learn to survive in a world that moves forward.  But reach out to them on those difficult days just to let them know you are thinking of them.  That's all it takes.  Really.  One text.  One call.  One email.  Thinking of you today.  As much as they will move on for the sake of other children or family, those days will never again be the same or complete.  They just can't.  Mark your calendar to send them a quick note.

9. Speak their child's name.  Yup.  This one again.  Speaking their child's name is and will always be on the list for ways to help someone who has lost a baby or child.  Wanna know another secret?  Your mentioning their baby's name out of the blue when they seem to be okay and talking about something else will NEVER be the wrong thing to do.  They will be eternally grateful for you bringing up their child.  Here's the inside scoop:  thoughts of their child aren't far from their mind, they just can't be so you bringing it up won't make them sad, but not mentioning it will. 

10.  It's never too late.  If your friend lost their baby a year ago and you haven't reached out because you didn't know what to say, do it now.  It's never too late.  Bereaved parents change a whole heck of a lot after losing a child and grace and forgiveness are given pretty freely if they weren't already.  They will understand. Look, grief is messy, complicated and uncomfortable but you add in the loss of a child and it becomes really messy, really complicated and really uncomfortable.  It is for them, too.  Walk alongside them through this tortuous path.  It's never too late. 

Ye ought to...comfort him, lest perhaps such a one should be swallowed up with overmuch sorrow.   Wherefore I beseech you that ye would confirm your love toward him.  2 Corinthians 2:7-8


If you've made it this far, you're a great friend!  From all the bereaved parents I've been privileged to meet on my own journey, we thank you for reading through our collective thoughts and ideas for how to help.  I would love to hear from you if you have a comment or something you'd like to share. 

As always, for regular updates, pictures and information, click here as I post there often.  This site is my platform for writing my thoughts, feelings, what's going on with us, and just a place to unwind in general.

In honor of Everly's 7 month angelversary, everyone is encouraged to wear a Team Everly, Sweet Pea, Shout Love t-shirts or pink/green colors.  Thanks everyone!

Everly Marie Hopkins
2/20/14 - 1/26/15

Many blessings to all,

Crystal

Top Ten Things I’ve Learned in the Past 6 Months

I have so much to write about, so much to say.  However, in the interest of everyone’s time and sanity, I have narrowed down much of what I’ve learned in the last six months since Everly’s passing down to 10 things. Please know that I am sharing my own experiences alone and that each of us have are on our own grief walk. 

 

This is my journey.

 

10.  It’s okay to leave it as is.

Ever wonder how my house looks like now?  6 months after Everly has lived here.  The same.  Haven’t moved one item.  There are still syringes and chest PT thumpers in the same position as they were when we left in January.  Her last towel and outfit is dried and resting in the bottom of her clothes hamper, wrinkled and lonely.  Her bottles, syringes and medicines are still on her counter in the kitchen; her bouncy seats quietly poised awaiting her weight; her clothes neatly hung side by side in her closet.  Nothing has been moved and that’s okay by us.  For our family, the “not” seeing of it all would be more painful than the fact that they rest unused, yesterday, today and tomorrow. They'll be a time but not yet.  Not today.

 

9.  I want to hide.

The strangest thing has happened…I have a curious need to travel with aid of some childhood fantasy invisibility cloak.  Some days.  With two boys and activities, events, responsibilities, it isn’t practical to stay locked inside, even if that’s what I desperately want.  Many days, it is.  However, summer is busy and that means so are we, to an extent.  I’m fortunate to have my dad who helps thwart the “enemy” on days when I can’t fathom the thought of being in public.  Jimmy also steps in and pinch hits after work many times, too.  I’m told these moments of needing to stay secure in our little alcove of the world will continue to come and go.  Find the hiding places of these souls and meet them there.  Friends, they need you.

 

8.  The world doesn't know what to do with you.

This is one of the most eye opening things I’ve figured out over the past 6 months.  Hadn't ever thought of life from the perspective we are in before now.  Didn't realize how much grief even affects others in the outer circles of our sphere.  It does something strange to people.  To be honest, it freaks people out.  Avoidance, both physical and verbal, allow others to pretend, if only for a moment, that this awful, scary situation didn’t happen, discussing only inconsequential tidbits of the day, moving on as if this black cloud wasn't hanging overhead.  Grief...and the aftermath that follow...is uncomfortable, painful and messy.  The bereaved don't like the effects anymore than the onlookers.  Only, they don't have a choice.  It takes a concerted effort for people to enter this bumpy world and for this we reprieve, we are thankful.  Approach, acknowledge and above all else, love these friends.

 

 

7.   Sorrow comes out of nowhere.  Literally.

More times than I care to count, tears billow over the edges of my already wet-with-tears eyes.  Not precipitated by any particular memory, adorable newborn baby in my direct line of focus, mention of our sweet pea, but rather, just because.  Just because she isn’t any longer.  Sitting in Dairy Queen with my boys a few weeks ago, the tears just quietly fell.  Just because she isn’t any longer.  Love on those who know this fierce sorrow. 

 

 

6.  The roller coaster of emotions is intense.

Walking through grief IS the scariest ride you’ll ever experience.  There is no rhyme or reason to your emotions from one minute to the next.  No guidebook to help you OR your loved ones.  It’s like living with multiple different people who all go by the same name.  I think this is why I personally relate to the movie Inside Out so well…each emotion is so powerful.  One isn’t any more right than another.  But they are all valid.  Sometimes misunderstood, like anger.  The expectation of grief is that someone is sorrowful all the time.  While there is a great deal of sorrow, there is also wistfulness, indifference, hope, sometimes joy and happiness and a lot of anger.  It’s a weird and unsettling mix of a new kind of "family” that disguise themselves as emotion.  Can’t live with them and can’t live without them.  Just love those unconditionally that are on this ride.

 

 

5.  The calendar is now enemy #1.

Dates, milestones, anniversaries strike like a cobra.  No longer are dates circled with eager anticipation, counting down to some joyous occasion.  Now, in the early stages of child loss, the calendar represents very tangibly the lost opportunities we have to parent, to celebrate, to live with our baby.  We see the dates differently now.  The date of their birth, maybe even the date of a diagnosis, date their heart forever stopped beating, date the child was put to rest.  Other dates, like ours now, 6 months since Everly left this earth feels like a knife to the heart.  Love tenderly these people who take attacks from one who cannot even speak and bears no weapon. 

 

4.  Holidays, special times and events are painfully hard.

Who knew that the 4^th of July would rip me apart?  I couldn’t leave the house for three days because of it.  Skipping through sections of the stores still is my MO.  Forget walking by, near or around the baby section of Target or any store for that matter, specifically during holiday times.  I’m bracing myself now for the onslaught of Halloween, Thanksgiving, Christmas “stuff” that will be a barrage of bullets aimed at my heart.  Maybe I’ll just stay home.  Love with zest these people who must exist in a society that doesn’t stop because of their loss. 

 

3. I'm scared because I don't know who I am now.

Every day, the grief chips away at the person I have known for the past 42 years.  I barely recognize myself anymore.  The loss unequivocally redefines not only yourself, but friendships, relationships, priorities, everything about your life is altered.  It is  disconcerting, add in the fact that this reemergence of your new self is a process.  No longer comfortable in my own skin, I feel like a tenant, borrowing real estate until my home is ready to move in for good.  Extend love and grace to the bereaved who not only have lost someone special but have lost their own identity.

 



2.  I'm lost.

Quite simply, I'm lost.  Some days, I don't know if I'm up or down, left or right, in or out.  The ever-present mental fogginess is still a plague that infests our clarity.  Some days, going through the motions is about the best you can do.  The feeling of being lost is only superseded by a realization that I don't know where I'm going. 
 

 

1.   I’m not strong.

Nope, not at all.  It's difficult for me to admit because I like the feeling of being able to handle it all, do it all.  But it just simply is not true.  Many, many days I am in “fake-it-until-you-make-it” mode.  Secretly hoping that a self-fulfilling prophecy will take place, I would surmise.  If I can convince others, then I can convince myself, too, right?  I need people.  I need my friends.  I need help.  I need a hug.  I need a smile.  I need grace. Lots of it.  I need God.  I need honesty.  I need understanding.  I need closeness.  I need to know someone cares about my pain.  I need to know that I matter.  I need to know that she hasn’t been forgotten.  I need to hear Everly’s name.  I need to know that you will walk beside me as I search for what’s next in this big, frightening world now.  I need you to hear me.  I need unconditional love…on good days and on bad. 
I pray that when the time is right for me, I will have the unique insight to bless in this same way.  But, right now, regardless of what I write, say, speak...read between the lines.  I may not ask for help but know that I need it.  Desperately. 

 

 

I have been painfully honest in my writing since I began some 18 months ago now.  I am very blessed to be surrounded by those who are patient, loving, supportive and kind both inside my family unit and in my friendship circle.  I share my list as a way to shed light on the journey I've been on thus far and where I am today.  Please don't let the time stamp of 6 months fool you.  Today is significantly, in every sense of the word, harder, more painful and heart wrenching than in earlier months.  Remember that hedge of protection that allows people to get through the very early days of a death?  Yeah, it's obliterated now.  Gone.  Never to be see again.  Now, we are left with God and the people around us.  While God IS indeed enough, the old adage "it takes a village" couldn't be a truer statement.  I need my village.  Today more than ever. I pray you will take residence with me.

With love and appreciation,

Crystal

 

 

 

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)