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

 

 

 

This Thing Called Grief

Five months later, I had the thought that the grief would be less, the pain not as stabbing.  Jimmy and I misguided in our thinking that we would be in a “better” place today. 

How wrong we were…

The tears flow so easily.  Daily. 

I liken our tears to a cup filled to the brim, with the water about to careen over the edge.  Our tears are now forever on the edge.  It takes no effort for them to topple over that thin rim.  Once over, they continue to flow, to pour. 

The cry of grief is unlike any other cry that exists. 

It’s one so visceral that it comes from the depths of your core.  One that comes out of nowhere.  At any given moment.  Literally creeps in.  One that doesn’t care where you are when it arrives.  The cry of grief is more primal than it is an actual cry.   It’s one that can’t be stopped until its ready. 

A cry that time can’t heal.

Day in and day out, we push.  Jimmy works non-stop throughout the day as if making up for a year’s worth of time.  I keep a full and busy calendar between the boys, the foundation and other commitments. 

But sometimes we push too hard.  We make the outside world think that we are okay.  Give the impression…or say everything is fine.

Guess what?  We are liars. 

Everything is not okay.  We aren’t okay.  Sometimes.  Much of the time.  Our hearts ache from morning to night and through the night. 

We talk about her. 

Every. Single. Day.

For our boys, for others and maybe even some for ourselves, we feign happiness most of the time.  Our heart weighs so heavily in our body that we sometimes “joke” that we are surprised we can move. 

 

The grief is stifling. 

The grief is debilitating. 

The grief is life changing.

Nothing in life compares to this grief.  Jimmy knows firsthand.  He lost his dad at a young age and has now lost his daughter.  He has shared with me that for him there is not a comparison.  They are both incredibly devastating but also different.  Losing his dad changed his childhood, he shared, but losing Everly has changed him.

Our hearts ache with this desire to hold her again, to touch her, to hear her squealy sounds, to feed her, to change her NG tube, to squeeze her, to smell her.  The thoughts of never having this with her again comes on like a runaway train…with vengeance and can’t be stopped.  It causes devastation when it hits and is completely unexpected.   

Some days we don’t have the strength to push through.  Some days we stay within the safety of our home.  Some days we rely on each other here at the house…our little family.  We are thankful for my dad who comes over three days a week because he goes out into the big world for us a lot.  He thrives on that, though I don’t doubt there are times when it’s hard for him, too.   I’m happiest when I’m in the “safety” of my home and having dad do some of the errands, drop offs, pick-ups, etc. has been a huge blessing.  It allows us to stay protected in our cocoon of the house.

No joke…the outside world is harsh. 

We pretty much stayed in for the first month or so for this reason but I’m finding that Jimmy and I still prefer our four walls to out “there.”  I know it’s the same for my mom, too.  It’s so incredibly difficult for each of us to socialize in the midst of such deep anguish.  We find those “windows” of time when we can and we try to take full advantage of those moments because they are so every fleeting.  For the benefit of the boys and our own well-being, we push, moving forward slowly. 

We had been told early on that grief can get harder as the months…year…years…progress.  I remember we all jokingly said we didn’t think that could be the case, maybe it was just them. 

Ummmm…no.  Unfortunately, they were spot on.

The pain today is riddled with more agony and sorrow than it ever was back in February, March, April. 

Why?  I wish I knew the straight answer but I can only surmise that it goes back to the “bubble” I wrote about early on after Everly went to Heaven.  Call it shock, a God-given hedge of protection…whatever it was, it allowed us to function…actually get up out of bed each day and move from room to room, eat, have conversations.  But now that coverage is gone.  We have raw, open wounds.

Wounds that won’t heal. 

Band-aids, like good days, mask the wound beneath the fabric and later mask the scar behind. 

From a personal standpoint and speaking for myself alone, I thoughtfully post the good on Everly’s Facebook page…our progress, our family successes after losing her.  But I also try to be bitterly honest, too, and share our struggles.  If I am nothing else, I’m authentic and real…probably to a fault sometimes. And you know what?  I don’t care.  I’d rather shoot straight on good days AND bad ones. 

We are ALL having a tough time right now.  ALL of us.  The boys in their own way.  My dad in his and my mom in hers.  And Jimmy and I in ours.  Even, Ala has shown us moments of mourning. 

Our lives are forever changed.  I know that God will turn “this” into good.  How?  Not a clue since all we can see right now is the blur through the pain.  I just don’t doubt that He will. 

Our hearts are like something broken into so many different pieces that no matter how skilled one is at repairs, the item…like our hearts…can never be put back together.  While we have faith in our forever future, our hope for something better, we also have real pains, real hurts. 

We are hurting. 

It’s real, it’s a tangible kind of hurt.

Our cry deafening.   

Our grief palpable.   

 

Still.

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.