Sunday, September 18, 2016

What would you do TODAY if you knew you only had a short time left on this earth?

WHO would you want by your side?

What DREAMS would be left unlived?

What REGRETS would you have?

There comes a time for many people when they experience a clarity in life, an awareness in what truly matters.

But, unfortunately, for many it comes too late, brought on by tragedy or life-altering event.

Our sweet Everly 💕 taught our family...and many who knew her...much in her short 11 months on earth. Taught us what was important in life, showed us how to live, reminding us to be present daily. She knew unspeakable joy in the face of adversity, finding happiness in the simple things like watching her brothers play or listening to birds singing. Her ability at such a tender age not to get hung up on the little things but to celebrate the every moment was a gift to us all.

At her Celebration of Life, I shared a poem called The Dash by Linda Ellis. To put it simply, the poem points out that it's not the date of our birth or our earthly death that matters but rather the dash--or rather the life--in between. It's how you live and love and how you spent your dash that counts. And Everly certainly lived her dash to the fullest!

Our family has been on a path since God called Everly home to be more MINDFUL, PRESENT and PURPOSEFUL about our own dashes and how we want them to be spent.  We have been purposeful about days, our time, and to our time with each other.  We've made a conscious effort to choose joy in the face of Everly's 💕 death, to make plans on paper and to live them out, each day striving to be in the moment. 

So, to actively live our DASH, for the past year, we have been planning to live out loud a big part of our dash, collectively.

A quiet, but ever-present dream of ours has been to travel together as a family, visiting our beautiful country and seeing all of its hidden treasures. 

So in June, our family set off on a nearly three month long cross country RV trip.  A whopper of a trip and a dream come true.  In order to do this, and to purposefully live out our dash, we each had to sacrifice (not too hard considering the payoff but it did require a substantial amount of work, dedication and commitment by each of us) to make it happen. The boys each gave up their summer camps, activities and time with friends. My mom retired at the end of May and my dad gave up his thrice weekly golf outings.  I (along with the Angel Team) planned ahead for foundation needs like supplying Everly After Memory Boxes and communications to our Touching Hearts, Healing Souls families for the summer months.  Jimmy squirreled away his year's worth of leave and gave the go ahead for us to do a bit more than he would be able to stay for.  Jimmy and I both saved, budgeted, planned, learned (oh, the learning!) tons and laid out the groundwork for this adventure. 

There's NO time like the PRESENT and we aren't guaranteed tomorrow.

Our kids grow up sooner than we'd like.

Our health fails as we age.

We likely will never have money or enough time.

But time passes whether we like it or not,

our kids leave home,

our knees give out,

bills come and time can be short...

so on the heels of lessons in life taught by our little Everly 💕...


Before it's too late.

Before there are regrets.

What will you do today to begin to live YOUR dash?

So, it’s been a hot minute since I’ve been on here. 
Let’s catch up, shall we?

It’s kind of hard to put into words what happens with grief, specifically losing your child.  There are supposed to be these stages of grief that you go through.  I’m guessing you hit this final one and like a turn of a switch, you’re better.  Ummmm, yeah, no.  I would bet money that anyone you ask would say it doesn’t work this way and, in all honesty, I don’t even know if that’s the intention anyway. 

So many, many things are affected when you have debilitating grief, the kind that can knock you to your knees in the blink of an eye.  Here’s a few recent experiences with this…

Recently I was in an airport and as I went through security, the local jars of jams I brought were confiscated.  Please know that I don’t expect not one person to understand this and the emotions that it dredged up.   However, as they took my jars away, a mournfulness came over me.  No, it wasn’t about the actual jam but rather the feeling of something happening that I couldn’t control, a loss of sorts.  Yes, over jam.  But, again it wasn’t about the dang jam.  Was blessed to be in the company of a dear fellow loss mama who was with me on this trip, I was able to share through tears and know that she got it and could laugh with me about it later. 

Walking into a store or public place and hearing a baby crying sends me running immediately out the door.  And if the parent doesn’t attend to the cry causes me great angst and anxiety. 

And then there’s hopping onto social media.  Any day.  On birthdays.  On special days.  On holidays.  Sometimes, seeing posts are so incredibly painful that seeing them can send me into a downward spiral or, at the least, can shake my solid footing.  Easter dresses.  Daddy/daughter dance pictures.  Birthday parties.  Everyday photos of siblings, milestones, experiences.  While I am genuinely happy for those friends, I must tread carefully and use social media wisely according to how strong I’m feeling on any given day.  Sometimes, my shattered mama heart can’t take it.

And sometimes the cycle, stage or whatever you call it of grief comes so out of the blue and from nothing that it catches you completely off guard.  There have been times that I am riding my bike, walking in my favorite place or sitting doing school with Kendan and thoughts of Everly bubble up and come out as tears, heavy ones that cloud my vision, a painful lump forms in my throat and the sorrow just is.  No reason.  No specific thing triggering it. 

All of these examples to say, that if there’s any doubt that grief exists in its full ‘glory’ a year and 3 months later, yeah, it does.  I’ve been told that grief doesn’t go away but that it changes.  I can only tell you that it hurts as bad today as it did a year ago.  The first 3 months of grief you are 100% numb and much of that period you are floating around in some kind of bubble.  I’d pay everything I have to go back in that bubble.  Experiencing, I mean, really experiencing grief in its intensity is so uncomfortable, so scary that many of us do everything we can to avoid it.  We gloss it over, walk by it, travel around it.  Unfortunately, you can’t go around grief.  You have to go through it.

I have for many, many months avoided my grief, even though I’m grieving.  Working non-stop on creating and bringing to life Everly’s Angels Foundation soon after her passing, planning projects and involvements for the foundation, dozens of meetings with health professionals and hospitals, pet therapy with Ala, keeping up social media posts and responses, and then ultimately planning our Volksmarch last month on top of parenting and homeschooling.  It wasn’t until recently that I stumbled upon an article that pointed out in neon lights what I had been doing.  While I love all that I have been doing, it has been a way for me to avoid the rawness of the pain and the heartache of having lost my daughter, my Everly.

Plain and simple I have been avoiding it.  Sure, I have moments when the memories sneak in.  But, for the most part, I am unable to look at videos now of Everly and it takes everything out of me to go thumbing through her pictures.  I avoid looking into her eyes, avoid spending too long looking at her, avoid the intensity of the pain that will, no doubt, arise.  Guys, this pain is unlike any other you can experience.  To watch your child die.  To have those memories.  To know you will never have more photos. More experiences.  More kisses.  More milestones.  More time.  It’s all too much.  It just is.  Whether it’s right or wrong for me to try to avoid it, I don’t know and, frankly, I don’t care.  I’m trying to make it to tomorrow.  My fellow loss mamas get it.  One foot in front of the other.  Day by day. 

That brings me back to Love for Everly Facebook page, my own blog, Everly’s Angels Foundation Facebook page and our IG account.  Once we finally made it to our March 5 Volksmarch, then several follow up meetings with hospitals, I hit a wall and have been slowly trying to pick myself up ever since.  But, I haven’t been in a hurry because I have been trying to do the hard work of walking through my grief, sadness and despair, head on.  And during that time, I have felt the need to remove myself, take a break from social media (only occasionally scrolling), step back from all the “stuff” I had been doing the last year and 3 months and truly experience my grief.  It has not been easy and really has not been fun.  It sucks honestly.  However, it has been necessary to just stop for a while.  To feel, even when it hurts.

I was blessed about a month ago to meet up with my dear friend and fellow loss mama, Anissa, for a three day sabbatical of sorts.  We had never met face to face but have had an ongoing relationship from the time Everly was just born and she was still pregnant with her princess.  We walked with each other through a year with both our Everly and Elisabeth, the joy and elation, the scary moments and finally the untimely deaths of both our girls, three months apart.  It’s been now a year for both of us and having the time to be together and many unfettered conversations was the single best therapy one could ask for.  We spent our time talking, pondering, reflecting, laughing (chicken anyone??), bike riding, ranting, kayaking and, yes, much crying.  Surrounded by the thickest forest of green trees you can imagine and azaleas in bloom, with tranquility and quiet on all sides and a view of the lake and with the BEST weather you could ask for, God laid it out for us on a silver platter for those three days.  Being able to just be open for that whole time with no interruptions and being allowed to openly grieve and know that the pain is equally being felt is a freeing experience and one that I will forever be grateful that we had. 

Quaint chapel on property

It’s difficult to explain really why putting yourself out there on social media, or blogging or even still going into social situations can be so hard.  Maybe it’s because it’s so personal and you open yourself up.  Maybe it’s because you know that not everyone will ‘get’ you, or at least the new you.  Maybe it’s because it will bring up painful memories.  Maybe it’s based on how strong…or not…you feel on a given day.  Maybe it’s because of 2000 other reasons.  Whatever it is, sometimes it’s just hard to do. 

So to those of you who have hung on for the ride over this past year, thank you for your patience, love and grace…through periods of ranting, oversharing, despair, joy, and now quiet.  This journey called grief is certainly unpredictable and one I’m continuing to work through one day at a time.   

Everly's Angels Volksmarch Follow Up

Many thanks to everyone who supported Everly's Angels Foundation for our Volksmarch on March 5th. 

It was a wonderful success and raised $10,000 to go towards the purchase of Cuddle Cots, both our Everly After Memory Box Program and Healing Hearts, Healing Souls Program and our mission to educate the public on Trisomy 18.  We were blessed with giving volunteers who were instrumental in the success of the day and a compassionate group of sponsors dedicated to our mission.  To view photos from the event, click here

For anyone who is not on our newsletter mailing list, we have updates in our spring newsletter just recently published.  To stay in the know, too, sign up
here.  This is the best way to receive our quarterly newsletters, special announcements and any updates related to Everly's Angels Foundation.  We would love to have you join us in this journey!

We were blessed to have several news pieces shared about the Foundation and our mission and you can find them here, here and here.  Bay News 9 even surprised us by showing up to do a special assignment report on the Volksmarch.