Mommy's Eulogy

I’d like to thank you each for taking the time to be here today to honor and celebrate our little girl.  I know family and family aren’t able to be here due to distance so you are watching at home and we thank you for also joining us.  Our family has been immeasurably blessed by your love, support as we each watched Everly grow over the past 11 months 6 days, although the love for her really began much earlier.  My parents, Garry and Kathy Mullins, would also like to extend a sincere thanks to friends and family near and far who have reached out to them and to us over the past year.  This journey, as tough as it was at some points, was made so much easier by having all of you.  I hesitate to mention any names or point out any people for fear in my grief fog that I will most assuredly miss someone.  Please know that your efforts, your gestures, your words, your sacrifices, your love has meant the world to our family.

I’m as worried about reading this as you are about hearing it.  My hope is that we all leave uplifted and encouraged not downtrodden or depressed.  As I prepare to share with you, though, I can’t promise there won’t be tears.  Maybe lots.  I can’t promise I won’t speak of things that will make our hearts hurt.  I can’t guarantee that I won’t stir up feelings of sorrow.  However, I can promise you that you will know my heart and my intense love for my daughter.  I can promise you that you will hear stories of hope and of life.  I can promise you that having known Everly will make you live with intention.

But before I get to all that, I do have a letter I would like to share with Everly.  And, no, I will not be able to get through this without tears.  Sorry, I practiced and it’s just not going to happen.

Dear Everly,
Happy birthday!  I know you are celebrating with your new friends and are experiencing a joy that we can’t even comprehend here on earth.  I feel like there was so much more you and I had to do together.  You were my little girl, my little baby and most days my doll.  There were some things I never got to tell you.  I need to tell you now.

Did you know that my favorite parts of the day were waking you up when you would smile so big to see me and then when it was just you and I alone together at night when I would catch up on school stuff for the boys with you snug in the crook of my arm?

Did you know that one of favorite things to do was to take you to therapy on Wednesdays so I could watch you shine?

Did you know that I loved, loved your baby body?  Your hook pinky, your crooked toe, the way you would arch your right eyebrow when you really studied something or were interested?  Your round belly and skinny legs, perfect for your skinny jeans.

Did you know that you were fearfully and wonderfully made by God who holds you now?

Did you know how truly perfect you were?  God made you absolutely perfect.

Did you know that I secretly loved when you wrangled your NG tube out of your nose?  It showed your fighter instinct and your defiance together.

Did you know how much fun it was for me to plan and decorate your room, banners, parties and even today it was my honor and privilege to make your celebration just right for you?  It was an act of love for you.

Did you know that the only part of Trisomy 18 I loved was that you were like my little snuggly newborn your entire life?  Holding you in my arms never got old.

Did you know that painting your nails and dressing you up was a special bonding you and I shared daily, sometimes multiple times?

Did you know that I would have gone back to the hospital with you every day of your life if that’s what it took to keep you healthy?

Did you know that I would have continued to stand up for what you needed and the kind of care you deserved?

Did you know that Papa was growing his beard out so you could reach up and grab it like you liked to do?

Did you know that Nana put you and the boys before anything else in her life?

Did you know that you had Daddy completely wrapped around your little fingers and probably toes, too?

Did you know that mommy would have done anything and I mean anything  for you?

My sweet little girl, there is a hole now where you were, and I’m so very thankful for every one of the 340 days God blessed us with you.  While we are selfish and wanted you to remain with us, we know in our hearts that you were only to be with us a short time.  We are grateful for our time together and grateful beyond measure for the memories we have of you.  You rest with Jesus and when it’s time, we will each come to see you.  Until then, please continue to send us your love as you have been!

Not long after Everly was diagnosed with Trisomy 18, Jimmy and I decided that we wanted to give her the best life we could for the time she graced this earth.  I know that kind of goes without saying, I think, for all parents.  But we wanted to go a step beyond and actively seek out opportunities for her.  We called it Everly’s Bucket List.  In our home it was common to have a bucket list.  A few years ago we even had the boys write some things down they wanted to experience.  SO, having one for Sweet Pea wouldn’t have been any different.

So, night after night as we sat in our NICU room, surrounded by beeps and alarms, we created what would become an ever changing list.  This list would go on to include experiences, activities and traditions that were a part of our family.  For us, getting her to her home and feeling the sun’s warmth topped the list.  To experience each item off her list was huge for all of us.  It was even more astounding when the list we had written in NICU was complete and then we needed to add more for her list.  From everything we read and had been told, she shouldn’t still be here so our original list was short.  So this very scene repeated itself many times over in the next eleven months.  I’m happy to say that all of you are helping to complete a bucket list item today which was to celebrate her one year birthday.  And that we are.  In the biggest way possible as she celebrates in heaven with all of her new friends.  Whole.

You see on any printed material you see for Everly, or any deceased person for that matter, there is a birth date separated by the date they passed with a small dash in the middle.  It was her dash that brought all of you here.  Well that and her engaging eyes and contagious smile.  I have a poem that I would like to share called The Dash.

Read poem. (HERE)

I think she had a great dash!  Her dash rivals many.  It rivals many whose dashes are bigger, wider and more extensive by the numbers flanking either side of the dash.  She lived during her dash, really lived.

She embraced all the new experiences that she was given.  We kept her busy…a lot!  But she just seemed to enjoy all the craziness that was our life.  While her dash in life contained many outside experiences, some of the most special ones were just normal days with her.  In our house, she literally never had a moment alone…whether it was Kendan who entertained her with his elaborate shows or Garren who would scoop her up every moment he could.  She was a central figure in our home and it was impossible to not go to often…she was like a magnet for us, especially the boys.

Every single day for her was better than the day before.  She had a spirit about her that was authentic and joyful.  Even when all things considered she should be grumpy and fussy, she wasn’t.  She was ready for the next activity, the next thing, the next outfit even when I changed her three times in one day.  She rarely had an off day and when she did there was a significant reason as to why.  But even then it was short-lived and before long, she was back to her perky, smiley and lively self.

She lived large!  I may have started her on the daily dress ups, complete with all her accessories.  But as the weeks turned to months, she herself began to get into the whole girly routine.  Shot after shot, she would strike what we are confident was a pose for the camera.  Some days she made me work for it, while other days she got into “position” right away.  I believe that because we did her little dress up shoots everyday in the same place, she came to know what we were doing when we placed in that spot each morning.  But, like everything else, she embraced this activity.

Her personality was such that while many who came to know her up close and personal loved her, as did complete strangers who stumbled across her social media outlets.  She beckoned you, engaged you.  What a gift she had!  And as a baby to boot.  Despite what obstacles and issues she may have had, she never once allowed any of it to influence her human interaction.  She hadn’t read the manual on being a special needs baby, or having significant cognitive delays because she knew what she was doing.  There is no doubt in looking at her videos, especially my mom’s favorite of Everly not wanting to go to sleep, that little girl knew exactly what she was doing and played it out well.  How could you not love her to pieces when day after day she would have antics like that?  Sweet moments of innocence and sass?

She never had any idea the impact she’s had on people…friends of our family, medical community who worked with her, and strangers who never met her.  What a legacy she has left us all!  She, without a doubt, was given a purpose on this earthly ground and while she has done much, I do not for one second believe that her influence ends today.  But rather, I think we will take what we’ve learned from her today and the past year and apply it to our lives, our interactions and our thought process as a whole.

We have received so many messages, letters, and notes over the past few weeks sharing with us how our tiny little baby who just so happened to have a special extra #18 chromosome in her genetic make up, left an imprint on their lives.  I would keep you here through dark if I shared all of them with you so I will share snippets of a few that our family felt touched them specifically.

Read letters, only the highlighted parts.

What a gift those are to our family!  To know the far reaching impact our little angel made just boggles our minds and leaves us speechless.  She amazed us all…her fight, her determination, her sassiness, everything about her was awe-inspiring really.

Her dash said it all.  It was filled with experiences like going to the mountains, taking a boat ride, checking out the fall colors in GA but also what could be considered mundane tasks having family Christmas photos taken, going for walks, tasting ice cream.  It was never about “what” the activity we selected really was, but rather it was about sharing an experience together, creating memories, to be purposeful about each day of our 11 months and 6 days with Everly.  And I believe that her dash speaks for itself.

My message isn’t to go home today and give your children big hugs and hold them tighter.  But rather, the message I think Everly would want you to take away is that to make the most of those moments you do have.  Live with intention.  Live with purpose.  Life is a special occasion.  Put on your tutu and your headband and go out and live life!  Make your dash count.