Homegoing

 

Oh, the Holidays, this time of year, bring about countless emotions.  These emotions, thoughts and feelings run close to the surface at times, they show the good, the bad and the ugly – at least in me, as a mom.  I can only begin to imagine how my children must carry things; I know their emotions, memories, feelings lie close to the surface as well and I so want to give them space to feel in a healthy way.  One foot in front of the other.  One moment at a time.  As my Dear Mother reminds me, these are the magical years and I have the opportunity and privilege to make it special for my family, for my children – I’m determined to do that, even in my own chaos. 

 

December 4^th would have been Ellie Kate’s 18^th bday, but she is forever seven years old.  In a few days, on December 23^rd, we will celebrate Ellie’s Homegoing Day, the day she took her last breath on earth and her first breath in Heaven.  On that same day, during those same hours, we celebrate the birth of my little sister; we also celebrate the seventh birthday of our Beloved Bowen Jane, our gift of redemption, HOPE, joy and so much more.  How do you tie it all together?  How do you make it all make sense?  How should emotions, thoughts, feelings, memories, heartache, heart-joys all align????  How do you assist your children as they process those things?  How do you remind your precious, chosen Daughter, what a blessing she is, what hope and joy she brings, dreams she fulfills during a time she will always know we are mourning????  How do you do that?  How do I do that, as the mom, the one who is supposed to hold it together?

There are some traditions we’ve easily slipped into, like Bowie helping me decorate Ellie Kate’s Christmas tree, which hails brightly in our living room.  I hope this will be a tradition we hold dear and pass down for generations.  Each year, we seem to add more things – traditions which bring us more joy and keep us busier. Things like waiting to purchase most of our gifts until December 22^nd and 23^rd – we take Bowen out to help purchase Christmas gifts for the family, and she absolutely loves the two on one attention she receives on her special day!  We usually include lunch of her choosing, grab a hot chocolate and end the day wrapping gifts with Lucy (which happens to be Bow’s favorite part).  

Long gone are the days of pre-purchasing gifts, planning well in advanced, wrapping weeks in advance, having gifts slowly stack up under the tree in expectation of the big day.  Now, it’s more of a “survival mode”, at least for me, although I try not to let the kids in on that part of it all.  I hope it just feels more spontaneous, less planned-out, more exciting and fun, extra child-like, if you will.  I pray it will always be special and that precious memories are made. 

 

Advent is also something we are learning to fully celebrate and understand here in our home.  Playing traditional Christmas carols, hymns and songs, teaching the truth  about Christ coming to earth as a tiny, vulnerable babe.  The miracle and complexity of it all . . . it hits me differently every year; some part of the Truth and Mystery of it unfolds fresh and anew in my heart and mind, which I am eternally grateful for.  Is it the same for you?  I want it to be the same for my own family, for our children, to be able to look past our own tragedies and look toward (and forward to) THE Light of the World. 

My Precious Ellie Kate, with her beautiful, soft curls and tender, baby-like skin . . . that devious giggle we miss so much, and those “pat-pats” from our original Wildcat-girl.  While on earth, she was strong and brave and silly and goofy and GORGEOUS.  Yes, she was the most beautiful Ellie Kate of all time, and she was my daughter; she IS my daughter, and I adore her.  

It’s been eleven years and memories start to fade, pictures in my mind have started to shine a little less, and I am so devastated by it.  I long to remember how Ellie smelled, how it felt to kiss her earlobe (something I frequently did), even the heaviness of carrying her on my hip.  I miss the smell of her freshly-washed hair (I washed it everyday) and I hate that one of my last memories is touching those soft curls – but they no longer smelled sweet – they smelled of formaldehyde and that is devastating to me.  I miss dressing her and helping her get on the bus for school.  I miss hearing her make Henry mad, I miss hearing the sound of her knees sliding across the tile floor as she “hopped” around the house, so independent.  

I once told Ellie that she was my best friend, and it’s true – she was so dear to my heart, a part of me.  Ellie Kate is forever, always, a part of me, and she will be until I am reunited with her again in Eternity. 

I am so thankful for the Light of this Season and for the promises Christmas brings.  I am thankful for the HOPE of Christmas – the hope Jesus brings through His lineage, His birth, His life, His death, His resurrection.  HOPE.  I’m clinging to it this season, and I pray you will too.  If you'd like to watch Ellie Kate's Homegoing Celebration, please do so by going clicking HERE. 

 

Ryan

Ellie Kate's Wish - Last Chance to Give

 

We are almost at the end of our fundraising for "Ellie Kate's Wish", benefitting NKH Families around the world.  Admittedly, we are very short of the goal we set in honor of what would have been her 18th birthday.  Last week, the chosen NKH families were notified that their "wishes" (the needs or requests submitted) had been chosen.  What a wonderful thing!!  It's such a gift to us, as EK's parents, to know others will be blessed in the name of our daughter.  

DONATE HERE TO ELLIE KATE'S WISH

The truth is, we still need your help, and in that vein, I'd like you to meet several of our NKH family members currently struggling.  These precious souls, from around the world, need your prayers and support.  It would mean so much to us if you would donate to this great cause, providing for the needs of NKH Families chosen to receive gifts this Christmas.

Miss Aurora 

Miss Daisy

Mr. Reese

 Mr. Tommy

 Mr. Mason    

 Mr. Luka 

Miss Leah 

Miss Maggie

These Precious Ones, and others like them, are counting on your support this Christmas - all in honor of Ellie Kate.  No gift is too small - I can't emphasize that enough.  We are so grateful for your support, love, and encouragement.  

With HIS Hope and Peace, 

Ryan

LAST CHANCE TO GIVE

 

 

One of Ellie Kate's last Christmases

An Important Birthday

Ellie Kate would turn 18 years old on December 4th.  It's just so hard for me to believe!  I've felt led to share the struggles and feelings which come with this type of grief and celebration - the beauty and the ashes . . . I hope I am able to express effectively, although I know my words will be raw, and the pictures I paint won't all be cozy and warm.  

Life isn't always cozy and warm, even for the Believer, is it?  God doesn't promise us a cozy, warm and safe life - quite the opposite, actually.  Look at the lives (and deaths) of the original Disciples.  Look at the many martyrs who gave their lives (while living and dying) for the sake of Christ.  No, life is not meant to be easy, and we need to remind one another that is okay.  

Bowen's fav Christmas tradition - decorating EK's tree!  

I love how she drew Ellie in an angelic light. 

The first thing I want to share is, when I think of Ellie Kate in the immediate, I think of a healthy, gorgeous, talented, happy, girl who is full of life!  In my immediate thoughts, I think of EK as an almost 18yo - a typical senior in high school, and all the fun things that go with that.  I think of senior pictures; I think of posting photos for "Senior Sundays" on social media and I wonder what her senior photos would look like - what would she have chosen to wear?  Would she be a softball player or a dancer, a cheerleader or on the debate team, or would she try to do it all?  I don't know, but I've found it fun to dream about.  

The second thing that comes to mind is my seven-year-old little girl - that gorgeous girl, full of personality, who suffered so much on this earth due to NKH, this rare and random genetic disease which struck our family, twice.  I hate that my daughter was born with a diseases, especially something "inherited" from both my side, and Mike's side, of her family tree.  I hate that she found comfort being in the hospital because it was so familiar to her. I despise the fact she couldn't  I hate that my eldest daughter road the special needs bus and was placed in a classroom I never knew existed before NKH struck.  These, of course, are things a parent never hopes or dreams of for their child . . . 

Ellie's life, even though riddled with struggle, opened a WHOLE new, unspeakably beautiful, previously unknown world which has become so very precious to us.  This life has given us mission, hope, drive, compassion, and has taught us about a reckless love we otherwise would not have known about.  It has all opened us up to a world of people so often forgotten and neglected, and for that I am eternally grateful.  

I'm so very thankful for the many nurses who became dear friends to me, sisters even - who became dear, trusted and beloved to Ellie Kate.  I am thankful for the many doctors we've had the privilege see walk in and out the doors of OU Children's and others, cheering them on as they exceeded as students, interns, doctors, and now specialists.  I am thankful for our Sooner Start family who made me feel "normal" from the first time they entered our hundred-year-old house; I treasure those women; they became my friends and confidants. I am thankful for our precious outpatient therapist, for the love, acceptance, patience, and knowledge - I would have missed out on so much life if it weren't for you! I am thankful for the servant-hearted teachers, bus drivers, therapists, and helpers who ensured my Daughter was safe at school and felt loved every day she was there.  For our many home health nurses, who've become part of our family . . . a servant-hearted group I never knew existed until EK - they have shown me sacrificial love and love in-action in ways I would otherwise have never understood.  I am thankful for OKC Hope Link, the non-profit started in honor of Ellie Kate - something that grew and moved in ways only God could have planned and ordained.  The friendships, the ministries, the reckless love lessons taught, the fellowship and sisterhood . . . it's too wonderful to describe!  

I am thankful for our NKH Family around the world, which started in a small chat room (didn't have social media back then), for the thousands of words of encouragement I've received, for the wisdom, guidance and practical advice given to me by those who've gone before.  These friendships with people from all faiths and backgrounds - are precious connections I would not otherwise have.  We are bound by genetics, by tragedy, by sorrow, and the constant threat of death and all that follows; somehow, that brings life, comfort and so much more.  If not for Ellie's unique life, I would never have this family - I would never get to experience so many highs and lows of the most intimate, incomparable, sometimes incomprehensible magnitude!  For that, I am grateful.  

In honor of Ellie Kate's 18th Birthday and in honor of her upcoming Heaven Day (December 23rd), we are raising funds for "Ellie Kate's Wish", a program for NKH families around the world.  Families with specific needs are encouraged to sign up for this program and this year, we need your help to meet as many needs as possible.  

You can join us in securing the needs of NKH families by giving HERE . 

Thank you for indulging us by celebrating EK's life and for giving in her name.  

With Hope,

Ryan

Celebrating Ellie Kate's 18th Birthday - YOU are Invited!!

 

You are invited to join in commemorating Ellie Kate's 18th birthday! In her honor, we are raising funds for "Ellie Kate's Wish", which financially supports our NKH Family all around the world. Your donations will assist with practical, medical and immediate needs for both NKH individuals and their families.

"Ellie Kate's Wish" was established by NKH Crusaders in her memory with a desire to bless, serve and provide for families experiencing the same hardships often caused by NKH. Each Holiday Season, NKH families are encouraged to submit an application for "Ellie Kate's Wish", expressing their specific needs. It is our goal to bless and provide for the families with the most needs; this is especially true as we celebrate what would be EK's 18th birthday. Although there are only 500 living with this disease, our NKH families stretch from Israel to the U.K., from Puerto Rico to France and of course, right here in the U.S.

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Ellie's Story:

Elizabeth Kathleen (Ellie Kate) McLaughlin was born December 4, 2005 to Ryan Elizabeth and Mike McLaughlin of Oklahoma City. Our Beloved Ellie Kate left this earth December 23, 2012 after living with Non-Ketotic Hyperglycinemia (or Glycine Encephalopathy), a rare and terminal genetic disorder. NKH caused our Sweet Girl to spend most of her life in the hospital.

Like most born with this disorder, Ellie Kate did not walk or talk and ate via feeding tube. She handled cerebral palsy, SVT, cortical visual impairment, severe epilepsy, and significant disabilities with beauty and grace. "EK" is survived by her parents and four siblings, one of whom also suffers from NKH. She loved church, school, friends, family, music, shopping, and dancing (especially to Taylor Swift and Miranda Lambert).

If Ellie Kate impacted your life, please consider donating to this worthy cause. If you are just learning of her story, I also encourage you to give. No sum is too small.

We are honored for you to join us in this endeavor as we celebrate our Precious Ellie Kate's life!

With Hope,

Ryan (Ellie Kate's momma)

https://thewonderfullymadelife.blogspot.com/

https://hhmin.org/charities/ellie-kate-mclaughlin/

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