HOPE

Today marks the beginning of Advent, with the focus on HOPE.  Hope is a curious thing to me. Obviously it is something dear to our family, seeing that we started "Hope Link".  In society, we use it so often, sometimes using it more like "wish".  But you see, Hope isn't "wishing" - it is BELIEVING in something that is True.  Hope is believing, based on the faithful promises of God.  

Before Christ's birth, Israel longed for their Promised King.  They HOPED in the Kingdom of God on Earth, because it was something that was promised.  During current Advent, Believers HOPE in what they know God has promised will come.  We HOPE in the second-coming of Christ, because we know it WILL happen - God has promised His return.  

As we sang my favorite Christmas Hymn this morning at church, I realized that I have HOPE that God will get me through this season, through Ellie Kate's Month of Reckless Love.  I'm counting on Him and believing that He will come in, this week, and "disperse the gloomy clouds of night" - the gloomy clouds of heartache that cover my Spirit.  I'm asking Him to bring Hope to my heart by reminding me how, because of Christ,  "death's dark shadows (are) put to flight", like they were for MY Daughter, three years ago on December 23rd.  I'm hoping in Him to "cheer us by Thy drawing nigh".  HOPE.  It's an absolute for me, for our family, this coming month and always.

O come, O come, Emmanuel,
And ransom captive Israel,
That mourns in lonely exile here,
Until the Son of God appear.
Rejoice ! Rejoice ! Emmanuel
Shall come to thee, O Israel.

O come, Thou Rod of Jesse, free
Thine own from Satan's tyranny ;
From depths of hell Thy people save,
And give them victory o'er the grave.
Rejoice ! Rejoice ! Emmanuel
Shall come to thee, O Israel.

O come, Thou Dayspring, from on high,
And cheer us by Thy drawing nigh;
Disperse the gloomy clouds of night,
And death's dark shadows put to flight.
Rejoice ! Rejoice ! Emmanuel
Shall come to thee, O Israel.

O come, Thou Key of David, come
And open wide our heav'nly home ;
Make safe the way that leads on high,
And close the path to misery.
Rejoice ! Rejoice ! Emmanuel
Shall come to thee, O Israel.

While yesterday was full of heavy, hot tears of grief - with today, came HOPE . . . Christ's Hope . . . and there are so many layers to that beautiful Hope He gives - for the future, from our past, for our hurts, for our sins, for our earthly losses, for our heavenly home.  HIS hope covers it ALL, and I am eternally grateful.  

With Hope in My Emmanuel,
Ryan

Vastly Different

Thanksgiving.  It's been anything but normal.  I know, I know - nothing is normal and no one is normal either.  Today though, it's been rough and I can honestly say that I'm glad the night is coming to an end.

You may remember me writing recently about Henry's PANDAS and the manic behavior that sometimes comes with it.  It's almost been a never-ending manic episode for Henry since this past weekend, and it all came to a head today.  It's the PANDAS affecting his mind, body and even his spirit.  It's been terribly hard to watch as he's spun out of control on this holiday.  Is it the break in routine?  Is it the excitement over Christmas and gifts?  Has it come on because it's almost Ellie's Month, almost Ellie's birthday?  We have no idea, and we don't need any suggestions or remedies, although we do appreciate your concerns.  I assure you, we are working hard to find out what is going on and why.  The main thing that keeps me sane is knowing that God IS in control.

We left our Thanksgiving celebration very early today.  It was small celebration with just my parents and sister, and yet H was still overstimulated and overwhelmed.  I realized too that I now become overwhelmed on holidays as I sense the lingering emptiness without my Beautiful Ellie Kate.  I wonder if I will always feel that?

Here's a glimpse of what it's like for a family like ours during the holidays.  It isn't that we don't WANT to take part or be a part of it all.  We absolutely do!  It just doesn't always work out best for our family and our extra special members.  Maybe this information can be of help to you or your family with future events and holidays: What I Wish They Knew


Today IS an official day of giving thanks, and I truly am grateful for so many things.  I HAVE nothing without God.  I AM nothing with out Christ.  He provides all of our needs at just the right times.  Today, I am thanking Him for going ahead of us these next few weeks and making a way for peace to reign in our hearts, for His comfort to sustain us; for little reminders of sweet times with Ellie.  Oh, how I need Him!

I am grateful too for the ability to celebrate Ellie Kate with so many of you . . .

For all who have so graciously given gifts in honor of Ellie Kate and the Month of Reckless Love, THANK YOU!  We can't wait to deliver these special gifts to children being hospitalized next week, on Ellie Kate's birthday.  It's been ten years since she was born, but as Henry tells me - to us, Ellie will always be seven years old.

Ways to Participate in the Month of Reckless Love:

1. Purchase items on our Reckless Love Wish List: All interactive toys and books donated will be given to ill children at OU Children's Hospital on December 4th.  As a family we will be delivering these items as we celebrate Ellie Kate's birthday:  In Honor of Ellie Kate - AMAZON WISH LIST

2. December 1-31st: Start loving those around you in reckless ways! Give to those in need, purposefully reaching out to those who are hurting, including those with special needs and families who have lost children. Share on our page how you have loved others in Honor of Ellie Kate (see the definitions and explanations above).

3. December 4th: 

• For Ellie Kate's birthday, we ask that you love, serve, encourage, or give to a family with a special-needs child OR to a family who has a lost a child due to any circumstance.  Bring a meal, bake a cake, send a balloon or flowers - anything uplifting to let the family know that they are loved and not forgotten.
• Share Ellie's story with someone you come in contact with.  Post and let us know about your encounter. 
• Share your favorite Ellie Kate memory or story on our FB page

4. December 23rd: Ellie's Heaven Day! Post pictures of you and your family releasing balloons in Ellie Kate's honor. Send messages with your balloons and be creative! This is a way to show our family that you remember our Sweet Girl.

FOR WAYS TO GIVE while receiving a tax write-off: 

*Give to the Ellie Kate Project through Helping Hands Ministries - This is the family medical fund, and ALL donations goe directly to Lucy Belle and Henry's medical costs.

*Give to OKC Hope Link OKC Hope Link- - a ministry we help lead; Hope Link reaches families of children with rare, serious and undiagnosed disorders.

*Give to NKH Crusaders and help us find a cure for this terrible disease which causes GI issues, epilepsy, extreme developmental delays, mental retardation, and more. 

With Hope and Reckless Love

This past week has been heavy.  Actually, I've felt like the last two weeks have been from a chapter straight out of, "Alexander and the Terrible, Horrible, No Good, Very Bad Day".  Grief sickness overtook me Thursday night and once again, I couldn't sleep and felt ill from deep within my soul.  Grief hits you in waves and sometimes its extremely overwhelming.


Ellie's birthday is almost here - December 4th.  It's as if, all of a sudden, my Spirit realized all of the tough losses that have recently happened in our family.  I literally looked at the calendar and was shocked - it's almost Ellie's birthday, and then her Heaven Day on December 23rd (my Sister's birthday), and after that, of course, is Christmas.   I scrolled through Facebook while tossing and turning Thursday night (or Friday morning?) and found this gem from November 20, 2009.  Oh, My Heart!

Ellie Kate and Conner

Good things that happened this week - my Sister's missing dog came home, my Dad arrived safely from his last mission trip and I had my Rodan and Fields launch party! And now we prepare for Thanksgiving with an entire week off of school.


Another great thing - Lucy had a party at school and I was able to attend! The special-education teachers at Lucy's school brought in a Music Therapist today for the kids to enjoy in lieu of a Thanksgiving Feast!  It was absolutely precious and Lucy just loved every moment.  It's safe to say, a pink tambourine is now on Lucy's Christmas list!

Lovin' the music and rockin' the bow!

Henry's been having more and more "manic" episodes, where he stays up all night long (literally).  He's happy during these times - playful, energetic, intelligent.  His brain just can't stop, even with medication.  It's so strange, so bizzare to observe this little boy running and playing, all through the night without missing a beat.  His anger episodes have slowed down greatly and he is doing amazingly well in school.  You should see the systems his sweet teacher has set into place - letting Henry tangibly see his schedule every day.  He LOVES her so much, as well as the Teacher's Assistant, who gratefully pals around with Henry and keeps him extra safe.  I just can't say enough good things about how Our School has rallied around us and have helped Henry this year.


I often feel guilty in not posting much about Conner-Mac.  Oh, how I love this eldest boy of mine!  Conner is so easy-going and is truly such a joy.  He had a blast this last week as he and his fellow sixth-graders wrote scripts about a fundraiser the school is doing.  Their job was to convince the other kids to get involved and give.  Conner went to school dressed like an Christmas elf and gleefully delivered the fundraising message.  He didn't want to take extra clothes to school.  He wanted to wear that costume the entire day, regardless of what people thought (which is a big thing I love about him).  I must say, it was pretty hilarious seeing that little Elf ride off to school on his bike!


We have some very tough days ahead - coming up quickly. I won't lie - I'm NOT looking forward to the upcoming holidays this year, as my heart feels so raw, as if it's open flesh. Your gifts in honor of Ellie Kate have been coming in every day now, and with each package, our hearts are lifted more and more.  It's hard to believe that we will soon be there at OU Children's Hospital, delivering the gifts you have given, passing them out in Ellie Kate's honor.  I just don't have the right words, Friends.  I'm so grateful and I pray that the Father will allow you to somehow feel and know how special your remembering, your efforts, your giftings have meant to us and to so many others.  Reckless Love has no boundaries! 

Gifts YOU have purchased from the Amazon Wish List!  

To show your love and support during December, we ask that you use this as your profile picture, in honor of Ellie Kate and A Month of Reckless Love (you are welcome to use this image and the one at the top of this blog post).  

There's STILL time to get your gift here before December 4th!  As a reminder, Mike and I will be delivering gifts from this Amazon Wish List in Honor of Ellie Kate as we celebrate December - The Month of Reckless Love. 

Click HERE to see the wish list on Amazon 

With Hope and Reckless Love, 
Ryan

Marathon - Time is Slipping Away

December 4th, 2005.  That was the date the marathon started, although we weren't quite aware.  We most definitely became aware of the intensity of the marathon on day four, the day Ellie Kate stopped breathing - at least the first time we saw it happen.  I didn't know how long the marathon would be, and in fact, we were told it wouldn't be long.  But Mike and I fixed our eyes on the One who brought us together; on The One who created Ellie Kate, and we jumped in and dedicated ourselves to that marathon, no matter what it might take.

I think we kept our pace pretty strong.  Sure, there were times of injury where we would stop for a while, but as Ellie Kate's parents, we never truly stopped the fire within us - that fire to push, to press, to go on, to move on, to put one foot in front of the other, no matter what sacrifice, no matter how much it hurt on ever level.  

And then, after seven long years of marathon-ing, it all STOPPED.  Ellie went to heaven and is complete and whole.  We weren't completely lost, but for me in particular, as a momma who was used to running, and pushing, and fighting, and calling, going to appointments, to IEP's, nurse visits, home health visits, fighting at the state level - all of that stopped in a way.

We had Lucy, and gratefully she was doing so very well and didn't need as much help from us to survive - at least for that time.  It was hard to change the pace - to suddenly stop.  And things immediately changed before we really rested.  Henry started having trouble.  We ALL started having a hard time, and rightfully so.


And here we are . . . TEN YEARS after we initially started that first unexpected marathon with Sweet Ellie Kate, the one that ONLY JESUS had prepared us for, and I am oh-so tired.  Attempts to start new things, to take better care of myself;  attempts for Mike and I to focus on our marriage healing, for us to focus on our children, on our finances.  I can tell  you folks, even THREE years after EK's death, I still feel like all of these things are in a bag, along with giant boulders, and I'm trying to move them with a stationary bike.  I don't think we are alone.  I KNOW WE AREN'T ALONE.  It's like this for so many families as they learn to "do life" after earthly loss.

Please add this as your facebook profile pic from now through December, in honor of Ellie Kate

That brings me once again to "In Honor of Ellie Kate - A Month of Reckless Love".  

Do you know . . .  could I ever begin to tell you?  Are there words enough to convey the importance of your involvement, the preciousness that comes in knowing you say her name during these few months?  I don't think you will ever know, this side of heaven, or unless you too lose someone so very dear to you - bone of your bone and flesh of your flesh.

Today is November 17th, and I am INCREDIBLY grateful to those who have SO graciously given, who have already checked off the Amazon Reckless Love Wish List for OU Children's.  We are a mere few weeks away and I have FIVE items.  FIVE items is WONDERFUL, because that will mean that FIVE children will receive a special gift!  But, we long to do so much MORE, as we have in the past, with over 60 just last year alone (and over 150 the year before that).  Would you consider purchasing something off our of Amazon Wish List 2015?

 Gifts 2015

We also did something new this year - PARENT PACKETS!!  Because of the loving heart of my dear Sister, Laura Franklin White, there are 41 parent pouches going out to local hospitals in Ellie's name - 31 of them going to OU Children's on December 4th, Ellie Kate's birthday!  THANK YOU to all who participated in that part of Ellie's Month of Reckless Love this year!  What a vital, life-giving way to support the entire family as they sit in the hospital with their sweet one this Holiday Season!

If you have any questions or need any other information, please let me know.  For more information on "In Honor of Ellie Kate - A Month of Reckless Love", please visit our past blog post here: Month of Reckless Love Post 2015

To see our amazon wish list for the event, please consider visiting the site.  Every little gift helps!
Amazon wish list.

Thank you for honoring Our Girl, for remembering her and for doing something in her honor. We love you so much.  

Ryan

Peace, Sorrow and Ellie's Month of Reckless Love

Peace and Sorrow are so beautifully intertwined within the life of the Believer.  We live in a fallen world and yet have the hope of a perfect eternity of peace with Christ.  Sometimes it's a solemn dance and sometimes it's a rowdy one.  The month of November reminds me that "Ellie's Month" is right around the corner - that peaceful, sorrowful month of December.  

I've recently been reading a bit about Martin Luther and his wife Katie.  I found out they lost two daughters - Elisabeth and Magdalena.  Elisabeth died early in infancy and Magdalena died around the age of 14.  Luther lovingly called Magdalena, "Lenchen", which means "light" (same meaning as Lucy).  I've read in several  places, that upon Lenchen's impending death, Luther said, "O God, I love her so, but thy will be done.”  It's been written, "Luther reproached himself because God had blessed him . . . and yet he could not find it in his heart to give God thanks. Katie stood off, overcome by grief; and Luther held the child in his arms as she passed on. When she was laid away, he said, 'Du liebes Lenchen, you will rise and shine like the stars and the sun. How strange it is to know that she is at peace and all is well, and yet to be so sorrowful!'" - The Gospel Coalition

Magdalena died after a "long illness", and in a letter to one of his dear friends, Luther wrote the following, ". . . my Dear Daughter Magdalena has been reborn into Christ's eternal kingdom.  I and my wife should joyfully give thanks for such a felicitous departure and blessed end by which Magdalena escaped the power of the flesh, the world . . . yet the force or our natural love is so great that we are unable to do this without crying and grieving in our hearts, or even without experiencing death ourselves.  The features, the words and the movements of the living and dying daughter remain deeply engraved in our hearts.  Even the death of Christ . . . is unable to take this all away as it should.  You, therefore, give thanks to God in our stead.  For indeed, God did a great work of grace when He glorified our flesh in this way.  Magdalena had a mild and lovely disposition and was loved by all. . . God grant me and all my loved ones and all my friends such a death - or rather, such a life." (emphasis mine)

Oh, you guys!  First of all, this is a side of Martin Luther that I had never seen before.  Secondly, he so perfectly pens our feelings into words.  It is extremely true in our lives, in our journey, that YOU have given thanks to God for Ellie Kate's life and ultimate healing when we haven't had the strength to.  As Luther invited his friend to join in the mourning, celebration and remembrance of his precious girl, WE have invited YOU into our journey and you have faithfully been there.  

Once again, we are asking you to join us in remembering and celebrating Ellie Kate's life with "In Honor of Ellie Kate - the Month of Reckless Love".  This special event will take place the entire month of December, with different ways to participate, celebrate and honor EK while recklessly loving the world around you.  

What do we mean by "Reckless Love"?  What we mean is this (and it's very much a 'Mike and Ryan definition'):  

• "Love" should be a verb, an action; it's not just a feeling, because our feelings pass and fail us.  

• "Reckless" means to be unconcerned with the consequences of an action; to test the limits and not worry about what might happen, be it good or bad.  

Reckless Love is taking intentional action in order to benefit the life of another

without worrying about the consequences. 

It's stepping up and out and loving, even if it feels awkward, 

even if it causes a stir in your household, community or place of work. 

Ellie Kate taught US to love others with reckless abandon - to forget about the rules and the limits or how it "should" be done.  Her life taught us to love who the world sees as unlovely.  She taught us to give even when we didn't have enough. She taught us to serve even when it hurt, even when it was costly in time, energy, etc.  

Ellie Kate to love in a reckless way - the very same way that Jesus loves each and every person on earth.  Our sincere prayer is that your lifestyle will become one of Reckless Love, and that in some small way, our Ellie Kate opens you up to loving, giving and serving like you never thought possible. 

We have a Facebook page dedicated to "A Month of Reckless Love", and my hope is that you will freely post ways you are loving and serving others with reckless abandon.  Posting won't be a boastful thing; it will be an encouraging thing to Mike and I and to our entire family.  Your posting will also encourage others, and I pray it will spark those who see it to move and do. 

We encourage you to celebrate Ellie Kate by participating in the following ways: 

1. Purchase items on our Amazon Reckless Love Wish List: All interactive toys, movies and books donated will be given to ill children at OU Children's Hospital on December 4th, Ellie's birthday (Ellie spent most of her birthdays, including her last earthly one, there at OU).  

  Parent Packets are a new thing we are adding this year that will also be delivered on the      night of Ellie's birthday.  These packets will be full of things that parents need during their   stay, especially since many times their stays are unexpected.  The packets will make them      feel loved and will bring some comfort during an intense and emotionally taxing time.  The    Parent Packet will include Ellie Kate's story as well.  
   For more info on Parent Packets:
https://www.facebook.com/groups/719323738169061/?fref=ts

  
2. December 1-31st: Start loving those around you in reckless ways! Give to those in need, purposefully reaching out to those who are hurting, including those with special needs and families who have lost children. Share on our page how you have loved others in Honor of Ellie Kate (see the definitions and explanations above).

3. December 4th: 

• For Ellie Kate's birthday, we ask that you love, serve, encourage, or give to a family with a special-needs child OR to a family who has a lost a child due to any circumstance.  Bring a meal, bake a cake, send a balloon or flowers - anything uplifting to let the family know that they are loved and not forgotten.
• Share Ellie's story with someone you come in contact with.  Post and let us know about your encounter. 
• Share your favorite Ellie Kate memory or story on our FB page

Sissy's 7th Birthday at OU

4. December 23rd: Ellie's Heaven Day! Post pictures of you and your family releasing balloons in Ellie Kate's honor. Send messages with your balloons and be creative! This is a way to show our family that you remember our Sweet Girl.

As Ellie Kate's Mommy, I could never put into words just how very much your participation in this celebration truly means.  Thank you in advance for once again remembering and recklessly loving in honor of Elizabeth Kathleen McLaughlin.

Ryan