To Everything . . . There is a Season

Seasons - they are so beautiful, don't you think?  We greet each of them with anticipation.  We eagerly await their coming and the transformation that takes place in everything around us, all because of times of change.  It's breathtakingly beautiful to think about, really.  The God of the universe delighted in His creation so much, He delighted in humans so much, that He decided to bless them with literal, tangible change. 

Hope, newness, excitement - all come as we crave spring flowers, summer sun or that pumpkin spice latte.  But there are also hard seasons.  Winter is a hard season for most, in the physical sense.  Sometimes the summer and it's heat are rough, and sometimes floods come with the spring.  So in all reality, not all seasons are pleasant, although we can always look forward to  . . . change. I truly look forward to the seasons changing, although I've been looking at them very differently over the last few days.


Ecclesiates 3:2-8

For everything there is a season,
and a time for every matter under heaven:

a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;

a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
a time to seek, and a time to lose;
a time to keep, and a time to cast away;
a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
a time to love, and a time to hate;
a time for war, and a time for peace

 

This past week I was blessed to attend the 2014 International NKH Family Medical Conference in Boston, MA.  It was my sixth NKH conference to attend.  SIXTH.  For some reason that number hit me so hard and it seemed as though I was feeling every possible emotion known to man (that's a lot, ya'll!). 

 

For the first time, I was hit hard with the fact that this was a new season in many ways, one being a new season in the NKH Community.  None of the families that were there at our first conference were there this time.  Many of their sweet children have passed away.  And, this is the first group of NKH parents who don't know and haven't followed Ellie Kate and her story.  They don't know My Daughter.  They of course know Lucy Belle, and are all so caring and keep up with us, often cheering US on as we fight the same disease.  That feeling was something new for me.  Sadness, grief, loss, along with joy, relief and gratitude.  I realized that it's just such a strange season in MY heart, and this past week, I most certainly felt and/or saw every season listed in Ecclesiates. 

At the "Ellie Kate's Helping Hands" table, raising funds to assist fellow NKH families in need

(THANK YOU to everyone who gave for this precious cause!!)

I was surprised at the grief I felt over the loss of what used to be close relationships - us young NKH parents, talking, laughing, sharing; we bonded in a way that most do not understand.  And now we still love and have a bond - it's just different because our children are no longer here on earth with us, and that is hard.  We fought so eagerly and the great thing that bonded us together as we fought was the better treatment for our children, and that didn't happen in their lifetime; it changed the season of those relationships forever, though I do cherish each one.


And these sweet young parents, so full of and eagerness to fight and to do whatever it takes to find better treatment for NKH patients - entering a deep season of hope and of fighting.  I watched as they armed themselves with information, with loyalty and with the new sense of family they found at the conference.  Their season of hope is just beginning and it was beautiful to watch that take place. 

(we call this a 'surprise shot')

Seasons change.  Oh, how grateful I am for that!  Today I have mourned and wept and cried out for Ellie Kate.  I have felt so weak in my bones because of the ache I feel in longing to hold her again.  It's a physical ache that doesn't easily go away.  But I know . . . I know that seasons change, ya'll.  And I know that they can change on a dime, just like here in our great state of Oklahoma!

And you know what?  Not all of us are in the same season at the same time.  That's true physically and spiritually (again, isn't that so poetically beautiful?).  So when I am in the winter and my wind chills me to the bone, I can rely on my friend who is in a season of spring, waiting for the summer sun and all of it's glory to arrive at any moment!  And that's what I felt this week. 

Me, Raeanne, Tyler and Rachel

 

Julia

 

Dear Logan

 

 

Sweet Raeanne

 

Super Cooper!!

 

Baby Lucy Mae

 

Thank you to everyone who made it possible for me to attend the NKH Conference.  Mike, Stu and Debi Tully (my Mom and Dad), Jayme and Stan McLaughlin (Mike's momma and daddy), along with our nurses, all put in major overtime and did way more than I could have hoped or expected.  They cared for our children and loved them well and the house was still standing when I arrived this afternoon!  I'm so thankful that my family members are in a season of giving, of blooming, while I've been in a season of dryness the last few days. And to those who gave towards the NKH Crusaders Auction, especially towards "Ellie Kate's Helping Hands" . . . I am stunned at your continued support and generosity because I know it isn't always easy or convenient! How beautiful is our living God?!

*Be watching for more updates about Conner and Lucy's birthday parties, our upcoming Make-a-Wish trip and more on the conference!

NKH International Conferences of the Past . . .