A Solemn Dance

It's a Solemn Dance,  with"Mourning" and "Thanksgiving" as the Partners.  It can be confusing, frustrating, and oftentimes, the unknown of it all can make you physically sick.  

At points, this Dance is intensely precious, passionate, and beautiful - so much so, you want to hold on each part, every picture in your mind, hoping to fully grasp the intense feelings it can bring.  You may not fully understand, but you know it is Holy and can only come from God.

This Dance - the coinciding of these intensely genuine, human emotions, awkwardly trying to find balance; giving and taking, back and forth, fighting to make something beautiful . . . 
THIS, is Suffering for the Believer.  

Thanksgiving was a sweet time of reflection and gratefulness for our family and we were blessed by the presence of Mike's Parents, Stan and Jayme.  As you may know, in October, Stan was diagnosed with Stage 4 Cancer, which has metasticized.  He is determined to live-out more days on earth with his family, yet the chemo and cancer have started to ravage his body - this tall, strong man who played college basketball; the Paw Paw we cheerfully call, the "Pied Piper", because the grandchildren follow him around like little ducklings.  He is kind, a gentle-giant, and it hurts our hearts to see him struggling.  What a GIFT it was to be in Stan's presence this Thanksgiving! 

Lucy and Paw Paw, 2014

Sweet Lucy slept most of Thanksgiving Day, but we did have some sweet moments when she was lucid and awake.  Her body is brutally thin, her hair starting to fall out.  She hardly has any energy at all, yet there are times when we hear her precious giggle and laughter, even in the middle of the night.  Last evening, Lucy started throwing up with each feeding, no matter how small the amount that was given.  She's been weak, pale and often trembles, but on Thanksgiving she joined us in the living room as we sat around, sharing all we were thankful for.  At the top of the list: Thanksgiving for another Holiday to spend with Stan and Lucy.  

Last evening, we had the honor of decorating Stan and Jayme's home for Christmas, which was a special request from Stan.  Tonight, we start decorating my Parent's house, mainly with Lucy in mind.  Something about the warm glow of the lights, the colors all around the house, the smells and sounds that come with it all - it brings comfort, love and a familiarity that is . . . HOME.  It's something we all want during the Holidays, especially for these family members who are suffering so in the physical realm.  I cannot wait to see Lucy's face when she sees the lights and the tree!  

Oh Lord, Why Now?  

Why would you allow all of this suffering AGAIN, 

during the same Holiday Season? 

 Isn't one time enough, 

with Ellie Kate's death, December 23rd? 

 It's been five years since we buried Our Girl and now, 

TWO more members of our family 

firmly face earthly death, 

if not for a complete miracle for God.  

My heart grows weary and cries out often. 

Oh, Ya'll!  It's hard not to despair completely, knowing these Precious Ones suffer so!  And on a MUCH-lower level, I find myself tempted to despair over my feelings of loss and heartache, as well as anticipation of what I KNOW is coming.  It's compounded by feelings of not having our own space, as we are selling our house, and continue to live with my Parents (who so graciously have allowed us here).  I long for our own space, especially this time of year, as silly as it sounds.  Admittedly, this is THE very hardest time of year for me, personally and for our family - Ellie Kate's birthday on December 4th, leading up to her Heaven Day on December 23rd, followed by the festivities of Christmas Eve and Christmas Day.  Of course, our Dear Bowen Jane's FIRST Birthday ALSO falls on December 23rd too.  There are many mixed emotions flooding my heart, mind and body; intense thoughts and memories.  Sometimes it feels my emotions swing like a pendolum, back and forth, from one extreme to another . . . and right now, it  compounds the feelings of knowing nothing seems to have it's place. 

When God has done SO MUCH for us, providing miracles for Our Family through precious people, many times, it is still a battle to overcome the sadness, the sorrow, and the mourning for the future and for what we know will come. 

The Holidays can be BRUTAL, 

and not just for Our Family. 

 I know so many of you are in similar circumstances, feeling similar things this Season, many fighting depression and darkness; hopelessness and despair.  

You KNOW God has been incredibly good and yet, 

at times, the circumstances surrounding you seem too heavy to bear.  

You aren't alone.  

It's during these times, I am drawn to God's Word; 

the Precious Words of Life, 

the ONLY never-changing Truths 

in this broken, scarred-filled World.

Rest in knowing you aren't alone: 

for Ages, Fellow Believers have joined us in this very longing . . . 

Romans 8:23 ,"And even we asChristians, although we have the Holy Spirit within us as a foretaste of future glory, also groan to be released from pain and suffering. We, too, wait anxiously for that day when God will give us our full rights as his children, including the new bodies he has promised us—bodies that will never be sick again and will never die".

Rest in knowing there is Purpose in Suffering:

 Romans 5:3,4  . . . "We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame".

Romans 8:17 ,"And since we are his children, we will share his treasures—for all God gives to his Son Jesus is now ours too. But if we are to share his glory, we must also share his suffering".

Rest in knowing God comforts Us in every Season:

2 Corinthians 1:3-5,"What a wonderful God we have—he is the Father of our Lord Jesus Christ, the source of every mercy, and the one who so wonderfully comforts and strengthens us in our hardships and trials. And why does he do this? So that when others are troubled, needing our sympathy and encouragement, we can pass on to them this same help and comfort God has given us. 5 You can be sure that the more we undergo sufferings for Christ, the more he will shower us with his comfort and encouragement . . . "

There is Purpose in EVERY 

heartache and suffering, Friend.  

For Centuries, Believers everywhere have experienced deep disapointment and loss, 

somehow intertwined with joy and thanksgiving; 

surely, we too can move forward 

in Faith as they did.  

Through every Season, even in those which seem confusing or all-too-heavy, 

HE IS OUR COMFORT.

God is with us every step of the way, 

always and forever.  

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December 1st is upon us, and "Ellie Kate's Month of Reckless Love" will soon begin!  It's an entire month, Ellie's Month, dedicated to loving and serving others in reckless, unexpected, over-the-top ways.  I cannot wait for it to begin!  FIVE years - it just doesn't seem possible that we've spent FIVE Christmases without Our Eldest Daughter, our Brown-Haired-Beauty, whose green eyes glistened with every giggle.  

This year, in honor of Ellie Kate and in celebration of her month, we'll be adopting THREE Hope Link Families.  Hope Link is the Foundation (501c3) birthed in 2007, when the Lord first revealed our Pre-Destined Mission as a couple, as a family, and as individuals: loving and serving families within the medically-fragile and special needs communities; families like ours.  Hope Link seeks to serve families of children with rare, serious and undiagnosed disorders.  Several of our families have already lost children to their rare diseases and disorders as well.  It will be a JOY to bless THREE of our families with Christmas this year and I hope you make plans to participate!  

Also this year, in celebration of Ellie Kate's Fifth Heaven Anniversary, we will be fulfilling, "Ellie's Wish", which reaches to our extended NKH Family, all around the world.  Families apply for specific things their child with NKH may need and YOU will have the opportunity to help grant that wish!  "Ellie's Wish" joins NKH Crusaders in blessing and providing for these precious NKH children, and I cannot wait to see their needs met.  

Thank you in advance, 

for preparing to participate in 

Ellie Kate's Month of Reckless Love. 

 It means more than you could know, 

especially on this milestone anniversary 

of EK's Heaven Day. 

More information will soon be posted, 

and I pray you will be watching 

in excitement and anticipation, 

ready to love and serve with Ellie Kate in mind.

In Mourning and Thanksgiving, 

Ryan

The Learning Curve - It's All About Grace

The past few months, I've been on a personal learning curve.  This Learning Curve has played-out in every aspect of my own life as we've been surrounded by change.  Many things are reminders of what I've learned in the past three years since Ellie Kate passed away, but many things are NEW.  All experiences and epiphanies make us grow and help us change into better human beings, better Believers, better parents . . .  BETTER. 

Here are some ways God has been teaching me and how

He's been stretching me to trust Him more:

• It's okay to still mourn my Daughter, Ellie Kate.  It hasn't been too long - it will NEVER be "too long".  It's also okay for some days, to feel the same initial pain as I did in the beginning. It's OKAY. 
• It's okay for me to take time for myself and to do the things I enjoy - walking in nature, exercising, random little day-trips with my family.  These are GOOD things to do and it's okay to drop things and take care of myself and my family in this way. 
• It's okay to let other's down (this is a HUGE one for me).  I can't always make everyone happy all-the-time.  Whether it's forgetting play dates or missing a thank you note/email, I must give myself freedom NOT to be perfect.  I can trust that the LORD meets all of the needs of my Friends. 
• It's okay to still mourn the "normal"- tight friendships we once had or dreams God still has placed deep within our hearts.  What HE wants is for us to stick close to HIM. 
• It's okay for me to think of Ellie Kate every time I see Lucy.  God has allowed it to be that way, and I will choose to rest in that sweetness, even though it sometimes stings my heart. 
• The Father has "fearfully and wonderfully made" ALL of our children, and HE alone knows the ins and outs of their minds, bodies and spirits.  We will cling to this Truth, knowing that somehow, someway, God will use all of these things for the good of our children AND for our good as the Parents!  Most importantly, God will use all of these things to show His Glory!
• It's okay for me to still wonder how we will pay for things; you know, to DOUBT - how we will cover medical bills that have come up this year for ALL of us, etc?  God has reminded me that He owns the cattle on a thousand hills, and He will surely take care of me!  He takes care of the mere sparrow, providing every need; He will surely take care of everyone of OUR needs! Read about it here: My Provider (Psalm 50:10); Do Not Worry (Luke 22:24-32)
• I'm learning to accept - the Special-Needs life often means, what might be normal and expected in the Typical World, isn't what's expected in the world of special-needs.  This is truly hard to accept; it's hard for me to trust God to show the people around me how to love me and my family.  I'm not the ONLY mouthpiece, that's for sure. 
• God has reminded me (and Henry) of Shadrach, Meshach and Abednego - We KNOW how these men were obeying God and yet still were literally and physically thrown into the fire.  But, God rescued them and not only that - He was in the fire with them!  Just like these men, God is with OUR little family in the fire.  Even if God doesn't take it away; even though He has NOT yet taken it away, we will still choose to put our trust in him.  (Read the story here: Daniel 3)

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There's something else I ran across this week - something from a very cool blog.  It truly represents a picture of the special-needs life - the isolating, spinning, overwhelming, constant, permanent, blissful, joyful, rollercoaster of it all.  Parts of this article rang SO true with my own heart, that I found myself in tears reading it - sometimes ugly tears, as the truths are so real. 

Please read the blogpost: Loving a Child Who Cannot Speak 

"There are people in your life who are going through this never ending grief. And they have learned how to blend in. They know how to disappear when they can't blend in and after a few times you stop noticing their absence. But they don't. They wear the guilt of escaping on their shoulders. The isolation adds to their pain. But they simply cannot take one more raised eyebrow from a stranger. Every day they are at the brink of breaking. So give them grace". 

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Oh, Father!  Thank you for your continued grace and forgiveness!  May I learn to show this same type of love to those around me, even when it's hard, even when I feel wronged.  Remind me of your continued faithfulness and provision.  Remind me of the many times you have Divinely Intervened. Turn my mourning into DANCING, even now!  Allow me to truly accept myself where you have me; I give you my needs, desires and mourning.  Continue to bring hope, joy and peace to our family, for our good and for YOUR glory.

Ryan