Lucy - Health Update

My Precious Lucy-Girl.  I haven’t posted or shared much about Sweet LuLu in a while.  We just got home from a long afternoon/evening in the ER and we have some big changes coming up where Lucy’s health is concerned.  It’s been so long since I’ve shared about Our Sissy, I felt it was it was time.  Lucy needs the prayers and I need to rise above my fear and shame. 

The fall seemed consumed with getting Henry’s IVIG treatment, which miraculously took place right before Thanksgiving.  Then came December, Ellie’s Month of Reckless Love, and we were focused on Ellie Kate’s memory as well as spreading Reckless Love in her name.  We are humbly grateful for everyone’s support and participation during these months!  I’ve hesitated going into details about Lucy while so many of you have supported and loved us in other ways (again, with the shame and fear). 

FEAR: Laying it all out there – sometimes I feel like “the person who complains all the time” or, “the one who always needs something”.  When I share pictures of Ellie Kate or Lucy, I can feel like others may think, “Here come more pics of the little dead girl, again!” or, “If I see ONE more picture of a sick little girl . . .”.   I NEVER want to be a “Debbie Downer”, ya’ll.  It crushes me to even think that could be a possibility.  It’s a fine line, wanting to share our special journey with others, while not coming across the wrong way.  It makes me sick to think of being seen in that light, especially because I feel called to share.  

With all that I am, I feel the world (The Church, in particularly) needs to know how to better love and serve those with special needs, those who are medically-fragile and those who’ve lost children because of those things.  I must continue to share, swallowing my pride where this is concerned.  I am choosing NOT to let fear control me from sharing the not-so-pretty things about life. 

LUCY: From the beginning, Lucy has struggled with bladder issues and has suffered from frequent Urinary Tract Infections.  Those UTI’s have increased over the last few years and in 2018, Lucy had approximately 8-10 UTI’s.  After extensive testing, we know what causes the infections in Lucy – she retains her urine.  We aren’t sure if Lucy “holds” her urine on purpose or if her brain simply doesn’t give her bladder the right signals, preventing her from urinating at appropriate times.  At this point, Lucy’s having back to back infections.

Big Girl, holding one of her Christmas gifts this year!

INFECTIONS: Last Summer, Lucy suffered from a few UTI’s as well as from C-diff, an infection of the intestines.  In Lucy’s case, this infection was caused by the frequent use of antibiotics, trying to treat her UTI’s.  C-Diff isn’t something you want to have – it can be incredibly dangerous, deadly, and the more time one spends on antibiotics, the more chance one has of getting c-diff.

In the fall, doctors brought up the possibility of using a urinary catheter on Lucy, here at home.  We are NOT afraid to use a catheter on Lucy here at home, but the reality of it all seemed impossible.  She is our, “Wild Cat” and much like her Big Sister, likes to bite, kick, scream, hit, bang, pull, and anything else she can do, to stop others from holding her down for any type of procedure, especially for catheterization. 

PAIN: The infections are incredibly and understandably very painful for Lucy.  She cannot sleep well because of the pain and bladder spasms, even with medication and treatment.  She can’t get comfortable during the day time, often crying hysterically when she urinates.  It’s absolutely heartbreaking because Lucy doesn’t at all understand what’s going on with her body.  No matter how I explain it or what I might say, she cannot be comforted by the meaning of my words because she mentally cannot make sense of it all.  Lucy just knows she hurts; badly, excruciatingly at times. 

 

SOLUTIONS?: Lucy’s been running a high fever, and any type of fever is rare for her.  With the fever showing up last night, I knew something was brewing and figured it must be another UTI (we finished antibiotic treatment for the last infection just two weeks ago).   Other symptoms popped up so, after a call to her pediatrician, we decided to go ahead and take Lucy to the ER.  Per usual, they were great and got us right in, taking cultures, giving fluids and running a general antibiotic.  Sure enough, Lucy has another UTI.  No wonder she’s just miserable, bless her heart. 

We’re now faced with one probable solution: a suprapubiccatheter.  It’s something new.  It’s something surgical.  It’s something that will be an ongoing surgical commitment.  We have no experience with this whatsoever, unlike most things we’ve dealt with up until now.  BUT, we are ready and willing to learn, especially for Lucy’s benefit.  I will keep you posted on Lucy’s health and I hope to do so more often than I have been, pushing myself beyond fear. 

Daddy Snuggles on Christmas Break

PRAISE:  I am SO grateful to be able to post about Lucy in this way, to have the privilege of asking for prayers for her body and mind!  Last winter, especially was excrutiatingly difficult for Lucy as she continued to waste away, despite our best efforts.  Her body started failing and we had prepared our hearts, especially around Christmas-time.  God has SPARED our Daughter, and we give HIM alone the glory for this!  While Lucy is still far behind in weight, she has more good times than bad, the total opposite of last year at this same time. 

THE SUM:  Tonight, in the ER and now at home, I’m reminded of how precious and fleeting life truly is.  Yes, this same message is shared so often, almost everywhere we look.  HOWEVER, I encourage you to truly, STOP and take a moment to think about it.  We get frustrated and flustered, caught up in the activities of life and what we feel are urgencies, making us worry, fret, lose sleep, and lose happiness in this life.  This life is ONLY about loving God and loving others; those are the only things which are eternal - everything else .  .  . EVERYTHING ELSE will melt away, falling to the wayside, for us to never think of again.  

Whenever you have the chance (and I mean really, whenever!) reach out and give a gentle touch, give an encouraging word, give a hug; share, “I love you”, or give “pat-pats”, like EK and Lucy do to those they like.  It can be over in a moment.  It can change, drastically.  ONE MOMENT.  OVER.  DONE.  FOREVER. And all that you’ve done will be IT – the sum of your life.  Are you satisfied with that sum right now, at this very moment?  You have the power to change it.  Trust me, you won’t EVER regret showing Reckless Love. 

Ryan

A Thrill of Hope!

There have been some difficulties with my blog over the last two months; for some reason, only those who subscribe to it are able to actually see it in it's entirety.  I sincerely apologize for this and want you to know, I am working to find a remedy.  For now, I will keep blogging and sharing the link to the blog.  You can, "follow" me officially on Blogger.com and receive the updates directly in your inbox.  I will also cut and paste each post to my Facebook account, in hopes others will be able to see it there.  You've so faithfully loved and followed us since December 2005, and we want that to continue for as long as the Lord sees fit.  
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Gorgeous views on Bowen's Birthday, reminding me of Ellie in Heaven!

The Holiday Season is coming to an end.  Twinkling lights, vibrant colors and stunning Christmas carols surrounding us as we are out and about, are all being put away.  It makes me sad.  I want to hold on to this Season just a bit longer.   It's Ellie Kate's Season, the time of her birth and her death, and all of the lights, colors and music remind me of my Precious Daughter.  I miss her.  I miss everything about her.  


It's been six years since Ellie Kate took her last breath on earth - writing that even brings a heaviness to my chest.  Some would think I would be much more "over it" by now, but I assure you, I will never be "over" my Daughter's earthly death.  I will always miss the sound of her voice, although she did not speak.  I will always miss the way she entered a room, although she did not walk.  I will always miss the way she miraculously breastfed as a baby, then ate by mouth for a year before needing a feeding tube; to this day, it is difficult to set and gather around our dinner table because the obviousness that Ellie isn't there.  In our Family, someone is always missing.  

“If a mother is mourning not for what she has lost but for what her dead child has lost, it is a comfort to believe that the child has not lost the end for which it was created. And it is a comfort to believe that she herself, in losing her chief or only natural happiness, has not lost a greater thing, that she may still hope to "glorify God and enjoy Him forever." A comfort to the God-aimed, eternal spirit within her. But not to her motherhood. The specifically maternal happiness must be written off. Never, in any place or time, will she have her son on her knees, or bathe him, or tell him a story, or plan for his future, or see her grandchild.” 
― C.S. Lewis, A Grief Observed

I've come to see the last six years very much as I see the Advent song, "Oh Come, Oh Come, Emmanuel" (which has been my very favorite Christmas song for as long as I can remember).  I feel the longing in the lyrics. The melodies groan within me as a people groan for freedom and redemption.  I see myself as a Hebrew, waiting for God to deliver me from Egypt. I see myself as a Hebrew, waiting for God to deliver me from the Wilderness.  I see myself as a Hebrew, waiting for God to bring my Savior.  My Savior HAS come to Earth and I relish in that incredible, undeserving Gift.  I've accepted His gift of Eternal Life and yet as Believers, we still call upon Emmanuel - we still long for Him to move in our lives.  For me personally, I've longed for Him to move us out of certain Seasons (seasons of death, seasons of constant need, seasons of fear, etc).  I've been in this waiting period for a very long time.  In fact, I vividly remember singing this song when Ellie was first on the ventilator, just a few days old.  It's a desperate cry to the Almighty and I know that cry very well.  

“Knock and it shall be opened.' But does knocking mean hammering and kicking the door like a maniac?” 
― C.S. Lewis, A Grief Observed

“For in grief nothing "stays put." One keeps on emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope I am on a spiral?
But if a spiral, am I going up or down it?
How often -- will it be for always? -- how often will the vast emptiness astonish me like a complete novelty and make me say, "I never realized my loss till this moment"? The same leg is cut off time after time.” 
― C.S. Lewis, A Grief Observed

This year, for some reason, God has changed my heart-song for this season.  I'm in awe of this change really, and wondered what God might be doing by changing my heart, moving it on from, "Oh Come, Oh Come, Emmanuel" to, "Oh Holy Night".  A Dear Friend of mine has also been moved by this glorious hymn over Christmas, although the Lord has used in to move us both in very different, beautiful ways.  He's good and creative like that.  

 "A Thrill of Hope . . . " these are the words which God has sweetly placed in my Soul this Season and as we begin 2019.  I jump in excitedly, EXPECTANTLY, now not only for my Emmanuel to come, to step in, to deliver and make things right - but because I am HOPEFUL and thrilled for all God WILL DO through our weary hearts, minds and bodies.  

"A thrill of hope the weary world rejoices,

For yonder breaks a new and glorious morn;

Chorus

Fall on your knees, Oh hear the angel voices!

O night divine! O night when Christ was born.

O night, O holy night, O night divine". . . 

HOPE - for what is to come, because of what has been. 

A GLORIOUS new dawn is seen on the horizon.

The Divine Movement of Father, Son and Spirit 

is worth falling on our knees for!

HOPE.  I speak of it often, mostly in reference to Hope Link.  What does it mean to me today, in this Season, in the now?  HOPE - to me, for this New Year, it means NEW LIFE, goodness, joy; the thick, loving and happy presence of God.  HOPE means GOD is moving me (us) on, moving forward, out of the marsh and muck and onto solid ground.  I see it as a season of safety and light. Merriam Webster definition of HOPE

Job 8:11-13 (NLB), "those who forget God have no hope. They are like rushes without any mire to grow in; or grass without water to keep it alive. Suddenly it begins to wither, even before it is cut".

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Seeing this Christmas Season through, "A Thrill of Hope has been fragile, but sweet.  Sometimes, it's hard to let yourself "hope"; I'm sure many of you know what I am talking about.  This Christmas, as in the last six, I've clung to Jesus like my toddler clings to her daddy when she's really scared, crying-out for him, even in her sleep.  He IS faithful.  He IS true.  HE is the ONLY way I make it through this life of unexpected things, and HE wants to be there with you, too.  

Jesus is God's gift to us, fully-God and fully-Man, He lived in human form, experiencing everything we do - hunger, thirst, anger, fear; He longed for friends on earth and called out to His own Father, clinging to Him when He needed Divine wisdom and help.  He lived a perfect life, for you and for me.  He gave His life, for you and for me. He died a criminal's death, a horrific death and torture, then was buried, as a human.  His earthly body died.  God the Father breathed new life into Jesus, and He came alive again, proving forever and always that God Our Father has POWER over DEATH!  

Romans 1:17 Living Bible (TLB)

17 This Good News tells us that God makes us ready for heaven—makes us right in God’s sight—when we put our faith and trust in Christ to save us. This is accomplished from start to finish by faith.[a] As the Scripture says it, “The man who finds life will find it through trusting God.”*

Precious Friend,  I want you to know about this New Life offered through Jesus Christ - Abundant Life here on earth and Eternal Life after death!  Your life can count for eternity.  When you accept Him as Savior, He promises to never leave you nor forsake you.  You will NEVER be alone, on your own.  He doesn't promise a life without problems, without loss, but He DOES promise to be with you, every step of the way.  I personally couldn't possibly get through one day of NKH, one day of PANDAS, one day of child-loss without having Jesus Christ to carry my burden.   Because of Him, I have HOPE.  He placed Hope within me, an expectant joy for how He will move in and through me.  And, because of my personal relationship with Christ, I have the assurance that I will be with Ellie Kate for eternity!  I want you to have that assurance, especially going into the New Year.  You can start 2019 off being REDEEMED, renewed and restored - there are no magic words or prayers to pray; just share your heart and give Him your everything.  



With a Thrill of Hope,
Ryan

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Oh, Father!  I am yours. Everything I have, everything I love, I lay before you.  I give you all of my dreams, my desires, my wants.  I give you my thoughts and longings, my fears and failures.  Truly, I am nothing without you.  

YOU, Emmanuel, the Great I AM, God With Us.  YOU are EVERYTHING, you've created all things for your glory and for some reason, you were thinking of us when you created it all!  For OUR good and for YOUR glory - why are you so overwhelmingly generous?!?   I am so unworthy of the blessings and redemption you've bestowed. 

You have rescued me from the Valley of the Shadow of Death.  You continue to rescue and relieve me from despair.  You carry my burden and provide for my needs, above and beyond what I could ever hope or imagine!  

THANK YOU for giving me a new song, literally.  A THRILL OF HOPE - I am entering this New Year with thrill and excitement, knowing you are with me; you light my path.  Oh, Father!  I need you for every breath, every thought, every decision.  

I choose to put my trust and hope in you, Creator of All Things, the Protector of my Soul.  Everything I have is yours - my marriage, my children, my talents, my gifts, my earthly possessions; use it for your glory in 2019, Blessed Lord.  I lay it at your feet.