24 Hours

In just 24 hours, Lucy Belle McLaughlin will be SIX years old!  It's hard to believe that this Precious Little Gift-of-a-Girl was laid in my arms that long ago. Lucy is our dainty, feminine, "Beautiful Light", and I am happy to say that Our Birthday Girl is now HOME from the hospital!

We are incredibly grateful that the Lord has mercifully allowed Lucy's gut to work in this moment and that He has allowed her more time with us here on earth!  When we entered the hospital this last time, we truly did not know what would happen and even now, no one can tell us what will happen with Lucy Belle and her health or how long we will still have the joy of holding her here in our arms.


During this last hospital stay, we tried to find definite conclusions on why Lucy's seizure activity has increased so greatly, why she's had these terrible tremors, why she continually falls asleep, and why her balance is off, causing her to constantly fall from side to side.  Along with the doctors, we've tried to make sense out of Lucy's tummy issues,  searching for answers as to why, at times, she can't process her formula and medications.  We've tried to test and figure out why she's still having so many UTI's, why she's holding her urine for so long, and seems unable to void in every way.  The only conclusion we positively have is that NKH is progressing in Lucy Belle and, at this time, it's progressing much more quickly than we would like to believe.  

Lucy is home, but she isn't the same and I don't know that she ever will be.  She stays awake for only minutes at a time, then literally falls over into deep sleep. Her body tremors and twitches constantly, although it is NO where near the severity as when we last brought her to the ER.  Her actions truly remind us of those Ellie Kate's in her last days, which is strange and difficult. In fact,  looking back, Ellie Kate was struggling with many of these same things EXACTLY five years ago at this very same time, but we weren't fully aware of the short time we would have with her (less than three months).  This time, we aren't so naive and we will treasure each moment, each struggle, each day, with great value and sentiment.  We are treasuring these days, while allowing the Lord to prepare our hearts for the worst.  The physical decline is painfully evident, so we've made a few preparations for what we know will come sooner than we could ever hope. Oh, how we LOVE our LUCY!

The Body of Christ has surrounded us so beautifully, you guys and we are TRULY blown-away!  We didn't know what to expect at all, especially since we've left our Church Home of over 16 years.  Mike and I didn't expect any type of support at all during this time, really and truly - that's why the outpouring of support has been that much more encouraging!  God has lifted our spirits, renewed our hearts, and sparked our faith through the actions of His People - many of whom we don't even personally know.  It's an unimaginable treasure during a time we've needed to see Him move on our behalf - when we've felt alone and lost in so many ways.  Isn't God good to step in like He does?  It's never how WE would picture or plan and yet, it's always so much richer and more-encompassing than anything we could hope for!  Truly, I CANNOT WAIT to tell you all God has done for us through His People (but I will save that for the next post)!!

As for the Birthday Girl, since hospital stays have caused delay in celebration plans, I'm busy trying to make this sixth birthday the most happy one yet, even while on Hospice!  Lucy has finally decided on Unicorns and "My Little Pony" for the theme again, after she's fallen back in love with her ponies during this recent hospital stay.  Our plan is to try for a skating birthday party, where we can wheel Lucy around the rink in her chair.  She's pretty excited at the thought of it so far and lights up with excitement when we mention her Big Day.

We've had some questions pop-up recently concerning Lucy and our family, so I wanted to answer those clearly here on the blog . . . 

• Care Calendar - a precious friend is heading up a calendar where you can sign up to help our family in various ways.  We are incredibly grateful for everyone who is helping us in so many ways, allowing us to focus on Lucy and catch up on homeschooling for Henry!  To help, simply go to the following: lotsa helping hands care calendar
• Go Fund Me Page - we do NOT have such a page, nor are we interested in having one at this time, although we are grateful for the offers and suggestions of those wanting to help us financially during this time.  The best way to do this is through our Helping Hands account, where you can receive a tax write-off for your donation and can be assured that your funds go solely toward our medical needs.  With this organization, we turn in our receipts or bills directly, thus receiving the utmost accountability with your generosity.  For more information, please go to the the following:  McLaughlin Family Helping Hands Fund
• We still have Lucy's "Life List", but apart from getting Lucy to the beach and allowing her to feel the ocean, we really just want to spend time with her here at home.  This seems to be what her little body wants as well and we are set on listening to Lucy's body during this time, as we want whatever is the very best for her and what will keep her the most happy and at peace. 

From the bottom of our hearts, thank you for loving us and serving us during this time.

Ryan