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

My Sweet Little Henry

Henry Is SIX (almost)!!

Tomorrow is Henry's sixth birthday!  Henry is My Promised Child - the only one that God told me that I was going to have!  Not all of you know Henry's story, so I thought I would share it with you in honor of his special day . . .

In 2012, Mike and I felt like the Lord was telling us to have another baby.  This was a crazy thing, seeing that we then knew that each of our pregnancies had a one in four chance of having NKH.  But, God really and truly laid it on our hearts to try for another baby.  I longed to experience the typical newborn experience just one more time.  God gave me Isaiah 43:18-19.  That same day, my Mother called me with those very same verses that God had given her for me.  That evening I received a phone call from one of my best friends.  Guess what God had laid on her heart to encourage me with?  Yep, it was Isaiah 43:18-19. Confirmation was all around us, and God gave us a perfect peace.

Isaiah 43:18-19, "Remember not the former things, nor consider the things of old.  Behold, I am doing a new thing; now it springs forth, do you not perceive it?  I will make a way in the wilderness and rivers in the desert."  

This passage told me that God was going to do a good, new and exciting thing in our lives.  He was going to do something that seemed impossible - making rivers in the desert, something only God could do and something only He could get the glory for!  And before we even tried, we were pregnant!

We did CVS testing with Henry, as we wanted to know as early as possible if he had NKH.  We wanted to have a plan in place, although I felt in my heart that I would have a healthy baby boy.  I was ecstatic to receive the phone call that morning, telling me that this little man was only a carrier with the same DNA mutation as his daddy.  I cried and I danced in our living room while Conner and Ellie Kate were asleep.  I danced before the Lord with joy!  I excitedly called Mike and he let out a huge sigh of relief.  What a precious, priceless gift.

In our family, it turns out that Mike has named the boys and I have named the girls.  Of course, we each have agreed and liked the names that were chosen.  Mike had been reading about Henri Nouwen - an amazing man of God who was a priest, a pastor, a writer, a professor, and among many other things, an aid to a special-needs individual.  Nouwen said that his best and most fulfilling work was done in caring for this young man.  Henri Nouwen actually devoted his life to this man, and lived with him, caring for his every need and pouring into his life while teaching him the love of Jesus.  What an incredible picture of Christ and of what Christianity is all about (or should be all about)!  So, we decided on Henry, which means "Ruler of the Home".  For those who know Henry, you know that his name fits him well!  I knew that this little boy's middle name just had to be Isaiah, as a constant reminder of God's promise and confirmation on his life.  Isaiah means, "YAWEH is Salvation".

Henry was born at 36 weeks on a Sunday evening.  I had invited my Mom, Jayme (Mike's momma) and my sister into the delivery room.  I just knew that one day, I would want to see my grandchildren born (if my daughters-in-law will allow me), and Mike and I really thought that this would be the last chance to invite our family in for this occasion.We had the room at the end of the hall - the biggest delivery room in the hospital.  It had beautiful large windows, and the sky lit up with fireworks.  The Fourth of July is my favorite holiday, so I felt like it was a treat from the Lord to see those firework shows out that window as I was laboring and delivering Henry.  It made me so happy and I felt so loved by the Lord.

Henry weighed in at over 7lbs, which is pretty good for being early!   He smiled at me, honest to goodness! We have a photo of it somewhere.  This little man smiled at his momma on the day he was born - eyes open, staring right at me, with a beaming face. Ever since then, there has been no stopping Henry . . . 

• Henry loves animals.  He always has - every kind of animal, no matter what size or shape.  
• Henry likes to eat.  He has always been a good eater and nursed until he was 27 months old!  He loves fruit and candy (he likes the sweet stuff!).
• Henry loves sports!  His first word was "ball".  On his first bday I gave him a bag of balls, and he loved it.  He gets his hands on a ball any chance he can get.
• Henry is very athletic.  This kid has had an arm on him since he was six months old.  He excels at each sport he tries, and he works hard at all that he does.
• Henry loves Conner.  He has always looked up to Conner and continually compliments him.  
• Henry loves Ellie Kate.  Henry and Ellie didn't get along well while she was on earth.  She liked to wrestle too much and pull and bite at Henry (loving on him in her own way).  But, he talks about Ellie Kate constantly and draws pictures of her each day.  He talks about going to heaven to see EK.
• Henry loves Lucy.  He pats her head and strokes her hair when she's upset.  He gets in her bed and plays with her.  He helps me when I feed and change Lucy too.
• Henry loves his family.  He is a hugger and he loves fiercely! Henry often says, "You are the best mom in the whole world".  He says this about his daddy, brother, sisters, dogs, and grandparents!
• Henry is a giver.  I truly believe his spiritual gift is the gift of GIVING!  He gets so much joy out of giving to others.  Even today, he gave two of his birthday presents away to friends! 
• Henry loves music.  He has a great voice and loves to sing - particularly praise and worship songs. 
• Henry has no fear.  From trying new foods, to going to new places, Henry is all for it.  He even jumped off of the high-dive recently at the pool with some friends!  When he first saw the ocean, he ran right in.  He likes to jump off the top of the car and off of the roof of our home (these two things are NOT condoned by us, by the way).  The world is an exciting adventure to Henry!

My Sweet Henry.  He is such a true, perfect, promised gift.  The first literal gift that God clearly told me He would give me!  Through Henry, God has given me more faith and has stretched me in ways I could never have imagined.  I parent better because of Henry.  I give better because of Henry.  I love better because of Henry, and I'm inspired by his reckless-abandon towards life!

Jesus, thank you for Henry.  Thank you for giving me the promise of this Little Man.  Thank you for letting me live to see that promise fulfilled.  What a joy it is to parent and love Henry.  Thank you for choosing me to be Henry Isaiah's Momma!!