Birthday-Testimony

Wednesday was my birthday and I am now officially the big 3-7!! Ya'll, I have never had a birthday, in my adult life, where I have felt so loved.  Really and truly, I felt so incredibly special from the time I woke up until well past midnight. 



Special Love on Momma's Birthday

 



The messages I received through texts, emails and FB were overwhelmingly meaningful to me.  I am still reading each one of them; I want to drink in your kind words and let them sink into my heart and into my spirit.  I do hope to respond to each message soon - thank you for your patience.

I was spoiled by a dear friend the morning of my birthday, who gave me a generous surprise birthday gift.  That gift stuck with me the entire day and I felt just a sense of peace.  I FELT LOVED.  My Mother took me shopping for something special.  My husband had the most beautiful cake made for a little party that he put together.  I was impressed that Mike took care of so many little details on my behalf.  The food, drinks, cake, inviting our parents . . . he did such a good job and I am just so proud to be his wife!  I FELT TAKEN CARE OF. 

Beautiful cake made by Heather Thrower

 

Henry helping mommy blow out the candles

 

My Sweet Love

 

As a momma, I wanted to spend time with all of my children on my birthday.  I visited "Ellie's Spot", even though I know it's just her little earthly shell.  I had some special time there then headed home to my earthly babies.  By the end the evening, all  three children had fallen asleep in our bed with me.  We didn't have a night nurse, so Mike took the first shift and I took the second. He caught some sweet photos of us all together.  It really was the most precious thing I could have asked for on my birthday.  I FELT SAFE there in our bed, with our beautiful babies snuggling together.  The same bed where Ellie took her last breath is the same bed that I experienced such a sense of security that night.  Only God, Friends - ONLY GOD - can make something so breathtakingly beautiful come from something so excrutiatingly heartbreaking. 

Feeling Loved.  Feeling taken care of.  Feeling safe. These are three important things that God has so graciously shown  me over my 37 years; three things that He has allowed me to feel and experience for His glory.  I have an overwhelmingly urge from the Spirit to share my testimony with you here, on my birthday week.  It isn't all of my testimony, but it is some, and I do hope you take the time to read it.  I have no doubt that God has a word for someone through these words . . .

You know, the Father has brought me through so much in my life.  I've gone through times of obedience and times of rebellion, just like anyone.  Through my failures and through life's circumstances, I've learned more and more of who God is.  I've gone from seeing Him as a Father for whom I had to perform; One who would love me more, the more good that I did; to NOW seeing Him as an adoring parent, an Abba Father who loves me the same no matter what I do.  In the beginning I had trouble trusting Jesus because I knew I wasn't good enough and I knew I couldn't add up.  But I wanted to be good enough for Him to really love me more than others.  I really, really wanted to be the best Christian ever. 

As a young girl, I had a plan set out for my own life and it mostly depended on ME and how "good" I was.  I would make it all happen because well,  I could do it.  Until I couldn't.  Until I started to fail immeasurably, which was pretty early on, seeing that I accepted Jesus as my Lord and Savior when I was five years of age.  My failings became more visible to me starting in junior high, then more in high school.  Then it was college - in my mind, I had a new chance to start over; to make God even more happy.  But there, I failed more than ever.  

Once I started to see myself failing so much, I decided to give up.  No, I didn't give up on my relationship with Jesus.  I knew I would go to Heaven when I died and my personal relationship with Him was secure.  But I gave up trying to be good.  And I just lived.  And I did what I wanted to do, and I know I hurt others and mostly myself in the process.  I felt empty.  I felt abandoned.  I felt alone. I knew I couldn't perform well enough for God to love me as much as He used to.  Oh, Believer, do you know how twisted that thinking is (God has ALWAYS loved me the same with His perfect, holy love)!  I started to question the Character of God.  I needed to know what was real and what was not.  I needed to know the truth.  Because, if a relationship with Christ meant spinning my wheels or being a hamster on wheel . . . well, I wasn't up for that type of Christianity because I knew I would just keep on failing.

One of the saddest things is that I thought God loved me only because He had to - because I accepted Him as my Savior.  I thought loving me was a burden to Him.  One of my greatest struggles in life is the need I have to please others.  And when I stopped being able to please God (or so I thought), I thought I couldn't be close to him.  He HAD to love me, but He didn't have to like me, or speak to me, or even use me.  He just Had to love me because I had accepted Him as Savior and had given my life to Him.  That's very much how I felt.

At that time, I met Mike and started going to a Church with a pastor who was so incredibly humble and sincere, and not works-based at all. My eyes had never been open to that in church leadership before.  My perception of Christ started to change.  I learned about God the Father, God the Son, and God the Holy Spirit - all THREE of which are incredibly much alive and at work in my life and in the lives of fellow Believers. The Lord showed me that all of my sin was paid for on the cross, so that when He looks at me, He only sees His son Jesus - perfect, and without blemish.  Nothing could make Him love me more.  Nothing could make Him love me less.  When Jesus looks at me, He doesn't see my past failures.  He sees Jesus - His perfect and holy son.  And that is ONLY because of His great love for me and for you, Dear Friend. 

Each and every struggle; each and every rollercoaster twist and turn, has led me deeper and deeper in my walk with Christ.  Do you know why?  Because now, all of these years later, after searching and trying and failing; after not knowing who I was . . .  I now am secure in my identity in Christ.  I know that Jesus loves me know matter what, and that will NEVER change.  And, I know that, no matter what heartache may befall, Jesus is with me.  His Spirit is in me.  And God the Father is causing ALL of it to work for MY good.  Not only that, but He will use all of these things for the GOOD of my marriage and of my children. Romans 8:28 I am His for eternity and He will lavish all the love He has upon me, His beloved child, because He sees Jesus in me.  I don't have to prove myself.  I don't have to do a song and dance routine to earn his favor.  I have His favor as one who has given my life to Him, and His favor for me will never change.

I have experienced more pain in life than I ever thought possible.  I've watched my Daughters suffer.  I've watched our eldest Daughter take her last breaths here on earth. We've seen our boys cry and ache in ways that we don't know how to handle on our own. We have been through times of  pain financially because of medical bills and all the things that go along with them.  And most recently, I've seen the pain from seeing My Henry change so drastically and the maddening feeling that I cannot help him.  Mike and I have seen the stress of our life affect our marriage.  And without Jesus, we wouldn't keep going. Without His grace, His hope, the security we have in Him.  That's what we clinge to.  Even through these struggles in life, GOD'S CHARACTER DOES NOT CHANGE.  He is who He says He is.  And even when evil befalls me, God is there overseeing it all, leaving His Spirit within me to fill me with the words that I need in the darkest of moments.

Within the last while, I've been learning that I cannot depend upon other things for comfort or for safety.  I cannot trust others to fill voids in my life.  I cannot trust things of this world to fill voids either.  I must run to My Jesus, the Author and Finisher of My Faith. 

No person, no title, no comfort, no job, no reputation can feel my voids like My Father can.  And the way I can see and feel him fill those voids is to spend time with Him every day.  I know that is so hard as a mom, but He will allow time.  You can fight for that time alone with Jesus.  And you can pray anytime, ya'll!

I stand before you today and say that I belong to Jesus.   He is FOR me.  He has not forgotten me.  He has great plans for me.  He continues that precious fatherly relationship with me.  I am safe in Jesus because I know that nothing can happen without Him allowing it.  I choose to trust him rather than the passing comforts of this world.  I still struggle in pleasing people, as that is part of who I am as a person.  I long for everyone to like me and understand me, and I long to understand others as well.  But people won't always love me and I cannot please everyone.  I can only choose to sit at the Throne of God and trust Him to lead my words, my heart, my actions and make me more like Him. 

Do you struggle with your identity in Christ?  You aren't alone.  Seek Him a million times over.  He will show you. Cry out to Him in every situation, little prayers, long prayers, one word.  He wants you to seek Him and He will show you who you really are.  Start with His infallible Word.

Do you try to please God with actions so that He will love you more?  Father, break this lie in Jesus name and may your truth clearly reign!  Friend, you do NOT have to work to make God more proud of you.  You do NOT have to do things to make Him love you more.  It's impossible, so surrender it and give up.  Ask Him to show you His lavish love for you. 

Are you in a deep struggle physically, mentally or financially and you can't see God's goodness?  He IS at work for those who love Him; for Believers in Christ.  He IS with you and He IS for you.  HE WILL CAUSE ALL of it to work for your good and for the good of other individuals.  Trust and rest in that.  Listen to me . . . very rarely will it feel like all of the bad you experience will somehow work for good; but it will.  And it will be for His Glory. 

Are you a Believer who feels that they have sinned too much to have God's love, even as a Believer?  You gave your life to Christ early, but at one point, you chose to live a very self-indulgdent life-style.  You are NOT too far gone.  LISTEN TO ME:  As a Believer, You can NEVER be too far gone from Your Father and His love for you.  Father, break the myth that you hold our sins over us!  Break the myth that you don't let them go, that you bring them up to us later in life!  The truth is that, he has separated your sin as far as the east as from the west.  As far away as humanly imaginable. 


Feeling Loved.  Feeling taken care of.  Feeling safe. 

I've felt all of the above this week, even now.  He IS good because that is His character.  He loves you so much, Sweet Believer!  Surrender to Him.  May the reality of Christ's love for you fall over your body, mind and spirit like a warm, heavy rain.   If you have never accepted Christ as Savior, I encourage you to do so NOW.  Do not wait.  Do now wait another minute apart from the lavish love the Father wants to bestow upon you as His son or daughter.  There is truly SO MUCH LIFE within God.  Apart from Him, there is only fear. 

With Hope,
Ryan

From the Brain and Tissue Bank

*WARNING: This post is a little graphic and may not be for the faint-of-heart.

NKH is very rare.  There are less than 500 people world-wide, living with it even now.  This week, our NKH Family lost two precious boys.  And while they are complete and whole now, the pain and suffering they endured on earth does not go unnoticed and the tragedy of their deaths has crippled their parents and everyone who loved them here on earth.  Sadly, this isn't new to us as NKH is considered "terminal".  I honestly cannot tell you how many children have died since we started our journey over nine years ago.  It's painful to think about.

With so few people around the world having NKH, and with it being considered "terminal", there isn't much research being done.  In fact, many doctors do not even know about it, and if they do, their information is sometimes terribly outdated.  One leading doctor here in the US, Dr. Johan Van Hove,  has dedicated his life to researching NKH.  He is the one we have seen in Denver and whom we have met with at all of the NKH Conferences in which we've attended.  We've seen so many families affected; so many children pass away . . . it causes a fire to burn and an urge to fight, if not for a cure, at the very least for better treatment for our children.  As NKH parents, we want them to be able to live better lives, lives that are not filled with chronic pain, seizures, GI issues, cerebral palsy, etc.  We want them to live lives that are filled with eating for pleasure, walking, playing with other children, and maybe even talking!  These things are a possibility because of research, but more of it needs to be done.

When Ellie Kate first went on hospice before she was one year of age, we decided to donate her brain to NKH research.  The leading NKH doctor had talked to us and we knew that NKH brains were needed.  They would help research in so many ways.  So when Ellie Kate went home on hospice in December 2012, we called Dr. Van Hove at Denver Children's Hospital and told him that we once again had decided to donate Ellie's brain and any other tissues that could be helpful in finding better treatment for this awful genetic disease.  This isn't a decision that everyone can make, and I fully understand that.  And I would never judge someone for choosing not to donate their loved ones organs, even if it is for NKH research.  It is an extremely private, intimate decision that only the closest family members can be allowed to make.  And we must respect the decisions that are made and support those who make them.

Today we received a letter from the University of Maryland's Brain and Tissue Bank, the place where Ellie Kate's brain was sent.  I knew what it was before I opened it.  It was the pathology report; the final report on Our Daughter; over two years later.  I let the letter sit there for a while and I debated reading it on my own.  But, Lucy was asleep and the boys were entertained in our bedroom, so I had the living room quiet and all to myself.  I was at peace with opening it, and so I did. 

There isn't much that I gleaned from that report; not much that I could understand.  After all, it was a forensic pathology report and I am not a doctor.  I'm sure the report will be explained to us by our trusted doctors here at some point, and the report of course went to Dr. Van Hove for research.  But, on the last page of that letter, there was a picture.  A microscopic picture of portions of EK's little brain.  Two pictures, actually.  And when I saw them, I broke down.  I wasn't expecting pictures.  I didn't know what to think about that. 

All of a sudden, during my sobbing, my fingers touched those photos.  I did that with Ellie Kate's pictures a lot that first year after she died.  Touching a photo is like touching her, in a way.  And it was no different with these photos.  And that surprised me.  Before I knew it, I was thanking God.  I was thanking God that I had a NEW picture of Ellie Kate.  I know that sounds so strange, Friends and if you haven't lost a loved one, then I don't think you will understand that this reaction is "okay", but it is.  It's okay.  I am SO grateful, that even after My Daughter died, I was able to see a picture of a part of her - a part of her that grew inside of me.  How precious is that?  Twistedly precious?  Maybe so, but precious to me nonetheless.  I. Am. Grateful.  God knew, back when I signed the papers to donate, that a little over two years in the future, I would need to see a picture of Ellie Kate.  He's Sovereign and what happened today was NOT an accident, of that I am sure.  I want to be clear: I do not see this as a cruel act; that this letter had to come to us and that we had to see those pictures.  I'm thankful that I have a God, who is so tender-hearted, that He sent this to me on this day, for His purpose.  It is for my good.  For Mike's good.  It's a gift - that's how I choose to see it. 

I don't know how to end this post.  I truly hope it wasn't too upsetting for you to read.  I don't want that at all.  What I want from this blog is for all of you to see the good, bad and ugly of the life of a special-needs family; the life of a family dealing with child-loss, while striving to love Jesus with all of their hearts (and we so often fail, just like everyone else).  We do have a prayer request tonight - Lucy had a lot of seizures today and is still having diarrhea (going on three weeks now although nothing has grown in cultures - yay!).  Would you pray that she isn't getting sick?  And, Friends - love your babies.  Take lots of pictures.  Cherish the ones you love while they are here on earth with you. 

http://www.nkh-network.org/whatisnkh

The Similarities and The Reality

My Sweet Loves

 

 

Precious Sisters

 

 

 

Do you see it?  Can you tell which picture is of Ellie Kate and which is of Lucy Belle?  It takes my breath away so often, especially lately.  Lucy is a little girl now, and not a toddler.  Her body is lean and long, just like her big sister's.  Her feminine mannerisms are JUST like that of Ellie Kate, and it's amazing to me, because they obviously aren't learned behaviors.  My daughters are both just very feminine little girls who love to cross their legs and move their hands in dainty ways.  Don't get me wrong, they both are spit-fires and have the tomboy side too!  But the feminine way that they both move . . . it's so dainty and girlie.  Sisters.

We used to call Ellie Kate "Wildcat", because she would turn on you like a dime, and out of nowhere, her claws would scratch you and her teeth would be after your flesh - laughing the entire time with that deep giggle of hers.  In turn, we called Lucy "Kittycat" because she had the tiniest cry in the beginning that she literally sounded like a baby kitty!  But now, Lucy has turned into the Wildcat in her own rite. 

 

The similarities are such a blessing.  They are a sweet breath from the heart of God; a balm to my soul that heals like no other.  At the very same time, at the very same time, I am thanking the Father for those priceless, perfect reminders, I am hit with the intensity of our reality.  Our reality - where both of our daughters were born with a rare and terminal genetic disorder.  Our reality - where we have watched our Beloved Daughter take her last breath.  Our reality - where we take our boys and our baby girl to visit their sister's earthly shell at the cemetery.  A reality where we live each day knowing that, at some point in time, unless God heals Lucy here on earth, we will also be visiting her grave beside her Big Sister's.  The similarities and the realities - they are endearing and unbearable at the very same time. 

 

 

 

Those same similarities and realities spill over into the lives of Conner and Henry, and as ya'll know, both of these things take a toll on Our Boys.  It hurts my heart to see, that what sparks a happy family moment, also sparks the thought of what life will be like without Lucy.  And a walk through Target can make you excited because you get to see the toys, but also sad as you walk by the area where we bought Ellie's clothes, and you look through those clothes and choose what ones Ellie would have liked and what we would have bought for her, if she was still alive.  And sometimes . . . that understandably brings anxiety to Conner and to Henry.  And although Henry's outbursts have all but disappeared since his oral surgery, his anxiety over Ellie's death and Lucy's possible death, confuses his hurting mind and heart even more.  That's when I have to trust.  I have to CHOOSE to trust that God causes ALL THINGS to work together for the good of Henry.  God loves Henry more than I do.  He wants good things for Henry - even more than I want good things for Henry.  And He wants Henry to have a full, loving, abundant life here on earth (that doesn't mean there won't be heartache, but God does want us to enjoy the life that He gives to us).  I'm choosing to trust, Lord. 

 

 

Mike and I are fighting to trust, that's for sure.  But we also want to do what's best for the boys and try to make this strange, crazy, roller-coaster life, as easy and as clear as possible.  That of course, will look different at different times.  Right now, Henry has a lot of anxiety in our home.  We've noticed that a switch comes on when he walks in the door of this house, and he is even able to verbalize those bad feelings (I am SO proud of him for using I his words to tell us how he feels!!).  So many memories are in this great house - memories of us with Ellie Kate.  Memories of us bringing Lucy home from the hospital.  Memories of the first days of school.  But there are also a lot of really, really hard memories such as memories of Ellie passing away in our home.  Memories of them wheeling her precious, broken body out the front door.  And while we try our best to protect the boys, there will always be bad memories; everyone has them, right?  There are just a lot of bad memories for Henry that are attached to our house and he is begging for us to move and for him to switch schools.  Bless his heart, he just wants a new beginning, and I can't really blame him; I want one too!  Mike and I both do.

 

 

 

We would love prayer concerning this very thing - MOVING.  Mike has a wonderful job.  Although we've tried to make things work by planning to live elsewhere in the Metro, God has clearly shown us (over and over and over again), that we need to stay in this area.  Our hearts are still with our beloved Bridgeway Church, and we have absolutely NO plans to move from our Church Home.  It's just the house and this itching for something new and the possible real, tangible need to make that a reality in the near future.  Of course, God would TRULY have to make that happen on so many levels.  We've seen Him work in big ways before and honestly, letting house ideas/the right house/medical debt-reduction/perfect timing/etc, would be so much easier than parting the Red Sea (in my mind, at least).  If He wants it to happen, it will happen.  I have no doubt (but I'm human and I doubt those details and I sometimes want things outside of God's timing). 

Thank you for staying with me in this very heavy update, Dear Friends.  We love you so much.  We covet your prayers.  We choose to trust God and His plans. 

-Ryan

You've Got a Friend In Me

This past week, we have been loved on by several dear friends.  It felt like we were back in "Ellie Kate Times" actually, with people bringing over meals and goodies.  It was so refreshing to my heart!  Special treats on the porch, wonderful meals for my family, yummy goodies for all of us to munch on during our crazy week . . . friendship was put on display for us once again, and that is something that I do not take lightly.

Sweet goodies left on our porch last week.  One of my love languages!

When you take time out for someone else; when you use your resources, sacrifice your time and energy;when you choose to do for others rather than do for yourself . . . that's friendship.  That is *Reckless Love, which we continue to learn about and experience because of Ellie Kate.

*Reckless Love (the Mike and Ryan definition): 

Reckless Love is taking intentional action in order to benefit the life of another without worrying about the consequences. 

On Saturday evening, some of our best friends invited us over for dinner.  They insisted on taking care of every detail, and honestly I couldn't have helped even if I wanted to.  I just didn't have the energy.  Henry was feeling great and Lucy was much better, so we loaded everyone up and headed to our friends', suction machine, breathing treatments, etc in tow.

Lucy was tired and fussy much of the time, but she perked up because we were at her best friend's house.  Jazzy has loved both Ellie Kate AND Lucy, but she has been able to spend the most time with Lu Lu.  When Jazzy comes over to our house, she jumps right in, playing in Lucy's room and with her toys.  She plays with Lucy.  Do you know what that means to me?  And on this night, Jazzy had made some special valentines, just for Lucy Belle.  

NOTE: I'm not sure why our photos are so fuzzy.  I desperately tried to fix them over and over again.  I'm sorry you can't see them clearly, but they are still so precious!  

Sweet Valentines

She also wanted to play "dress-up" with Lucy.  "Hmmmm . . . I'm not sure that's gonna work", that's what was going through my mind, at least.  But Jazzy and her friend ran in with costumes and wigs and all sorts of things, and were ready to dress Lucy up then and there.  And you know what?  They DID dress her up, and SHE.LOVED.IT.  She loved it!  I was tearing up and taking pictures like crazy.  The other girls dressed up too, playing "princesses".  It was the sweetest thing I had ever seen Lucy experience.  She was playing with her friends - friends who didn't care that she was different than they are, friends who love her and dote on her no matter what.  I'm praying that the memory of that evening will stay with me for the rest of my life.  Lucy was SO happy, ya'll!  Lucy has FRIENDS!  She loves her friends and now she can play with them.  It is amazingly beautiful to me.

Every little girl loves to play dress up! 

Jazzy's friendship with Lucy got me thinking . . . she loves Lucy even though Lucy cannot talk or tell her how wonderful she is.  Lucy can give nothing back to her friend other than smiles, pats and pulls on her golden hair.  Jazzy does this out of pure love and servant-hood, which God has placed within her heart and because that is what is lived out in front of her through her parents.  Do I love my friends this way?  Loving and serving even when they have nothing to give in return? Do you?  That's the way Jesus loves us and that's how we are called to love the world.

The best of friends

What do you live out in front of your children?  Is it servant-hood?  Do you live out reckless love, sacrificing your time and resources for those who are hurting?  For the sick, the widow, the orphan, the poor (including the poor in spirit)?  Do you live out your life like Jesus did, spending time with those who are in need, or are you caught up in you?  Is your focus on the things of this world, gaining the attention of others, finding success as the world defines it?  Or do you make the needs of others a priority?  It's something we all need to face, to think about as parents.  We are raising a generation of leaders, folks.  May we raise them to be servant-hearted, lovers of God and lovers of people!  May it become second-nature to us, and to our children;a legacy that is passed on for generations to come, for the glory of God.  Loving others recklessly without wanting anything in return.  

John 15:13(ESV) - "Greater love has no one than this, that someone lay down his life for his friends".

Thank you, Lord for showing me what true friendship is all about.  It's not about receiving, but about loving unconditionally and recklessly.  It's about giving even when I do not have, serving even when it isn't comfortable.  I am eternally grateful that my parents still live this out in front of me, and I pray that Mike and I will live this out boldly in front of our children.  May they learn to love YOU well and to love OTHERS well, because of what they see the Holy Spirit doing in us.  And Father, thank you for giving My Lu Lu friends!  And thank you for letting us witness such a precious event. You are SO GOOD. 

 - Ryan

1 Corinthians 13 (ESV) - 

13 If I speak in the tongues of men and of angels, but have not love, I am a noisy gong or a clanging cymbal. 2 And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to remove mountains, but have not love, I am nothing. 3 If I give away all I have, and if I deliver up my body to be burned,[a] but have not love, I gain nothing.

4 Love is patient and kind; love does not envy or boast; it is not arrogant 5 or rude. It does not insist on its own way; it is not irritable or resentful;[b] 6 it does not rejoice at wrongdoing, but rejoices with the truth. 7 Love bears all things, believes all things, hopes all things, endures all things.

8 Love never ends. As for prophecies, they will pass away; as for tongues, they will cease; as for knowledge, it will pass away. 9 For we know in part and we prophesy in part, 10 but when the perfect comes, the partial will pass away.11 When I was a child, I spoke like a child, I thought like a child, I reasoned like a child. When I became a man, I gave up childish ways. 12 For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known.

13 So now faith, hope, and love abide, these three; but the greatest of these is love.

*More on Reckless Love: 

What do we mean by "Reckless Love"?  What we mean is this (and it's very much a 'Mike and Ryan definition'):  

• "Love" should be a verb, an action; it's not just a feeling, because our feelings pass and fail us.  
• "Reckless" means to be unconcerned with the consequences of an action; to test the limits and not worry about what might happen, be it good or bad.  

Reckless Love is taking intentional action in order to benefit the life of another

without worrying about the consequences. 

It's stepping up and out and loving, even if it feels awkward, 

even if it causes a stir in your household, community or place of work.

Oh, What A Ride!

We've often compared the life of a special-needs parent to that of an intense roller-coaster.  Maybe that's just true for everyone.  But I have to say, those special-needs parents and those dealing with serious illness in their families, have a lot more of those violent turns and drops than most.  

Yesterday was one of those days where I literally felt like I was jolted back and forth and spun around and upside-down.  We were in Edmond, Deer Creek, Bethany (twice), and Moore. I had two extremely important doctor appointments that had to be done yesterday a midst the chaos and unfortunately, they couldn't be postponed.  Lucy was very sick with her RSV but we had to take her with us to Henry's surgery.  We ended it late last night with a visit from one of our special home health nurses, who delivered some equipment for Lucy.  IT.WAS.WILD.

Thursday night was incredibly rough for Lucy.  Her 02 levels went down many times during the night because of her RSV.  We had been giving her breathing treatments, and the suction machine, along with all of the other tricks we have to help her, but her wheezing was getting worse.  Thankfully, the Lord had it so that our most detailed nurse was there overnight and she stayed by Lucy's side the entire time.

It was a tough situation.  If Lucy was in need of critical treatment, then we would have taken her to the hospital.  But, we HAD to help Henry and allow him to have his infected tooth removed in order to help his PANDAS.  So, while we waited for our oxygen and pulse-ox from home health, I was able to pick up oxygen from an amazing Hope Link mom who was eager to help in our time of need (I LOVE our Hope Link 'village').  We had everything that the hospital would have used to care for Lucy, so we loaded it all up and headed to the surgery center for Henry Mac.

Lucy was in the waiting room with Mike, on oxygen, suction machine being used, pulse-ox attached (we were quite the spectacle, ya'll).  I was back with Henry, who was on sensory overload.  PANDAS causes sensory issues, heightened senses, essentially.  Henry felt threatened and super vulnerable. He hates taking liquid meds because of how they "feel" to him, but bless his heart, he did try with the liquid versed (after LOTS of coercing and um, begging and bribing).  He screamed when it went into his mouth and up it came, all over the floor.  He told me it made his tongue feel like it was on fire.  I felt so horrible for him, and so did the sweet nurse.  She was so apologetic and empathetic; we couldn't have asked for a better person to help with Henry.

Since Henry couldn't take the versed, and since it set him off into some bad behavior, the anesthesiologist had to get creative.  He, along with a team of nurses, had to hold Henry down and give him a shot to calm him down.  It just had to be done to get him back to the operating room.  I had to remind myself that this was something that HAD to be done.  He had an infection that was making his brain misfire, and we had to take that infected tooth out.  Good thing too, because the doctor said that the tooth was infected all the way to the root, and that there was a huge pus-pocket in Henry's mouth, which I didn't see.  The doctor couldn't believe that the tooth hadn't caused Henry to excruciating pain and hadn't caused him to be sicker than he was.  Thank you, Lord for letting us get that tooth out!!

Once we got home and I was on my own, Lucy needed a breathing treatment and Henry started vomiting.  I was holding her down, desperately trying get the nebulizer near her mouth and Henry was wondering around the backyard in a drug-induced stooper.  Guys, really and truly, all I could do was laugh!  At least it was a beautiful day, right?!  The sun was shining.  We had made it through surgery and the tooth was out.  And we were home and had oxygen.  Conner was almost home from school.  Life is good.  LIFE. IS. GOOD.

It's a WILD ride!  You just gotta smile! 

Although there were some unexpected twists and turns with the doctor's office and nursing agency, and even though I had to be a momma-bear on behalf of Lu Lu Belle, and even though we had to stay up late when we hoped to go to bed super early because we were super tired . . .  God took care of us.  He had those roller coaster seat belts nice and tight, keeping us safe and sound.  And, when the day was done, Mike and I were happy.  Happy to be home and not in the hospital.  Happy to have the equipment that Lucy needed.  Happy that Henry's surgery was over and done.  Happy that we were together and that we survived.  

And you know what else made me super happy?  My Sweet Conner Mac, my eldest son, who gave a special valentine to a special girl for the first time yesterday at school.  And he "dressed up" and worked on his hair and excitedly gave that hand-picked gift (candy and a minecraft book, because 'that's what she likes, mom') to this cute little girl who now shares the affections of My Son.

Be still, My Heart!!

Sometimes we have to choose to be happy.  Sometimes we have to CHOOSE to enjoy the ride.  Sometimes we have choose to even STAY on that ride!  But sometimes, God gives us so much grace, that we feel happy in the craziest of circumstances, because we know that He is Sovereign and because He has it all planned out. Nothing can happen in my life, or in yours, that God doesn't allow. So we can trust him.  May the Father give you grace today, My Friend.  May you bubble over in happiness, even in the strangest of circumstances, so that He alone may be glorified.  

Lucy, My Belle

Hi, All.  Many of you saw my Facebook post last night about Sweet Lucy.  She is pretty sick, although we are able to care for her at home at this time.

Last night was really rough.  Lucy had the most intense seizure activity that she's had since she was a few months old and inpatient.  It was scary for us, but her sats stayed high, which is a VERY good thing, so we stayed home and watched her all night (we didn't have a night nurse).  We had to give rescue meds for her seizure activity and she even had some after they were administered.

Right now I dread going to the hospital.  I absolutely dread a hospital stay.  We were in "go" and "crisis" mode for seven long years, and Ellie passed away, we've been out of that.  The longer we go without being admitted, the more I dread having to be there.  Does that makes sense?  Lucy is at the peak (or close to it) of her illness, so we are hoping to get through today and tomorrow without any major health declines.

As I mentioned yesterday, Henry is in a good place (minus his tics).  I'm afraid that if we are admitted, it will completely throw him off and we will have to start at the beginning.  I am fearful of that, Friends.  So worried.  

I'm trying to "cast all  my cares upon Him" right now.  Sometimes it's a choice and your feelings are even there, you know what I mean?  I'm choosing to cast and throw (hard).

We covet your prayers for our Little Lu Lu.

Lu Lu on Monday, enjoying the weather

Lu Lu today, so precious

In The Trenches

We are in the trenches, ya'll.  Lucy is sick.  I'm suctioning her many times a day and her little nose is bright red, dry and cracked.  She doesn't know how to blow her nose or cough up gunk, so she chokes on it, and it's so scary to me.  My Little Princess is just miserable and nothing is making her comfortable.  We are also having nursing issues which is frustrating in situations like this.  When we need home health the most; well, that's when we seem to have the problems.  So, Mike and I will take turns staying up all night with Lucy so that we can suction her as needed and stay on top of things as far as her care goes.

The antibiotic we started last weekend for Henry's PANDAS flare is helping SO much!  He has calmed down and we haven't seen any violence for several days.  He is back to his sweet self in so many ways!  I cannot tell you what a HUGE relief this is.  It broke my heart the other day when the school told me that they thought something was "off" with Henry because He was so calm and happy.  But you know what?  That's just the real Henry!  Our sweet boy, and people aren't getting to see the real Henry because of PANDAS and all that comes along with it.

Today, Henry's tics have drastically increased.  His tics come in vocal form and they are sporatic.  I don't know what sets them off.  I just know that something is going on in Henry's body that I do not understand.  Something just isn't working right.

Honestly, it is SO hard to truly trust the Father in times like this, here in the trenches.  I feel like I'm on my belly, crawling in the dark, with thick mud caking my body.  It's hard to see where I am going.  It's hard to even see my target.  But I will keep going and I will keep moving on because I know My God is faithful, even when I do see it or feel it.  Even when I feel so heavy; He is in control.

Are you in the trenches?  Is it hard to see what's ahead of you?  Maybe you are even having trouble hearing your Commander tell you which was to go.  You can trust Jesus.  Even in the dark.  Even in the mud.  He is with us and He will never leave.  And you know what?  Some way, some how, He will cause the trenches experience to work for your good.  He promises that for those who love Him.

*Please pray for Lucy as she's having some really hard seizures right now (Mike just came in and got me and we've given rescue meds).

Ryan