well, we are VERY blessed to have spent the day with Brian & Lisa.  the greatest surprise came when we found out that they were doing THIS for us, Lilly, and the rest of the CF community.

the thoughtfulness of this gesture means so much to us and continually reminds us that we are not in this alone.  if you are visiting this site because of the kindness showed by brian and lisa, then we welcome you and ask that you leave us a comment.  we will continue to keep this blog updated (although not always consistently... as you can see :s)  with news about lilly, her health, and our family in general.  thank you so much for stopping in.

love wins, 

lane, mindy, lilly, & wills

Lessons in the Wilderness

This isn't primarily an update about Lilly; however, since there have been so many praying for her and asking how she is doing, I'm happy to report she is doing much better and believe she is coming "out of the woods." Her chest x-rays came back looking quite good, which was an answer to prayer. Her CT scan of her sinuses is in a few weeks and we are hoping and praying again that all will be clear.

The extra treatments she's in the middle of right now are a total drag to us and especially to her, but we continue to keep perspective as there are others suffering at much deeper levels than we are. The truth remains that no matter where any of us are or have been in our suffering, God is always enough. It's a blessing to see that unfold...to be able to see it, feel it, and taste it.

It hasn't always been that way. Not with only the journey we've been on with our daughter, but all of it. Life. Marriage. Kids. God.

These truths have been laid on my heart, lately & the heart-wrenching words in Hosea have become very dear to me:

"Therefore, behold, I will allure her, and bring her into the wilderness, and speak tenderly to her. And there I will give her her vineyards and make the Valley of Achor ('trouble') a door of hope." Hosea 2:14-15 ESV.

It wasn't until I heard this verse for the first time that I actually...got it. That was me. Even though I considered myself a "Christian" I felt very far from Him.

And in His sovereignty, He allowed that wilderness in my life. The time when I wasn't really trusting Him. The time I didn't really feel love for Him. The days of uncertainty and fear that haunted me. THEN, there in the wilderness, in His perfect timing, began to lead me out of it. And the best part...was how. Harshly? Cruelly? It's what I deserved. It's what Israel deserved. It's what Hosea's wife deserved. But He spoke tenderly to her. Tenderly.

When he dealt with me tenderly, as any wise father will with his daughter or Godly husband will with his wife, it began my understanding of Him. His true character and nature. It also began my love for Him. And from that everything flowed. I do not fear because I know His sovereignty. I trust because I know He loves me. I love my husband because I understand unselfishness. I forgive because He bears the weight of my sin on the cross. And with all of it, I'm still just a sinner saved by His grace. And it keeps me coming back to the foot of the cross.

I feel there are so many still in the wilderness around me. It's not a fun place to be. There's no life there. If you would allow me to encourage you: don't stay there. Soften your heart and begin to let Him lead you out of it. For me that was sincerely asking God to help me, guide me, show me. It was asking God to bring Godly women into my life that could journey with me. It was being honest with myself. It was learning & listening to teachers of the Word and reading the Word myself. It was reading sound books about God and not about how to fix or modify me.

Here's the deal: on the other side is what God desires for you; the deepest, richest life that is only possible with Him. God desires our joy! But first and foremost He desires our holiness. To get us there, he may need to bring us to the wilderness. Like John Piper says, God is the ultimate surgeon. He may need to cut and it may hurt, but ultimately it's for our healing. It's to rid us of the things that are killing us...the things that are robbing true joy to come. Don't settle for the shadow of happiness in this life. There is deep, rich, beautiful joy that awaits in this life that you can feel, touch, and taste. And it only comes from God...the God who finds you in the wilderness and as you nervously cower as He draws near, speaks to you tenderly.

Mindy

this is in no way designed to raise alarm.  it is, however, important to keep people up to date on what is going on. these are the facts; it is important to not add to/take away from what is written here.

the last two months have been rough ones for lilly.  she has been fighting a CHRONIC infection/cough that hasn't gone away with three courses of anti-biotic treatments.  the cough has continually kept her from sleeping well, she is averaging at least a day or two absent from school, and the continual frustration lies in moments when she coughs so hard that she pukes (which is happening more and more often these days).  a few time she has spiked fevers out of the blue, complained of tiredness, and at times complains that her legs hurt so bad she can't walk. 

today we saw her pulmonologist in GR and are going to begin try to get things figured out.  we have a chest xray scheduled for monday, and then she will begin a new 28 day treatment of inhaled and oral antibiotics.  the fear is that the chronic cough would be from either pneumonia or a common but dangerous bacteria to CF patients called pseudomonas A.  both infections are considered treatable but the presence of those types of infections in a CF patient's lungs are both scary and sobering.

in 30 days we are scheduled for a CT scan (scarier than it sounds) to check her sinuses.  considering she has had an infection that has lasted over 2 months, there are things that they want to make sure they aren't missing.  something in her sinuses is not letting the infection go.  she has had double ear-infections as well as just general crud.

it is important to remember that we don't any concrete answers yet.  her doctors are trying to be very thorough and extra certain to not miss anything.   we would appreciate prayers in the following ways:

* that her body would be protected from the course of drugs about to go into her system for the next month.  while obviously meant to "heal" they will also likely wreak a little "havoc" in other areas.

*that answers would be found so she can get back into a regular routine of school & play.

*that we (lane & mindy) would have dedication and patience in the treatment regiment that is to follow.  i made the comment to my best friend on the phone today that at times i just get SO tired of the treatment routine.  this new course will double what is already a long process of giving her daily treatments.

*that we would maintain a logical perspective in all of this.  this disease is not going to take our daughter's life any time soon...  we have treatments and options:  there are those that do not.  there are those that have their time cut short with those that they love much too soon & there are those that continue to fight: the McCrae's, the Chandler's, the Cole's come to my immediate mind.

*that we would ALWAYS remember that He is enough/that He cares for her more than we could ever imagine/ and that ultimately she is in His hands.  God is good regardless of our circumstances.

thanks you all for your love and prayer.  may the Lord hear the cries of His saints for all who are suffering.

lane, mindy, lilly & wills

realized i hadn't thrown this up on here yet.

lilly. year seven

God's gift of rest.

Cystic Fibrosis is a genetic disease that, in a nut shell, eventually scars the lungs to a level where breathing becomes labored and eventually, impossible.  while treatments continue to become more advanced, drugs continue to offer incredible hope for the future, and doctors have never been so sure that they will cure this some day, it still, at the end of the day is a disease where they treat symptoms... not the disease itself.

i share that because last night something really cool happened.  not sure how else to describe it.  our history with this disease over the last 7 years has been one of difficult frustration.  because you really just treat symptoms (uncontrollable coughing), you are often left helpless in moments.  when lilly gets "sick" her cough is constant and unrelenting.  i shared in last night's post about the nights of real frustration when we would lay awake, listening to her cough ALL NIGHT LONG being helpless to do anything about it.  after running the gambit of "relief tactics" (these would include but not limited to: 3 different types of breathing treatments/ chest percussions/ vicks vapo-rub on the feet and chest/ cough drops/ hot tea/ wrapping her in a blanket and sticking her head in the freezer/ propping her nearly straight up with pillows in bed/ to ANY other home-made or prescribed remedy that people recommend) we would just give up for the night and hope & pray that she could get relief.  THIS has been our history for when she gets sick.  a helpless feeling of not knowing what else to do.  THIS is what we felt for the last week as night after night we dealt with this current infection.  the SAME feeling of helplessness and frustration because all we were doing was treating symptoms and NOTHING, as usual, would TRULY help her stop coughing and give her rest.

i share THAT to, again, give a backdrop of what we were facing last night.  when the coughing turned to puking and the puking started to contain blood... we took her to the ER hoping for their wisdom to help in the situation.  at best... to get her fluids to help the vomiting stop... and figure out where the blood was coming from.  i let my dad know and a few friends about lilly heading off to the ER, and in turn posted a request asking for "The Saints" to pray over good ole' Facebook (the prayer chain that reaches 1000's in one click)  :)  Slowly the call went out, and slowly i started to hear back from people that their voices were being lifted up in prayer to the great God of the universe.  One of our close and dear friends even shared that her 6yr. old daughter decided to pray and fast her bedtime snack for Lilly... all the while taking "deep breaths for her since lilly could not" (a precious thought that brought tears to my eyes when i heard about it).

Mindy, meanwhile, was sitting in the ER with Lilly who up to that point, had puked two more times in the hospital.  At one point after getting her IV, Mindy said that she (lilly) laid down her head, closed her eyes... and slept.  No coughing, no vomiting... just rest.  Now that reality could have 100 different explanations, the which i will let you decide... but it didn't end there.  lilly continued to sleep the whole time she was hooked up to her IV and continued to be free from coughing.  when i got the call from mindy 6 hours later that they were headed home, i expected to find lilly in a similar state that she left in, in terms of being unable to stop coughing (keep in mind she has LITERALLY coughed for a week straight... particularly at night... and in that given day it had been the worst).  however, when they got home, i opened up the car to a tired, but smiling little girl.  i took her downstairs, did her standard treatments, and put her to bed.  she didn't cough once through her whole treatments, and last night... she slept... and slept... and slept... and did not cough ONCE.  what was different?  The Saints pestered the great God of the universe, and i think He answered their prayers.

i'm always REAL hesitant to be one of those "people" that claims seemingly simple things were "miracles." i don't know if i would call it a miracle... but i would say that God heard your prayers last night.  God gave her rest... and it will be the start of the healing process... a GREAT start.  your prayers absolutely blanketed her little body last night, and she simply didn't cough.  that may not seem like a big deal, but trust me... with knowing "standard operating procedure" like i do with my daughter, to sleep without ONE cough while battling, among other crap, bronchitis.. she should have continued to cough all night.  the IV was for dehydration... she had no medicine in her that could have done anything to soothe coughing... you can't soothe coughing in a CF patient anyway... it is CHRONIC.  she slept because God heard your prayers (which He always does) and chose to act on them this time... and we are REALLY thankful for it.

so, today has been a good and restful one.  lilly has started coughing a bit more this afternoon again, and tonight will be anyone's guess.  we saw her pulmonologist in grand rapids today, and she got her set-up on everything she needs to kick all this crap.  her docs are GREAT, and we felt blessed to have THEM see her today.  it felt like we actually got to "do" something to help her :)

but God taught me something in the last few days: she is His first, not mine... and He has it all figured out.  that isn't to say, pleading with the great God of the Universe does any harm, but at the end of the day, He loves her more than I do. :)

one last thing:  our story is hardly unique or anywhere near the "worst one" out there, but it continues to give us perspective... and for that we are thankful.  we, as a family, continue to hold up others in prayer who we see suffering a greater battle than we may ever see.  our dear "friend" in dallas or the sweet little girl who is lilly's age in phoenix who are fighting their own battles with brain cancer/ the girl in lilly's class who lost her mother at the start of the year/ or my aunt who lost her groom of 40+ years on thanksgiving day.  

their stories give us perspective and hope and a longing for our day when we "stand on shore and find it heaven/ touch a hand and find it God's/ breathe new air and find it celestial/ wake up in Glory, and find it HOME." 

Love Wins,

Lane, Mindy, Lilly & Wills

First off, this is Mindy writing. Lane has wanted me to contribute to the blog for quite some time, but I haven't quite been ready to jump on that blog bandwagon yet. I felt it was essential though, that I "blog" today, given everything that has happened recently with Lilly.

I cannot say thank you enough times for all the family, friends, churches, and even strangers that have participated in prayer for our little Lilly. I was overwhelmed and humbled by the outpouring of love and support that came through texts, phone calls, emails, facebook, etc. of everyone who was praying. THANK YOU.
I don't know how to properly express what I'm about to explain, because as "Christians" we all use that phrase "I'll be praying for you" and never actually do it -OR- do it, but don't think it's really going to do anything...at least that's been me most of my life. It hasn't been until recently that I've experienced and learned the importance, power and effect of prayer. After all, we are communicating with the Almighty God, Creator of the universe...who yes...is sovereign (Ps. 135:6; Eph.1:9-11; the list goes on..) yet has been known to change his mind (Ex. 32:9-14).

Monday night I sat in the ER with Lilly, after a long week of incessant coughing, no sleep at night, and her sounding worse and worse. She'd been vomiting most of the afternoon and into the evening and that wasn't stopping either. I knew her little body, after already being exhausted, couldn't take much more.
She continued to vomit up all kinds of nasty along with blood even as we sat in the ER waiting room. Her skin was so pale, and her eyes pink underneath, her cheeks spotted with broken blood vessels from all the coughing and all the puking. I've never seen her look worse. She couldn't walk, she was so weak. She just kept saying, "Mommy! Help!" It was one of the bleaker moments of my life...just feeling so helpless. I just kept asking God to help her, and feeling a little bit unsure if He was going to. The tug on my heart during these prayers was always, "I love her even more than you. Do you trust me?" I had to continually make that choice to trust Him.
Lilly got into a room and they hooked her up to some IV fluids, and after SO many nights of no sleep, SO many days of non-stop coughing, SO many hours of non-stop puking, she laid down and just...slept! And for the next 4 hours she just had...peace! I kept waiting for her to start coughing or puking, but she didn't. I had that time to think and pray and I knew people were praying, but it wasn't until later that night I realized HOW MANY PEOPLE were praying for her...so many people! I do not doubt that these hours of peace were the effect of so many of God's people asking for His intervention.
It was also during this time I had precious time to commune with my God. He gave me a great deal of peace, knowing that he loves her more than me. He reminded me that she belongs to Him. He reminded me that this is not the way he designed it to be...and her body will be made perfect one day.
I was also reminded of so many scriptures...some that I've been reading recently and others that I forgot I knew. I kept remembering that, when the storm hits, I have my home built on the strong foundation that is Jesus...but just because my house is built there, it DOESN'T EXEMPT ME FROM THE STORM.
I guess when (not IF, WHEN...)the storms hit, we need to ask ourselves, "Do I trust Him?" Even with our lack of understanding on why bad things happen, especially when it comes to our kids...Do you trust Him? It sounds like an easy Sunday School question, but it's one of the more difficult questions I've ever had to ask myself. I can lie and say "Yes, of course!" But God knows my heart...and the worst lies are the ones we tell ourselves. So do I trust him with everything? Do I know and understand that, no matter what is given to me or taken from me, that He is good? That He is enough? DO I TRUST HIM?

Lilly then ended up sleeping the entire night with no coughing and no more vomiting. It was the first night of sleep she's had in over a week. She woke up feeling refreshed, and her color began coming back. We went up to Grand Rapids today and her docs there, who've treated her since she was a baby, were able to answer more questions for me. She's on double antibiotics, several different breathing treatments, and a steroid to help her kick this double-whammy infection. She sees them again next week.
She's been coughing quite a bit today still, but for the most part is back to being agitated with Wills and up to her sassy ways. I think it's safe to say she's out of the woods for the most part...and I believe with all my heart that that is due to all of your incessant prayers to Jesus. Thank you for pestering Him with your prayers. I felt them and Lilly benefited from them. Continue to pray as she begins to recover.
Again I can't say Thank You enough. I pray that you will trust him with your circumstances as you walk through the storms of life, because He IS good and He IS enough.
"God is our refuge and strength, a very present help in time of trouble." Ps. 46:1.

this was too long for facebook :)

Lilly is home.  They said she "could" have been admitted but thought she would rest better at home, since we are heading to GR tomorrow for her "real" docs to check everything out.  Found out from blood work that she ended up having a UTI on top of everything else... ugh... poor thing.

Lungs sounded good & chest xrays looked good which is a REAL relief and a hope that the blood in the puke may have been from the UTI and not her lungs.  If you don't know a lot about CF, blood in her lungs could/ would be something pretty serious.  this alarmed us more than anything.  At 1st look, though, things looked good. Again, we'll know more tomorrow with her GR docs. 

Would appreciate continued prayer.  Tomorrow is Mindy's birthday, too!! :)

as i write this...

...i'm at home with wills while lilly is in the ER with mindy trying to get uncontrollable puking from bronchitis as well as complications from her CF that at its pinnacle today was causing her to throw up blood along with mucus, under control. we are off to her Pulmonologist in Grand Rapids tomorrow unless they want to get her admitted tonight.  from there, we will see what chest xrays & blood draws tell us.  it could be something "easy" and it could be something "hard" to fight out of her lungs. tis' the season :(

the point of this post is not to be an alarmist.  God is good and He will protect her in whatever fashion He sees fit.  The point of this post is to, perhaps, reflect on the stirring in my soul right now for the brokenness of this world.  it was always in moments like these... or when she is up ALL night coughing and wheezing for deep breaths that i (would) find this anger and frustration stirring in me.  i used to think it was just because it was my own kid hurting... i have not so distant memories of being GENUINELY angry with God for not letting her breathe.  pleading with Him for her to be able to sleep instead of cough so hard she would puke.  i would be a liar to not admit my own cursing at God while holding her in my arms genuinely enraged at what i saw as suffering right in front of me.  this all was coming at a time of INCREDIBLE spiritual immaturity and foolishness on what i thought God "owed" me.  the reality was... i was stinkin' afraid.  afraid of a situation i have/had no control over.  afraid to trust that God, & His plan for my daughter in spite of her disease, was perfect and is His... not mine.

my feelings tonight are different.  I have noticed this lately, but i maybe have been afraid to put it into words lest God would actually challenge me on it... but i'm not afraid tonight.  scratch that... i am afraid... because i still hate seeing her hurt and suffer through all this crap.  but i might say that for the first time in my life as a parent... i think i am actually willing to trust that God is sill, indeed, in control... because there is nothing i can discover, nothing that could happen, nothing that i would/ could/ will lose that will make Him anything less than the great God of the Universe.  That's probably really cliche' sounding... but it is giving ME comfort tonight.  

lilly & i talk often about the days that will come when we will be with Jesus.  a place where simple breath will be perfect & deep. my prayer is that this will bring HER comfort tonight.  a promise that it won't always be like this.  

For He is before all things, and in Him all things hold together. Col. 1.17  

Amen.

today & tomorrow

i thought i would drop a quick note.  it seems like the more life we live, the busier things get and the less time i feel like i have to actually sit down and write.  tonight the kids are in bed next to us in the hotel.  elizabeth mitchell is singing "you are my sunshine" on pandora for a little "night-time" lullaby music. 

we are in Grand Rapids tonight with an 8 hour appointment slated for tomorrow that is a check-up for lilly.  things have been REALLY good lately, and we see some positive changes for lilly.  her lack of any REAL infection for months has been an odd change for the better.  Her 1st four years of life it would be safe to say that she didn't go more than a month without being on SOME type of antibiotic.  Now, in years five and six... we find her having not been on more than 2 or 3 during this last two year time spread.  Some of that would come from her being older and smarter with where she puts her hands, and some of it, we believe, is a WONDERFUL mix of God's provisions through science and doctors as well as His beautiful & protective hand on her life and body.  

mindy and i have talked very recently of the journey this all has been so far.  i can remember like it was YESTERDAY the phone call/ the free-fall of fear my heart, mind, and body went through when we were hit with the diagnosis/ streams of tears/ the hands and bodies of friends and family holding us tightly and just letting us cry.  i'm not sure any of us could have imagined how this would all play out.  we still don't.  but in a real maturing in my faith i have come to understand a few things:  at the end of the day, the great God of the universe loved us so much that he gave lilly to us... exactly as she is.  none of this has caught Him by surprise.  all things pass through His hands.  All things.  this is hard for us to process some times because we think  things are supposed to be "fair."  God is good and so is His plan.  lilly is a part of that plan and so are we... through all of our questions, fears, and triumphs.  may God have the glory especially through the brokenness of this world. 

lastly: everything we have is on loan from us.  everything.  my daughter included.  how much of a blessing and a gift has every day been so far.  i would rather have these last six years with the journey, as it has been, and have it all end tomorrow than not have had it at all.  maybe that sounds silly or simplistic or naive.  to us... it just makes sense.

thank you all for your prayers, encouragement, and love. pray that tomorrow goes quickly.  these days can be long for lilly & mindy.

love wins,

lane, mindy, lilly, wills 

the prayer of my heart

"Oh to behold the Glory of Christ! Here in would I live, Here in would I die, here on would I dwell in my thoughts and my affections until all things here below become as dead and deformed things, and in no longer, any way, calling out for my affections"

John Owen