one year ago

You were reaching through the storm
Walking on the water
Even when I could not see
In the middle of it all
When I thought You were a thousand miles away
Not for a moment did You forsake me

After all You are constant
After all You are only good
After all You are sovereign
Not for a moment will You forsake me

(Meredith Andrews- Not for a Moment) http://www.meredithandrews.com

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So, it is almost 3 in the morning and I can't sleep.  This time last year, we would have still been doing everything we could to calm our sweet girl and get her to sleep.  It still surprises me that we made it through the nights of not going to sleep until 5 or 6 a.m. regularly.  My mind has been racing tonight about all that has happened in one year.  This weekend last year was when I went to Little Rock by myself to spend time with my family (they ran the 10K in Little Rock for my Lyme disease)...and I laid in bed sobbing.  I cried pretty much that entire weekend.  I remember walking in and seeing mom and Leah and just losing it...then repeated that when I saw Lauren.  Weeks and weeks of no sleep will do that to a person.  I cried for what Chris and I were going though with Eliana.  I cried over not being able to "fix" my sweet girl.  I cried because I had to be so strong at home.  I cried because "why in the world would I have lyme disease" on top of everything else.  I cried because my house was a complete disaster.  I just longed for some sense of normalcy and we were nowhere near that.  My family just listened and cried and honestly, I have a terrible memory and don't remember everything.  They told me later that they were all worried I was headed for a complete nervous breakdown.  I think I was.  And that's when God showed up in a miraculous way.  It didn't feel miraculous at the time.  I'm pretty sure I shouted "really God" or "you've got to be kidding me"?!!!  I got the call from Eliana's school in Little Rock that Eliana was being taken by an ambulance to the hospital having multiple seizures.  My baby was having seizures and I was 6 hours away.  I don't remember a lot of the drive to the hospital, but I made it before she woke up.  I walked in and saw her tiny body covered in wires and attached to machines.  We spent that week telling and re-telling our story.  It was then that the doctors finally understood what we were saying about her mania and no sleep.  They were shocked that we had lived this for so long...that she could fight sleep they way she did.  They were surprised by her strength during rages and her terror of the night.  They finally listened to us...we had been telling doctors for a long time and they got to witness it.  Even now, I just sigh remembering the relief of someone telling us "we don't know how you've been doing this every night."  A few powerful medicines later and Eliana was beginning to sleep through the night.  Miracle.  Thank you Jesus.  This was the beginning of her healing journey...I really believe it.

It's been one year.  One year of crying out to God on Eliana's behalf...praying for more miracles, for healing of the trauma she obviously experienced as a baby.  There are moments where I forget all that He has done...but tonight I know without a shadow of a doubt that He has NEVER forsaken us.  He has been with us every single step of this journey and He won't leave us.  He loves Eliana way more than we ever could.  He rescued her from who even knows (and I'm not sure I want to know)...and made her a Wheeler.  She is ours in every way...and we love everything about her.  We will continue to fight for her...to beg doctors to understand her...to make sure she feels safe and loved.  In one year, we've come a long way and I don't want to forget that.  We have a long way to go, but I'm praising God tonight that He is with us.  Thank you friends for loving us, for giving to us, and for praying for us.  We still need it desperately. It's been a really rough few weeks, but I feel hope tonight just thanking God for this last year.  Love you so much.

Lindsey

happy nine years

It is so hard to believe that I walked down the aisle to marry my best friend 9 years ago today!!  I can honestly say that I love him more every single day.  I do.  He has taken every vow so seriously...and worked to keep our marriage pure and holy...and fun.  I know just how rare that is today.  We had no idea all that was going to be thrown our way...but I'm so thankful I've been able to battle life out with my best friend.  We have made it through countless nights of no sleep...of things that only the two of us will ever understand or know...and we have come out stronger because of it.  We have made plenty of mistakes, but he keeps me laughing (and rolling my eyes) every single day.  I told my mom today that he is one in a million.  He is.  He is strong and courageous.  He leads us well.  He works so hard to provide for our family, but doesn't bring work home with him.  He plays hard and loves hard.  He is the best daddy in the world to a little girl that has no idea how blessed she is...one day soon she will know and get it.  He is passionate about everything he does whether it's changing our entire food lifestyle to fishing lures...he is going to do it all out.  I love how the little things excite him and he is still grateful for every gift that is given to him.  I love how he prays with me EVERY single night.  He prays for things and people who are important to me...and believes in healing for Eliana and me.  He has never doubted me or questioned me.  He doesn't complain.  He brings me water every single night (I love this).  I look at him some days and wonder how he is still standing...how he has not had a full-blown emotional/physical melt down because E and I are not easy.  He keeps pressing forward believing God for good things...which in return, keeps me from losing hope.  He is a good man.  He is my best friend...I would rather be with him than anyone else in the world.  Happy 9th anniversary!  I love you.

Lindsey

our baby girl

There are so many things I want to say but don't even know where to start.  I have written and erased this blog post quite a few times over the last week.  Our baby girl is struggling.  She is five years old...can talk and reason...and her fears seem to multiply daily.  Her OCD symptoms get worse every day (that is an entirely different blog post). She is more aware of her surroundings which has led her to feel more anxious.  She is hilarious and precious and loving...and plagued with anxiety.  It's not anxiety that you or I feel...it's deep.  It's intense.  It's indescribable.  She is always on guard.  We are walking on eggshells.  Chris and I feel like we have done everything on this side of heaven to make her feel safe (and will not give up).  We have committed to it just being the three of us (unless God really surprises us), so that she will get everything humanly possible.  We want to be able to focus on her and love her well through her struggles.  We are willing to spend whatever it takes, bring on whatever therapist she needs, and let her wear pajamas as much as she wants.  We have been meeting with an incredible in-home therapist for 2 hours a week.  She has offered so much insight because she has an adopted son that has gone through a very similar journey.

I hate typing this because I don't want it to be true.  But, something is not right in her little brain right now.  She has been struggling to sleep again.  Every night, she talks about how scared she is to fall asleep.  And, she is.  Selfishly, this is one of the most difficult parts for Chris and me.  It's exhausting to say the least.  She has been sleeping in a pack n' play for babies for the last week (part of her OCD)...and that is not working out.  Her sleep is disturbed.  She is staying up late and waking up early.  The part that is the most heart-breaking is the manic episodes.  They can last for hours and are physically exhausting for all of us.  We have to make sure she isn't going to hurt herself or us...but our baby girl is STRONG.  Chris can barely hold her safely...and I can't at all.  We just whisper truths to her the best we know how..."you are safe"...."we aren't going to leave you"..."we are protecting you"..."Jesus loves you".  It takes an incredible amount of patience and perseverance to remain calm through these episodes because they are loud, scary, and out-of-control.  Chris and I are a team.  We are able to watch and figure out how the other person is doing...when one of us is weak, the other is strong.  And a lot of times, once she is asleep...we cry or pray or high-five...and prepare ourselves for another day.  The picture above was taken the other night after an hour and a half episode.  She finally gave in and fell asleep in my arms to me rocking her.  Sweet girl!!  I love her more and more each day.  We both do.  We can't imagine our lives without her or what we did before her.  We want to see her FREE of this pain.

We really would love your prayers.  We are trying to get into a new psychiatrist in Nashville that is supposed to be awesome!  We are in desperate need of a change.  Please pray that he will take us on and that we could get in this week.  I know that we are going to be changing up some of her medications, which is a scary thing for someone as tiny and young as Eliana.  Pray for her little body to adjust and for us to find the perfect combination of drugs to help calm her little mind.  Not surprising to us, this new doctor doesn't take insurance...neither does my Lyme detox...or her therapist.  So, we are praying for more financial provision.  Please pray for us as we navigate through all of the expenses for our healing.  We love y'all so much and are so thankful for a community of people that love us and pray for us.  I've said it before and I'll probably say it again...we could not do this without you.

Much love,
Lindsey

P.S.  We are still going strong with our "real food" lifestyle!!  Today was our 45th day of no gluten, no sugar, no dairy and quite a few other things.  I have had a few really good days over the last few weeks...so that is a huge praise.  :)

let food be thy medicine

When Chris and I got back to Franklin from Christmas break, we knew that a lot needed to change.  Looking back on 2012, I realized that I had spent so much of 2012 just "making it"...begging God for a miracle...for healing and change.  But, I wasn't really holding up my end of the bargain.  It wasn't necessarily anyone's fault, but Chris and I did not eat great.  We ate what was easy...what was cheap.  My fatigue and pain put us in a position of relying on fast food to bring us our dinners because I didn't have the energy to go to the store or to even think about food or recipes or a healthy lifestyle.  When I thought about it...got overwhelmed...and would call Chris and tell him to just grab something for us on his way home from work.  It was such a frustrating thing to be a part of.  I kept watching my weight go up.  It wasn't like I was sitting at home eating all day.  It was literally that my body has been starving for nutrients.  My body is so sick...and the food I was eating did not aid in healing.

So, here we are...Day 20.  I'm feeling so thankful.  Yes, I still feel very sick...very fatigued.  But, there are glimmers of hope more so than I've felt in a few years.  I was able to run around with Eliana at the park on Saturday and play pretend with her.  I could have just sobbed watching her laugh her head off with me.  I have actually prepared a few meals for our family in the last week (gluten free, dairy free, and sugar free).  I feel like a "real" wife and mom for the first time in a long time.  I know I am always a wife and mom...but I have felt so low just living in bed.  I still go from activities like this straight to bed to rest...but I'm up for a little bit.  And, I'm celebrating that fact!!  This is a new part to my Lyme journey and something that our family is going to live from here on out.  Chris is a professional juicer for our family...he loves it!!  He has led us so unbelievably.  He takes many trips to the store...we are watching food documentaries every night together...and we are both googling and studying everything we can about food and its healing properties.  God gave us our food for a reason and unfortunately, I'm afraid the food we were eating wasn't really even food and far from what God designed.

Please keep praying for our family.  Pray for strength as we continue to learn and grow in this process.  Pray for my heart (especially at night)...I so look forward to the day that playing with E and being out of bed is the norm.  Keep praying for our sweet girl.  We have had some good days, but she is still struggling.  She is hilarious and tender-hearted and crazy!!  We love everything about her.  But, life is exhausting.  I am hoping to continue my Lyme treatments after a few months of getting myself on the right track with my food.  Be praying for financial provision through all of this.  It is super expensive to live this kind of life and continue with my treatments.  But, I know that it will be SO worth it!!  We love you all so much and are so thankful for your prayers, encouragement, generosity and support.  We couldn't do this without ya'll.

Love you so much,
Lindsey

so long 2012

I have been in bed for the last 40 hours out of 48 hours (maybe even more).  No lie.  This is not exactly how I wanted to ring in 2013.  I got out of bed yesterday because Chris was amazing and made a NYE dinner for Eliana and me.  I ate the dinner and went straight back to sleep.  At midnight, we prayed together and I watched more Downton Abbey (I've probably watched all of the seasons 45 times each).  Most of the time I'm sleeping...the other moments I'm begging God for relief and energy.  I'm thankful to hear Eliana's laughs in the other room.  Chris has done so many fun things with her over the Christmas break.  Tonight, I walked upstairs to help install one of her Christmas presents and decided to clean her room.  Now, I'm back in bed...in pain...exhausted...and googling everything I can on this horrific disease I have.

Googling "Lyme disease treatments" is probably the most discouraging, confusing thing I will ever do.  Unless you have a PhD in biochemistry, you will click around the computer feeling helpless and hopeless.  I've gone to 2 LLMD's (Lyme literate doctors) and 1 detoxification specialist and I can't stop crying.  We've been so focused on Eliana for the last 2 months, that I've just pushed my symptoms/feelings to the back burner. Well, it's officially 2013 and I feel so sad tonight.  We've spent thousands of dollars...thousands (again, I have to tell you thank you for being hope to us in this).  God is so gracious and gave Chris Girls of Grace conferences to do and that helps as well.  But, it is very discouraging to spend that much money and still feel the same...the exact same.  My head goes through a thousand "what ifs" or "does this cause this" or "would I be better if we didn't have so much stress."  The bottom line is that I will never know the answer to these things.  Because I'm in bed so much of the time, my metabolism is so out of whack...and my weight continues to sky rocket.  Some people with Lyme lose tons of weight and some gain tons of weight.  I remember looking at my doctor and jokingly saying "why can't I be sick and skinny."  I obviously know there is so much more to life than this.  It's just another area that leaves me feeling sad and lonely. 

I guess because it's the beginning of the new year, I just feel desperate for a plan.  No, I do not want to have any resolutions (except to maybe get out of bed each day).  I want someone to look me in the eyes and tell me what to do.  I want them to take me by the hand, lead me to someone who can help and then cheer me on in my healing process (and for it to be covered by insurance).  The unfortunate part of this is that there aren't a lot of answers to help people like me.  There is no right way or wrong way.  It's a ton of trial and error.  I have multiple co-infections and actually have tested for a few other infections not related to Lyme.  I ask God for the next right step...and I know He gives it to me.  But, I'm frustrated that none of my next right steps are adding up to healing.  Oh yikes, maybe this is really where God wants me to be?!!  I just had that flash in my foggy, tired brain.  I look normal on the outside.  But, I feel like I am barely surviving on the inside.  I try to put on a smile and a brave face, but I'm just so tired and weak tonight.  I need prayers friends.  Please be praying for healing for me.  It takes a lot of strength, patience and energy to be a good momma to Eliana...and by the end of the day, I am zapped.  I long for the day when I feel like "me" again.  Lord, please heal me.  Please.

Love you all,
Lindsey

PS.  I hope the Lord was speaking to me through that fortune cookie! :)  I know He was through the rainbow.

thankful for this today

"Know therefore that the Lord your God is God, the faithful God who keeps covenant and steadfast love with those who love him and keep his commandments, to a thousand generations."

Deuteronomy 7:9

by the grace of God

Well I'm not even sure where to begin...

Lately when folks ask me how it's going I've taken to saying, "We're about the same."  It's so much easier than saying: Lindsey is still super sick and feels basically nasty every day. Her head is pounding. Her body is aching. She's exhausted. She's spent. Eliana is revving....her little engine is on red and headed for overdrive. Eliana is anxious and afraid and often right on the edge of raging at the drop of a hat. I'm stressed and I feel overwhelmed. To summarize I say we're about the same.

I've noticed how folks so want there to be a bow on top of our story right now.  People want to hear the silver lining, the trajectory, the path, the plan, the steps. As I explain that things really aren't changing I watch the wheels turn in their minds as they search for a solution to offer. It's usually something like, "have you tried ____ ." As I stammer through an explanation of why we haven't (or how we have) tried their suggestion I usually feel caught and on the defense - wanting to prove that we're doing all we can. I know that these are well meaning, sincere, loving friends who are honestly asking us how we're doing but as they search for ways to fix us I feel alone. It sounds so bizarre, but I don't want to be fixed. I do want healing and freedom and life for both of my girls but somehow that feels all together different than getting fixed.  The most refreshing response to our situation is when folks shake their heads and say, "I don't know how you do it."  That I love. Then I get to say, "by the Grace of God."

It is the Grace of God that allows us to move forward each long night and to embrace each new day. I've never been more convinced that this life is hard and fragile and brief. I know that we're not promised comfort.  In all of this we so want to glorify God. We so want to keep perspective. We so want to allow His light to shine through us.

Confession time - at some point in each day I really battle comparison. I know, I know, "Comparison is the Thief of Joy." That being said, I keep finding myself looking at other individuals or families who on the surface appear to have everything rolling and if I'm honest I'm jealous. At the same time when I hear folks complaining about their scenarios I compare and think, "Are you for real...that's what you're worried about!" That sounds so ugly to admit...because it is. That's my brokenness spilling out. That's the part that God is working to redeem in me through all this pain.

I listened to a sermon today by Andy Stanley and he referred to "Hope Migration" as a way to describe how our focus often shifts from Jesus to the temporal things of this world. I keep finding myself putting my Hope or at least my focus on petty things to distract myself from all of this stress and hard stuff. Oh how I want to grow in this season and be the man who keeps his eyes fixed on Jesus despite the ruggedness of the day.

I know/ believe that our lives will not always be this hard - I remind Lindsey of it all the time. Right now these are the cards we've been dealt...so that through it God will be Glorified. To all who pray - thank you please don't stop. We're counting on you to be the ones to hold our arms up in this battle. To those who have given money or purchased a Pallet Wood Christmas Tree - THANK YOU. God has literally used you to be his conduit of provision. Thank you for standing with us. Your words of encouragement are often the flicker of the flame that we need to keep us moving forward. 

We're gonna make it.
Grace and Peace,

Chris Wheeler
Husband to Lindsey, Dad to Eliana