hope is knowing that the best is yet to come

I think this is most definitely the longest I have ever gone without an update. I have honestly just been in a pretty dark place, and if I am going to be real on this blog...I have to pull from feelings that I sometimes want to ignore. It has been a hard couple of months. A really hard few weeks. And an almost impossible few days. We were blessed to be honored at the Clays for Cara event earlier this month. It was a hard night, hard to be there in remembrance of Cara but also to see ourselves in the same category as other families who are suffering. I know that we are suffering and I know that we have had a hard few years....but the picture always looks different when you are in it. That night, I saw our family from the outside. And, I am going to be honest...it was sad. However, it was a great gift to be surrounded by family and friends who have rallied like its nobodies business for 3.5 years.
It came in perfect timing (as all things do of course). We have battled for 3.5 years and it has been a really hard fight. We have seen dozens and dozens of doctors, specialists, surgeons, and homeopathic doctors. We have gotten first, second, third and fourth opinions. We have stopped our lives for treatments and to talk to insurance on the phone and to wait in line at Walgreens.
But, most importantly we have PRAYED. We brought the sword out from day one. We have looked to God's word and we have sought his comfort and we have FELT his peace. We have declared healing, we have asked forgiveness, we have rebuked, we have surrendered, we have pleaded we have walked in circles and we have stood still. We believe that after all of that....we are right where we are supposed to be.
The world and ourselves HAVE RUN OUT OF ANSWERS. But, HE has not.
We prayerfully and cautiously decided to have hospice take over. This officially began on Tuesday. Let me tell you what happens when you say the word hospice in public. PEOPLE CRY. Yup. When you say "we have began hospice" you might as well kill a puppy right in front of a kindergarten class.
I mean, its sad. Just the word is SAD.
Hospice is sad of course, but really it is so beautiful. Hospice does NOT mean giving up. It does not mean we threw in the towel. It does not mean that Justin can't do anything or go anywhere. It does not mean that he is about to die.
What it DOES mean is that we are no longer going to seek aggressive treatments. It does mean that he will now be cared for in our home and he no longer has to trek across the city when he is miserable to just be told basically to just keep hanging in there. He doesn't have to argue with insurance or explain himself to pharmacists (God love you Kelly Newcom for being a pharmacist...that may be just the hardest job with the most irritated customers in all the world. You are one of a kind!) He won't have to take medicines that may actually be harming him JUST IN CASE they could prevent a flare up. Hospice is hope. And hope is knowing that the best is yet to come.
The facts are in our favor....a better quality of life is reachable, God is FOR us and will never forsake us...but it still hurts deeply. Please pray for us. Please pray for our kids. Pray that all 5 of us will feel the spirit of the WARRIOR that resides within us.
For those of you up on current events, let me tell you about "dying with dignity"...this is it. God is in charge. Now THAT is dignity.

summer is over, and other stuff

September is happening, like really soon. YIKES! How did that happen? I love summer the most...but I am looking forward to cooler days and all the fun that comes along with fall. Before I bore you with back to school pictures of my children I have three tiny updates. 

1. Nothing notable to update about Justin. I do not think that really falls in the praise category, as he still sleeps 75% of the time because he is so miserable...BUT he isn't in the hospital. So, I am putting that in the praise department for today. 

2. I have some really exciting news about Vault:Fostering Community! We are just a few tiny steps away from becoming a real deal 501c3. We have raised the money to file our paperwork and now just need to push forward with raising the funds for our operating budget (which is only about 10k a year...just in case you were wondering). In case you are also wondering what Vault actually is, we basically exist to make foster parents life a little easier. Making the choice to support orphan care can look very different from one family to the next. A small way to support local foster families is to provide resources when placements are made. We take donations throughout the year of gently used items such as cribs, toddler beds, mattresses and car seats to and keep them in our storage AKA The Vault. It is a really simple concept actually and we LOVE the fact that we have been able to help over 25 families in the past few months. We want to love on all these families, plus provide community and other various resources. We have a lot of REALLY exciting things in the works and can't wait to tell you all about it. A couple ways to get involved now are to spread the word about our family night (info below) and BE OUR VILLAGE BY BUYING A TEE!  (click here to see the awesome tee!)

3. And last but certainly not least is Clays for Cara. This is an event that Justin and I have supported for the past 4 years. We are humbled to be included in this years event as a beneficiary family. As you all know, God has continued to cover us financially in the midst of Justin's medical storm. We are honored to be included in what we believe to be a very prestigious event. We sit in awe at how The Lord works to bring us peace and comfort when it can't be found anywhere else. There is even a possible surgery available to reduce some of Justin's symptoms that is not covered by insurance. How great is it that our God prepares each step before we walk it? Please make plans to attend this event! The fall calendar fills quickly, so mark your calendar and register ASAP. 

You can also help by sponsorship or donating an item for the silent auction. I am grateful for each of you who have rallied around us over the past 3 years. Some other VERY amazing and deserving families will be supported by this event...so do not miss out. Visit claysforcara.com for more info. 

In other news...Back to school is a very exciting time! New clothes, new teachers, new adventures. Our biggest change this year is Brody starting kindergarten. He is at the same school as big brother Bryce now and we are thrilled to say (at the end of day 5) that he is thriving in his mainstream class. When Brody arrived in our family we had to shift gears on expectations...in such a healthy way. We prayed that he would be able to be in a mainstream class, but we also are praising the fact that our school has an incredible program for him to roll into if/when that need arises. We want what is best for Brody...and that is not always the easiest thing for us. Lots of life lessons ahead as we enter the public school world with this guy. Lots of opportunities to NOT wear our feelings on our sleeves and to realize that the rest of the world does not have a reason to know all about downs syndrome. It's also a time for us (Bryce is included in the us) to extend grace and compassion when others don't know what to say and may not always say the "right" thing. Brody LOVES it, LOVES his teacher, LOVES his lunchbox, LOVES walking to the corner with Bryce, LOVES getting to go to big boy school and Braxton has to stay home, and still doesn't really love waking up in the mornings :)

If you made it down here to see these pics, then chances are we are related. So, thanks. 

30 days later

It is not a secret that Justin and I have walked a difficult road together. Much of it has been out of our control while some decisions we made surely not realizing how much of our lives would be impacted.  An example of this is our children. Justin and I did not plan to have 2 of our 3 beautiful kids. In fact, most of you realize that Bryce was an extremely unplanned pregnancy...the premarital kind. Yikes! I remember feeling so ashamed and scared and also very excited to be a mom. I remember feeling judged for being 20 and unmarried and pregnant. There is much to this story and such beautiful things that God showed me specifically about life, obedience and redemption. But for now, the point is that while Bryce was a very specific blessing to this family (and earth in my opinion)...he was not "planned by me." When Bryce was 2, Justin and I finally felt mature enough to marry each other and make that commitment as a family. Three months after we were married I was itching for another baby. It was the "perfect" time because Bryce would be three when the baby came and he would be potty trained and everything would be perfect. We "planned" our second pregnancy and I was pregnant with Brody within two weeks and all was good in the world. Fast forward to when Brody was 6 months old and in and out of the hospital, my mom had just passed away and we were living out in the middle of NOWHERE....pregnant. Here comes Braxton. Not "planned."
Here is where I am going with all of this.
Brody was the only child we sat down and discussed having. This has been heavy on my heart lately because I am able to see how special Brody has been since before he was conceived. Bryce and Braxton are incredible boys and we love all of our kids deeply and equally. They each teach us so much and bring tons to the table. But, what Brody's life has brought to the table has been very different. I am not going to go into the whole everything because I have written about it all before, but Brody was born four weeks early, out of town, in a hurricane evacuation. He has Downs syndrome which was a surprise to us 12 hours after he was born. He had a rough start in his first 6 months, but if you know Brody then you know JOY. If you know Brody then you have seen a FIGHTER. You have witnessed what happens when God whispers to a 7 year old little girl that she will one day be the mommy to a beautiful child with Downs syndrome. You have witnessed what can come to fruition when GOD'S plan is so mighty that he will NOT let anything get in its way.
Exactly one month ago today marks the very worst day of my life.
While at a pool party, I left Brody amongst friends, away from the pool, eating lunch, wrapped up in his towel to take Braxton to the bathroom. Just moments later when I returned, Brody was not where I left him. As I searched for him, I felt God pressing me to stop in one spot. While in that spot I looked all around....until I finally looked right in front of me into the bottom of the pool to find my sweet boy. I jumped in screaming and pulled him from the bottom of the deepest spot of the pool. Brody was blue and not breathing and not responsive. I handed him off to our dear friend...one of two dads trained in CPR who just "happened" to be at the party that day. I felt this overwhelming force push me to my knees to pray. I couldn't even look at Brody...which seems so strange to me after the fact, but these moments were beyond my control. I cried out to Jesus as others around me scrambled to call 911, comfort my kids, me and all the other kids at the pool that day. I felt like I could see it all from above where it was happening, I could see myself on a puddle on the ground and I could see life literally being breathed into my precious son. I could see the fear on Bryce's face. I wanted him to be whisked away so he didn't have to be a part of this. Another scary thing. Another big scary thing in his little life. But, God said no. God asked me to bring him over and show him that when we are enveloped in fear and death is creeping in that GOD is the only place for refuge. Time was non existent. It felt like an hour but it also felt like just seconds. Brody begin to breathe and he opened his eyes. For no explainable reason I felt peace. We were far from out of the woods, but in that moment I felt secure in the hands of our Savior and confident in the LIFE of Brody. The EMS arrived and we were sent for observation in the Methodist PICU. I have processed these 24 hours more than 100 times. I have thought of every detail, every word that doctors spoke to us, every person that was in place that day. It is just unreal to consider who was where and what all transpired. I know that satan has been after this family for a long time. I KNOW that God has been after us harder.
Habakkuk 2:3 tells us that the vision for our lives WILL NOT deceive or disappoint. This is hard to remember when we are stuck here in this temporary life. God has been using Brody for His glory for a LONG time.
Psalm 27:14 reminds us to WAIT on the Lord and let our hearts find courage in HIM.
I gotta tell you, I am often pretty tired of what is waiting for us. The pain that comes along with a life following Jesus and not the world is sometimes unbearable. But, the joy in knowing what is to come is NOT comparable. The Macs have spent a lot of days sitting in expectant hope and watching the glory of our Father unfold. It is hard work, but it is His work and we wouldn't trade it for the world.

come thirsty to the water

I have been "off" lately. To be honest I have been flat out sad, anxious, lonely and overwhelmed. I have felt a bit out of control and I also felt embarrassed by that. Since January the going has been tough around here. Typically when the going gets tough we get going....but I haven't been able to get one foot in front of the other and that has been disheartening. I am strong, faithful, I rely on TRUTH, I know where my enemy sits, I have accountability, mentorship and etc. Somewhere along this journey I convinced myself that we have enough going on around here and there is simply no time for my grief. Maybe I felt a little obligated to be grateful for all that is GOOD, because let's face it....so many have it MUCH worse.
So with the prompting from a few friends a couple of complete strangers I feel like this post is due.
Here are some things to know:
- I do not have it all together
- I forget something important every day
- I do not read my Bible every day
- I have a sitter come twice a week so I can work or just sit in my car in the quiet
- I only make it to church about once a month these days
- Sometimes I get mad at people who aren't hurting
- I never say no to eating pizza
- I am often jealous of people's family time

So, most of you all are very aware how imperfect I am...but now it is out there for all to see. I am sure there are some spicier things I could add to the list, but I thought this was sufficient for today :)

Hear me say this - I am GRATEFUL for the life God has entrusted me with. I am in awe of His sovereign hand on my life on the daily. I would NOT trade this life for any other because I would miss out on too many great things that have happened and happen in this one. I was intricately created by a loving God to care for these people. This life is good and full of reminders of how big He is and how small we are.

And now hear this - THAT DOES NOT MEAN THAT I ALWAYS LIKE IT.

I have been in a big fat phase of I don't wanna.

I was going through my Jesus Drawer...haha just kidding, I don't call it that, but I do have a drawer where I keep different talks I have done, notes from studies, etc. Anyways, I came across a talk I did last year about Brody. Gah, I love that kid. He was born mid hospital evacuation due to Hurricane Ike and he was born with lots of little medical issues that we were completely in the dark about. It was all such a surprise, and not the surprise party with all your friends kind of thing. More like if you were sitting in your bed reading a book and then out of nowhere someone dropped 100 gallons of ice water on your head. We were shocked, scared, confused and so on. At that time, God gave us an opportunity. We could sit in the fear and mourning and loss of what we thought our lives would be or step off the boat (Matthew 14:29). We looked directly ahead and set our eyes on Jesus and we got off that boat and we have never looked back. Brody has challenging moments. He is stubborn as all get out, he can be pretty unfriendly at times, he kind of likes to hit, he won't eat a dang sandwich, and he poops his pants at least once a week. But, at the very same time he can be THE most loving, huggable, snuggly, kissing, hilarious, tender, smiley, smart, yummy chunk of love on this whole planet.

I am getting to the point now...when Justin and I had Brody we didn't make a conscious "choice" to go ahead and love him just as he was. We did what was natural to us. Brody is our son and we wouldn't have him any other way. It wasn't easy from the starting line and it won't be easy as we race to the finish line but the Lord is close to the brokenhearted as we all run this race together (Psalm 34:18). Justin's health situation is far from easy and enjoyable. In fact, it has changed every tiny piece of the way we do life. Most of the time it flat out sucks. A "good day" here looks FAR different than what a "normal" persons good day may look like. If Justin is awake for two straight hours or if he drives to Walgreens...we had a "good day" - He even got to go to a work dinner with me the other night which was basically his first restaurant debut in months....that day was off the charts! We choose to find joy in these circumstances because its just too hard when you don't. I tried...and I don't like it.

Reading scripture and doing all the devos and singing all the songs don't FIX anything. Anyone can slap on a spiritual bandaid and then become disappointed when healing didn't occur. But, the TRUTH soothes us, shapes us, forms our hearts and that takes the sting out. Truth gives fear a swift kick and allows hope to enter the hurting places. Truth doesn't FIX anything, but it opens the door to this exciting place full of comfort, miracles, meaning and rest for our weary souls.

Peter fell, but at least he got off the boat!

super dad

When it comes to dads... I hit the jackpot. Not only do I have the best dad around, but I am married to Super Dad. I love them both for their flaws and imperfections. I love them for how they have loved me and my boys.
I want to honor Justin everyday, but here are a few of the many reasons why I want to especially honor JMac TODAY. He drives me nuts, makes my stomach hurt, allows me little sleep, makes my head spin and keeps me on my toes almost every second of every day. Being married to Justin leaves me often very lonely and desiring a partner for pieces of life. It is overwhelming to my soul to try and keep up with what will happen here from day to day. But, I couldn't imagine ANYONE who could do a better job at being my husband and being the daddy to Bryce, Brody and Braxton.

He loves the Lord with all his guts. 
Justin knows what it means to suffer. He knows what it feels like to hurt and lose. He wakes up each day wondering if he will be able to get out of bed or if he will end up back at the hospital or if he will be able to eat. Never once has he turned his back on his faith. In fact, his suffering has brought him closer to God than I ever thought possible. He disciples and encourages and PROVES God's mighty power over his life on the daily. Justin is alive ONLY by God's grace and the TLC of Dr. Ben Stahl :)

He is funny. 
I mean really funny. If he doesn't make you laugh then you need to have your funny bone examined. Like, for real. He is THE definition of off the wall. He is THE envelope pusher of the century. He will make you uncomfortable, but only if he likes you :)  JMac keeps it real.

He is not selfish. 
Justin has spent about 7 weeks out of the past 5 months in the hospital. The FIRST thing he says EVERY time he goes in is "don't worry about me...go take care of the kids and yourself"
He worries about me and the boys a lot. He fears that he lets us down by being sick so much. He wants us to have a normal life...but he is our LIFE. He shows us life, he shows us selflessness, he shows us faith and we wouldn't trade it for the world.

He puts us first. 
Now let's get real and say that this didn't come easy for him. He spent a good portion of his life working hard to prove himself. He proved a LOT, but we got lost in the shuffle of the busy game of life. Justin found out that when you put your mind to something you can accomplish it all...but then over time he learned that all of that meant nothing without the foundation of Christ. He slowly watched the things he had worked hard for no longer be a part of his reality...it stings, but at the end of each day he has EVERY single thing that he needs. We all do.

He has legit discernment. 
I like to pretend sometimes that he doesn't, because I don't always understand the way he processes...but the guy can sniff out the yuck, like real fast. The Macs have been around the block. We have been there and done that and seen the stuff. It took some serious crazy times and a whole bunch of prayer to get our hearts in the right place. Justin leads us like its nobody's business.

He is the best steward of God's blessings. 
Justin trusts God hard core when it comes to finances. He is a giver. Sometimes I have to close my eyes as he writes checks. But here is the thing, Justin is smart with money. Like super smart. We have needed to be on the receiving end quite a bit as continued unexpected medical situations never cease...the way he takes these blessings and turns them into a way to cover our needs plus TRIPLE the needs of others is beyond me.

I am all in for this ride with Justin. I have to hang on REAL TIGHT sometimes as I learn more about trust than I ever thought I would need to. I have to remind myself OFTEN that what lies ahead is FAR better than any of us could imagine. This place that we are in where we have to lean on God like every minute of every day is HARD, but I am pretty sure this is just where He wants us.

love endures

I have not updated in a bit, because I have not been so sure what to say. It is a little more of the same around here. Justin does not leave the house unless he is going to the doctor or pharmacy...which is tough on him AND the kids. They notice. When his car is not here they say "why did daddy go to the doctor AGAIN?" When other kids ask where their dad is they almost always say "at the doctor."
His IV's and PICC line and bandages and sleeping patterns and nurses in and out don't even phase them anymore. It has become their normal. They hop right in our bed and sit right next to him and they get all tangled in his wires, but they don't care.
They are sad when he can't be at things or go do things with them...but they are never disappointed in him. They love him so much. So unconditionally. I ask them questions sometimes to check on their hearts...they don't feel like they got handed a bum dad or wish they had a dad that could do such and such. The way they look at him. The GRACE they give him...
The boys LOVE their daddy. They really really love him JUST the way he is. HIS love endures forever.

Love through a child's eyes is a precious thing. When we get older and we have seen and heard and felt too much...love hurts more. Justin hurts that he can't love the boys in the ways he dreamed. It hurts him that he cannot love me in the ways that he imagined he would love his wife. Since the moment Justin got sick he has seized LIFE. He has not stop running the race. He has lived big and lived hard. He has said whats on his mind (and more), he has stayed up late and driven too fast. He has splurged on family vacations and memories and pushed when his strength had run out hours before. He has loved others like you wouldn't believe. That man, he stresses me out on the regular. And by that I mean like, all the minutes of all the days. He keeps me on my toes, but that keeps me closer to God...and that's where it's at y'all. When I look at the past three years as a whole...I feel happy. I know that through death we have seen life and through fear we have seen hope. The past six months have been the hardest of all. These months trump last summer's hip replacements and the summer in cleveland. These months hurt the hardest. There are lots of reasons why, but we can't quite put our finger on what hurts the most. It just hurts.

Weddings are a bit hard these days because I see this fresh start at love and I am jealous. I want that time back with Justin. I want to go back to our wedding day and even if this is the path God would take us down again...I would do it one million times. I would endure this hurt for all the days, but I just want one more moment of THAT. That sweet time when we looked into each others eyes and thought of nothing and nobody but the vow we were making before our family, friends and God. Gah,  marriage is beautiful.

Through the very most difficult days, God has reminded us DAILY that he is with us. He sends a laugh when one is needed. He sends encouragement in the most beautiful ways. Here are a few things that have made us smile lately...

I can't even handle this. We CAN NOT. I mean...177 + the 47 we sold the first time around = a lot of people who love us a lot. Some of the new treatments Justin is looking forward to will NOT be covered by insurance. And who are we to live in fear that God doesn't have every detail mapped out? 

We are not trippin'

Brody graduated from preschool. He will go to KINDER next year at Curington with his big brother Bryce. This guy makes us smile A LOT. 

I got to go to New York and celebrate my 30th birthday with this girl. We laughed, ate junk food, people watched, got separated on the subway, talked about life, talked about nothing, ate some more, laughed some more and had the most amazing time. I am lucky this one keeps me around...I can be a handful every now and again ;)

And THEN...this cutie pie was recognized at school and received the principals award for PE, the sportsmanship award for his class and all year honor roll. Bryce has grown more than ever this year...we are so proud of him for so many reasons, but mostly we are proud of his continued trust in the Lord. Plus, PE is like the best subject of the day. 

Cutie pies at Morgans Wonderland. If you have never been...go now. 

And then just one little quick pic of the precious wedding I went to last night. The love between the bride and groom made me so very happy...and these two dorks make me a little happy too. 

mothers day and other things

Today is Mother's Day...obviously.
I have spent a little time this week reading blogs, open letters, memes and other various opinions on this day. Everyone has an idea of what Mothers Day should be. Some of the opinions I read/talked about this week were:
- Mother's Day is the one day a year I want to not be a mother and do whatever I want. 
- Mother's Day is just another stupid day invented by Hallmark to makes dad's everywhere feel inadequate. 
- Mother's Day is the BEST day of the year and I spend each second of this day basking in thankfulness that I have the privilege of being a mom. 
- Mother's Day is my day for pampering, breakfast in bed, gifts and flowers. 

There are millions others no doubt. Where does your opinion of Mother's Day fall? Is it as extreme as any of these? Maybe a combo of all?

I really want to set the record straight by saying I don't really know how I feel about mothers day. I mean I really do love a day dedicated to the mama. But just like the Christmas, anniversaries and birthdays where families don't have enough money/time/energy to buy gifts or have elaborate celebrations...sometimes families have to make a choice to set aside the typical expectations of how days like this should go and do their own dang thing. What about the family that is mourning their mom today and can't quite muster the energy to "celebrate her memory" or what about the orphans with no mommy to write a card to?

My favorite thing that happened today was this:
I came in and Bryce (who is always up before me) said "so, aren't we having a special breakfast today?!"
Uhhhh, about that, yeah we are not. Frozen waffles anyone?
Then his 8 (going on 20) year old self got up and made a folder of all the things the littles had brought home from school this week, he made me a coupon for a nap and wrote me a note from his brothers and himself.

I was really impressed and of course very touched. But, it also made me a little sad for him. When he realized that he was "in charge" of making me feel special today...it made me want to cancel mothers day and rip that burden off his shoulders. In no world that I live in do I want my baby boy to carry the pressure "of my happiness."

Has anyone seen Rio 2? Sure is a CUTE movie. But how about that line...Happy WIFE, Happy LIFE? I know the world jokingly uses one liners like that for a smile and it's funny and the Mac's aren't trippin...we GET funny. But, if the wife ain't happy....she needs to some Jesus. And that's a fact. In marriage 101 we learn that NEVER will our husbands fill us up completely. Never once in the Bible does it say "hey husband, your job is to make your wife feel beautiful at all times , buy her exactly what she wants even though she never told you wanted it, plan pinterest worthy dates and plan to pay for it when you don't get it just right"

I checked again just now to be clear. It doesn't say that.

I grew up with parents who never took the time to know each other. They loved me dearly, but I watched my dad buy gifts for my mom each holiday that she ultimately hated and the sad truth is that he probably didn't really try that hard and even if he had...she would have had a problem with it anyways.

I don't want to miss out on my life because I am too busy being sad about my life.

Let me tell ya, I got plenty to be sad about. I fight back tears at least 5 times a day. I miss out on a lot of "normal stuff." I make commitments and then have to bail out last minute. I have to rely on sitters, my kids surrogate grandmas and Justin's minute to minute changing health situation. I am pretty sure it could be worse though. I caught up with a friend this week that never left his ill wife's side for 13 months. I am honored to walk alongside a friend who lost the love of her life in an instant. No chance to say goodbye. My best friend longs to bring her son home from DRC and there is not a darn thing she can do to make it happen faster. How can life continue on as normal when this is your reality?
I wonder sometimes if I met the grace quota. I have found it harder these days to stop and celebrate the joyous things happening around me. I am filled with JOY for those who have struggles that are different than mine, but for a few minutes I have to allow myself the freedom to seek grace tomorrow.   I just don't have enough for all the days. Jesus does, but sometimes I need to keep all that grace all to myself.

I turn THIRTY this month. I don't really wanna, but nobody asked me. I am going to new york with Katie for a long weekend. Justin and I spent his 30th birthday in NYC and we planned to do the same for mine. Justin can't travel and we considered canceling...but then God reminded me that HE is taking care of Justin. I am needed, I am his caretaker, advocate and ultimate number one fan. But, God orchestrated this trip because he wants me to LIVE this life. Justin LIVES life. He pushes it for a few days and then he crashes and burns for a few days. But, he sure doesn't waste those moments where he feels better then his normal crummy self. He never feels GREAT, but he never misses a chance to enjoy a moment. God provided me with a leader who is paving a path for me. And that path is taking this girl to NYC for the weekend to celebrate the end of my twenties. The village is stepping in ONCE AGAIN to love on my babies. All I can say is Amen to the gifts and blessings that are covering the junk. These beautifully wrapped gifts don't take the hurt from existing, but they provide an outer strength that comes from nowhere but that guy Jesus.
I haven't posted pics in forever...so here are a few!

One year ago this happened. Justin rededicated his life to Jesus. He still drives me nuts on a daily basis, but he loves life and he fights and he doesn't give up. He loves us all and that is so evident by his extreme desire to be healed. 

This is my beautiful mom. She also left a legacy of what it means to love life. Not to care what other people think and do what your heart tells you to do. 

And this is pretty random, but this is me. I know my kids look like Justin and all, but I mean really...tell me you don't see my boys in this pic!!!

 I had one request for mothers day. 

Because I am thinking the motto should be a bit more like...happy kids, happy mama. 

And lastly, for those of you who have supported Team JMac with one of the super fun shirts...you ROCK. We have sold over 100 shirts in honor of Justin. This time around we are using booster, which allows us to keep a portion of the sale of each shirt. We will use this money to pay for medical travel expenses and doctors that are not covered by insurance. Do you have your shirt yet? Only two more weeks to purchase! https://www.booster.com/teamjmac

Houston Schmouston

Today was Houston day. Today was the appointment with the Dr who wrote the book on Scleroderma. Literally. She wrote a book called The Scleroderma Book.
With LOTS of prayer and a fabulously persistent family member, we got into see THE lady who has dedicated her medical career to studying systemic sclerosis. We left the village to care for our kids and drove in last night. We prayed for her by name. We prayed over the city of Houston. We prayed over the parking garage. I prayed over her waiting room and every member of her staff that I could see. I have been trying SO hard to keep my eyes on the prize...which of course is Jesus. NOT a doctor, not a magic pill, not a clinical trial, not any tiny earthly thing. But, my precious husband had a lot of hope. He felt rejuvenated at the idea of fresh eyes finding a fix. She was going to tell him something new that we didn't know about...and then he would shout from the rooftops that through her, God had completely healed him.
Before I get to the point here, I want to say that this day ended with a bit of defeat. HOWEVER, the incredible and AWESOME God that we serve provided a little gift last week that will see us through this day and all the rest of the days we have here on earth.
Some sweet spirit led friends suggested that I encourage Justin to read James 5. Justin falls asleep every night listening to his Bible, so last week I made the suggestion. God kept him awake until he finally got up and went to read James 5. Except, my husband is a man. So....he "accidentally" read John 5. When Justin forgets what I ask him to do and does something else...I usually think it was because he was not listening to me. If you are a wife you just get what I am saying. He loves me, but sometimes when I talk I think he hears the Charlie Brown WAH WAH WAH. But, this night when I asked him to specifically do something...he HEARD. He HEARD from the Holy Spirit, and that trumps me any day of the week. He HEARD what he was supposed to hear and he read what he was supposed to read. Because God is the real deal, ya'll. God revealed some stuff to Justin through John 5 that could NEVER be considered a coincidence. He read that and felt a presence and a healing that he needed to feel in preparation for today. (Interesting fact: Justin was in our church Christmas drive through thingy...because he is like part super hero...and his part was in the scene of the pool of bethesda. Neat)
So, back to the point. Dr. Scleroderma did not have the magic wand that Justin had hoped for. It must be out of order :( He does not qualify for any of her trials and she really doesn't even feel like she is the specialist that needs to manage him closest. She was vague on who that should be, but gave us something to work with.
She changed up some meds and will see her again in a few months. She wanted him to see a special dermatologist while we were here. Her nurse sat on the phone for 30 minutes trying to get us in....we got the thumbs up to go and then on the way there (it was like 5 blocks away) a little tiny hybrid granola car rear ended Justin while we were parked at a red light. Her car was completely STUCK on Justin's trailer hitch and we had to wait an hour for police to show up, then tow truck driver to lift her car off and then another hour for police to make a report and blah blah blah we missed the appointment and the Derm isn't in clinic the rest of the week. So #whatever to that. I couldn't make this stuff up if I tried!
We got out of the medical center just in the nick of time for Houston rush hour traffic. We finally got back to my aunts at 7 and decided to stay here tonight and head home in the morning.
God is going to heal Justin. Through a Doctor or in the middle of the night on a Tuesday. It's going to happen. We have two types of Doctors to look for. We need the TOP GI motility specialist in the country and the TOP D.O. specializing in autoimmune therapy. Pray specifically for them to ring our doorbell tomorrow. Ok ok, not that, but please be praying for discernment as we sift through the options.
We have both had many moments of being DONE. I am ready for this miracle to get its show on the road. Justin is sick of being sick. It is wearing on Bryce. It's getting old.
 But, David waited. Job waited. Abraham waited. Noah waited. The Israelites waited.
By faith, the Macs can wait. We need a day of not thinking about any of this (which is easier said that done for J...because well he can FEEL it) and then I need to get my detective pants on....which are similar to prayer pants.

You know the drill. Pray.

Oh and side note....we have some pretty great friends. Probably the best ever. We sold these QUICK so that I could surprise Justin with the video before we came to Houston, but we are going to sell these to everyone in the next few days as a tiny fundraiser to cover some upcoming medical travel costs. Watch the video...it will surely make you smile! And if you don't "get it" then you should hang out with Justin more...because then you would :)

TEAM JMAC

Houston or bust!

We have been in full on survival mode. Our persistent circumstances have kept us on our toes. The extended lows have really been an adjustment. Honestly, the Macs can roll with the punches with the best of em...but no lie, these past 3 months have been tough stuff.
Justin went in and out of the hospital through January and February and March with little to NO answers. Doctors didn't know what was happening so they just passed him along. Our PCP (and his team) and my little ol gut told me to keep fighting. There was an urgency that we haven't felt before and it was overwhelmingly discouraging to not have hospitalists with the same passion for Justin. I felt like I was chasing a leprechaun at the end of a rainbow. Or a hamster in one of those hamster things. Working with all my might, but getting NOWHERE. Without the encouragement of our PCP team, I may have given up. I may have thrown in the towel. Really, I was so close to done. Done fighting and yelling and making a scene before a hospital doctor would hear me. Begging for someone to care and look harder. Advocating for a person that only has 50% mental status but doesn't realize that is a really hard job. My instruction manual apparently got lost in the mail. Apparently that happens sometimes in Boerne.
As my hands were on the way up in the air to say I GIVE UP, God would show up and remind me that I WILL NOT FIGHT THIS BATTLE ALONE. He will not leave me nor forsake me and he will equip me with a love that can ONLY be attributed to him. He provides beyond our wildest expectations. We will never stop being amazed at the lengths God goes to so that we can feel refreshed and revitalized and confident that His love for Justin is far greater than our wildest imagination.
With the VERY hard work and persistence of an incredible doctor...we got to where we needed to be. Justin was admitted to University Hospital. Getting in was nothing short of a miracle and after a lot of waiting a plan is now in progress. The infection Justin has been dealing with was revealed...the thing we KNEW was wreaking havoc on him was finally brought to light. God planted a spirit of determination. The glory goes to our Father and to Him alone.
He was then referred to a specialist in Houston. I have read her book and many blogs on her work, but she has a two year waiting list and has always seemed unattainable. We spent so much time in Cleveland and exploring another out of town doctor just never felt right. Plus, a two year waiting list. Um, no thanks. We were given an appt for JULY, which was to be considered as a pretty big favor.
HOWEVER...God tells us to seek and you will find. Out of nowhere, we received a call that "something came up" and we can come in to see this world renowned systemic sclerosis specialist on May 6th. Which, is NEXT week. Hello. Yes to that.
What does that appointment hold? Who knows. But, Gods sovereign hand does not relent.
We specifically need you to pray that the viral infection in his body gets right on outta town. His immune system counts have NOT come up. We so badly need these numbers to rise. When he has a good day he wants to do things that make him feel normal. He wants to go to my cousins wedding this weekend, go  to the movies, sit with us at church. But, the risk is just too high right now. We will NOT live in fear of germs...but we also want to give this Houston appointment our very best shot and he needs to be as germ free as he can be for that appt. Thank you for your encouragement to update. We need you all to intercede daily. We can't wait to shout from the rooftops the mighty work that God has done in Justin's heart. There has been a revival in his heart and that trumps any diagnosis, doctor or medication on this earth. We have already been given an eternal gift and His reminder of that is just too good for any words that I could ever come up with.

moments with Jesus

So, JMac took a turn for the worst. We have been doing our best to manage his health with home health over the past few weeks. It has just become more dangerous for him to be in and out of hospitals and doctors offices than it is worth. And honestly, the doctors he has seen at the hospitals in San Antonio just don't know what to do with him. There have been lots of decisions and unknowns going on around here lately. Should we go back to Cleveland? Should we see a new specialist in Houston? Should he do IVIG? Should he leave the house at all?
Our family doctor has been on the case. He and his team communicate with us almost daily. Saturday night I noticed some things were off and different with Justin. I have to check myself now and again to make sure I am not overreacting (I know, me overreacting is practically unimaginable)....so I called in a second set of eyes. We went with my gut and had him checked out. What was found can NOT be treated at home so sometime today he will be admitted to University Hospital. He needs to be followed by his pulmonologist (Dr. N) and seen by a GI specialist... Dr. N is at University and they will have the most advanced info for a patient like J. Our plan was to keep him OUT of the hospital. It is too hard on him. It is too frustrating to deal with new doctors every day. It is really just too hard on our family. But, we trust our PCP and this is what he strongly suggests.
There are lots of additional details here that I am just not ready to share. Too many unknowns and what ifs. What we do know is that while we wait for the call to head to the hospital and while I scramble to wrap my head around another week of chaos...is that we have Jesus. It is just as simple as that. What happens at the hospital or with the doctors or in Justin's body is just really irrelevant. Jesus knit Justin together perfectly. He made no mistakes in creating him. Jesus will provide us with hope and peace and joy...even at the most unsuspecting times.
God revealed something BIG to me recently. Something really amazing.

He reminded me that laughter is a gift that he created for our souls. Go to your Bible App and look up laughter. It is good.

A joyful heart is good medicine.. Proverbs 17:22

I am not always in the mood for laughing these days. Sometimes the days are really long and hard and the nights are the same. There are many things happening around me on a daily basis that remind me how NOT normal our life is.
But laughter pops in just at the right time...Because sometimes you need to jump on the trampoline with your best friend. Or have an impromptu lunch with some girlfriends. Or dance with some nerds or talk about rhinos and HOA's. It is really good for the soul. I don't laugh as often as I would like these days, but God has saved some very special moments for me and I am pretty grateful for that. We are in awe of hard life can seem, but how precious the moments still are.
Those moments are from Jesus.

a very real update

So much to update.
The past week has been a complete whirl wind and I am glad it is over. Justin gave the doctors all a run for their money as they could not figure out what was causing him to have such trouble breathing and what was causing his mental status to be so wishy washy. I stood back in total exhaustion and frustration as the doctors checked EVERY nook and cranny of his internal organs and could not SEE anything new or different that would be causing these scary issues.
They sent him home on oxygen Saturday with the plan to follow up with a doctor at the university. He remembers SO little of the past 7 days, which is scary and weird to say the least. Home oxygen is loud (think a mini generator in your room) but, it got him home and in our bed and together with our family and that is WORTH it.

So here is the thing... I am about to get real honest.
This week I GAVE UP. I was over it. I wanted this all to be done.
I forgot about this:
7For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison,18while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal. (2 Corinthians 4:18)

I decided that my MOMENTARY affliction was too hard. I was looking for something that we could SEE, when surely I know that faith is believing in what can NOT be seen. This week I put my hope in the hands of doctors and my fear in disease rather than hanging on to the HOLY hope that I know to be truth.

I decided that this fight had gotten too hard and too inconvenient. I just want to stay at home and be a mom and work and do normal people things. I want to make meals for hurting people, not be the one accepting them. I want to fight for the the injustices all around me and focus on the ways God has gifted me to serve. I wanted them to figure this all out and get Justin better or not, but I wanted an end result. Because... I am selfish.

God created Eve because Adam needed a helpmate. A LIFE partner. An advocate.
NOT because he needed a boss or a someone to just check the boxes when things got hard.

I want LIFE for my husband. There is only one place to find life and that is in the freedom of Jesus Christ. Life is not found in test results from doctors or answers from labs or university specialists. We have been there done that...and have been reminded every time that our God is greater and stronger and more mighty than every doctor on this earth put together. But, if Justin wants to change his mind and one day give up on meds and the next day he wants to see every specialist in America...then that is what we will do.

I am emotional as I realize that His grace is sufficient. I turned my back on Him and to the world this week and He stood there patiently waiting for me to GET A GRIP! God doesn't NEED me to fight for Justin. He doesn't NEED me to play with my kids everyday. He doesn't NEED me to be a part of any ministry. He is the vine and we are the branches...apart from Him we can do NOTHING. It isn't the other way around, and I had to check myself for real ya'll.

Justin did not say much that made sense this week...but he did say that HE WILL FIGHT TO GIVE GOD THE GLORY FOR EACH AND EVERY DAY HE HAS LEFT.
My rowdy, defiant, rule breaking, potty mouth, hilarious and handsome husband said that. If he can stand firm in that in his condition then the rest of us have NO excuse. None.

monday/mercy day

I am going to start this post off with some reflection of Lamentations 3:19-33
His mercy renews each day. His mercy and love and compassion for Justin (or me) will NOT run out no matter what the doctors say or how Justin feels. When we throw our hands up in defeat or bury our faces in blankets smeared with tears or even when we want to punch something in the throat...His mercy for us reigns. When affliction doesn't even seem like a harsh enough word...his mercy overcomes. When the future looks exhausting and we want to run away and hide...the Father has a stockpile of mercy just waiting for us to rest in. His resting place. His resting place which is prepared for each of us for such a time as this. Justin's resting place is with the Lord and mine is too...but our place's look so different. Only a mighty mighty God could prepare a place for each of us. Design it with grace, compassion and hope...fill it with love and call us by name to it. He is good.

Today's news from the hospital is: Not great. Not Terrible. Confusing.
Make sense? Of course not.

Here are the facts.
1. Justin's mental state has returned to about 95%! Praise. His feisty little attitude is back and his jokes make more sense now. As far as I know I have not made anymore appearances on the real housewives of atlanta ;)
2. The lab results we were awaiting showed that Justin has ZERO immune system. Literally. There are two numbers the Infectious Disease Dr was looking for. CD19 which deals with viral and CD4 which deals with bacterial. Both non existent. Basically, this is very very dangerous. It also means that the likely hood of Justin contracting one infection/virus after another is very very likely.
3. The immunosuppressants that he takes daily are mostly to blame in these low numbers. (In addition to his just generally wacky body)
4. Without those meds he would have autoimmune flare ups often and would have to take high steroid doses to be able to tolerate the pain/symptoms/flare ups.
5. High steroid therapy is what caused his AVN which caused him to have two hip replacements this past summer.
6. You see where this is going? Yes. A big fat ugly circle. <----- fact.="" p="">
So, for now the plan is just whatever. I mean, really. We are going to finish these 10 days of antivirals. Tomorrow the doctor will decide if he can finish here or at home. We will need to work on immune suppression therapy to see if we can find a way to balance all of this.
I have an ugly attitude right now and that is on the FACT list. Good thing I serve a God of conviction and forgiveness so I can go ahead and get over myself. Thanks for keeping up, y'all.

well, dang

Unfortunately, our week took a little unexpected turn and Justin was admitted into the ICU on Thursday. He went to see his primary because he felt dehydrated and wanted to get some fluids in his PICC. His Dr took one look at him and drove him immediately to the ER. His lungs sounded terrible and his vitals were all out of whack. When Justin and I both got so rundown during his last hospital stay I got the shingles virus and Justin got the very worse version of disseminated zoster virus.
Yesterday was in the top 5 of our most scary days ever. The virus entered his spinal cord and caused an extremely confused state. Doctors were in and out and the main concern was that Justin is just a very rare patient. He can't be treated like the typical patient. This disseminated virus is extremely uncommon and very dangerous for a guy like him.
TODAY has been a MAJOR improvement. He is not back 100% mentally, but he has made some huge strides and is making much more sense now. He slept all day yesterday, last night and is sleeping soundly today. He is no longer on oxygen and the rash that covers his body from head to toe is improving. The Dr said since the only treatment for this virus are the IV meds he is on now...the next best medicine for him is SLEEP. As you all know, he struggles with sleep issues in general. So the fact that he is sleeping like this now is a huge praise. He is in the PCU unit which is a very strict floor regarding visitation. Masks and gloves must be worn and only two visitors are allowed at a time. His parents are here now, so he can't really have any extra company at this time. He will be here for a minimum of 10 days...so there will be time for visitors later this week. His immune system is compromised in general, but in a much more fragile state at this time. If you are sick or feel like you may be sick or live with people who are sick...please be extra cautious around any Macs. We love YOU but not your germs :) I am doing my best to stay focused on Justin and off my phone. Katie has the most updated info and I will do my best to keep important updates known so that the prayer pants can be ON.
I stayed in the hotel across the street from the hospital last night so I could be near in case anything weird happened. I am not sure what my plans are for tonight, but I will play it by ear. The boys are covered for now and we have a care calendar set up for meals. Justin is not out of the woods yet...but I am telling you guys... this dude is a warrior. 

signing our lives away

This weekend we experienced the joy of hosting senior boys in our home for Disciple Now. Youth experiencing Christ is something very special to me...and I have not always realized that.
I was reminded of something this weekend while I watched these kids freely worship.
Every once in a while that sweet gal I have mentioned before would invite me to a camp or retreat. That girl was at church ALL the days and I am so grateful her mama included me so often.
I remember getting ready and packed for an overnight camp. My mom was such a good mom...she made sure I had a cute matching outfit for each day. A handwritten note in my bag for me to open each day. My very favorite snacks, a new cozy sleeping bag, all the essentials plus some.
However, I remember her very clearly saying...Don't sign up to accept ANYTHING they ask of you, then they will just call ALL the time. 

What my mom was telling me was that if I accepted Jesus I would be forever inconvenienced by the church. They would expect things of me like money and time. They would invite me to all of their activities. They would include me in everything. They would remember my name and miss me when I wasn't able to come.

Let me tell you a bit more about my mom before you begin to think she is a horrible person. She was born as 1 of 10 children into a very poor family. She had a hard working daddy and a mama that clearly loved kids. My mom died March 2nd 2009. Never once have I seen a picture of her as a child. She never talked about where she grew up. She told very few stories of her child hood. The ones she did tell were sweet memories of her dad, who died before I was born. She was a passionate woman who loved with her whole heart. She sacrificed much for the happiness of her children.

When you become a "grown up" you realize that when you have close relationships with people it is because you have spent time with them. You have heard their stories. You know their families and you know embarrassing things about their pasts. Come to find out... I don't know a thing about my mom. She had two kids in a a previous marriage that were grown and out of the house by the time I came along. I know in a sense that I was a "fresh start" for her...a chance at a do over. But, in trying to start over she left behind pieces of her past that made her who she is. She never let me see the real person that she was. She was my closest friend in all the world, but she ALWAYS had a guard up. She had many versions of herself that I loved and adored...but looking back I can't figure out which one with the REAL her.

If she had sent me away to camp and I came home transformed and wanting to follow Jesus, she would have lost me. For many years it was just me and her at home...and after her and my dad divorced, she really needed ME. If I had needed Jesus more than I needed her it would have crushed her.

Obviously, these are things I was clueless about at the time. I knew in my heart that it wasn't right to ignore the invitations to accept Christ. I knew I would gain more than phone calls.
But, I didn't want to disappoint my mom.
I never ever wanted to disappoint my mom.

Now, as I sit very very close to the age 30 I can see my life in chunks of time. I see how God has been pursuing me for years and years. Even though I wasn't "allowed" to accept Christ when I was younger...He didn't just give up on me and move on to the next. He has time for all of us. He strategically placed friends in my life through elementary and middle school...and he reached me even harder through the very wrong boyfriend in high school. Through these people I saw an example of what real family was supposed to look like. I saw what a family looks like when Christ is the center.

I am so grateful that I gave my life to Him. I am grateful to be inconvenienced often by the spirit. My heart wants to fly out of my chest when I watch kids genuinely understand Christ's love for them. I am a bit jealous that their parents let them "sign their lives away" so much sooner than me, but I know that His timing was perfect. For this family is now rooted in Jesus. There is NOTHING that can take that from us. There is NO other authority over us. There is no fear in death. There is no burden of guilt. When all the blood of Jesus was shed on the cross...it was FINISHED. (COL 2)

Plan C

We have been trying to keep gravity on our side over the past few weeks. Justin's health has been on a mega roller coaster and we have been trying so hard to fight the ups and downs and stay low to the ground. We had some emotional loops (because we are human, duh) but we kept close to the word and that helped us stay close to the ground. See, the problem I specifically have been having is that I found out I have been lying all along. I have been saying for almost FOUR years that I trust in the Lord's plan and I KNOW that it will be good. I DO believe that..but I had set parameters for that in my mind. I decided that God would do one of two things...A. Heal Justin for HIS glory here on earth B. Heal Justin in Heaven (and while this was the less favored option, I have comfort in knowing that as believers we don't have to fear death). I decided how incredible it would be for so many to see and hear about His healing...knowing his struggle and knowing how we leaned fully on God all the way through. We also have had to have some very very hard conversations about option B. There is no mama in this world who wants to raise three young men without a daddy and no wife around who wants to let the love her love slip into the arms of Jesus before her. There is an unexplainable peace about knowing he would be with Jesus and that is BETTER, but a hurt that rises at just the thought of that which there are no words for. Those were the two options I had for God. Plan A and Plan B.
But, deep down buried inside that dark place where the very best secrets are kept was Plan C. Plan C is my worst case scenario and I think I can safely say that it is Justin's too. Plan C is where Justin is very sick and he doesn't get better. He lives every day with the most unbearable symptoms and dreads the sleepless nights and fears the pain in the morning. It doesn't seem like I thought God's plan was so great after all. Only the plans that I approved would do...
Please hear that we are not "claiming" Justin's sickness will continue to be long suffering. We are stating facts. Jesus is bigger than our facts.
Justin doesn't just simply live in pain and symptoms and fear, He lives in the joy of Christ Jesus. He lives with facts that are hard, but like I said...Jesus is bigger than the facts. A healing began last week when we looked at the big picture and Justin decided to fight quality over quantity. Justin wants to live. He wants to be present in our lives. It hurts him more than we can imagine to do just the most simple things like attend Bryce's basketball game or go hang out on a friends couch...but Justin wants to live. I am resetting my brain and my heart to TRULY follow God's plan for the family. His plan is better than mine, and I don't HAVE to see why yet. For by faith SO MANY of Gods' people didn't see His promises fulfilled on earth. So by faith we shall LIVE.

I attended the If Gathering this weekend with some friends. While nothing earth shattering was revealed  to me, it was a reminder that we are FREE and our suffering here is just a blip on the radar until His gates are opened and the party begins. It was a reminder that we are allowed to have different theological interpretations. It was a reminder that living with disease does NOT make your faith any less that those living without. It was a reminder that God doesn't want to USE us...He just wants to BE with us. Thanks for those continued prayers, ya'll!

He is still fighting!!

It has been a really weird week. Being home feels so great, but it also feels so...weird. We have been in a bit of survival mode, which makes it difficult to stay connected to the rest of the world. Honestly...it is really hard to tune into the world when we are reaching with all of our might to just focus on Jesus. There really isn't any other place to look to right now. There are things that could make for a momentary little fix, but right now we just need to stick close to the Lord.
It is so wonderful to be on the receiving end of so many people wanting to love on us. It's just hard because there is nothing we REALLY need right now that we can't get from Him. We need His hope and protection and healing hand and understanding and peace...your prayers help us keep these things in the front of our minds. When we find a moment (or two) of mega weakness, we are comforted in knowing that both friends and strangers are praying in belief when we don't have the strength.
At the perfect moments your reminders of His word come through. He uses each of you to sharpen us.
I loved this reminder and am clinging tightly to it....
The Lord will FIGHT for you, you need only be STILL. exodus 14:14.
This is a solid reminder that when we feel like we have no fight left in us...He doesn't give up on us!
Justin hasnt moved much since he got home from the hospital...it is hard to believe he has been home a week. It is all a blur! His awake time has been very short and very sporadic. He is really feeling terribly and the boys are starting to miss him :( He has just not had the energy to pull up his boot straps like he normally does. I believe that Justin will bounce back. He always does. God works so mysteriously in that mans body! I am grateful to know that I don't have to understand it.
Thanks for sticking with us and keeping up. We don't know what is next right now. I don't really know when we will reenter the world. But, for now will you just continue to pray for us? Will you REALLY REALLY pray for the boys like you have never prayed for them before? Pray that the feel a peace that surpasses all understanding and that they will feel how much their daddy loves them even though he isnt able to show them right now. Let them feel strength in His mighty power.
And as I type this...the Holy Spirit intervenes and shows me MORE. He reminds me that he has prepared an ARMY of warriors to link arms with me for such a time as this. There are so many others who are in need of these prayers... some very precious people in my life are hurting daily and crying out to the Lord to show them the way. Begging for God to continue dropping grace into their laps when it feels like hope is running out. The reminders come at the most perfect time...but we MUST be tuned into the Spirit...or we will miss out. His blessings will continue to overflow, but I don't want to miss a single one. Let the eyes of our HEARTS be open and let the wondrous gifts overflow. I am choosing to take HIS yoke upon me and leave my busted up yoke at the cross. Amen.

justin update

Today I am updating from my cozy recliner...in the Methodist hospital. I am exhausted, the kind of exhausted that only black coffee and praise songs can even make a dent in. I feel like I could just crawl up in a bawl and sleep for days....but in the same breath I feel like I could put on my tennis shoes and run a half marathon right now. Weird, I know. God is still holding us so tightly down here at the "bottom"...we continue to need him for every breath. We have no idea what tomorrow brings, next week or anything after that. We don't know if Justin will go home Tuesday, we don't know what his plan will be when he does get him. We don't know why this is happening. We don't know if it will happen again. We don't know anything...except that our hope lies in Him. Justin's every heartbeat is given to him by our Father. He has written a beautiful story and we want to skip ahead to the end to see what happens. But, we just cannot. God's storybook just doesnt work that way.
Here is the scoop...last Tuesday Justin had his chemo treatment. Wednesday he started experiencing pain, fevers and swelling. Thursday  morning he visited with his oncologist and she sent him straight over to have his port removed due to infection in the port. The port accesses his main arteries so infection would no doubt hit the blood stream. Justin's primary dr (who is literally a gift from Jesus who LISTENS to us and hears us) consulted with us and with his oncologist and Justin was admitted into the hospital on Thursday afternoon. We are sitting here for an indefinite amount of time watching blood cultures and white blood cell counts. IV's are busting left and right. Every vein in his arms have been poked and they are swollen and black and blue. The Internal Med Dr here wants to put in a pic line, but that cant be done until we can get more answers on this infection. We are stuck.
There is no place to go from here but to our knees. Justin continuously prays for grace and mercy.
We miss our kids. Please pray for them Pray God's mighty armor will protect their hearts and minds while mom and dad are away...again.
Justin is miserable this time around. He just wants to rest. He is on endless amounts of strong antibiotics and they hurt going in his little tired veins. He just wants to rest. We love you all, but this time around he just doesn't really want visitors. This is hard for me because I want you all here. My mind gets tired and weary watching him be poked and struggling to do basically everything...but God is wanting me to turn to Him right now and I just can't argue with that.
I havent really left except to bring the boys up for a few minutes. I will leave tonight because Justin desperately wants me to be at the Still Water Dinner. It is important to him that I honor this commitment and I am grateful for his selfless heart.
I love of all of your texts. I can't answer them all...we are too loved! I would be texting all day...but I read them and we love them. We love the scripture. It comes at just the right time.
An infectious disease doctor is coming tomorrow to asses the situation and make a recommendation. We are looking forward to that, but we are also not leaving any of this in the hands of doctors. God gave Justin a word for such a time as this. We are waiting expectantly on God's plan and we will scream glory from the rooftops when He takes us to the next place he has prepared for us.

needing God more than ever

I usually love when I get a chance to sit down and reflect on my blog. I love to share the sweet things our kids have been up to and the even sweeter things that God has been showing us. This post leaves me a bit anxious though. I don't want to write it...but I do.
Some of you have followed along for a LONG time, some started when Brody was sick as an infant, some when my mom passed away and some when Justin got sick. Either way, I have had some VERY faithful prayer warriors come alongside this family due to this blog!
I am going to keep it short and sweet because I am exhausted. Exhausted from talking about this with only a very small handful of people in addition to a lurking stomach bug. I have been sick more times in the past few months then ever before in my life. When God says slow down...he flat out MEANS it!
Almost three years ago (seriously, almost THREE) our lives changed dramatically when Justin was diagnosed with systemic sclerorsis or scleroderma, ploymyostitis, intersit. lung disease, RA, fatty liver etc and then later avascular necrosis.
It has been a long three years. It has been a good three years because we have made the best of it...but obviously very hard as well. Lots and lots and lots of our time has been spent in hospitals both in town and out of town, emergency rooms, doctors offices, out patient surgery centers, labs etc.
Lots of time. So so so much time.
And, here is the thing. Justin doesn't have LOTS of time. None of us have a promised amount of time here...and I think we all want to spend our time as best we can.
There was an appointment on Friday that just sent us over the edge. Right over it. We crashed and burned off a cliff and we are trying to find our way back to the top. But, as we settle down here crashed on the ground (in the place we need GOD the VERY most) we are kind of thinking this place may be OK.
This is what I mean.... The doctor revealed that Justin's scleroderma in his organs, specifically the "guts" is more aggressive than he has ever seen. However, it is not limited to his guts...it is messing with liver, kidney, bladder and so on. There are some choices to be made. Does he want to bounce from one specialist to another being poked AGAIN for things he has already been poked for? To be told ultimately this is just the nature of your disease? Not really. Not really at all. His rheumatologist made the decision to take him off IVIG. It just isn't worth it anymore. It is too hard on Justin's body for the time that he has to spend doing it.
He is NOT getting off all of his meds right now. But, he will not be taking any new medications/seeking further medical advice. We have tapped that train OUT. They threw the kitchen sink at him almost three years ago and we have been fighting like hell since that day.
The man graduated from college with honors and kicked booty at his job during the first two years...he has more than proved his strength. And, there is nothing left to prove. God has a plan for him and we don't believe His plan is to heal Justin through medicine. Hear me say this: We BELIEVE that God will HEAL Justin...we do not believe that God will heal him through medicine. We are STILL fighting. We are NOT giving up.
So, a time has arrived where all things are unknown. What is next? What does this really mean?
We just don't know. One thing we do know is that we plan to be more intentional with our time than ever before. We have made some legit memories in the past three years and I pray that we have fifty more years ahead to make even better ones. This doesn't mean that we are going to hide in a hole...it just means that Justin doesnt feel good. Like, ever. So we aren't going to push things. We arent going to say yes when we need to say no. We love saying yes, but we hate the guilt we feel when we have to say no last minute. It is hard to be social people who just...can't.
What can you do for us? You can pray for us, but more importantly...please pray for our children. I have some specific pray requests for our kids that I will update soon. But, for now just pray for them...God knows what they need.
Please don't feel sorry for us. We are blessed to dwell in the things unseen and know that it is far greater than THIS. This is a new place for us..down here are the bottom. We don't hate it. We don't love it. We need God more than ever...and we like the way that feels.

dancing with justin

For some reason I have not been sleeping well lately. Tonight, while I was restlessly arguing with myself about whether to get up and work or take some melatonin....this random song started going through my head. Tim McGraw's live like you were dying from 2004. Why. I don't really prefer country music. It bores me... unless my husband is whisking me around the dance floor.
The song is about a guy in his early forties who finds out he is dying and he begins to check things off his bucket list. He goes sky diving and rocky mountain climbing and he loves deeper and speaks sweeter and he reads the "Good Book" and he forgives and rides a bull and you get the picture. Cute song and apparently very catchy as it showed up into my brain 10 years after its release date. I very much remember wearing a short denim skirt and dancing around the sawdust circle at midnight rodeo with my cute boyfriend to this very song. Adorable. What a care free time of our lives! I doubt we recognized how carefree we were.
Here is where it gets a little less adorable.
My husband can't dance anymore and he is only in his early thirties (31 to be exact) and he sure as heck can't do any rocky mountain climbing. Depressing, right?
For some reason, no matter how tired and delirious I am right now...I just can't be sad. Somewhere along the road of doctors telling Justin to live like he were dying (oh yes, several have said as much) he realized that isn't a bad way to live. It isn't much like this song....because it's better. Living in daily never ending pain with gazillions of meds and appointments and no spark of hope in providing for his family in the near future...wait. That's not better. Waiting for the next "issue" to be discovered and getting 100% wiped out after being out of the house for 2 hours. Not better. Not a bit.
But, what IS better is the opportunity he has to look death in the face and say...it's ok! I am not scared of you. I don't like what I will leave behind, but you are good.
It is just all too cliche for us to declare that we are going to live like we are dying. So, maybe we should all decide to live like the power of Christ is living in us instead. He traded himself for our lowly souls to wander this earth and rush around and be on time and have the laundry put away and make lots of money and wait. No, that's not right....That can't be the reason. Our Father must have had more in mind for us when He allowed His son to die that death. As that temple veil parted and the sky darkened...we were given LIFE. Heaven became accessible. We need no longer fear death. He shed blood so that we may live like we were dying. 

I don't know why this song popped into my head tonight. I don't know why this story is ours. I don't know how my husband smiles everyday. But, I do know that the ending to all of this is far greater than my wildest dreams. I may not get to be whisked across the dance floor to songs I barely like...but I am going to let this handsome man lead me in a dance far greater than any dance that ever hit the sawdust floors of midnight rodeo.

And we will sing a new song...

No guilt in life no fear in death
This is the power of Christ in me
From life’s first cry to final breath
Jesus commands my destiny
No power of hell no scheme of man
Can ever pluck me from His hand
Till he returns or calls me home
Here in the power of Christ I’ll stand!