What if it doesn't get better?
What if my husband is only awake about 5 hours a week for another 35 years?
What if he continues to suffer? And I continue to lose steam in the fight to stay strong and positive and provide endless care, mercy and grace? And the boys start to quietly tip toe back to our room to check on daddy less and less? And I continue to feel less and less like a wife each day and more and more like just a caregiver?
What if this temporary life starts to feel like eternity?
What if I start to have thoughts that leave me filled to the brim with guilt?
What if it doesn't get better?!
I typically steer clear from writing when I am hurting so deeply. I wait until God shows me the rainbow. I wait until my head feels more clear and my heart feels more full. I wait until I can reflect on the hard spot and how graciously God lovingly pulled me out of that place and back into the light of eternal perspective.
I have been tapping my foot with my arms crossed for weeks and that dang rainbow hasn't showed up. And I realized just a few moments ago that I don't have to "see" it to know it's there. Because...it's there. That rainbow is hope and hope doesn't take a vacation.
I am allowed to feel alone. I am allowed to feel like it is unfair. I am allowed to really really really want my old husband back. I am allowed to hurt for my kids. I am allowed to feel so very broken.
And then I am allowed to take some deep breaths, get on my knees, close my eyes tightly and PRAISE him in this darkness. He is more than enough for me. I will not lose heart.
I will not lose heart. I will wake up tomorrow and bask in his majesty. He is waiting for me. And when I lose sight again of the glory that lies ahead...He will again wait for me. 10,000 times He will wait for me.
And it will get better.
Because, I know for a FACT that this is not our eternity.
In His word...Hope awaits. So, I better get my butt in the word.
Friday, January 23, 2015
What if it doesn't get better?
Posted by misty mac at 8:54 PM
Thursday, January 1, 2015
Top 20 of 2014
This year has been crazy. I haven't blogged much at all. Justin said this year has been the worst...and because I love a good challenge, I went ahead and chose to prove him wrong.
Here is my top 20 of 2015...no particular order, because I had to scroll through instagram to remember what even happened this year. I got lazy on some of the pictures...but Justin admitted this year wasn't so bad = Winner.
1. VAULT - It has been so fun to sit back and watch God put this ministry together. Plus getting to know baby Jules and all the other sweet kids that have been placed in this community.
2. Disciple Now - Having the senior boys here was a blast. I couldn't tell you who had more fun...Justin or Brody, Bryce and Brax.
3. FaceTime with Josiah - The Fickeys got to visit Josiah in the Congo and they called us! It was a flat out gift to see that baby boy with his mama and papa!
4. Brody graduated preschool - he was such a ham on the stage.
5. Brody also started kinder which has been pretty wonderful. And Bryce in 3rd grade...ugh get out!
6. Still Water - I was blessed to be a part of this organization! A successful fundraising dinner, super saturday, creating champ camp, two weeks of camp and wow...lots of great memories and very special friendships made!
7. The Quit Trippin Fool shirts - no explanation needed!
8. I got to go to New York with my bff for my 30th birthday!
9. Bryce was awarded the Principals Award for PE!
11. I witnessed a miracle.
12. Beach Trip with the Harpers
13. Our last Christmas Program at FBC - this is so bittersweet.
14. Clays for Cara - honoring a dear friend and once again seeing our community rally for us.
15. Camp Eagle
16. Going fake sky diving for Katie's 35th!
17. Another trip to New York for Hillsong! - this one was a bit bittersweet too, but New York is good no matter what!
18. Spending Christmas at my Dads house!
20. Justin. One more day with Justin.
Posted by misty mac at 10:27 AM
I have known Justin for about 11 years. Lots has happened in that time. Four houses. Three kids. Two dogs. And one VERY great love.
While Justin was having a smidge of a health scare recently, a great friend distracted me with looking up my celebrity look alike. I will not even dare share the nonsense that this dumb website generated...but it got me thinking about the fun anecdote of our life story as a movie.
If you have never sat down and thought about what celebrities would play each of your family members in a lifetime movie...then do it now. It will make you smile :) Anyways, I kind of always considered our story as more of a tragic love story. There is this great love, but something was always in the way. A baby before marriage. A stomach bug on our wedding day. A dying grandma. A special needs son. A terminal diagnosis. A lot of loneliness.
Then, I took that story and really meditated on it. None of those things are what I think of when I look at the past 11 years. What I really think of is the moment I saw Justin for the first time... I got weak in the knees. The smile on Justin's face when he met Bryce for the first time...the way he looked at me that day. Laughter. So much laughter. Adventure. Companionship. Real, true and very deep commitment.
In the beginning we were pretty focused on us. I had been in a hard relationship and I just wanted to be happy. My focus was ME and MY happiness. Justin saw for the first time his true potential and knew HIS future would be bright. The we blinked and WE were pregnant with our second son, church hopping, moving to Boerne from Houston for a fresh start. WE really thought we knew what we were doing. Then before Brody was born, God whispered something to me and everything changed. The climax.
I, ME, WE, US, MINE...all changed to HIS.
The plot changed so significantly in that moment. Because, the happy ending was Jesus. The story wasn't over, but no matter what...the happy ending was Jesus. The diagnosis came. The days got harder and longer. The carefree days of the beginning screeched to a halt.
There is no end date to our story. Justin could pass away tomorrow...or he could outlive us all. Either way, the Macs don't end with that. Justin's sickness, his prognosis, his pain...that is our reality, but it is not our LIFE. Our life is laughter, companionship, hope, little boys, sarcasm, frustration, pajama days, hand holding and Jesus.
We arent a tragic love story. We are a dark comedy...which just so happens to be my fave.
Posted by misty mac at 9:16 AM
Thursday, October 23, 2014
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.
Posted by misty mac at 11:31 AM
Friday, August 29, 2014
Posted by misty mac at 2:31 PM
Saturday, August 2, 2014
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.
Posted by misty mac at 1:34 PM
Monday, June 30, 2014
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!
Posted by misty mac at 7:38 AM
Sunday, June 15, 2014
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.
Posted by misty mac at 10:54 AM
Sunday, June 1, 2014
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...
Posted by misty mac at 10:04 AM