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.
Monday, April 14, 2014
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?
Posted by misty mac at 3:19 PM
Sunday, March 9, 2014
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.
Posted by misty mac at 12:06 PM
Monday, March 3, 2014
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.
Posted by misty mac at 10:16 AM
Saturday, March 1, 2014
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.
Posted by misty mac at 10:58 AM
Tuesday, February 25, 2014
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)
Posted by misty mac at 6:45 AM
Tuesday, February 11, 2014
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!
Posted by misty mac at 6:26 AM
Monday, February 3, 2014
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.
Posted by misty mac at 8:48 PM
Sunday, January 26, 2014
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.
Posted by misty mac at 9:34 AM
Tuesday, January 21, 2014
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.
Posted by misty mac at 1:15 PM
Friday, January 3, 2014
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!
Posted by misty mac at 12:47 AM
Sunday, December 8, 2013
December is always a busy time. There are lots of things going on at school and at church and with friends. Fun things and important things, but honestly all I really want to do is hunker down with my family by the fireplace and bask in all the glory of Him and the gifts we have right here in our living room. Much of this has to do with the fact that I am a major weenie and I am afraid of the cold! I am not typically a hunker down kind of girl, but as God has changed our story so significantly... being home is where I now feel the most full. There are moments when my relational soul feels stuck at the lack of commitment we are able to make outside of the home right now...I miss making plans and I miss seeing my husband enjoy the company of others. But, right now God has him planted at home and we are no longer WAITING. We have stepped (temporarily I am sure) out of a season of waiting and wondering. We are not seeking new doctors and new answers, we are not looking ahead to a time when things will be better, we are not waiting. God has given us peace to sit and rest. He has shown us how to be still. And don't you worry...I put up a fight on this as often as I can. Being still is NOT what I do best. I always want to know what is NEXT. I want to know where I will be serving next and how He will use me in the coming season. For now, He has given His word that we are just where we are supposed to be. Serving in the places we are called to serve and dwelling in the overwhelming spirit of peace. God knows what is next but He still suffers along with us, He feels each ache and pain that Justin feels, He cries the same tears we do, He sits still in this place with us. He is going to fully heal Justin, and that is a promise! God's unending resources leave us feeling OK with what is happening NOW. Not much is happening, but SO much is happening. He is healing our family in ways I didn't realize we needed to heal. He has shown us how to serve right now...it looks so different than before! But one thing is for sure, there is no diagnosis or sickness or pain or fear that will keep this family from sharing what has been shared with us. Sitting idle is NOT what the Macs are about...because we don't believe that is what God is about. It is funny how much He allows us to do...even when He asks us to rest. Our God is so complex, yet so easy. Love it.
Posted by misty mac at 12:04 PM
Friday, October 18, 2013
I have been quite the crummy blogger lately. I have been working a whole bunch which is new for me, but so amazing! I have been blessed with the opportunity to work with a ministry founded on the idea of bringing Christ to youth. I have learned so much over the past few months as I have settled into this community. The sports world (which is soooo not my world lol) combined with bleeding hearts for youth combined with the GOSPEL is just almost too good to describe. The opportunity to bring the haves and have nots together for a week away from the world is a glimpse into heaven. No phones, no TV, no status updates. Just Jesus and a whole lot of fun.
I only attended camp a few times when I was a kid. Usually with one sweet gal who always invited me along to church activities. I love the idea of being able to send my kids to a summer camp that we don't have to get a loan for. I love the idea of sending them somewhere that I am CONFIDENT they will have the opportunity to grow closer to Jesus. There are so many incredible camps around Texas. So many awesome choices...but the Macs choose Still Water and we are PUMPED!
Around here we have been just doing life. School, sports, bible study...and all the regular fun fall things. Justin has enjoyed every last second of being home with us. He is able to rest AND spend time with me and the boys. The time is priceless. Not only because his future is so uncertain, but because we have all grown closer than I think we would have ever had the chance to. Don't get me wrong...I wouldn't choose for Justin to be sick if I had the chance, but this has given us a shot at a life of together-ness that I didn't know existed. I sadly grew up in a home without love. They loved ME, but they did not love each other. I grew up in the center of their worlds. Figuring that out as I grew was very difficult. It hardened me to many things and planted unhealthy expectations. I have had wonderful examples through extended family and friends, but nothing quite compares to the relationship between your parents. And I think that is even more so the case for me because I was an "only" child (only child in the house). I so so so wanted to fill my house with kids so that they could experience life with partners. I want them to know what sharing and forgiveness meant inside of a home. I desire for my kids to know that our home is their safe place...a place where we respect each other...a place where we love each other equally and we love our heavenly father most. I think my parents did a great job. I think they loved me so well. I think my dad sacrificed much to offer me the life I was given. But, I did miss out on one key thing. I missed out on understanding unconditional love. I saw toxic love filled with manipulation and insecurity. It has taken me a long time to swallow the fact that although my mom loved me so much, I was often a pawn in the game of her life. I forgive her and think she was an amazing mom. But, stopping to realize those things took a toll on me. Allowing a healing process to begin meant digging deep into memories I would have rather left packed away. I wanted to only remember the good times and the sweet moments...but that is not fair to me or my family. I have been carrying burdens around that I never realized I was carrying. My mourning in the loss of my mom was stifled by hurt and I didn't even realize. This is not a new revelation that came to me last night...it has been an ongoing process over the past five years and I feel like I am so close to a place of setting it all free. I am realizing this morning that I indeed will NOT come to a place that is "normal." There is no new normal to have...there is just life to live. I have got to officially hand over the keys and that means I may have to clean out the trunk. I have tip toed around the junk in this trunk for a long time and in a a sweet moment on my knees last night He showed me some stuff I was glad to see. I went to Him for prayer over Justin as he had to spend the night in the ER and I just feel like He was giving me a little nudge. A nudge that reminded me that He has given me a voice, He has given me a great passionate spirit, He has given me convictions and He has given me a man that needs ME. My parents were surely around when I was created (gross) but, I am a child of God's. My parents raised me, but I belong to Him. He created us each so uniquely and it's time to stop expecting one another to look like the "mold" of a Christian. I have battled with who I am over the past 8+ years. And I am FINALLY understanding that He made us different for a reason. And... I am starting to like the way He made me ;)
Just a side note on J...he is home and resting. They suggested he be admitted, but of course he declined. Because he is just so... Justin. He has done too much lately and his body said STOP. His body can't keep up with his brain and that is something he may never get used to. He was able to get some IV fluids and steroids and felt better right away. It was a not so subtle reminder for all of us that we are not just living a fairy tale with a stay at home daddy. We are living life...real life.
Posted by misty mac at 1:50 PM
Wednesday, September 25, 2013
Posted by misty mac at 1:13 PM
I have found that it is very difficult to explain what Idea Camp is. It was a "conference" to engage in conversation about the world around ourselves. It was a place where non profits brainstormed and world changers shared their hearts. We learned and we were challenged. The topic was Human Care which spanned from self care to human trafficking to the orphan crisis and everything in between.
I had the privilege of attending camp with my two best friends...Justin and Katie. It is such an incredible thing to sit in His presence and see PROOF of His goodness amongst our world. It overwhelms me as I am reminded how He uses such unsuspecting people to do His work. There are so many ways to fight for His justice and so many ways to allow ourselves to be used for His glory. For some people we met that meant moving their family to Iraq or Haiti, for some it meant taking pictures, for some it meant advocating for the least from their living room. But for no one did it mean to sit idle.
I won't go through each thing I learned, but I was truly challenged by so much and I just needed to get it down in one place. There are so many areas where I fall short in glorifying Him. I am more quick to offer grace to a stranger than sometimes my own family members. I am guilty of patting myself on the back when the patting was owed to another. I am guilty of comparison and judgement that steals from the joy of His greatness. The one who gave it ALL has entrusted us with so much and it burdens me to know how narrow minded and naive I can be. And no, this was NOT a self deprecation conference to see how we are falling short. It was just an eye opening time to reflect on the heart of a servant. It was a collaboration of people who have allowed their hearts to be broken for what breaks His and who will die trying to make the least feel cared for. I don't feel like I was qualified to be in conversation with many of these selfless people, but I left feeling refreshed and with some new perspective. I don't believe that God has called me forth to change the world or start an organization that will save thousands...but I do believe that He has called me to glorify His name. I know that He has called me out of my comfortable life and shown me much hurt and much sadness so that I can see the world beyond myself. The most influential thing I heard this weekend was from Rob Morris..."God is attractive all by himself, He doesn't need us to make Him look good" amen. We don't need to protect Gods image and we don't have to put all of our hope into results. Because "we aren't called to results, we are called to Jesus."
Just a few more tidbits on the weekend...
We were encouraged by Brandon Hatmaker to replenish ourselves. To drink in the Holy Spirit so that we may finish more than a sprint. He reminded us the true meaning of discipleship and partnership and how by simply offering DIGNITY (to those we serve AND serve alongside) can make the gospel explode out of its tiny box we have put it in. Mark Horvath (with Invisible People) talked about the power of vulnerability. He shared through his experiences of building trust with homeless how inconveniencing ourselves is one way to feel God in the fullest. One of my favorite things I quoted was Leroy Barber saying "Poverty is not a disqualifier of greatness"...and I myself have put that very stereotype on many. I forget to offer DIGNITY to those I am serving. I think I have a CLUE about why they are where they are. Peter Greer communicated how we need to remember we cannot save the world, because He already did. We can't let ministry be our mistress and we can't allow there to be a divide relationally (through other non profits, the church etc). Steve Graves spent some time allowing us to reflect on balance. "If anything consumes you more than Him, then you are not flourishing for Him...you are floursishing for yourself." We need to keep focus in that who we are is more important than what we do. Jennie Allen came out with a fiery passion to kick us all in the gut (in a nice way of course). She challenged us to be brave enough to follow His lead no matter what sacrifice that may mean for ourselves and to NOT hold back.
I walked away from this weekend knowing that relationship trumps rescue (Laura Lasky) and that His call on our lives differs greatly from one to the next. I learned about burnout, balance, communication and pride. I feel compelled to dig deep for authenticity and truth because that will trump the temporary satisfaction of a bandaid. I fell in love with my God all over again this weekend. My heart is full, ya'll.
Posted by misty mac at 12:53 PM
Tuesday, September 10, 2013
It has been exactly a month since my last post...WHAT is my problem?! There has been plenty to write about. But time....not sure where it goes! We had an amazing summer and the first day of school went off without a hitch. Bryce is in second grade and just a few weeks away from turning EIGHT. Gross. It just cannot be true. Brody started his last year of PPCD and his last year of FBC Preschool. He turns FIVE TOMORROW. Barf. Someone stop the clock! (ooey gooey brody post coming soon!) Braxton started preschool at FBC and thank JESUS he does not have a birthday anytime soon. I need him to be three for as LONG as possible.
Justin's recovery has been going well. Two hip replacements this summer, check! He has pushed himself a little hard the past few days and so he is catching up on some much needed rest now. Two hip replacements in two months would slow some people down...but not this guy!
Justin is WALKING.
Some would even say he is strutting.
Ok...I said that.
God is incredible and full of so many surprises. There have been so many things at the top of our prayer lists including keeping infection away and for there to be no rejection issues and for him to not have a flare up...that we flat out forgot to pray about him WALKING. God had that little treat tucked away as a huge gift that we are just in AWE of. God is bigger than our wildest dreams. His expectations are so much greater than our own.
Justin is now about 6 weeks post op and while he is dealing with some extra pain and inflammation (due to doing a little much maybe? shhhh i didnt say that...), he is really doing great. It sometimes seems that at the end of every giant mountain we conquer there is another mountain just as big waiting on the other side. There is discouragement around every corner. Putting on a brave face is irrelevant at this point. God doesn't give a hoot about our brave face. He cares about our heart. You can't mask your heart. You can try...but you can't do it. Try it. Double dog dare ya.
There is just not one chance that this trek would be possible without the hope, patience and perseverance that God provides. Unfortunately, Justin's body is not absorbing nutrients properly and this could be a factor of many different things. Right now he is severaly anemic, which is dangerous for his (already messed up) liver. He will have to do iron infusion for awhile, in addition to the IVIG. More infusions, more needles, more time at the oncologists office. As we spent most of the summer focused on his hips...we have a lot to catch up on regarding the rest of his health. We have follow ups with ALL the doctors...ones we (he) has put off for a long time. Justin stopped going to these specialists a long time ago because he (we) were tired of them finding something wrong with him at every visit. Another diagnosis, another prescription, another side effect. Yawn.
Pray for clarity and perseverance.
God has greater plans for this family than doctors appointments. He has equipped us for something SO much bigger. I can do all things through Christ who strengthens me. Not just some things. I can do all things. Nothing is impossible with God. Nothing. God has given our family a story...but He has given us so much more than that. I love watching His plan unfold...each day a surprise. Each day more understanding of how vast His kingdom is. Each day a reminder of how present He is. I need Him MORE.
Now don't you dare miss out on these fun pics!
Posted by misty mac at 9:17 PM
Saturday, August 10, 2013
We sure are grateful for all of your prayers. Justin is doing really well post op. His surgeon does not have him starting PT for another week, because he really just wants him to rest and heal. This time around has just been much smoother and more manageable for all of us. There is a light at the end of the tunnel and Justin has his eyes on the prize. And that prize is WALKING.
I have been thinking a lot about prayer lately. I am so excited when our prayers are answered and I know that God hears us loud and clear. I know He hears each and every request made to Him. And, I know that sometimes our requests are not answered. Or maybe they are, but way later than we had hoped. I try to pray according to His will...but I am also not afraid to ask Him for a miracle and to change his mind. He made me GREAT at changing my mind all the time, so surely he possesses that gift as well ;) Sometimes unanswered prayers bring upon discouragement that makes me want to just forget it. Sometimes just having enough faith to know that GOD knows what we need is tough stuff. The Lord was pleased with Solomon when he came to Him and asked for wisdom and discernment. I want to be radically dependent on Him. I want to change my prayer life dramatically...seeking less of what is going on in this house and more of what is going on in His house. I so easily get complacent in letting circumstances define me...even when I insist they do not. His kingdom is so much bigger than me and my house. I came across something David Platt wrote:
“God beckons storm clouds and they come. He tells the wind to blow and the rain to fall, and they obey immediately. He speaks to the mountains, 'You go there,' and He says to the seas, 'You stop here, and they do it. Everything in all creation responds in obedience to the Creator...until we get to you and me. We have the audacity to look God in the face and say, 'No.”
And that is true. Not only do I have the nerve to tell him NO, sometimes I just flat out ignore Him and worse than that....I make a LOT of decisions without Him at all. It is so obvious to me when I make a decision WITH Him. The peace you feel in those decisions cannot be explained.
It is time to exchange my prayer pants. Mine are dingy and need new life. Good thing it's tax free weekend.
In other news, we have about 14 days of summer left. We are pretty much homebound so I can take care of the mister....AND I broke my stupid foot. It is just the little bone on the end, but it hurts and its a big ol pain in the booty. Justin and I plan on sword fighting with our crutches later. Bummer.
We are going to enjoy these last two weeks of summer no matter the circumstances. Currington Elementary is about to take my Bryce away and bum foot, bum hip, bum whatever else...we are gonna make the BEST! So, Amen to that, ya'll,
Posted by misty mac at 12:17 PM
Friday, August 2, 2013
Today was one of those days that I wished would have ended sooner. I know I have used the roller coaster analogy before, but I am just too tired to think of anything better right now. Today was a roller coaster. A big bad scary one. One that loops way more than necessary. One that you feel nauseous while you're on, and even more so when you're off. As we dealt with life today, my stomach was flipping and turning and knotting. But, unfortunately I wasn't anywhere where they serve funnel cake.
The day started with the doctors reporting that justin's "everything" was low. Low calcium, magnesium, blood sugar, potassium etc and most importantly...his blood count. To try and explain the way things are communicated here among doctors and nurses would be a joke. It's just impossible.
The verdict was to give him a blood transfusion and also calcium, magnesium and potassium through an IV. It is a scary things to watch someone else's blood drip into another person's body. Especially when the receiver has an uncooperative body. I know blood transfusions are common...but this is Justin we are talking about. Pain was at an all time high today and the frustration of not being able to help him myself was overwhelming. It was hard enough dealing with a doctor that hadn't taken the time to look at his chart and find out what he was diagnosed with, but we also found out she had changed some very important meds without checking with us. It is pretty surreal to have so much responsibility for Justin's care. Nobody in this building loves him and care for him as much as I do, and I am grateful to be his advocate, but I am not gonna lie ya'll...it is a lot of pressure.
I felt helpless many times today. I was on my knees pleading to Jesus. For relief, comfort, some understanding, some intervention! I needed Jesus to hear my cries for help. I know He did, and I am comforted in that, but still heartbroken at the same time. I know that God is walking with us down this dark and scary road. I know that for many reasons. I trust Him. I know His plan is good. I know He hears my pleas. I know He can heal Justin. But, today was a day where I didn't want anything but for the road to end. I just don't want this anymore. Today it is too much.
Justin couldn't handle visitors today, but before I had time to let anyone know that...comfort was sent and it was so good. So necessary and so good. God delights in my weakness because he can hold me closest at that time, but He knew what I needed to keep me from darkness. He always knows just what we need. He sent laughs and hugs and just bodies to sit in the waiting room...and food at just the right time. The texts and messages and prayers are so precious. Even when we can't respond and even when we think our phones are going to spark and catch fire from going off so much...we are reminded how He brought so many to carry this load alongside us. It is really incredible. We aren't THAT nice...so its clear that you were are all sent by Him ;)
And we have a 6 foot bugs bunny in here. So, you can't be too sad when that is looking at you.
We don't have information on his current labs yet. We probably won't hear how things are looking until morning. If his blood counts haven't gone up, then he will have to get more blood tomorrow.
I am done with today. I ran home for a little bit earlier to kiss my boys and to have a much needed cry in my own shower. Now I am where I am supposed to be...advocating for Justin and praying fervently for tomorrow to be so much better than today.
Thanks for keeping up, ya'll. Your prayers got us through this day. No doubt about that.
Goodbye today. I am done with you.
Posted by misty mac at 9:03 PM
Thursday, August 1, 2013
Surgery was a success! Pain is present (as expected), but is being managed. Right after surgery was hard for him pain wise, but today is much better. PT came in around 9:30 and he made it from the bed to his chair with a walker...and he didn't barf! My man is so legit. He makes using a walker and wearing a dress so macho. For real.
Prayere requests include: pain management, AGAINST infection (this is the biggest prayer request as this is the biggest risk factor for him), rest, for the boys and everyone who has them, a more speedy healing at the incision site than last time, and for the transition from hospital to home. We will be here a few more days...not sure exactly how long.
The time before the surgery was tough. Anxiety + tension + worry = no bueno. We didn't take the time we did before to really draw nearer to the Lord in the days before surgery. And the absence of that peace was a bummer. Thankfully, Christ dwells in our hearts. He desires us to call out to Him...but He shows up even when we don't take the time to ask. Ephesians 3 reminds us that He gifted us with the ability to access Him at any time. Our faith gives us His strength...and with that we have all we need. Walking out of the double doors (from pre op) to the waiting room reminded me of the walk I used to make from the Cleveland Clinic hospital down the empty hallway to my hotel room. It is the most lonely place in all the world. VERY lonely. Letting the tears go or holding them back both bear a weight far too heavy. I hesitated before walking out of those double doors yesterday. I wondered if I had just had my last conversation with my husband. I wondered if he would make it out this time. I irrationally considered that if I didn't walk through the doors, then I wouldn't have to worry. If I stayed safely on that side...then everything would be ok. Grief makes you think crazy stuff ya'll. And, I really felt safer on that side of the doors. I closed my eyes and prayed so hard that a nurse would not ask me if I needed help getting to the waiting room. I just needed to stand in that place for a minute. After many deep breaths I pulled up my bootstraps (not really, who would wear boots in July?!) and pushed open the doors. The feelings of fear didnt go away, but as I took a moment to accept the reality...peace set in. I wasn't strong enough to ask God to help me. I couldnt come up with the words. I didn't know how to make a word come out without totally losing it. I couldn't even form a prayer. But, God filled that space where the fear was. He used a big bad gang of warriors to stand in the gap for me. I didn't have to ask. He knew. And they knew. Justin's fears were different than mine, but we both were covered. He delighted in our weakness, because He got the chance to be strong. Pray that we will both continue to give Him the glory for our strength. Pray that we will remember the pleasure God has in our weakness.
Thank you to each of you who have texted, messaged, called, emailed, sent goodies, signed up to bring us food, prayed, mowed our yard, loved on our boys. Thank you to all of the people who made walking through those double doors easier. You all bless us more than you know.
Forgive us for being lame communicators right now!
And now, look at all this awesomeness below. Fall is going to be BUSY time with school and sports and LOTS of places to share your gifts. Here are a few of my VERY favorite things:
Get involved, ya'll.
Young Life Clay Shoot - August 18th (email@example.com)
Richey Family Adoption BBQ - September 7th
Run at the Ranch - September 28th
Clays for Cara - October 5th
Young Life Banquet - October 6th (firstname.lastname@example.org)
Stillwater Sports Camp Scramble - October 17th
Save the date for Taking it to the Streets Rodeo event November 9th
Posted by misty mac at 10:41 AM
Monday, July 29, 2013
Ok, blog break over. I have had lots of posts floating in my head over the past few weeks...but never enough time to sit and focus. We survived chemo and IVIG week. It took a crazy toll on Justin and I cannot say that he is really looking forward to the monthly IVIG, BUT it is the best thing for his immune system....so it must be done. The right hip replacement will take place early Wednesday morning. He is really looking forward to it. That may sound a little silly since it is a big and painful surgery, but nothing can beat the pain of trying to deal with living life with a collapsed hip and cracked femur. It is daunting to look ahead to the recovery, but encouraging to know that some relief WILL be provided.
Posted by misty mac at 7:52 PM