Sunday, May 11, 2014

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 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 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 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!

Tuesday, May 6, 2014

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 will surely make you smile! And if you don't "get it" then you should hang out with Justin more...because then you would :)