disney!

The Disney post is FINALLY happening! I have been planning a trip to disney since the second I became a mommy. It was so so fun to plan. We chose February for several reasons...the cost is lower because it is not a peak time, which also means the crowds were lower (major bonus), Justin is actually allowed to have days off in feb :) and we knew the weather would not be too hot or too cold (either extreme is really hard on Justin). It ended up being a great choice. It only rained one day while we were there and the rest of the time we were in shorts. I have a lot of die hard Disney friends and there are a LOT of disney blogs. And when I say a LOT, I basically mean like one million. It is overwhelming and ridiculous. My sweet friends gave me lots good pointers and I was able to pick up some money/time saving ideas from the never ending disney mommy blog land. We really took our trip slow. We did not do and see every single things and that was OK. We did what we were able to do without wearing out Justin and the littles and it was completely perfect. So here is our trip!

riding a taxi to the airport! brax LOVES taxis (and I am not really sure why) 

so that was a fun start to the trip. 

in true mac style...our trip was NOT drama free. we had a SEVEN hour flight delay on our way there. brody's shirt was very fitting for the day. 

we stayed at the art of animation resort and LOVED it. we went back and forth on value resorts vs moderate resorts and we decided that separate bathrooms and bedrooms trumped location. we stayed in a nemo suite and it was absolutely adorable. 

here is a pic of the pool. it was heated so the boys actually got in one night!

our first stop of the trip was the magic kingdom! 

there are just no words to describe the...well...MAGIC of this place!

Our first purchase of the day was an autograph book for Bryce and hats for the little boys. 

 first character sighting was chip and dale! all the boys loved the characters...but Brody was a whole different story. brody thought each one had come straight from the TV to the park specifically to meet HIM. precious beyond words!

lucky justin got pulled from the crowd to be in a little show. you know he just LOVED that!! this little gal with the orange hair wanted him to be her boyfriend :)

we had dinner the first night at the kona cafe in the polynesian resort. it was SO yummy. 

we were VERY happy we chose to do the dining plan. it really seemed worth it. 

we were good about planning nap time and taking our day slow, so we were able to make it to the light parade on the first night. 

day two we headed to hollywood studios. we had a character breakfast with some disney junior stars. these were certainly not MY favorite characters...but the little boys loved it. And it was all you can eat bacon so Justin and Bryce were happy :)

 I had some REALLY cute shirts made for the boys before we went. My very talented friend from high school has a facebook page for her creations. (sewn by shannon) I just sent her pictures of what I wanted and she made them and shipped them in no time at all! 

day three we headed to animal kingdom. 

the lion king show was awesome!

we had a great character lunch with mickey and his friends at the tusker house. 

we spent lots of time at epcot. we had heard that this may not be as fun for the boys...

but we loved it! it was very relaxing and there was plenty for everyone to do and see. 

at the polynesian luau. the boys had their faces painted at epcot! 

the boys did NOT want to get off the stage!

                                      

ok the rest of the pics are totally out of order. so sue me. 

our volcano dessert at the dinosaur restaurant in downtown disney

overdo updates

This post is long overdo. I have avoided it for so many reasons. Here goes.
When Justin was newly sick... every appointment was exciting and interesting. We visited specialist after specialist from here to Cleveland and we just knew that every appointment was going to be THE appointment. It was going to be the doctors appointment that had all the answers. We were going to walk out with a fresh outlook and a miracle medication. Jesus was going to be in the doctors office and use the physician to heal him. Every day we boasted with this excitement.
Twenty months later and no less than 100 appointments later...we havent had THE appointment.
We have had many many many many appointments to discuss what has gotten worse or what has stayed the same or what new worst thing we should be looking forward to. Sometimes, no, all the time this is hard to explain. The hardest question in the world to answer is "How is Justin doing?" I never know where to start. I never know what to say. I never know if I should smile and say GREAT or cry and tell the truth. I have a few girls that live it with me daily, but the rest of my friends/ prayer warriors/community have to just guess what is going on. Or catch pieces of updates from here and there. For a year I poured every detail into this blog. It was wonderful to have our community constantly know what to pray for...but that was exhausting. I had to remain so positive (which some people think is super natural for me and some people...well they know the truth about that). I had to find a way to tie each diagnosis, medical term, scary and sad post up with a pretty little bow. Sometimes that came easily and sometimes... well not so much.
I switched gears for awhile and tried to focus on my heart. I cannot change Justin's medical condition, but I can change my attitude about it. I can stand in this spot and watch the rain of grace and mercy pour down upon me and my family at the most unlikely times. My life is covered in unmerited grace. A grace I will never understand and never be able to reproduce. I am served each morning with a fresh platter of grace, mercy and compassion. Sometimes I sit in dwell in that platter and thank my Father for this gift, but sometimes I run right past it in a frenzy. Sometimes I get caught up in ignoring the reality so I think I do not need to dwell near that platter, sometimes I think I can do it on my own, and sometimes I am angry at the platter (i know, the platter thing is confusing...just bear with). Who can be angry at such a beautiful platter?! Only a very broken person. A person that is so in tune with the Lord's beautiful gifts, but so lost at the very same time. I think I need a platter tattoo. Or not. Whatever.
So what is going on with Justin you ask? Let's recap...and sidenote these descriptions are all from the mayo clinic website. (i get in trouble when i go to non legit websites)
Twenty months ago our lives were changed forever with these horrendous diagnoses (fyi i checked and this is how you spell the plural form of diagnosis...weird i know):

Scleroderma - Scleroderma (skleer-oh-DUR-muh) is a group of rare, progressive diseases that involve the hardening and tightening of the skin and connective tissues — the fibers that provide the framework and support for your body.Systemic scleroderma (which is the type Justin has) harms internal organs, such as the heart, lungs, kidneys and digestive tract. Polymyositis - Polymyositis (pol-e-mi-o-SI-tis) is a persistent inflammatory muscle disease that causes weakness of the skeletal muscles, which control movement. Medically, polymyositis is classified as a chronic inflammatory myopathy — one of only three such diseases. RA - Rheumatoid arthritis is a chronic inflammatory disorder that typically affects the small joints in your hands and feet. Unlike the wear-and-tear damage of osteoarthritis, rheumatoid arthritis affects the lining of your joints, causing a painful swelling that can eventually result in bone erosion and joint deformity. An autoimmune disorder, rheumatoid arthritis occurs when your immune system mistakenly attacks your own body's tissues. In addition to causing joint problems, rheumatoid arthritis can also affect your whole body with fevers and fatigue. Interstitial (in-tur-STISH-ul) lung disease describes a large group of disorders, most of which cause progressive scarring of lung tissue. The scarring associated with interstitial lung disease eventually affects your ability to breathe and get enough oxygen into your bloodstream.   Once lung scarring occurs, it's generally irreversible. Medications can slow the damage of interstitial lung disease, but many people never regain full use of their lungs. Those are the main issues which have resulted in breathing issues (we continue to praise that he not on oxygen!), aspergillosis (a fungal disease that lives in his lungs...forever), hardened esophagus which results in many digestive issues, fatty liver, lung fibrosis...and so on and so forth.  He is followed very very closely by his rheumatologist that we love aka dr. f and our family dr. who is able to manage many aspects of his health.   Justin is not getting better. He has to make random ER trips often for IV meds. He still does his chemo. He still takes 98345983467 medications a day. He still is in pain 100% of the day. He still will tell you he feels fantastic. He still works 98437589347 hours a week. Do not call me an exaggerator. Just don't.  We have visited all the stages of grief. Several times. Justin hangs around denial and freakish optimism. I hang around la la land where I throw in a little denial, a little self pity, a little reflection and a lot of hope. Ok yes I know those are not ACTUAL stages of grief, but if you havent noticed...I march to the beat of my own drum. And my drum is loud. And it has sparkles on it. So what? We have received some news recently that is not ideal. There are tests coming up quickly. We are weak, but filled with His grace. It is sufficient. No matter the outcome of any pending appointment....His grace is sufficient. The weaker we are, the more powerful He is.  Thank you for loving this family. Many of you decided long ago that you were in this with us for the long haul. Without you we would not be able to FEEL his grace. Some of you are newer to our lives and I know many of you do not know us at all. So thank you. Wherever you stand in our lives, we love your dedication to praying for the healing of Justin's body. For the daily healing of our hearts as we continuously mourn the loss of the life we once had. He uses you to mend us. He uses you to deliver his platter.  Thank you and Amen.

december to remember

This has definitely been a December to remember. I was thinking back to last year when I feared it could be our last Christmas with Justin. Although, our time together will never look like it did in previous years, we are grateful that we had another year with him. The boys are at such fun ages right now. Bryce is a big boy now and getting to experience some really cool things. The little two are hilarious and a handful but very fun. 2012 went out with a bang and we are ready to rock the 2013 year. Here is 20 zillion pictures of our December. 

We saw Santa about 30 different times. Somehow the only photo that ended up on the download is this one from Dickens on Main. Dickens on Main is always a fun way to start out the Christmas fun. The boys ate cotton candy, drank hot chocolate, played in the pretend snow, rode a pony and saw a parade.

Here is Brody visiting with the camel at the Walk through Bethlehem. 

Low quality shot of our fun christmas card that our cute and very talented friend Rachel Russo shot for us in about 30 seconds at the skate park. 

Part of the Mac Fam had our acting debut at our church. We played Mary and Joseph and toddler Jesus in the choir's Christmas show. It was very fun and Braxton still tells people his name is Jesus. 

I learned how to make homemade pasta with some girlfriends at the Boerne Cooking Cottage. 

We had a little donut party for our buddy Braxton. We asked him what kind of party he wanted and he said DONUTS! We even let him make his own guest list. Cannot believe that boy is 3. 

We wore pajamas, had lots of donuts, a "donut cake", made breakfast necklaces, ate donuts off a string and....ate more donuts. 

We went to sea world a few times over the break also. It was very fun to go when there were no crowds and no lines. People in costumes (shamu, elmo etc.) are seriously Brody's very fave. 

The little boys had their Christmas show at preschool. They were not too interested in the singing in the program part, but they sure were excited about the party and santa part :) Sweet Ms. Marci even came to see them on their special day. It is always a treat when Ms. Marci comes to play!

I got to be a part of a very special day for two very dear friends. Matt and Laura Srp had little baby Beckett on 12/18! Congrats on your third little boy!

I went to a cookie party at a sweet friends house and then hosted our sunday school girls night cookie party. Both nights I ate too many cookies, but it was worth it :)

Bryce and Brody had school parties at Cibolo. I didn't get any pics of Bryce's party because I was helping him and his friends play Bingo...but both were very fun! Here is Brody playing pin the nose on Rudolph. He loves his big boy school so much! 

We celebrated that little Brax man again as a family on his actual bday. Our adorable friend made this yummy Mater cupcakes! We ate pizza, decorated gingerbread houses and played with Braxton's new Mater riding toy. There was a lot of gingerbread house supply eating and not so much decorating...but somehow we still ended up with a masterpiece of a house (that later went into the hog trap at the ranch). 

Bryce and I got to love on our homeless friends several times during the holidays. Here is a pic of the amazing Christmas dinner. So many people came together to make this night such a success. 

Then we were blessed to the moon and back to be able to spend our second Christmas at the cottage. Lots and lots of fun family memories. We read the Christmas story at the ranch, Bryce shot his first deer, we decorated cookies together, ate my yummy turkey and dressing outside by the river and helped Santa put together the most intense train table that ever existed. 

We had our first trip to the kiddie park in san antonio to celebrate Whittens Bday. 

We cannot wait to go back (maybe when it is a little warmer). 

This was just too cute not to share. It is a rare moment when these two want to be this close to each other. I mean they get along fine, but typically when they are THIS close it isnt as cute of a situation. 

We had a very fun and very relaxing new years eve with the Fickeys. We wore pajamas, sang karaoke, ate junk food, attempted to play games and even had several fake countdowns...around 10:30 :)

A little out of order, but we also got to celebrate my fave friends birthday with some painting and yummy dinner with friends. 

And the most recent excitement is Bryce's new hobby. Him and my dad have gone on a couple of arrowhead hunting trips over the break. I cannot even imagine how awful digging in the dirt for 8 hours would be, but they love it and I know these are memories that Bryce will never ever forget. 

We have had lots of fun over these past few weeks. Justin's parents came for a visit, Bryce lost another tooth (he still doesnt have the first two back yet) and we are getting our house ready to put back on the market. I am always grateful when the cold weather arrives and we have an excuse to stay inside and recuperate from all the December fun :)

cheers ya'll

Lots and lots of blog posts have been floating around in my head the past few weeks. There have been lots of fun December days that need to be remembered and I imagine there will be a giant picture post coming very soon. Braxton turned three, we spent Christmas at the river house, we had school parties galore and so much more. 

In the midst of so much local happiness there have been some sad things going on around us. The reality of the Connecticut shooting, the daunting news of what health insurance in 2013 will look like for us and the disappointing outlook for Russian orphans. No matter what blessing we wake up to, there is a looming let down lurking in a dark corner. So many wonderful things packaged inside sadness wrapped up with a beautiful bow on top. 

I think I have had it wrong all along. This eager search for the perfect place between contentment and complacency may be more work than I have time for. The sincere desire to rid the expectations is exhausting. Sometimes the positive attitude is pretty exhausting too. It is exciting to live each day as it could be your last...never going to bed angry, being spontaneous, making new traditions and memories. But it simply is not a reality all of the time. We say we will hug our kids more tightly each morning before school after the Connecticut shooting, but when the newness of that memory wears off and our kids throw their breakfast on the floor or won't put their shoes on or forget their lunch in the car...we forget. We lose our patience because we are human and we lose that perspective because life happens. It is in our human nature to set out a plan for our lives. We give glory to God when it goes the right way, blame satan when it goes the wrong way, ask for discernment when it doesnt make sense, ask for perseverance when it takes too long and ask for God's perfect timing when we want it to hurry up. I have asked for prayer regarding doctors, medications, patience, timing, finances, healing, energy and countless other things. I have watched a community band together in prayer for my husband, for others health, for lives lost, adoptions, tests, children, pregnancies. I have seen many prayers answered and many prayers not. I have also watched the newness wear off of many things. The excitement dwindles away and something new comes along and we all band together for the next "big thing"...and we pray and petition and rally and rejoice and repeat. It truly is a beautiful thing, but it also is pretty sad. The parents who raised enough money to adopt, but just spent another Christmas without their child. The  widows and widowers who have had their homes filled with friends and casseroles still have a giant spouse sized hole in their hearts. The man that got a job, but is still in so much debt he can still hardly provide for his family. These blessings that are wrapped in sadness with that big pretty bow on top. To the rest of the world the prayers are answered and it is on to the next. A place of contentment with whatever the situation is located...gratitude is expressed...normal is found...and life moves forward. 

But what if life is just standing still? What if there are still no answers? No healing, no death, no loss, no gain. Is it a time to pray for perseverance? Patience? Protection? Timing? 

I realized over the past few weeks that the spot between complacency and contentment MOVES. Yeah. Bummer for me. I thought I could just find it and then sit there and stay for all the rest of time. That perfect place where I can praise in my storm and feel normal and grateful and everyone knows my name ...is NOT always open for business. It is time to let some doors shut and bust through some windows ya'll. It is time to start 2013.