Monday, July 29, 2013

a thing or two about July

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 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.

This has been a hard time for all of us. Hard for the boys to watch their dad spend most of the summer in bed. Hard for me to spend so much time without a partner. Hard for Justin to keep a positive attitude when he can only muster the energy to leave his bed and do something fun about once a week. It has been hard for each of us to figure out this season. In fact, we don't have it figured out and I don't think we will figure it out anytime soon. Per the norm...we don't know what is ahead. We can only take this one day at a time. 

Just about the time that I start to think I am going to throw my hands up, God throws a brick at my head and tells me to pull it together. This summer I have struggled with a dark cloud hanging over my head. It has made me feel a bit of a darkness I have not experienced before. More defeat than normal. More alone. More exhausted. I continue to carry the peace God gave me about this journey, but that peace has just been shadowed a bit with the cloud. I have withdrawn quite a bit from so much, and God honored my time that I gave to Him big time. The Lord did a work in me last week that has shoved that cloud aside. It isn't completely gone, but I know He will use that dark place to bring He has done time and time again. 
Last week I had the extreme privilege of being a part of Stillwater Sports Camp. When the boys and I arrived to camp, I felt very out of place. I didn't really know anyone, I felt intimidated about speaking to youth rather than my peers, I felt irritated that Justin couldn't be there with me, I felt unprepared. 
The first night was hard. Even just introducing myself, I felt like a stranger in my own skin. The next day Katie and her kids came to visit us, she let me whine and moan and talk it all out and it was apparently just what I needed. I realized I was worrying about the wrong things. I was worried about what I was going to say and how the girls were going to perceive me...rather than how God was going to work through me and how they would receive His word through me. I finally stopped fighting it and submitted. The words He gave me to share...taught me so much. He took everything I had prepared and threw it out the window, He had me buried deep in His word and brought very specific verses to camp out on. Speaking to youth brought me far far out of my comfort zone...which is where the really good stuff happens. The place where you need Him the most is the place He speaks most clearly. Right outside what feels easy is a whole bunch of really great things. 
God never ceases to amaze me. Amidst the dark cloud of health and future He showed me much more than I deserved to see. I would have been satisfied in just feeling His presence and knowing that He would sustain me through the coming weeks. But no, He asked me to dig deep and rise up...and that is where He showed me some really great things. 

And the week in pics!
I was blessed with several sweet visitors through the week...
Here is a pic of the party that came out Wednesday night!

I even roped this gal into jumping in for an incredible time of worship. 

 The boys had a BLAST! I mean who wouldnt have fun chasing a banana across camp?!

 I got a couple days with just this guy while super pop pop entertained the other two. 

The Golgotha run was such an inspiring time out at camp. 
Loving on the girls and praying over them when they finished was  a highlight of the week for sure. 

 Sunday Night intro

 Monday Night talk about His Creation + accountability 

Tuesday Night talk about Matthew 11:28

Wednesday Night talk on the Resurrection and the Holy Spirit

And then this little treat.

 And a final Thursday morning talk to encourage the girls to set themselves apart from the world by tapping into the fruits of the spirit. 

Camp, you blessed me big. You have my heart Stillwater! 

Wednesday, July 3, 2013

cleveland 2013

Exactly two years ago Justin and I prepared to spend our 4th of July in the Cleveland Clinic Hospital. Our boys were back home being loved on by friends and family while Justin was enduring test after test to confirm all that he had been diagnosed with. Today we sit in the Cleveland Airport heading home and feeling grateful that we will spend the 4th of July in Boerne with our boys. This trip was different than the trips of the past. Our other visits to the Cleveland Clinic always ended in Justin being admitted, a new diagnosis, an infection found, a plan changed etc. I would sit by and watch as teams and teams of doctors would fill his room and sit in wonder as they tried to figure him out. We sat in anticipation that one of these brilliant doctors would be the doctor that would be able to "fix" him. None of them did. Two years later, we rolled him into the Cleveland Clinic in his wheelchair and jaws dropped. These doctors are the real deal. They write the books that our doctors back home learn from. They were genuinely surprised to see that things had worsened and that Justin was still alive. His doctors gathered together and examined him head to toe and rambled their doctor talk (which I wrote down and then had to google later) back and forth. And then it came time for our jaws to drop. The conclusion was that "Justin, you are alive BY GOD'S GRACE" Wow. 
 White blood cells are what defends your body from infection. Justin's two main treatments are Rituxan which is a chemo infusion and Immunosuppressant medications (which keep his body from rejecting his organs). His body is continuously attacking itself and basically no part of his internal self is safe...against itself. Sorry if I lost you in that mumbo jumbo. Anyways, the combination of his treatment plan wipes out both his T cells and his B cells (both white blood cells). This makes Justin what the doctors referred to as "a ticking time bomb for infection"...pretty comforting, not. He literally has no immune system plus he has a living fungus in his lungs (aspergillosis). The medications he takes could mask an infection until it was basically too late. This is why even the best doctors around can recognize that he is here only by the GRACE OF GOD. The doctors were able to explain some things to us and provide some info on why certain treatments have not worked in the past. They agreed that his doctors in SA are doing the best they can do. They did a ton of labs and want to go over all of that thoroughly before they make any adjustments to the treatment plan. Other than a few minor changes, we are pretty much already on track for the best possible treatment plan for Justin right now. IVIG (which starts Monday) will really help in replenishing those B cells which will provide at least some protection over his body for infection. He will do this once every month over 3 or 4 days. It does not make him feel well during and after, but it will be worth it in the long run. So, there is that. I feel like now more than ever we have seen the grandiosity of God's grace. James 1:24 tells us to count it ALL joy. We know that God uses ordinary people to accomplish extraordinary things. He did it over and over again in the Bible. He has a great plan for our little family...I just know it. We know that every good and perfect thing comes from above and we know that his enormous gift of grace is one of those very perfect things. This is no doubt a lot to handle. For all of us, but especially for Justin. We can't see the final chapter of His big and perfect plan, but we do know that is will be good. The ending to this WILL be good. This man has been transformed and this family will never be the same. Life is short, we know this, but eternity is well...forever. Bringing Bryce on this trip was hard, but such a great choice. It was hard to have him there hearing first hand from doctors that they can't "fix" his daddy, but it was a great distraction and reminded us to have some fun too. We had to have some hard discussions, including one where Bryce prayed that his daddy would be able to meet his kids when he grows up and gets married one day. But, His mighty and always sufficient grace kept the discouragement at bay. We did the one and only Cleveland tourist attraction....the Rock and Roll Hall of Fame! It was fun and Bryce had a blast. Thanks for the prayer, ya'll.