My Well Well Visit

For those of you who have been partnering with me in prayer, I want to thank you!  This last Wednesday I was in CA for a follow up appointment from my last hospitalization.  My lung function remains at 50%, which is a proven promise from God.  He has brought healing to my lungs and it is proof that He has heard your prayers! 

Not only are my lungs functioning well, but I am also gaining weight.  In my case a few pounds is something to celebrate.  I have almost reached a healthy weight which will not only keep my warmer, but healthier.  Maintaining a healthy body weight helps my lungs and it creates a buffer for when the next infection comes.  Since my infection last December I have struggled to gain weight and my lungs have taken the toll.  Each infection set me back further.  I am happy to see my body trending in the direction of health. 

I take each day as it comes and some things are still too much for my body to handle.  I know that often I push myself too far and spend a day or two in pain.  I loved going to the OSU vs. Utah game on Saturday and cheering my Beavers on!  Later that night I felt the pain in my lungs from yelling so much, but oh was it worth it!  Being able to stand for the whole game and walk the steps of the stadium without coughing up blood was such an amazing experience! 

My motto this past year has been to take each day as it comes as perhaps the healthiest I am ever going to be.  A couple years ago all I could think about was the day transplant would come.  That was the day I was looking forward to and constantly hoping was drawing near.  Then I was hit with a particularly terrible pneumonia in December and reality slapped me pretty hard.  I realized that was how horrible I would feel before I was even considered eligible for a lung transplant.  I was in terrible pain, my lung function was in the 20’s, and I didn’t have the energy to shower.  I realized that I had been taking advantage of my health.  Instead of praying and pushing for a transplant, I needed to be out pushing and pursuing my dreams appreciating the health that I had. 

So today, my motto continues to be appreciating my stage of health every day as maybe the best I will ever feel.  There is no time to sit around and wait for the perfect opportunity to live life.  Right now is always the best time.  Every day I wake up and I thank the Lord for the breath He has given me.  Lately, that breath has been more than I have had in months.  I am enjoying this time of rest and being healthy.  My doctor was as excited as I was with my improvement. 

You know the expression ‘jump for joy’?  Well I now know where it came from.  Sometimes God does more than we can hope or imagine and you can’t help but actually jump with excitement and gratitude.  Joy is truly the best feeling in the world.  Joy dismisses fear and it triumphs over trials.  It defeats anger and it cures heartache.  Joy does not need an explanation; it is not of your will, but of God’s grace. 

Not only are my lungs happy, but my liver is too!  This is a very rare occurrence and I don’t believe it is by chance.  I believe that God has heard your prayers and that for this moment He has answered them and provided me with a time of homeostasis. 

In a few weeks I am going to schedule a procedure to have a new port placed.  I had a port placed at the end of summer in 2011, but when I went septic earlier this year the terrible bacteria that is in my lungs harbored in my port and they had to surgically remove it.  The infection that I had that spread from my lungs to my blood could have killed me if we had caught it any later.  It was by God’s grace and the knowledge of my amazing doctor that God has placed in my life that saved me.  There is a risk that this could happen again, but I am running out of options for veins for IV antibiotics.  Prayers of protection for my line and prevention of infection would be much appreciated!

The last thing I would like to update you on is the transplant situation.  At my last appointment we discussed the facilities that my doctor has sent my chart to with a request for transplantation when the time comes.  To clarify, I do not need a transplant right not, but I will inevitably in the future so it is best to have a plan before I end up in crisis.  Two of the five centers responded with a no.  We are still waiting to hear back from University of San Francisco, Pittsburgh, and Chapel Hill.  I know that God is the one who is in control and trust that His provision is in place.  I have no fears, no doubts, and no worries.  My future is secure regardless of what happens.   

LAUGHTER

Back to before I found out about my rejection from Stanford regarding transplantation I was thinking through the questions I might be asked during a transplant evaluation.  One of the questions that they ask is what you are most looking forward to doing after you receive your new lungs.  At first I thought it might be running, I think this is a common answer.  Running makes you feel powerful, running is a release of stress, running is an escape and a challenge, running makes you feel free.  The idea is ridiculous, let’s be honest. I don’t remember what it feels like to have powerful lungs, but I am pretty sure that regardless, running is not what I am looking forward to the most if I get new lungs.  For those of you that know me I am extremely ungraceful when it comes to anything athletic.

I discovered that my absolute favorite thing to do is laugh.  Laughter is contagious, it brings joy, it is honestly the best medicine, and nothing in the world is more beautiful than true laughter.  Not polite laughter, not this is kind of funny laughter, but throw your head back laugh until your stomach hurts, the laughter that puts the smile on your face you can’t hold back no matter how much your cheeks hurt kind of laughter, that is my favorite feeling/place/thing in the entire world. 

The greatest joy about laughter is that you can experience it anywhere.  But, sometimes the ability to laugh from the heart is impossible when the heart is caught in the throws of tragedy.  What I hate is when I can’t find my laugh because that is when I can’t find me.  Amongst it all I sometimes still lose sight of me.  Not me in the physical, but me in spirit, the me that I am in Christ, the me that I love. When I am sick and my lung function is in the 20’s, I lose my laugh.  I suppress it because it hurts; the muscles in my chest ache and my lungs cant handle it.  Laughing leads to coughing which only increases the pain.

When I came to realization that my CF took away the one thing that I loved the most, I knew that would be the thing I was looking forward to the most.  If I got new lungs, the thing that I would never take for granted again would be my laugh.  But, then God did something amazing!  My lung function improved to 51% and as of a week and a half ago, my laugh came back!  It doesn’t hurt, it doesn’t make me cough, my laugh is restored to what it is supposed to be.  Maybe my laugh isn’t perfect to you, perhaps it is too loud, maybe I laugh too long, maybe I laugh at inappropriate times, maybe I find myself funnier than I am, but I don’t care.  I will laugh too loud, I will laugh too long, and I will laugh easily. 

“I love people who make me laugh.  I honestly think it’s the thing I like most, to laugh.  It cures a multitude of ills.  It’s probably the most important thing in a person.”  - Audrey Hepburn

Dream Passion Purpose

I have written a few entries about dreams and pursuing them, but I have only glazed the surface of what my true dream is.  I often have people ask me what degree I am working to obtain and though I say it over and over again, I understand why it’s hard to remember.  My degree will be in Liberal Studies.  For those of you who don’t know what that is, at OSU it is a program through which you create your own degree.  The way you do this is by selecting a series of classes from any of the colleges in the Liberal Arts department and after compiling them you write an essay justifying how each course relates to your theme.  In order to properly explain my theme to you I would like to tell you how I chose it. 

What I have discovered is that we don’t always get to choose who makes their way into our lives.  It isn’t always about whom we let in or whom we manage to keep out.  I often find myself in a situation where I am wondering how a person got there.  They entered my life not because I wanted them to, but that I needed them to.  I didn’t know that I needed them.  Often these relationships caused me pain and though at the time I thought I would have liked to have avoided the pain, it taught me something and that something was usually about my character, purpose, or passion.    

I manage to sit up and dangle my legs over the side of the bed.  The mattress begins to inflate again due to the adjustment of pressure.  A hand is bracing my back and the pain in my abdomen increases with every breath.  I grasp the two outstretched arms and brace myself as I get into the upright position.  My feet touch the floor.  Legs trembling, I manage to take my first step.  Looking for my next set goal I seek out the hard blue chair in the corner.  It seems so far away.  The pain is throbbing, and my legs are so weak I try to distract my mind.  Tubes are protruding out of me everywhere.  The tangled mess looks like a map of crisscrossing highways.  Hands are coming from everywhere to help keep the lines in place as I focus solely on my goal.  Reaching the chair, I sit down with a sigh of relief and a grunt from the pain.  In… Out… In… Out… I clutch the pillow closer to my chest as my mom pulls out the camera.  Cursed scrapbookers, they never miss the perfectly inopportune moments to get a picture.  What a lovely moment, my hair looks like I was just electrocuted.  In my mind I wonder if it would be easier to cut it off instead of let my mom near it with a brush.  I know for certain it would be less painful. 

The nurse returns with a wheelchair and I stand up once again and begin taking another step.  Walking on the sticky sparkle covered floor of my room, I make it to the door where the wheelchair is.  Lowered into the chair by the arms that held me up, we turn towards the hall.  Roaming we follow the signs to the school.  The chair is hard and my neck is weak.  Straining to keep my head up since there is no headrest, I roll over the striped carpet.  Red, blue, green, yellow, I watch as the stripes pass under my feet. 

Turning to the left we see the school’s secretary.  She talks to my parents about enrolling me as I continue to let my mind wander.  School is the last place I want to be right now, but maybe it will take my mind off of the pain I am experiencing from my incision.  My bright yellow mask seems to blend in here.  Every student has something in common; they are each connected to Lucile Packard Children’s Hospital.  The specific reason doesn’t matter, what matters is that in this parallel universe we aren’t alone. Looking around you might see children with scars, precious bald scalps, and bright colored masks, but what I see is a world where I belong and potential friends that will understand me.

It was in that classroom that I met Rhonda.  A beautiful girl, but you would never know.  She was so thin her skin hung loosely on her bones.  Her ankles looked like they could snap as they bared her little weight. Similar ages we were placed in the same class.  The yellow mask that covered up her smile drew out the pain that was in her eyes.  She had recently received a heart transplant and was slowly on her way to recovery. 

I will never forget, it was Mother’s Day and Rhonda was so excited.  Her mom was finally coming to visit.  She hadn’t seen her mom in over a month since the transplant.  I came to her room to help her make everything just perfect.  Lined up were several cards that she had made for her mom.  The first card I opened said, “Mom, I have a new heart.  You can love me now.” Card after card read similar messages.  My heart broke that day and it left a permanent scar.

I didn’t realize it in the moment, but that was when I discovered my passion in life, to let every child know they are loved. Holt International has a mission to share the compassion and love that Christ had for children and to find them permanent homes where they can feel safe and loved. When I answer the common question “What do you want to do with your degree?”  I begin explaining my dream to work for Holt International and every word pulses through my veins sending shivers from my cheeks, down through my spine, to the back of my knees.  The reality of helping change and save the lives of children around the world draws me in; mind, heart, body, and soul. 

Rhonda’s mom never did show up.  I found out later that she was in Child Protective Services and her mother wasn’t allowed to visit.  I asked my mom if we could adopt her, but soon her situation changed and she was placed back in the hands of her mom.  Rhonda passed away later that year when she coded in the ER.  She had missed some of her medications and her heart rejected.  I remember everything about the day I found out.  Rhonda’s death was the first death that had ever really touched me.  Before her I had never lost someone close to me.  I couldn’t help but think if she had been my sister, we could have saved her. 

God has used my disease to instill hope, not to steal it.  He has used it to open my eyes and change my heart through avenues only few are privileged to pass.  He has created me a fighter.  I fight for my life and I hope to fight just as vigilantly for those children in Holt’s orphanages someday.

The theme I have chosen is International Adoption Publication.  I want to pursue a career where I can use my ability to write to help the hurting, lost, precious, orphans around the world.  If all my dreams come true I would also get to be a mom to one or two or three of those beautiful spirited children.  Knowing that dream seems unattainable right now, I would be so blessed to have the opportunity to help through the avenues that God has gifted me with.  I am not just pursuing a degree, I don’t want just an education, I want to live out my passion; I want to love the unloved.  I don’t know why it took me 3 years of college to truly discover my purpose, but when God gave me this dream it was so wonderfully perfect.  It was in my heart all along, dating back to the day I met Rhonda.

Rest in Christ

This past week I had a friend share with me that we have to choose to rest in Christ.  We have to make the conscious decision to partake in that rest. I was challenged to search out what that meant.  What should resting in Christ look like in my life?

In Hebrews 4 it talks about God’s creation and on the seventh day He rested.  God’s rest is there for us to enter, but we have to choose it through obedience.  “So there is a special rest still waiting for the people of God. For all who have entered into God’s rest have rested from their labor, just as God did after creating the world. So let us do our best to enter that rest. But if we disobey God, as the people of Israel did, we will fail.” Hebrews 4:9-11

In Genesis 2 it mentions that God took the seventh day to rest.  It is interesting to point out that on every other day of creation it mentions that the evening passed and the morning came, but not on the seventh day.   Our rest in Christ never ends. I was so encouraged to discover this, but I realized that I rarely feel like I am getting to rest.  The closest thing I have felt to that was the 4 days of my second to last hospitalization that I can't remember at all due to being overly medicated.  I am always asking for a time of rest.  I pray that God will provide me with a time of health so that I can rebuild my strength and not live in weakness all the time.  This last year it has felt that the rest never came.  I have almost consistently been on IV antibiotics, in the hospital, on steroids, or having a PICC line in my arm.  I didn't understand that part of the asking for rest was that I needed to choose to enter into it.  The rest doesn't just happen and it doesn't always take the form I think it should.  Entering into rest is done in faith.  It is having faith that God will equip me with all that I need to accomplish all that He has asked me to do.  I don't have to stress, worry, or fear.  It also means listening to God and being in communication with Him so that I only take on the responsibilities that He has asked me to.

I have taken comfort in choosing rest in God this week and it has been a blessing.  My heart and mind were overwhelmed with the distractions of life.  I was overwhelmed with school and placing too much focus on my imperfections as a student.  Most of these imperfections I couldn’t help because I was on pain medications and it was important for my health to come first.  I started out behind because I was in the hospital and I allowed the tower of homework to overwhelm me. 

I was challenged this week to identify my distractions, the things that were not necessarily bad things, but things that were distracting me from God.  Of course the first thing that came to my mind was school.  It seems like the cheesy incorrect answer, my “work” would come to mind.  But, I was on the right track.  It wasn’t that I need to get rid of school, but I was using it as an outlet for my stress.  School is one of the few things that I hold onto because it helps me relate to others my age, but it also is something I feel I have control over.  I am the one who works for the good grades.  My focus on performing well in this area of my life was my distraction.  It is easy for me to trust God with my health; I don’t allow it to stress me out too much because I know that I have absolutely no control over it.  School is a different story.  I think that I take all of the pent up worry, stress, and fear and deflect it from my disease to my schoolwork.  I let the stress overwhelm and consume me.

I have had people ask me why I am in school.  Why am I still pursuing a degree?  There are a few different reasons.  It gives me a sense of normalcy.  This is that “real world” I can be a part of.  It allows me to relate to my friends. 

Also, I have always taken pride in my education.  Throughout my life I have had a lot of difficult obstacles to overcome and the first thing that everyone tells me to give up on is my education.  I get a great deal of satisfaction by proving people wrong.  People’s disbelief in me is often a great motivator.  Up until college I kept up with my class.  I found a way to catch up, to keep up, and I am by no means ready to give up.

The last reason why I am pursuing my degree is because I have a dream.  I want to work for an international adoption agency.  I believe that God gave this dream to me and He has called me to get a degree to properly pursue that dream.  I don’t know the number of my days, but just because it might appear the years will be few, I will never stop living life. 

So in the midst of my stress over school I have chosen to seek rest in Christ.  In Hebrews 3:19 it says that the Israelites were not able to enter into God’s rest because of their disbelief.  This week I have chosen to trust that if God has given me my dream, then with His help I will not fail.  Sometimes where God wants my focus isn’t pouring my all into one aspect of my life.  Yes, I need to study and I need to do my homework, but once that is done it is not necessary for me to analyze it. 

It has been brought to my attention that this term is going to look different and that is okay.  Not because I am taking fewer credits, not because school isn’t important, not because I am healthy or unhealthy, but because maybe God has a different plan for my work this term.  I don’t know if that is writing or relationships or traveling around the country looking for a facility that will transplant me.  What I do know is that right now, this day, this week, I am choosing to rest in Christ.  I am taking time to do the things my heart desires.  I am making cookies for my brother and dinner for my parents.  I am reading my Bible more and hiding away from people who are sick.  I am resting in the harmony that my body is in and not worrying waiting for something to go wrong.

For those of you who haven’t heard yet, your prayers make ALL the difference!  My lung function has improved to 51%!!!! I haven’t seen the 50’s in months and was beginning to doubt that it was possible, but God is so good!  My liver is functioning normally which is something I haven’t experienced in a long time.  It still has the scarring and is by no means great, but right now it is okay.  After the last episode of rejection we were looking into re-transplantation, but God healed me of that too.  I also had my PICC line removed today and I am IV free for the first time in 6 weeks!  I still need your prayers!!  To live with my body in harmony for a while would be so WONDERFUL!! 

Not only do your prayers make a difference for my physical healing, but they also protect me mentally.  I know that the reason that I cope so well is because of my support system.  God grants me peace and encourages me through your prayers and support.  I have been receiving encouraging cards and messages reminding me of your support and your belief in me.  I couldn’t imagine what it would be like to walk through this alone.  So again, thank you!

I challenge those of you who are feeling overwhelmed with life to choose rest in Christ.  What are your distractions and how can you eliminate them?  Take some time to read and listen to God.  He is inviting you into rest with Him in obedience.  Ask Him what changes you can make in your life to receive that peace, comfort, and joy. Sometimes the rest is taking time for you, but for me it has been taking back the energy from my stress and using that energy to do something nice for someone else.