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Friday, August 16, 2013

Getting off the Guilt Trip Train

     Since I had some time off, I have spent a lot of time doing some self-reflecting. Something I have always hated is GUILT TRIPS. They are the worst kind of trip. My whole life, I have been put on guilt trips or people try to make me feel guilty. I have also been the engineer of a few guilt trips myself. I have quit cold-turkey, I don't want someone to do something for me out of guilt and I don't want to do stuff for others out of guilt. I want to do it out of joy, necessity, desire, etc.. I put Paul on the most guilt trips. I try to get him to feel bad enough to do something I want. Well, I used to, like three weeks ago. I have found that he does more of what I need out of his own desire. I also do not want to let myself get stuck doing stuff I don't want to do out of guilt. I am tired of it. I want to live in such a way that if I miss the dinner, you know the one, "it could be his last birthday dinner," that I can live with myself knowing that every day of my life I treated that person wonderful and it didn't come down to one last meal. How morbid anyways. I don't want to do what I have always done for holiday out of guilt. Here is a news flash, the guilt ruins the experience and leads to resentment. So, if you are guilty of putting people on guilt trips, then you need to stop. You can do it, and if you revert back to your old ways, you can keep trying to stop this behavior.
     My second flaw is, I can't believe I am going to admit this, but sometimes I am a bit of a control freak. I feel like a load was just lifted off of my shoulders in that last sentence. I mean, does it really matter in the grand scheme of things if one dish is not placed correctly in the dish washer, or if the towels aren't turned the right way in the cabinet? I should be thankful that someone helped me out and put the dirty dishes in the washer or put my stuff away. Being controlling leads to me doing everything by myself because I won't let anyone do it because they might not do it my way. How dare them? When I think about all the stuff I have obsessed about like the shower curtain, dirty clothes piles, the way someone washes their hands, etc.. it makes me feel silly. NONE of this crap matters to Jesus. He is not going to ask Paul why he never closes the shower curtain. All these little things I want to control take my focus off of Christ, and that is why I am doing better. I am recognizing what are the small things and letting them go. I am learning to trust, especially when it comes to trusting my medical team. They do know more than me and I have to trust them to care for me.
     I guess you can see that I am a work in progress, but the progress is the keyword. I don't want to regress. I want to be the type of person that my son is proud of and I want to be pleasing in the sight of the Lord.

Just a Drop

     I guess I need to update everyone with what the heck was/is going on with me. Back at the end of Feb/ beginning of March, I had my yearly CT scan, MRI, x-rays, etc.. They saw "something" in my left lower lung. They decided to "watch it" for three months, and of course, I did question waiting so long, but they thought it was just an infection and my lungs would be clear in three months. I am great at being optimistic, so I went on with life. I had absolutely NO symptoms, no fever, no cough, no fatigue, no headaches, nothing! I used to be able to do testing like MRIs with little or no anxiety, but ever since receiving a diagnosis of cancer after an MRI, I always start stressing out a little. It doesn't help that I always seem to get the MRI guy that yells, "Quit breathing," when he needs me to exhale and hold my breath. In my head I am telling this guy, " Hello, I have done everything in my power to keep breathing, so I am not going to stop breathing buddy!" Anyways, the "infection" in my lungs had spread to both lungs and all over the lower lobes. I was scheduled to see a Pulmonologist, then he scheduled me for a bronchoscope. I feel like I could train patients for what to expect for nearly every medical test in the world! After the bronchoscope,my Dr called to let me know I had a fungus among us, it is called Aspergillus, and it comes from the soil/dirt. I would need to see an Infectious Disease Dr and start taking oral medication. OK, I can handle that. That was Wednesday morning, and I was at work with the best people ever. Fast forward a few hours, Wednesday afternoon, the ID Dr. calls me himself (automatically knew it was bad), he tells me I need to come and be admitted immediately to the hospital. He has a super strong accent, so I either missed some important information, or he forgot to tell me.  I finish my shift because nurses just can't abandon their patients. My co-workers hustled to help me out so I could get out a little early. I get to the hospital, I have to go through the ER, where they make me wear a mask and I am being admitted and will have a STAT MRI of the brain! Umm, Hello?? Can someone come tell my why I need a stat MRI of my brain? I had the absolute best nurse ever that looked at all my results and I had a second fungus in my lungs:( The doctors are stumped as to how I could also have Cryptococcus in my lungs, which is from pigeon droppings. At this point, I start wishing I lived in a bubble. And, here is the kicker, they think since this has been in my lungs since FEB, it it probably in my brain and spinal fluid! Yes, when all 8 doctors came into my room the following morning, I asked if next time something shows up on my CT scan or MRI if we were just going to watch it again. They all said no, we will not do this again. Ok, thank you very much.
     Then, they told me I would need a Lumber Puncture. I know this makes me sound like a baby, but I was dreading this. Of course, my wonderful cousin Karen was with me all day and she made it better. It did hurt, but I think I have built up some tolerance to pain. I didn't know this, but I was about to be tested in the area of pain. They told me I would start my IV medication on Thursday, and if all went okay, then I would get a PICC line and go home with this IV medication. The day nurse pre-medicated me several hours before the night nurse gave me the dreaded AmphotericinB. I had a dose of Tylenol and Benadryl. A little after 9:00 that night, the nurse started the medication. My sister was staying with me. Literally seconds after it started infusing, I sat up and I knew something was wrong. I was super hot, my heart starting racing, and then it felt like someone was sitting on my chest. It was immense pain, worse than any other pain I have experienced. I started having convulsions, shivering, and my neck started swelling. I literally thought, this was it, I honestly believed I was dying. This was scarier to me than those few seconds right before they put me to sleep for my transplant. All my vital signs went crazy high, and they called the Rapid Response Team to my room. The nurse had stopped the medication less than a minute before it was started. I only received drops of this liquid that made me feel so terrible, hence it's nickname Amphoterrible. During this crazy time, I locked eyes with my sister and I simply started talking to Jesus. I was begging Him not to take me now. I wanted to live, live the way He wants me to. I have so much more I want to accomplish yet. After I felt better and all the people left my room, my sister and I hugged for quite awhile. I love her so much. She called Paul and my mom after all this happened and I assured them I was okay.
     All of this made me start thinking about how a few drops of a medication could make me feel such immense pain in matters of seconds, that it could affect my heart and make me feel something I had never experienced before. It hit me, just a little of bitterness, hatred, jealousy, all of those could damage my heart and walk with Christ. I have let a few things that hurt my feelings make me become bitter and mean to a few people. This has only hurt me and my walk with my Savior! I would no longer let this continue. I am/have changed. I have simply let it go, I don't need an apology. People will have to answer for their own actions, they will be judged by the most high, not me. I am not going to let any one's actions lead me astray and put hate in my heart. I could be at fault and misread their intentions. I am not perfect either, and that means I can do better, I can be better. I am not even going to talk about it with these people, I am just going to prove it with my actions. I want to be full of love, the love of Christ. Look at how blessed I have been in my life, I am alive because of Jesus!  I want to keep getting better spiritually! Don't let anything or anyone poison your heart, it only hurts you more. I am tearing down the walls I have built-up around my heart. I want to have all my heart available for Jesus to fill me with more joy than I can handle!
     Okay, so they switched me to three different medications to kill the fungus, but it will take a while. I will be on one of them for 9-12 months, and at first they made me sick as a dog, but the headaches, and vomiting has subsided. I am still nauseated, but it is livable nausea. I returned to work yesterday, but was called today and told I couldn't work because something was now growing on my spinal fluid cultures. So, I am scheduled to have another Lumbar Puncture because my doctor thinks it is an error because I have no symptoms of what is growing. I had a small pity party about having to endure another Lumbar Puncture, but I quickly focused my attention back onto Christ. I remember watching The Passion of Christ and hearing the sounds of Jesus being beat and crucified. I had to leave the theater, I couldn't watch one more second of the torture. Jesus never sinned, He didn't deserve it. I have sinned, I can handle this. I can because I have Jesus. I often wonder how people that do not know Jesus live, how do they survive? I hope you know Him like I do, if you don't, I would be more than happy to tell you all about my loving God.

Thursday, May 23, 2013

The Baby Topic

     Tonight, Paul, Thomas, and I went to Dr. Rowe's house for a get-together. Paul attends a weekly Bible Study at his house, and tonight families were invited for food, fellowship, and a movie. Thomas had a blast playing in his pool and with the other kids. So many of the people there have lost babies, struggled to have babies, or had really difficult pregnancies, and he is still ministering to us. I enjoyed the video and talking with another woman there, who I have always found very easy to talk to.  She is one of those people that you immediately know she is genuinely kind and she really cares. She recently had a miscarriage and I just wanted to scoop her up and hug her.  We talked about adoption and stuff like that and then we eased right into talk about how hard it is to be around women that can get pregnant so easily and have simple, perfect pregnancies. It is not that we are mad or jealous, it just makes you start comparing yourself to them and you start becoming insecure. You start wondering what is different about them, why does God want me to go down this road? It always turns into soul-searching for me.
     This brings us to the elephant in the room that I have been avoiding. YES, I desperately want another baby. Two of the greatest people I know are my brother and sister. I want Thomas to experience having a sibling and the bond that is created. I want him to have someone to play with all the time, I want him to have a little sibling to protect. I want more.
    In the back of my head and probably in your thoughts right now, I know I am lucky to have Thomas and if God only wants us to have one, then I will have to accept it soon. I remember when Kelly Higgins brought my family dinner after my transplant, I asked her if she was going to have any more babies? She told me she couldn't have any more, but would love to. I remember thinking to myself that she had such a peace about it and seemed to trust God's plan. Not even a few months later, I saw on Facebook that she was pregnant. My heart filled with joy for her. I want to have that peace inside my soul too, but I am honestly not there yet.
     Can I have a baby? Technically, Yes. I am currently being winged off my CellCept because this medication would kill my baby, but my doctor STRESSED that having another baby is super high risk, I could go into rejection, get really sick, lose the baby, have something wrong with the baby, or die. The last one got me. I have done everything in my power not to die. Sometimes, I feel like I have an angel on one shoulder and a devil on the other taunting me. I wonder if I am supposed to just trust God and if I happen to get pregnant, it was His will, or am I supposed to take the information given to me and go the super safe route. Then I hear the little devil, "You could die tomorrow in a car accident, don't worry about it." You see, throughout all the things we have been thru, I have developed A LOT of faith, hope, trust, and strength. I think I am strong enough to do it, but when I look at Thomas, I can't imagine leaving him here without me.
    What are our options? Adoption, maybe, we are both open to it. I am a little nervous about "open" adoptions and how they work, my only real comparison would come from the great reality show Teen Mom and how that adoption works. I think I would love to foster babies with the intent to adopt, but there are a lot of rules that come into play when you deal with the government, for instance, you can't spank your own biological child if you foster. I totally understand the reasoning behind not spanking the foster children, but I don't like that rule.  It is not like Thomas gets very many spankings, but he has earned a few. He is pretty tender-hearted and just a raised voice usually works for him. We are lucky he is very obedient.
     On to my favorite option..........surrogacy. One of my cousin's is a possible surrogate-to-be for us. I like this idea for a couple of reasons. This would give us a chance to possibly have multiples (twins) and I would love to have more than one more child. I used to dream of having 5 or 6 kids. Both of these options are extremely expensive, so having two babies in one shot saves money too! I have a long-time friend that recently went through this process and she is a real encouragement to me. She has helped guide me thru the process. I have spoken with a fertility doctor that does surrogacy and started pricing things.  
     As many of you know, my husband has started a lawn business. He is steadily mowing yards and saving that money for our future baby. I am so proud of him and all the hard work he is doing to try to make our dream of expanding our family come true. I would love if you would join me in prayer about this decision and prepare our hearts for whatever the future holds.
     The whole reason I brought up Dr. Rowe was because at the end of the get-together, Dr. Rowe asked us to gather around a few people that were about to go on a mission trip so we could pray for them. After praying for them, he walked up to me and placed his hands on my shoulders. He prayed for me, he prayed about this very topic. He knew my heart was heavy for a baby. I never spoke a word about this and I haven't told too many people. I tell some people just because I hate when people ask me about having more babies. I truly long to carry another baby in my womb. When will the longing go away? I love that man, he truly is in tune with Christ. There is something amazing that happens when people pray for you and lay their hands on you, I could feel that he loved me.  I kept thinking in my head, if I don't get pregnant, and we end up using surrogacy, Dr. Rowe will have to be the doctor! I finally got all of that off my chest. There is a struggle in my mind post-transplant because I am so grateful and I feel so blessed, so I hate to feel like I am ever griping or not super happy, but I have to be honest and this issue is so difficult for me. Thanks for reading!

Saturday, May 18, 2013

Karina Is All Grown Up!

     Karina just left for prom, we took pictures of her in front of the huge tree at my mom's house, just like my sister had taken, I had taken, and my brother had taken. After she left, I cried the whole way home. I love her so much, I feel like I was able to help raise her a little, and she is utterly amazing, given all that she has overcome.     
      I remember Karina being born at the end of my Junior year of high school. She was such a blessing to our family and I learned so much about the world thru her life. Karina is obviously bi-racial. I used to think Oprah Winfrey was crazy when she talked about people being racist or discriminated against. I guess I lived a pretty protected life and was not exposed to a lot of this. My mom and dad taught us to love others the way Jesus loves us. I mean He made all of us, every race, disability, imperfection, shape, language, etc. He didn't make us all look the same. I have never understood why any race would be so proud of the color of their skin. The color of my skin is something I have absolutely no control over. I did not choose to be white. I wish people were proud of their accomplishments in life. I would love if I never had to check what race I am when I feel out any kind of paperwork, it shouldn't matter, period. I believe that because we keep making it matter, this breeds racism. Why do I need to know how the Hispanics scored on the TAKS test versus the Asian group? Why can't we just say, "All the seventh graders at such and such school scored in the 90%"?
     I am on my soap box because when Karina was born, suddenly I had an accelerated education in racism and it hurt, deeply hurt me. I would be out with Karina and people would say, "It is so nice to see people adopting children from THAT race." Huh, are you kidding me? First of all, what if she was adopted, but we had not told her yet, you moron? Secondly, is it really any of your business in the first place?  We heard other mothers say, "Get away from the n#$@%r kid!" I have never been so angry before. How could you say that, teach your child that, or be so ignorant? My mother handled this lady before my sister or I had a chance. I just remember being heart-broken. I mean, even if you disagree with inter-racial dating, IT IS NEVER THE CHILD'S FAULT!  My heart hurt for the lady's child because she was being raised to be the same way.  On a funny note, Karina went thru a stage where every time she saw a black man in public, she would say, "Daddy, Daddy!"  It was hilarious to see these guys reaction!
      We struggled with how to handle certain things like: doing her hair, what to call her (black/white), intermingling with her other side of the family, etc.. Well, it took a lot of mistakes, but we, I mean Karina finally figured it out. She told us that she is brown. She was so matter of fact about it. She said, "Look at me, my skin is brown." Her father's side of the family is very nice and it has never been awkward, but I wish we saw them more often.  If you don't already know, Karina is completely deaf in one ear and partially deaf in the other, but she is awesome at reading lips and handles this with such grace. She is strong, strong like her mother.  You see, I could never have done what my sister has done. She is the best single mom I know! She has been kicked out of a rental house because the owners did not agree with a biracial relationship. She has had horrible things said to her from family and close family friends. But, little did they know, Karina is worth so much more than any of those relationships. I, honestly, have never once been ashamed of my niece or my sister. I feel nothing but unconditional love for them both. There is one other statement I have heard more than ten times and it irritates me to no end. "It is okay to be their (other races) friends, but you can't love them." Again, I want to scream. I was taught to love all people, not races of people. And, by the way, I love my friends, so I don't know how to not love my friends. I could not have stood up to all the haters, like my sister has. I could not have raised a kid by myself, it is hard with two parents.
     All of this soap box to share pics with you of my beautiful, kind, loving niece, Karina.

 
 
Karina and her boyfriend Daniel
Karina and Thomas
Karina with MeeMee and Pawpaw

Karina and my sister

Karina and silly Daniel
Please live your life loving people for who they are on the inside, and remember that no one gets to choose their race!

Saturday, May 11, 2013

Sometimes It Just Hits Me

     Sometimes, when I least expect it, it hits me, it takes my breath away.  I stop and think, "I have someone else's liver inside of me!"  It still seems surreal some days that this is even possible. Who were the brave people who tried this for the first time? I want to thank them so much.  I have yet to hear from my donor's family, but I have not lost hope. I keep praying that they will want to meet me and I can personally thank them. I think about him all the time and I know that his family must miss him so much.
      I was blessed to spend this past weekend with two of my college roommates for Becca's Bachelorette weekend. It was so refreshing to spend time with them and two new friends I made. Becca's matron of honor and I really hit it off and I totally relate to her in almost every way, we are both even nurses. Her sis-in-law was very inspiring and so genuine that I felt like I hung on her every word. I also just ordered a book she recommended and I can't wait to start reading it. It was a time of reflection and thinking about my college years. I kept thinking about the question of, "am I living the life I thought I would be living?"  This leads to me thinking about my life story.  Of course, I never in  a million years dreamed I would ever bury babies, be diagnosed with cancer, have a transplant, or even be blessed enough to be called, Mom! This weekend was great to be around other wives that LOVE their husbands, are honest about their quirks and annoying habits, and  all of our talk centered around our faith in Christ.
     My friend Katy, aka Pollyanna, has had 3 babies in 3.5 years! Yes, she still has a six pack and her baby is only 3 months old, but I almost forgot why I love her so much. She is such a strong Christian, yet never judgemental or condescending, she is able to relate to everyone.  I was able to spend the night with her parents on Friday night and I felt giddy like a little kid the night before Christmas. I was able to pick fresh fruit from their garden and eat it, I learned broccoli cooking tricks from Mrs. Jan, I had in depth conversations with Mrs. Jan too, and I felt at home. This family is such a fine example of what I desire my family to be like. I honestly think that if I had my car break down in the middle of the night anywhere remotely close to Baton Rouge, this family would pick me up, take me home, feed me, and help me get my car fixed. They are just good people. Not to mention that Mr. Bobby fixed me a "K" and a teddy bear pancake Saturday morning.  I love the fact that all of their children are into health, exercising, and Jesus.
     I found out that I was the only one out of all five girls that doesn't get car sick! I rode in the back of my van for the first time. I know what you are thinking, we looked so cool pulling up in a minivan on our big bachelorette weekend! I am finally to the point that I can talk about my babies without crying or making people feel uncomfortable. I still kept thinking about little things and why I cared about certain things that none of my other friends seem to think about, they all seem a little more laid back.  I used to be so carefree and spontaneous.  I am so serious about my time with Thomas, I never really give myself a break, but I guess being worried that you might actually die changes how you view things and for sure your priorities. I just want to make sure that these are good changes. Once you have a bad MRI, all MRIs after that are super stressful. I honestly used to go in with the attitude that everything would be okay, but now, I stress out until I hear the results. I am constantly thinking about the environments I am in, what I will be exposed to, what type of food will be available, etc.. I hate being high-maintenance, but it is so much better than the alternative. I know I am bouncing all around here, but it has been so long that I have blogged, I have a lot to say.
     I am super excited about Becca's Wedding this summer! I will get to spend more time with the bridal party and after the wedding, I get to go see the Tan's! I have missed my bud Cherie so much. She even has a new baby boy that I get to meet for the first time. They live in Florida, close to where the wedding is, so we are staying a couple of nights with them!  When I was face-booking her about our plans, I read the previous message she had sent me in January of 2012, just one month before my transplant. It was so nice and comforting. The last sentence said," You will see Thomas graduate high school and college, see him get married, and see your grandchildren grow!" Those words mean so much to me, I still get teary reading them. I am such a blessed person when it comes to friendships!
     Something that I think about that other people probably don't is when Thomas gets hurt and cries out for me saying "I want my momma," it makes my heart swell with joy, but I always think about my donor and how he once cried for his mother the same way. I bet she longs to speak to him or for him to call her for help or advice.I find myself thinking about her often and how hard losing her son must be. I just keep praying that I will be able to meet her someday.
     I am going to say it again, I really hope to do a better job blogging more often! Thanks for reading.
    

Saturday, February 23, 2013

One Year Liversary

     I cannot believe it has been one year! I am so thankful, joyful, humbled, and the list goes on. I couldn't help but think about my donor's family today too. This has to be a very hard time for them. We both have an anniversary today, but they are so very different. I still have not heard anything from his family, but I'm going to keep trying to make contact with them. It is so important to me to personally thank them.
     This year has been wonderful. Sometimes I get emotional just sitting in the car driving around doing errands with Thomas. I will hear him say a new phrase, or he asks to hold my hand, or the absolute best thing in the world is when he tells me he loves me out of the clear blue sky! I cry thinking about how blessed I am to hear these things and watch him grow. Having a child changes you in every way. You instantly become selfless, you no longer need adequate amounts of sleep, and you never stop thinking about them. I pray for the mother of my donor because she must miss her son so much. I kinda went through a spell of being sad after a lovely lady I went to church with had a liver transplant performed by my doctors as well. Unfortunately, after months of fighting, she lost her fight. I guess I had survivor's guilt or something. I would cry every time I thought of her. Why did I do so well after transplant? Why couldn't she live too? While this makes me sad, it is also a great reminder of how my life could have been so different. I feel like I can't say thank you enough to God, my medical team, my family, my church, and especially my donor.
     I watched this special last night on tv about Robin Roberts and her transplant. I could relate to her story in so many ways. She talked about wanting her mom so bad, but her mom had recently passed away. I realized how lucky I am to still have my mom. She knows how to make me feel better in every situation, and she plays with my hair better than anyone else! Robin talked about 30 days in like a solitary room to protect her from germs. I reflected on the 30 days I could not hold Thomas. Not being able to hold him was the absolute worst part of this whole ordeal. I had worried about the pain before the surgery, but there is no medicine to take away heart pain. Ultimately, of course I know that not holding him was a small sacrifice compared to all the other outcomes.
     I feel like every relationship in my life is different, on a higher level now. You start to treat people different and look at them with new eyes when you thought you might have only a small amount of time left with them. I still have a list of things I need to work on, but everyday I get a little closer to my goals. I hope to make my donor proud each day, but more importantly, I hope to honor Christ each and every day of my life!