Friday, April 10, 2015

The Good, The Bad, The Ugly

The Good:
It's been about 16 months since Danny's heart transplant and about 3 months since his incisional hernia repair. All incisions are healed with no further complications. He recognizes that he is getting stronger and is able to do more and more. Danny works from the office more than he works from home now. He has not had rejection and all looks good from the doctor's perspective with a few minor issues...The transplanted heart came with a small amount of blockage in the artery so they are watching the possible increase in that closely (so far no change). They've switched him to a different immunosuppressant (one of the ones he will take forever) that works better with blockage for whatever reason. The negative side of this new medicine is that it inhibits injuries will be harder to heal from. But, that's not really a big deal in the grand scheme of this whole thing. Overall, everything is just fine!

The Bad: 
The 2 immunosuppressants he will take forever have some really hard side-effects that are worse for some more than others. Danny is a worse one! The meds cause him to have severe, uncontrollable, and rapid onset of diarrhea. Danny will feel better for 2-3 days and then feel like he can't be far from the bathroom for a couple of days. He was really hoping that the GI symptoms were caused by the incisional hernia even though he was told there was no connection (wishful thinking doesn't hurt I guess!) and has had a really hard time coping with the reality that he could have these negative side-effects forever since these are forever medicines. 

Danny has new insurance through his work (having insurance through work definitely goes in the GOOD category!) and it has been a tough transition. The most recent issue was when his newly assigned "case manager" called him to tell him about the side effects he will have with his medicines and also to let him know that he has an expected life-span of 8 years from now. Danny is already struggling emotionally with all of this and that didn't help. I won't spend anymore time writing about that lady...I'm sure our feelings about her phone call are the same as anyone reading this!!

The Good:

  • Better to be alive with bathroom troubles than not alive.
  • God can heal Danny from head to toe...make his new heart perfect, make side-effects go away, whatever! God can even completely heal Danny's body so that he doesn't even need immunosuppressant medicines. All of that is easy for The Lord, and that's definitely good! 
The Ugly:
I started this blog to have an easy way to keep family and friends updated in an easy way. I had no idea it would be so cathartic for me and I certainly had no idea so many people would read. Now that I know these things, I keep writing because it helps me feel better, but it's also a way to prayer requests out to a lot of people who will pray...and the power of prayer is...powerful! (lol) I said all of that because I don't want people to feel sorry for us. I hear people say how hard this all is for us and how strong we are. That's not it. I"m not strong. Today has been so hard that I'd like to get in the fetal position and cry. Not strong. But that's okay because it's in my weakness that God is strong. Better said: in my weakest places is when I feel God's strength the most because I need it the most and so I recognize it. It's not that God is only strong when I am weak...He's always strong. It's that I forget that I need His strength when I'm not weak. So, the truth is that I'm thankful when I'm in a place of weakness because I never want to forget how strong He is and that I need His strength instead of mine. That's the ugly transparent reality of me and a lot of us I bet, since we are human after all. To recap...I blog and try to be as real and honest as possible because I need your prayers. 

I am so tired. Teaching is a hard job. I really had no idea how hard it would be. I'm blessed with a fair, encouraging, and supportive principal this year and hopefully for many years to come, but that doesn't make the workload less. It's really unbelievable how many hours teachers work and then are still not caught up. 

I am so tired. Parenting is so hard! Maggie and Charlie are absolutely amazing and I literally thank God every day for them. I just love them so much it makes me feel like my heart will jump out of my chest. But boy, parenting is hard! To watch them struggle is so painful. I want to fix everything for them but can't, and even if I could I shouldn't because they'd never learn from their mistakes that way. Both kids are struggling with all that goes into a dad who has had a heart transplant. Charlie's struggles come out as stress, anxiety, fear, sometimes anger. Maggie's struggles show up through her school work (It's interesting how two siblings can be so different). I could spend a lifetime saying Why God?? But on the other hand I don't need to because I know that it's through trials that we grow closer to Him and are therefore molded into the image of Christ more and more. Isn't that what we want for ourselves and our children? The problem with parenting is that I can't make Maggie or Charlie use these trials to draw them closer to the Lord. That's why they're struggling...God is trying to draw them even closer to Him. Can I kick them, shove them?? As parents we can teach our kids and pray with and for our kids, but at some point they have to develop their relationship with the Lord on their own. My relationship with the Lord isn't theirs to share. They have to have their own. This isn't about their salvation. John 3:16-18 says "For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life. For God did not send his Son into the world to condemn the world, but in order that the world might be saved through him. Whoever believes in him is not condemned, but whoever does not believe is condemned already, because he has not believed in the name of the only Son of God". Assuming they are saved, Maggie and Charlie can be nearer to or farther away from the Lord depending on how much they put into the relationship. That's the way it is for all relationships and to me it's no different with the Lord. When we give God time through reading the Bible, praying, singing, etc...we draw closer to Him. The Holy Spirit who lives in us rises up and feels more alive. When we neglect time with the Lord, we draw away from Him and the Holy Spirit shrivels (at least that's how it feels to me). God never leaves us or forgets about us, we forget about him. We neglect him. So that's why parenting is hard. I can't make Maggie or Charlie draw closer to the Lord. I can teach them how, I can be an example, and I can pray for them. But I can't do it for them. And that's hard. 

I am so tired. Being a caretaker is hard. Being a wife is hard, but I've found that it's even more so with a sick husband. The thing is that Danny isn't "sick" anymore. He has a new heart that is working just fine and his cuts and scrapes and bruises are all healed up. But, he still hurts, feels old, and has major bathroom issues. It's so hard to have the words to say "let's get up and live life" without sounding uncaring about the very real struggles he faces. I don't know how many more years Danny has. I hope it's at least 40. But, I do know I don't want to waste any of them being upset or sad about the negatives associated with transplant. I want to rejoice and be glad! I want to celebrate life! I want to enjoy our children while they are still at home! I want to learn how to ballroom dance with Danny. I want to take walks and have picnics. I want to laugh and be silly. I want to enjoy the sunshine and the rain. I just want peace and joy, and I want that for Danny too. I'm worried he believes that nurse lady who told him he will probably die in 8 years. She is not the one who determines his days. Pray with me that Danny will fight his discouragement and fear. Pray we me that the Lord will strengthen Danny and give him hope and joy. Pray for all of us that we are each drawn to the Lord closer and closer because all of these really painful struggles we've walked and are still walking through are worthless unless we run to the Lord as fast as we can and allow him to be our rock, our friend, our strength, our comforter, our champion fighter, our loving father. Lord, help me to teach my children by example instead of words. And Lord forgive me for forgetting you and trying to rely on my own strength. Sharpen us through this fire so that our lives honor you. Make all of this a testimony of your goodness and your faithfulness. 

Songs on my heart right now:

Draw me Lord
Draw me Lord 
Oh Draw me Lord 
And I'll run after you


You are the strength when I am weak 
You are the treasure that I seek
You are my all in all

Seeking You as a precious jewel
Lord to give up I'd be a fool
You are my all in all

Taking my sin, my cross, my shame
Rising up again, I bless Your name
You are my all in all

When I fall down You pick me up
When I am dry You fill my cup
You are my all in all

Jesus, Lamb of God
Worthy is Your name
Jesus, Lamb of God
Worthy is Your name


1 comment:

  1. Beautiful because you focus on the Lord, heart-wrenching because the struggle is real. I'm thankful you keep us posted. If it helps you, it helps us too.