“You see, I knew the assurances of God’s love in passages like Romans 8 and others. I believed somehow God would work out everything for his good purposes. I never doubted that. Yet my grief was not tame. It was vicious. I battled fears, disappointments, and sorrow. And in my journey, I discovered the grace of lament, a song I never wanted to sing.”
From Mark Vroegop’s Dark Clouds Deep Mercy, pg. 20.
Today has been a hard day. No, it has actually been awful. I’ve had to step away from Ela several times to find a private place to cry. And this is hard to do at hospitals because there are too many people around. Most of them mean well, of course, the art lady and the music lady and the nurses who like Ela and want see how she is doing, the doctors, the social worker, etc…they ALL mean well but sometimes you just want to be by yourself so you can take a breath and let some of what has been bottling up inside burst.
Friends, I’ve struggled to love the Lord for a couple of days now. I find myself giving Him the cold shoulder because I am likely mad at Him. And I share this with you for a couple of reasons. 1) If there are any non-Christians reading this, I want you to know that Christianity has nothing to do with having it all together. Christianity is for broken people…people in desperate need of God’s grace, mercy, and patience. 2) If you are a Christian, then I want you to start praying more often for your spiritual leaders. They have their hard days too. Pain doesn’t care how spiritually mature you are, pain will hurt you anyway.
Yesterday’s walk back to the CICU was a great disappointment. Today’s talks about “acute rejection” and “doing what we can to save the heart” have been devastating.
Leslee and I both feel guilty. Although this whole thing is not our fault, we feel like we’ve deceived Ela by assuring her that getting a new heart would make things better. Yet, Ela has not experienced much besides pain for the last 14 days. She has been stabbed with needles dozens of times. She has had IV’s placed in her via ultrasound…that’s 10 to 15 minutes of screaming for help as someone digs in her arm with a needle while someone else holds her down. She has had to deal with fluid in her lungs making it difficult to breathe. She has been subjected to drugs and substances that mess with her mind and her mood and her sleep. She has been starved and denied water for almost whole days in preparation for procedures.
Although we are thankful for her life. These are the seasons of life where you ask yourself: Is all this pain worth it? Would she not be better off with the Lord?
Let me tell you what we understand. CHOP has a particular regimen for kids who receive heart transplants to make sure the body does not reject the new heart. The standard regimen was not strong enough for Ela. After our warnings about her strange behaviors and steady decline and their own assessments they decided to take her back to the CICU to go through a stronger regimen.
That is part of what took place today. Ela will need higher doses of immunosuppression medications to make sure her body does not attack this new heart. One of the treatments is steroids; however, we have found that her blood sugar spikes with this particular steroid so now she’s a functioning diabetic until further notice. We’re now having to learn about administering insulin to keep her blood sugar in check. Tomorrow, she is going to go through something called aphaeresis. At the cath today, they inserted this huge thing on the side of her neck with an “in” and an “out.” They are going to draw blood through there and send it to a machine that will remove antibodies and then send the blood back into her. This is a couple hour process that should keep the body from attacking the new heart.
We are overwhelmed. There’s no other way to put it.
I’m grateful that IBC has given me the time off, I can’t image Leslee having to carry this burden on her own while I’m away. I am grateful to my parents and them caring for the boys while we are away. I am grateful for Faith Christian Academy and for their patience and care of Josiah. I am grateful for all the prayers and all the cards and the gifts and the money. But friends…this is still really hard. I am sorry I wasn’t more encouraging. Today was a day to lament.
We might need to take a couple of days off from the updates. Not sure we’re emotionally up to it. However, we will inform you if anything big changes.
I am SO sorry you are going thru this! I wish I were with you to help in some way. We all are praying. Im sorry this burden is so heavy. I can think of so many Bible verses but right this moment I’m there with you sitting in silence holding your hand sharing your burden. Just know that we love yall and are with you lean on us! When it gets too hard take some of our strength. I’m praying for you as you help our girl thru this. I’m praying for Ella that it will hurt less tomorrow. I pray that she will not remember this terrible time. I pray your other children will understand. Praise God! He will carry your burdens when they are too heavy. Lean on God to give you the strength to carry on.
Thank you for being honest and raw about your emotions. I own that book and I didn’t realize how important it is to lament before I read it. As you lament, know that we love you all greatly, but God loves you so much more. It’s hard to see the plan through the dark clouds, but God is working. You have both done everything in love and I pray God reassures you of that. Ela is so blessed to have you both as her parents. So let those tears fall, let the lament flow out of you and know we are doing the same with you. God has all of you in His mighty hands. ❤️🙏
Oh my. Dont know what to say and please dont apologize😥we cant begin to imagine. I Feel so helpless. Sending yall hugs and support from far away. Do not feel ashamed or like your bad parents or any of that u said. Youre great parents and your human! I hope you can cry it out together alone. And yes sooooo thankful you both are there. Surely understand yall need a break from posting. Will try and wait patiently but know we r all praying hard. Love yall.
My heart breaks for you and your family. I’m praying for you all especially through these next couple of days.
We have no words. Just that we love you and we know that God is faithful and true. Even in the “even ifs…”
You do not need to apologize or be anything other than honest. It is the most beautiful thing we can offer to believers AND unbelievers, just as you did. We appreciate the updates but there’s so much grace for when they’re just not possible. I am thankful for yours and Leslee’s heart for Christ and it is evident even when there are doubts and disappointment and yes, even anger at God. True believers still struggle with that and I’m so thankful that we have a God who understands our weakness and tenderly remembers we are just dust. We are pleading at the throne for you and Ela, crying with you, our heart breaks at what she and you must endure. 💔 🙏
Rest assured of the love and prayers of more people than you can imagine!
I don’t know what to say….i am just so very sorry.Thanks for sharing your heart. I am praying for Ela to have no pain today. I can’t imagine how hard this is…..God is with you and I pray you can feel his presence with you today. Love you all!!!
Crying and praying
Weeping with you. Your post is a beautiful expression of lament. You guys are loving parents and great examples of trusting God in hard hard times.
Lord, if it’s your will and for your glory, please allow Ela’s body to accept this heart and begin to heal.
Although with a kidney, what Ela is going through is all too familiar. Aphresis is what got Grace back into remission. It’s all so hard and you can only take it moment by moment. God is there in the midst of this. Lean into each other and rest knowing that God does understand every heart, yours and Ella’s.
Hello this is Vivian whited , I am using Felicia’s phone to text you. I cannot put into words what I feel after hearing this news. Your raw honesty is what is needed to express your feelings. I am heartbroken to her of Ella’s ordeal. If I could just trade places with her I would. I am asking God to spare her and take me home. The truma and suffering is beyond understanding. I cannot begin to comprehend what your child and family are going thru. I too get mad at God for some things that happen in life, but he is God. His plan is different for each person. Praying that he would show his mercy and I am crying out to him right now and will continue to hold all of you in prayer. Love and hugs Vivian Whited
I hurt for guys. I know this o e the hardest things a parentcan go through. High estatic times so low that valley you are in is dark. I can only say what you have heard time and again from others.AllI can offer are my feeble prayers. Nit be assured they are going up on your behalf. God bless you.
Lifting you up in the name of Jesus !
God gave feelings ! Sometimes things overwhelm us !This is that time for your family ! Thanks for sharing , so that people know how to pray
No words.
“Dark Clouds, Deep Mercy”. Lament.
I’m deeply sorry for all that Ela and you both are dealing with. Lamenting and even “giving the Lord the cold shoulder” is understandable. As well, as every other raw emotion you both feel. You made what you hoped and prayed to be the right choices for Ela … risk vs benefit included. Never doubt that or guilt yourselves. The promises made to Ela were in best hopes. Ela knows your love. As for whether Ela would be better off with the Lord, only he knows. Your writings are so profoundly felt and moving.
Prayers for Ela, her medical team and you both as you maneuver this painful journey for Ela’s wellness. 🙏🙏
My dear brother, may God minister to you all in this season of extreme need. Here is a song that helped me at a low point about a year ago. Praying for you all. https://www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=https://www.youtube.com/watch%3Fv%3Dg8sazOiolF8&ved=2ahUKEwj-rLfKgNOIAxWK48kDHQgvLLsQypYNegQIFRAB&usg=AOvVaw2H8oSLZOGKJs1-A7sCVLWJ
We are still remembering you. 😢❣️🙏🏽
I am weeping with Miguel and Leslee. Your experiences are very near to my heart and you have expressed your heart so well. Praying for a miracle for Ela. Praying the nearness of God for you both. Love and hugs.
Praying for you the Lord’s peace that passes all understanding. Here is a song that may minister to you as you lament. “ Lord from sorrows deep I Call”
https://open.spotify.com/track/14v36JE4UYters7sFvawnS?si=3YzJxFy5S9mYZ7aLRiqOFA
Praying for you and Ela every day. May God keep her in the palm of his hands and protect her against any and all threats that come to her little body. May the Lord grant her the strength to go through this difficult time with all of you by her side. Love all of you pa pa Jr.