Rough day....

It wasn't a great day for Ethan. Although he did okay at church, he had several seizures during his nap after we got home from church. For the last several days the seizures seem to be contained to nap time, and we have no idea why and this evening, Ethan was just not his usual self. It took him much longer than usual to fall asleep -- more than an hour later than what is pretty typical for him. We aren't really sure what is going on, but he did just have another medication change on Friday (the dose of Onfi continues to slowly decrease, as the dose of Phenobarbital continues to slowly increase) so that might be why he is acting different. 

I am scared. I hate PBD-ZSD so much. I hate the seizures, I hate the physical and cognitive disabilities and the health issues that come with it. I hate that we don't yet have effective life-saving treatment options (or a cure). I hate that so many of my friends can no longer hug their children and kiss them goodnight, and I hate that someday I will likely be in the same situation. I love my son, but I hate this disease. I hate that PBD-ZSD touches every aspect of our lives and that it is so hard for me to be able to find joy, peace, and contentment when my human mommy heart just wants my son to be healed. I want to be able to have a conversation with with him, I want him to be able to do all the things a normal, typical five and a half year old boy does, but all of those things have been stolen because of PBD-ZSD. I'm pretty sure that PBD-ZSD has made me not a better person but a more bitter person. I am in a place right now that I am really struggling with fear, worry, hatred, jealousy, anger, discontentment and envy [to just name a few of the sins that I am currently wallowing in]. I just want to scream at the top of my lungs, "It's not fair. Lord, I know You have the power and ability to heal my son, but that that might not be Your will for Ethan and for us, and I don't like that at all!"

I've read more about grief and suffering than I think I would have ever done if our world wouldn't have been completely shattered because of PBD-ZSD, and I have to admit that although I have been a born-again Christian for more than half of my life and I still don't fully understand a lot of things. I also know that although I am sad and mad and frustrated and all the other things I mentioned above, that I'm not completely hopeless, because ultimately I have hope because of what Christ has done. God's love for me, a sinner saved by grace, is amazing, because there is nothing that I've done to earn it and there is nothing that I can do to lose it. 

"For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life."
John 3:16

" I give them eternal life, and they shall never perish; no one can snatch them out of my hand. My Father, who has given them to me, is greater than all; no one can snatch them out of my Father's hand. I and the Father are one."
John 10:28-30

For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
Romans 8:38-39

This is love: not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins.
1 John 4:10


This morning our pastor's sermon was titled "Marveling in God's Message," and focused on Psalm 119:1-16. It was a powerful and convicting sermon. One of the songs we sang this morning is "All I Have Is Christ," and as we sang I couldn't hold back the tears. I am so guilty of frequently not living a life that reflects the words that I sang. Jesus is my Savior and Lord.  I have assurance that because of His sacrifice, His love, His grace, and His mercy that I have been forgiven of my sins (past, present, and future) and one day when I stand before God I'll be accepted because Jesus paid the price for my sin. However, I'm not always a very good witness to the world of the hope that I have in Christ. 

I think part of my reaction to "All I Have Is Christ," this morning stems from my failing to spend the time I should in God's Word. There have been times in the past where I seemed to be doing pretty good at digging into my Bible and other times which I have pushed it aside -- not because I no longer believed it, but simply because I chose to not make it a priority. My prayer is that in 2016 that I would grow closer to God, and I know that reading God's Word is a crucial component of deepening that relationship. 

My reading/reflection for today (January 31 Day Scripture Writing Plan) really spoke to my heart, since I will freely admit that I am struggling to see the beauty in our current circumstances.

He has made everything beautiful in its time. He has also set eternity in the hearts of men; yet they cannot fathom what God has done from beginning to end. I know that there is nothing better for men than to be happy and do good while they live. That everyone may eat and drink, and find satisfaction in all his toil - this is the gift of God. I know that everything God does will endure forever; nothing can be added to it and nothing taken from it. God does it so that men will revere him. Whatever is has been, and what will be has been before; and God will call the past to account. 
Ecclesiastes 3:11-15

Notes about these verses from my Life Application Bible:
3:11 - God has "set eternity in the hearts of men." This means that we can never be completely satisfied with earthly pleasures and pursuits. Because we are created in God's image, (1) we have a spiritual thirst, (2) we have eternal value, and (3) nothing but the eternal God can truly satisfy us. He has built in us a restless yearning for the kind of perfect world that can only be found in his perfect rule. He has given us a glimpse of the perfection of his creation. But it is only a glimpse; we cannot see into the future or comprehend everything. So we must trust him and and do his work on earth.
3:12 - To be happy and do good while we live are worthy goals for life, but we can pursue them the wrong way. God wants us to enjoy life. When we have the proper view of God, we discover that real pleasure is found in enjoying whatever we have as gifts from God, not in what we accumulate.
3:14 - What is the purpose of life? It is that we should revere the all-powerful God. To revere God means to respect and stand in awe of who he is. Purpose in life starts with whom we know, not what we know or how good we are. It is impossible to fulfill your God-given purpose unless you revere God and give him first place in your life.


If you happen to see me or talk to me while I'm stuck here in this valley, please know that I have good days and bad days. Some days I don't let PBD-ZSD get the better of me, but other days the sorrow is nearly overwhelming. Although it might not always look like it, I am leaning on God for strength, and I might be a mess, but I'm thankful that I am His mess. I'd also like to ask that if you do not yet know Jesus as your personal Savior and Lord that you don't let my shortcomings, sins, and struggles get between you and eternity. If you are interested in learning more about God and His love for you, please check out the "Why do I have hope?" and the "Their Words, My Thoughts {Recommended Reads}" sections. 


Would you please pray for Ethan, Jeff and I? 
  • Pray that we would feel God's presence, eagerly seek Him and remember to keep trusting His promises when we find ourselves overwhelmed by the current struggles of this life.
  • Pray for a solution to the continued seizures and that our little guy would be able to get back to where he was several months ago in regards to his overall happiness, alertness, health, and mobility.  
  • Pray for breakthroughs in science that will lead to effective life-changing, life-saving treatment options for children born with PBD-ZSD. 





Comments

  1. Thanks for your honesty and humility. I cannot imagine at all what it looks like to walk through your life and live by faith. But I am praying. We love you and your family!

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