|Ethan hanging out in his highchair after finishing his dinner the other night. :)|
Ethan's first birthday is only eight days away. Wow, what a year it has been. If you would have asked me on Friday, August 20, 2010 (the day that Ethan was diagnosed with PBD-Zellweger Spectrum) if we would be getting to celebrate Ethan's first birthday, I probably would have just burst into tears and not been able to say anything..... But, the Lord willing, we are going to make it --- just eight days to go to a huge milestone for any child, but especially one with PBD. I still have days that the tears flow freely - I've had at least two of those days this week, but most days it is very hard to even remember how I felt when we first recieved the news that our beautiful baby boy was not well. This has not been the year I would have every expected, but I am thrilled that I can hug, kiss and hold my little boy and we are celebrating the blessing that he is to everyone who knows him.
Since Ethan's diagnosis I have thought to myself and sometimes aloud more times than I'd like to admit, "Why Ethan? Why anyone?". Months ago I remember writing about a phrase that Nancy Guthrie used in her book, "Holding on to Hope," - which basicially was "Stop asking why and start asking how will God be glorified." This week, I've had to think about that a lot.
On Wednesday night after church Ethan's great grandpa, a retired pastor who loves the Lord with all of his heart, mentioned to me the following passage in Exodus that is often so hard for us as humans to understand:
18 Then Moses said, “Now show me your glory.”
19 And the LORD said, “I will cause all my goodness to pass in front of you, and I will proclaim my name, the LORD, in your presence. I will have mercy on whom I will have mercy, and I will have compassion on whom I will have compassion. 20 But,” he said, “you cannot see my face, for no one may see me and live.”
- Exodus 33:18-20
As you probably guessed, it is v. 19 that is the tough one.... "I will have mercy on whom I will have mercy, and I will have compassion on whom I will have compassion." This verse doesn't seem to give most of us a very good answer or at least not the answer we want, to the "why" questions that we so often ask.
I wish I could say that I will never think or ask why, but that would be a lie. But what I do know is that the while I may not be able to find all the answers that I think I want, that I can find comfort in God's Word.
13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
*Ethan is fearfully and wonderfully made! Jesus created Ethan and knit him togegher in my womb. He created Ethan and has a purpose for his life.
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
*When God created Ethan, He knew that Ethan's peroxisome's wouldn't work the way they typically should. But I know and try to remind myself each time I look at my little boy that that doesn't mean that Ethan isn't perfect. Ethan is perfect because he is who God created him to be. My son has purpose, and Jeff and I have purpose. (I searched for the word "purpose" on Bible Gateway. Check out what I found out, here.) So, what is that purpose? What is the Lord's will for our lives?
1 Thessalonians 5:16-18
16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus
*I believe that part of the Lord's will/purpose for Ethan and us is to point others to Jesus! Those who know me know that I could not do this journey alone. Without the hope that Jeff and I have in Jesus Christ..... I don't want to think what we would do.... (Check out this website for more verses on God's will.)
*Okay, so not being anxious, has always been hard for me. Since Ethan's PBD diagnosis, even more so, but I know, I have peace because of Jesus. I know that whatever happens, we'll be okay. That if Ethan leaves Earth before I am ready that he will be in the presence of the Lord and that I will see him again someday.
In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.
*I am so thankful that the Lord is helping us through this "weakness." I will admit that I pray for a miracle, I pray for a cure, I pray for healing and wholeness for Ethan. But I know that even when the times come that I don't know what to or how I should pray that the Lord knows my heart and that the Holy Spirit intercedes for me. I know that Jesus is the Great Physician and while Ethan's body may never be "healed" on Earth, and that while Ethan may be called to heaven before I am ready, that I can trust that when that day comes that Ethan will be healed forever by the Lord.
Why Ethan? Why anyone? --- Sorry that I couldn't give you much of an answer, but I do know that I am very thankful that in eight days we will be celebrating my little man's first birthday!
So, after I think/ask "why" I will try to remind myself to instead ask "How will HE be glorified?" And because I know that Jesus loves Ethan even more than I do and that John 3:16 says, " 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." and that is the kind of love that Jesus has for Ethan; I can have hope and a reason to remember to rejoice, pray and give thanks.
Thank you, Jesus for our son, Ethan! We love him so much! Thank you for loving him even more than we do!