March 28, 2012 - May 27, 2012
Sunday morning I got a text from my new friend Jeanine letting me know that her precious Corey had passed away. I was crushed. You may remember that just a few short weeks ago Ethan and I had the honor of spending an afternoon with Jeanine and Corey (and Corey's big sister Casey and their grandma). While I know the reality of this disorder it hit me especially hard because Corey is the first child with PBD that I've met in person who has passed away.
On Monday evening Ethan and I drove to my parents house so that we could attend the visitation and funeral on Tuesday morning. I am so thankful that my mom was able to drive us and go with. The three of us attended the visitation and then my mom and Ethan went for a walk while I attended the funeral service. I was blown away by the number of people who knew Ethan and about us. Sometimes people come into your life that you instantly have a connection with. From the first time that Jeanine and I talked on the phone I felt this with her -- we just clicked. It was one of those "we'd be friends even if it weren't for this nasty disorder," sort of thing. Jeanine is a teacher, a mom, a wife and a fellow sister in Christ. She and I have a lot in common and although we'd only spent a few short hours with each other a couple of weeks ago it felt like we'd known each other so much longer. Funny how that sometimes works.
The memorial service was a celebration of Corey's life and the impact that she had on all who knew her and those that will still be touched by her legacy and her parents. Corey's parents and family have a strong Christian faith and know that Corey is now in heaven, completely healed in the presence of Jesus, and that they will see her again someday. This assurance gives believers hope, but it does not take away all the pain. We still grieve. In Psalm 31:9-10, we read David's words in a time of great struggle: "Be merciful to me, Lord, for I am in distress; my eyes grow weak with sorrow, my soul and body with grief. My life is consumed by anguish and my years by groaning: my strength fails because of my affliction, and my bones grow weak." As I listened to the ministers share the hope that believers have in Jesus and that we don't have feel hopeless because Corey is not lost, we know where she is, I tried to cling to those words (which I know deep in my heart and soul, but it is still good to hear) as I sat crying, knowing the reality of this awful disease that took Corey will someday take Ethan.
One of the ministers shared a well known passage, Psalms 139:13-18 (below) and shared his opinion/thought that just maybe when Corey met Jesus she may have said something similar to Him.
"For you created my inmost being' you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, God! How vast is the sum of them! Were I to count them, they would outnumber the grains of sand - when I awake, I am still with you." I have often read these words and found comfort in them knowing that as Ethan's mom, Ethan is not a mistake and that God knew exactly who Ethan would be and that He loves Ethan even more than Jeff and I do (which is of course pretty hard to imagine).
I've been a Christian for most of my life. I first prayed for Jesus to be my savior when I was around 8 or 9 years old. In high school my faith grew and I began to understand more of the importance to let Jesus be LORD and Savior -- that it wasn't just about having "fire insurance" and the assurance of heaven but also about daily understanding that God has a plan for your life and that He loves you and cares about you and although He already knows what you are going through He wants you to talk to Him about it and seek His guidance, wisdom and ways. During college my relationship with the Lord continued to develop - I even spent some time looking at the doctrine of the church I attended to make sure I actually believed what the church did, etc. After college when Jeff and I got married we had to make a choice about where to attend and have been blessed by being part of a body of local believers. Our church family loves us and Ethan and while for most of them it is still very hard to understand the journey that we are on, we are very thankful that we have their support on this journey.
I am so thankful that my friend Jeanine has this type of church family support as well. As I listened to the pastor share about how Corey had touched him and the church I couldn't help but thinking about Ethan and all the children with PBD and how they have a way of touching so many people in ways that we may never even realize. While I struggle a lot with everything that comes with this diagnosis, I know that there is a purpose for Ethan's life, just as there was for Corey's. I will continue to cling to God's promise in Romans 8:28, "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." and the hope that I have because of His great love for us. John 3:16-17, "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. For God did not send his Son into the world to condemn the world, but to save the world through him."
Yesterday was tough......
- Pray that people will come to know how much God really loves then and that there is hope in Jesus.
- Pray that the Lord would be glorified in the lives of Corey, Ethan, and all children and families whose lives are forever changed because of PBD.
- Pray for my dear friend Jeanine and her husband Bill and their daughter Casey as they mourn the loss of Corey.
- Pray for all families impacted by PBD.
- Pray for the doctors, researchers, nurses, therapists and teachers that are doing their best to help us love and care for our children. Pray for miracles. Pray for healing, pray for new treatments and a cure.
- Pray that Ethan will continue to stay healthy and that he will grow, develop and learn new things.
- Pray that the new higher dose of Cystadane would cause an increase in the function of Ethan's peroxisomes and that the clinical trial that would include more children would get up and running soon.
- Pray that Ethan would be able to get the rest he needs at night (bedtime continues to be stressful and a real struggle).
- Pray that Jeff and I will be able to be the parents that Ethan needs and deserves.