When we found out a couple of days ago that Jackson's homecoming was drawing near I wept. As I cried, Jeff held me tight and I cried, we prayed, and I cried some more. While my heart breaks whenever I hear of another one of our GFPD kid's passing, it is tougher on me when they are a family that I have met in person, and of course as I mourn for my friends' loss I also mourn for us and the reality of this ugly disease called PBD-ZSD that will someday take Ethan away from us is undeniable.
Jeff, Ethan and I had the pleasure of meeting Jackson's mom for the first time at the 2011 GFPD Conference in Nebraska, and then this summer at the 2012 GFPD Conference in Florida we got to visit again not only with Angie, but we also got to meet Jackson and his grandparents. Angie and her husband Travis loved Jackson with all of their heart and while I know that they know without a doubt that Jackson is with the Lord and that they will see him again, this hope does not diminish the pain that I can only imagine that they are feeling right now.
I've never met Millie's parents in person, just online, but my heart still broke when I heard the news today. I'd like to ask a special pray for their family as in addition to Millie's parents and the other adults who will miss her very much, Millie has several siblings who are mourning the loss of their sister as well.
I love my GFPD family and I cannot imagine this journey without them and while the majority of our sharing is online or on the phone, aside from the few short days of the GFPD conference when a number of us are able to meet together in person (all the time wishing that ALL of our families could be in attendance), we really do live this life together. This summer as we gathered and listened to the families who have been on this journey much longer than us, I almost had to hold back tears as they shared about the days before the internet and free long distance calls. When I start to think about how isolating it can be even now when it is estimated that only 80 kids are born with PBD-ZSD in the U.S. each year, I truly don't want to think of what it would be like if there was no real way for me to connect with another parent that "gets" it. We laugh, we cry, we share frustrations, challenges, and triumphs and in times like these we mourn together and for one another. Regardless of where along the PBD-ZSD our families are personally, we grieve and our hearts break when we learn of another family whose little one has passed away.
|Jackson, March 3, 2007 - December 7, 2012|
|Millie, November 21, 2006 - December 1, 2012|
- Please pray for Jackson and Millie's families.
- Please continue praying for all families who have lost children to PBD-ZSD and for those whose children are still fighting the PBD-ZSD battle day by day.
- Pray that real treatments and a cure will be found! Please don't stop praying for miracles! We haven't, and although we know it may not be God's plan to miraculously heal Ethan, I'm not going to stop asking, but even if that doesn't occur, I will not turn my back on Him.
- Pray that those who do not know the Lord would come to know Him and the peace and assurance that only comes from knowing Him as their personal Savior.
- Pray that the Lord will continue to work in our lives and that He will give us the wisdom, strength and patience needed to be the parents Ethan need.
- Pray that our lives would be a testimony and used for the Lord's purpose and glory.