Monday, January 25, 2010

Goodbye Josiah...

Once again, I ask you to pray for the amazing Wilson family. Milo and Erin said goodbye to Josiah as he went to Heaven yesterday. As we did with Wesleigh Anne, we celebrate the fact that Josiah's heart is whole and that he is now healthy without tubes or wires. However, our heart breaks for his precious family. Please pray for God's love to engulf them and for His peace to dominate their hearts in the days to come. Erin has always signed their blog "a heart that holds on" as a dedication to God and in reference to the song "You Never Let Go". Therefore the thought that has dominated my mind since yesterday afternoon is part of that song... "I can see a light that is coming for the heart that holds on, a glorious light beyond all compare. And I can see an end to these troubles, but until that day comes, we'll live to know You here on the earth." Erin and Milo certainly live their lives so that everyone around them can't help but think of God and I know that Josiah has encountered a glorious light beyond all compare....

Wednesday, January 20, 2010

Is anything ever really "normal"?

For months, many of you have read about a whole lot of emotion from me. In case you may have thought that all this emotion was caused by Wesleigh Anne's illness or the trauma that our family has gone through this past year, it wasn't. I am an emotional person...some people might even say dramatic. I prefer to use the word passionate. The past month has been no exception.

We started January 2010 much like we started January 2009. We went and watched fireworks at The Skippers' and then in the next few days I started work at Grand Strand. It should feel like business as usual. However, a week or so later, it wasn't. We learned that we are carriers for the translocation that caused Wesleigh Anne's Down Syndrome. What that means is that one of us is has a "balanced translocation". Much like carrying the genetic material for blonde hair or blue eyes, although with much different consequences. I am not a doctor and certainly not a geneticist, but with everything I read it seems that the chance of passing the translocation on again is 50-50. Not good odds. Certainly not chances we are willing to risk. If we could ensure that any future children would only have Down Syndrome and not other health consequences, we might would be willing to think about it...but with Down Syndrome frequently comes heart defects, bowel defects and other health problems. We can't imagine going through that ordeal again, nor can we be responsible for making another child suffer. Therefore, our options...please keep in mind that we are still doing research and still learning about new options as we go. Our major thought is adoption. There are many, many children who need loving homes and we are desperate to eventually have a child that we can love and raise. This is certainly the option that we have considered the most frequently. Other options that we know about, but are not even sure we want to consider, are...embryo adoption followed by in-vitro placement, genetic selection and many others. While these options would allow us to carry and deliver another child (a probably healthy child), we aren't sure how we feel about them. We don't have moral objections to embryo adoption, but aren't sure we want to risk the in-vitro not working. Genetic selection brings some pretty serious moral objections.

I know in reading this it seems like we have made a decision. Just to put things in perspective, I could go through the list of everything we have "decided" in the last few weeks...we "decided" (and were very confident least for a day or two) to build a house, buy a house, rent a house, adopt through DSS, adopt through private adoption, and adopt through Bethany Christian Services. Also in there were thoughts of adopting from a foreign country and using a gamete donor. you can see, we have been on an emotional roller coaster of "decisions" lately. The only thing we know for sure is that we are more determined than ever to somehow have a family including children someday.

I have said to many people that this latest news has been harder to accept for me than having Wesleigh Anne pass away. I know that sounds shocking, but please let me explain. We spent almost 6 months fearing that we would lose Wesleigh Anne every day. Somewhere in that process, I feel that God gave us acceptance of that situation. So, by the time she passed away, we had already accepted that it would possibly happen. However, we also always felt that we could and would eventually have another child of our own. Now, not only are we mourning the loss of Wesleigh Anne, we are mourning the loss of the possibility of other children that are direct, genetic descendants of our own. It's not that we feel that we couldn't love an adopted child as much, or possibly more than, our own child...we can and I know that one day we will get lucky enough to have that experience. It's just another loss. But, we will eventually adopt (right now we are saving money towards that) and we will know the joy of loving another child or two. So for now, we are praying that God will have the perfect child with a mother whose heart craves what is best for her child and will make her brave enough to not consider abortion, but to turn instead to allowing another family to raise and provide for her child. We are praying that this child will be healthy and strong and will know that whether or not they came directly from us that we will love them more than they can imagine. We are also praying that we will have a confidence about which adoption route to pursue.

Enough about us...I have another massive prayer request. For months I have asked everyone we know to pray for the Wilson family. We got to meet Erin and Milo (the parents) and their amazing children Daylia, Hazel and Josiah when Josiah was admitted at birth to the PCICU. For a while they were our neighbors in the unit and they have become great friends of ours. They have spent more time than we did in Charleston and it is much farther from their home in Greer than it was from our home in Conway. They also have Daylia and Hazel, two adorable preschoolers, to consider. We celebrated just after New Years when Josiah went home for the first time. However, he is now back in Charleston and in need of some serious divine intervention. Josiah had a heart cath last week that said he is not strong enough for the second stage of the HLHS surgery that he desperately needs. The family is researching their options and need prayer for clarity of mind and peace in their decisions. Please pray for this incredible family as they consider the next steps in their journey. You can read more about their story at



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