Update~
Thank you all so much for taking the time to pray for our family. I have felt such a peace with knowing all of you are thinking and praying for us. I (Jen) have gone through a lot of this journey on my own. Riding a roller coaster of emotions for the last few years and not sure how to communicate about it. One morning last week Jared and I were talking about all the remarks Andon has been getting and how hard it is. Well, a couple hours later I received an e-mail from him that he had sent to everyone in his office asking for prayer. I took so much comfort in knowing we had all of his co-workers praying on our behalf and knowing what we were going through. Then he decided to write on our blog and ask for prayer. The response was overwhelming and I can't express how freeing it is knowing you have all of these people going to the Lord on your behalf. So, Thank You So Much!
I wanted to go ahead and answer some of the questions from the comments here... Andon was born with a rare genetic disorder called Treacher Collins Syndrome. It affects 1 in every 10,000 births. It is a disorder that affects the growth of the facial bones while the baby is developing in the womb. Because of this Andon was born with a cleft lip that was repaired at 3 days old and a cleft palate that was repaired for the first time at 8 months. It did take 3 more surgeries to get it to stay closed and he has had a few other related surgeries. Since he was little his Dr's have talked about reconstructing the area underneath and around his eyes. Really we could go through with that at any time now but we are unsure of what to do. Also, they are talking about extending his jaw and that would require some hard things for a 5 year old to go through. He will have some dental surgery coming up in May and then a bone graft done to his upper jaw sometime soon. Andon does have a mild case of this disorder but by some of the remarks you wouldn't know that.
Thank you all for your sweet comments of him. I think he is absolutely adorable as well!! :)
Also, to Beth regarding Nancy Dunn.. Yes, it is the same Nancy! She wrote the daily devotional "Dear Daughters". It is a great devotional and I just adore her!
(original post)
Family,
If anyone of you know me you know that I normally have a boundary with personal stuff (Jared). God is teaching me that this is one area I need to "let go". So in response to Him I will be transparent and ask for help.
Andon is now 5 years old. He is coming to that point in his life where he is becoming not only self aware but, aware of the world around him and how it relates to him. Lately Jen and I have both noticed a great deal of "remarks" towards Andon from other children and even adults (I dont like your eyes, he's a monster, what's wrong with you etc) This is extremely hard for Jen and I have to admit for me as well at times...
Jen and I are also coming to that point in Andon's life where we need to make decisions regarding surgeries (to have or not to have). Andon has had about ten so far and has several to go. The decisions are no longer minor, they involve major reconstruction, possible "hardware" (bolts coming out of his jaw to extend it down and out etc) This pains me beyond belief and I must admit that while I trust that God has made Andon perfect and chosen the right parents for Andon, I am somewhat unsettled with the final decisions that need to be made. Know this, Andon's surgery to reconstruct his eyes and cheeks are cosmetic at this point! This has left Jen and I to seek the Lord in the most sincere and humble way. I love the Lord so much, I am humbled to think He has chosen both Jen and I to care for His perfect gift. I seek to honor God in all that we say, do and think. In regards to Andon I want what He want's.
What we do not need is sympathy. Jen and I will be the first to admit that Andon was, and still is, a major blessing to us. I can't imagine a more perfect gift for the two of us. His birth was a turning point in our walk, it was the first time I truly heard God speak to me, I am so thankful.
What we need is prayer. We need prayer that God will direct us through these decisions. We need prayer that God's plan is made clear and we will walk out that plan faithfully, boldly and with joy in our hearts. Jen and I are very excited to see how God will not only use this time to communicate His love and glory but how He will use Andon's life to reveal Himself.