Precious Hands and Feet

Already missing these precious hands and feet. I have been kissing them all week long and wishing they didn't have to change. It's one of those decisions where, in so many ways, we wish we could just live life as it is because, after all, we love and accept Joel entirely just as he is. He is so happy, so healthy and so sweet right now. He still does not understand his limitations. Yet we do. We know that these surgeries will enhance his quality of life and allow him to do much more than he will otherwise be able to do. For us, we are not facing a cosmetic issue right now-we want our son to reach his full potential and use his hands as much as he can.  We have fallen in love with Joel's little feet and hands though. We have fallen in love with every part of his body. He is fearfully and wonderfully made and more precious than words can say. 

There are so many lessons to be learned from Joel and children like him. Having him in my life has reminded me of how temporary these bodies we live in are and how fast this life will pass. We were created for something so much greater and better. We all have struggles and trials in this life that come in many different shapes and sizes, and everyone grows old and dies. My prayer and hope is that Joel's purpose be about something much greater than this life though.  I believe God will use him to bring hope to people who are lost-hope that only Jesus can give. Hope of freedom from garbage and hardship. Hope of an eternity of joy and love. Please pray that this will be the case. Some verses that touched me this year are Philippians 3:20-21- "But our citizenship is in heaven. And we eagerly await a Savior from there, the Lord Jesus Christ,  who, by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be like his glorious body." Our precious boy may have a problem that is more physically visible to the world around, but the reality is that we all have problems and situations in life that need saving from. And there is Someone who can truly offer hope and peace in the midst of the craziness of a fallen world. Jesus can truly transform. 

Please pray for Joel tomorrow as he undergoes surgery at 7:30. We are so blessed to be surrounded by a loving and supportive family and feel the prayers of so many people. God is good all the time.

Ready or Not: Surgery is Here!

This is a post that has taken me a lot longer to write than I originally meant.  For those of you who did not read my post about Joel's birth, please read about it here: http://marvinandsharon.blogspot.com/2014/11/welcome-baby-levi-joel.html Writing about Joel's journey has not come to me easily as I want to express in a meaningful way how amazing he is, how great God has been, how we feel and what lies ahead of us. It is to the "ready or not" point though. We are a week and a day away from his first Apert's Syndrome-related surgery. August 31st, he will undergo surgery on both of his hands and feet to start a two-stage process of separating his fused-together bones so that he can have all 20 fingers and toes. If all goes well, he will sleep (or not sleep at all) at the hospital one night and survive roughly one month in four casts.

It really does not seem real that we are to this point. Ever since he was born, I have felt like we are running a marathon-rushing to get paperwork done, schedule the first surgery, pack up and move, get insurance in place, find an apartment stateside, move in to a new place, transition and many, many more logistical and emotional aspects that have come along with this year. The grace and mercy of God have no doubt cushioned and helped us through this whole process. We feel the prayers of the saints upholding us and the love of Christ being poured upon us through His precious body, the church. Doors have opened left and right, and people who we never would have expected have come to our aid. To say this has been an incredible year would be an understatement. Joel has brought blessing upon blessing to our lives and more joy than we ever knew possible. My heart is so full-full of joy and hope and really just in awe of the beauty God can bring from ashes.

We anticipate this and two more surgeries within the next year-one more similar surgery on his hands and feet and one to reconstruct his skull in order to allow his brain to grow and develop. There will be more surgeries in his future, but hopefully not for years to come.

There are no words to express our gratitude to all who have prayed for us, supported us, helped us and loved us during this time. Please continue to pray for us that the Lord would strengthen and prepare us for next week, that He would give Joel grace and comfort as he goes through a very painful experience, and that He would use these experiences to bring glory to Himself. Also pray as we wait to hear back about the results of a recent sleep study done on Joel to determine whether or not he has Sleep Apnea.

We praise God that Joel has been developing and stayed very healthy. Some milestones he has mastered in these past months are: rolling over, sitting by himself, shaking his head no, grabbing and holding toys very well, eating almost anything, and saying ga-ga and da-da. He is a very easy and content boy and unlike any baby we have ever met. We feel privileged and thankful to have him in our family and believe with all of our hearts that God has a purpose for his life. Levi: Joined, attached. Joel: Yahweh is God, He that wills or commands. We have no doubt that God knew before creation that Joel would be born into our family and how it would change our lives.

Praise be to our God and Father and Lord Jesus Christ! Blessed be His name!

Sitting like a big boy

Michayla loves her "Joele"

Snuggles with Abuela before the sleep study

Ready for sleep study! 

After a few tears, he did okay.

A highlight this summer-meeting the Norman family. Nathan, who also has Apert's Syndrome,
is a year of ahead of Joel and doing great! What an encouragement to know them!