Almost to the Last Surgery of Phase 1

   Although we haven't gotten used to the surgeries Joel has had to endure and are definitely not excited to face this next one, we are relieved to be almost over our first set of them. My heart always stops for a second when we finally have a date on the calendar for a surgery, which we do now-April 6th. This will be the last syndactyly release for now, which means Joel will have his remaining fused toes and fingers separated. All but one, that is. His little pinkie, which many of you have prayed for over the last six months, will have to wait to be separated again for now. When he is bigger, and it can be done a little more safely, we will try again. It would clearly not be safe to try to separate it and his middle finger from his ring finger all at the same time. I can't deny that I feel disappointed in some ways that Joel will not have 10 free fingers this year as originally planned and thought, but this is clearly what is best for him at this point, and we are trusting God's overall plan for this pinkie to bring Him glory in whatever way that might be and still asking for a complete restoration.

   On a very encouraging note, we are amazed at how Joel is overcoming and developing despite his obstacles! When we first came to the United States from Honduras, Joel would not use his hands at all. We now believe that the very hot and humid climate in La Ceiba was causing his fingers to swell and be even more uncomfortable, and he struggled continually with ingrown fingernails and sensitivity. We were excited upon our arrival to the States to see this change considerably and see him start to hold and grab toys and objects and no longer cry out in pain when his fingers were bumped. As you can imagine, he is having to catch up in developing his upper and lower body muscles after not wanting to use his hands his first six months of life. We still have not looked for a professional therapist and may or may not need to after surgery, but for now are using many common exercises at home to help him develop his muscles and push him to overcome his fears of putting pressure on his fingers and toes. His biggest struggle has been weight-bearing. We are overcoming a huge obstacle this month as he is finally standing and bearing his weight on his feet for longer periods of time after pushing him and pushing him! He is finally pushing up on his arms more and more as well, and we can see him slowly gaining more confidence and more strength.

   The interesting thing is that Joel has found ways to get around his obstacles. He is fully mobile and scoots around very quickly all around the house on his bottom exploring! He opens cabinets, gets to my decorations, plays in the curtains and has been caught eating the dirt from my plant on several occasions. He is very smart and doing many other normal things for his age. Things such as stacking blocks, drinking and eating by himself, leafing through books and "quacking" when he sees the duck, signing and saying some words, understanding things in Spanish and English, listening and responding to some basic commands, dancing and humming to songs, clapping, putting things in and out of boxes, trying to use forks and spoons in the right way, trying to fit puzzled shapes into their spots, trying to use crayons and markers to color in the right way, kissing the baby dolls, helping to dress himself, and wanting to try to do many things by himself without our help just like any baby his age! 

   This baby is truly special! The laughter and joy God has brought into our home through him couldn't be described with justice! As I sit here writing this post, I can hear him across the room blowing me kisses, laughing, and babbling to himself. He is sweet, silly, content, laid-back, smiley and just amazing! I can say without thinking twice (and I know that my husband would say the same) that if I could take back having him born into our family, I never would. Yes, outwardly he is and will be different, but I am so thankful for a God who looks at the heart as it says in 1 Samuel 16:7b when the Lord chose David as the next king of Israel: "The Lord does not look at the things that people look at. People look at the outward appearance, but the Lord looks at the heart." And 1 Corinthinans 1:26-31 "Brothers and sisters, think of what you were when you were called. Not many of you were wise by human standards; not many were influential; not many were of noble birth. But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. God chose the lowly things of this world and the despised things-and the things that are not-to nullify the things that are, so that no one may boast before him. It is because of him that you are in Christ Jesus, who has become for us wisdom from God-that is, our righteousness, holiness, and redemption. Therefore, as it is written: 'Let the one who boasts boast in the Lord.'" And we do! We boast in His goodness and mercy towards us and Joel.We do not deserve the grace He has and continues to give us! Jesus has become our wisdom from God, and in this situation especially we want His perspective and His heart to permeate our lives. We don't want to become discouraged by the outward things going on around us, but to maintain our eyes on the author and perfecter of our faith, Jesus Christ, and run our race well knowing that one day we will be forever in His presence.

   As we come upon this last surgery for now (or at least, that we hope!), please pray that our focus would remain on Him, even when it's hard. Pray that God would be glorified in our and Joel's lives.

Standing!

One of Joel's favorite people, Tia Hailey

Special moments with cousin Ellie

Thankful for a wonderful sister to motivate Joel!

Specific Prayer Requests for:

*Upcoming Surgery on April 6th-Protection, peace and grace 

*The future of Joel's left-hand little pinkie and that God be glorified

*Progress in gross motor skills such as pulling up, standing, cruising and walking

Dreams

 I have had a few conversations about dreams recently. Dreams about the future, dreams about our children, dreams about life. A little thoughtful about everything the other day, I asked Marvin "What are the dreams you have for our children's future?" To which he responded "That they love and serve the Lord with their whole heart!" I continued to prod though and ask if he had other dreams-dreams of what they would do and be. He started to express to me exactly what I myself had on my own heart. He started to say that he didn't want to put in a box what God had in store for their futures-he wanted to allow them the freedom to follow His calling on each of their lives, whatever that might be and however that might look.

   I realized something important that day. Not that I didn't know it before, but I was reminded of how powerful expectations and dreams can be. They can devastate, empower, pressure, or free. We live in this culture where following your dreams and following your heart is so valued. But what about when our dreams and heart don't line up to God's dreams and God's heart? What about when our dreams become self-centered instead of God-centered? And what about when our dreams and heart don't line up to others' dreams and hearts for us? There is often this pressure to "be someone" and "do something" great with your life, which is all really good, but can become a great burden when your calling doesn't line up to others' expectations. Dreams by no means are bad, but I think I have come to see that many of the dreams that have come to exist on the face of this earth do not come from God.

    I have to look at Joel's life in this light. To be completely honest, when he was born and diagnosed with Apert Syndrome, we were not devastated as many would think. Yes there were tears, surprise, confusion and grief over the medical procedures he would have to endure and the challenges we would face as a family. To us though, Apert Syndrome is a diagnosis, not a definition of who Joel is. Our dreams for Joel are still not crushed. You see-we have never dreamed dreams of great careers and worldly success (not that either or those things are bad in and of themselves) for any of our children. You see-the main dreams of our hearts for them are not based on their earthly happiness or our earthly happiness at all. We believe they were created for a much greater purpose. We believe they were created with an eternal purpose. We don't want them to be citizens of this world, but of heaven! Our dream is to see them glorify God and enjoy Him forevermore! And if this dream is made reality, we know without a shadow of a doubt that one day their bodies will be completely healed and whole, and they will live in a perfect world and be happy and live to the fullest forevermore. We don't want to lose sight of this dream as we raise them to follow any of the dreams of the world around us, but we realize there is a great spiritual battle and great pressure around. The pressure is to focus on this world and this life. The pressure is to make happiness here and now the goal. The pressure is to be someone important here and now. My prayer is that the Lord will guard us from falling into the temptation of following these goals. If we do fall into that temptation, the fact that Joel will never be completely "normal" according to people around us will really bother us. The fact that he will not fit into the box of success and popularity here in this world will tug at our hearts. We will focus and question way too much the whys of his situation and the many things we really don't and can't understand. May this not be the case.

   As I write all of this, I guard in my heart different things that I do feel I sense about Joel's future here on earth. I anticipate and even have great faith about his life here, but I pray my ultimate focus and ultimate dream remain the dream of him one day going home to live eternally in the presence of our loving Father-the place where Joel will be fully accepted by all around and will no longer have any painful sign of the brokenness of this fallen world. I pray that he and us store our treasures up in heaven where moth and rust won't destroy, and thieves can't break in to steal. My hope is that we can exemplify and guide him to live his life preparing for that moment and involved in God's kingdom coming here to earth in the meantime.

   You see, the truth is that we are all just as broken as Joel. We have all been entangled in different and unique messes that have left their marks on us in one way or another. Our bodies are wearing down, our struggle with sin is real, and the pain, suffering and evilness we see around causes our hearts to long for justice more and more-the cry of eternity on our hearts. This place just doesn't feel like home, and there is only one who can save us and lead us home to the place we will be whole-Jesus Christ. This is the dream worth living for here on this earth and the only dream worth dying for.

   No, my friends, my dream for Joel's life has not been crushed. It remains as strong as ever.

 
 

And It's Over

   It's hard for us to believe that the dreaded skull surgery already happened less than two weeks ago! It really does seem like a far-off dream at this point. The main after-taste we are left with is the exhaustion of dealing with a baby who is re-learning how to sleep at night, But besides that, Joel is completely back to himself! He is busy playing, developing, laughing, smiling, talking, eating, and all the other things that he did before surgery! We are so thankful for how quickly he has recovered and for his joyful spirit in our home!

   I have been struck anew these past weeks with how quick this life passes by. Just the week before Joel's surgery, a world of friends and family stood shocked by the news of the passing away of our dear friend, Sarah Lantz, into the arms of Jesus. She lived a full life, having studied to be a surgeon and moved to Zambia as a medical missionary, yet was taken away by cancer at as young as 34 in a very swift battle that lasted less than 6 months. God touched and is touching countless life through her life, love and faith. To see her funeral and the inspiring stories told of her life, visit this link: Sarah Lantz Funeral. Or to read a short post of her life, visit:What I Want Most is to be Faithful.  It will challenge and inspire you! We have been so sad that Sarah is no longer here, yet overjoyed that she is fully healed and with her Savior and longing more than ever to live this short life in a manner that is worthy of our calling! 

   We have been reading the book of Genesis as a family, and the last few days have been in the story of Joseph. Wow! Talk about being faithful in the face of hardship-thrown into a pit and sold into slavery by his brothers, sexually harassed and falsely accused to the point of being thrown in jail, forgotten by the cup-bearer, not to mention years of no communication with his people or family! And talk about seeing the harvest of that faithfulness in such a great way! 

   

   And a passage from the New Testament that has been a huge encouragement to me this past year is 2 Corinthians 4:16-18: "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal." 

   So, to sum up all of these thoughts, here we are after Round 3 of surgery since Joel was born, and once again, it's over and life continues. I am reminded that just as these trials come and go, this life will soon be over, and an unseen reality awaits that is more glorious and real than anything we see right now or can even imagine. I pray as we run this race and face the uncomfortable situations that come along with life in a fallen world, we keep our eyes fixed on Jesus, the author and perfecter of our faith and run with faithfulness and purpose both in trial and in daily life.  

   We are forever grateful for the support and prayers which have sustained us throughout these trials! We are so thankful that both of my parents and Hailey could be here with us for the surgery, as well as Marvin's family here in Dallas and Pastor Caleb. We are blessed and know we do not face this alone! 

Busy, busy, busy

Praises: 

*Joel is doing great!

*Prayers for patience and grace for Joel throughout his surgery experience were felt! We were amazed by his calmness and a great peace our family felt throughout everything. 

*We are so thankful for God's provision in allowing Joel to undergo this surgery which was done with the purpose of enlarging his skull to allow for proper brain development in the years to come.

Please continue praying for:

*Rest for our family

*Joel's upcoming surgery within the next few months to finish separating his fingers and toes.

The Picture Story

Day before surgery-on the way to pre-ops!

Little break between pre-op visits

Right out of surgery Day 1

Night after surgery-swelling getting worst 

Peak of the swelling Day 2

On our way home Day 3

Fully awake with eyes still swollen shut Day 4

Special times with his sweet sister

That night he was able to open his eyes slightly

Showing an appetite for solids finally Day 5

Acting much more like himself

Day 6

Day 7

Day 8

Day 9

Day 10

Day 11 (This afternoon)

Can't See!

   Although not seeing has been probably the most frustrating part of surgery for Joel, sweet moments like this have warmed our hearts!

Home Again

   What a relief to bring sweet Joel home! As wonderfully kind and compassionate the staff at Medical City Children's was to us (which we are so grateful for), there is still just no place like home! How happy we are to have the worst over with and be on the road to recovery!

   We are so thankful for so much heavenly grace extended to us throughout this experience. Joel did so well throughout the hospital stay. We really are amazed by what a trooper he is! His biggest comfort has been Mommy's milk and his favorite music-Hillsong and lullabies to sleep to and his favorite Spanish cartoon Biper when awake. His eyes are currently swollen shut and could continue shut for a few days more from what we've heard, so please continue praying for him for patience until he can see again.

   We are so grateful to have this special boy in our lives-as we have cuddled him and talked to him, comforted him and so clearly felt God's presence and grace in his life, we have ourselves been comforted. We hate the surgeries and pain, but I once more remember that these miserable circumstances are temporary and so small in comparison to the great glory we will one day see and have even already started to glimpse. I remember once more that everyone around needs the Savior just as bad as my baby, and I am blessed by the gift of his precious life. Just a smile from this boy makes our day! I can't exactly know how God will use Joel, but I know none of this has taken Him by surprise. Levi-"joined, attached ". Joel-" Yahweh is Lord". We continue to believe and see God's goodness and faithfulness to care for us, and pray that our lives will somehow point to eternity and bring Him glory.

   Again, to all who have prayed for us, supported us and loved us, we are so thankful and honored to have you share our journey and burdens with us. May the Lord bless each and every one of you greatly!

The peak of Joel's swelling

On his way home

Post-op Pictures

We are so thankful to be on the other side of surgery and on the road to recovery! As the pictures tell, Joel is experiencing a lot of swelling which we anticipate to gradually get worst and worst and peak at the 36-48 hour point. Besides surgery of course, this afternoon has been pretty uneventful with him. As he continues to swell and wakes up more tomorrow as he is weaned off some meds, our life might become more crazy again. Please pray for strength and peace and a good night of sleep!

We praise God for His goodness and mercy in providing this surgery for our son and protecting him throughout it. We praise Him for great MRI results that showed that the back of his brain continues to look good, no signs of a chiari formation (brain hernia) and no present hydrocephalus. 

Thanks to all for the prayers and support!