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! 

Preparing for Round 2

We are so thankful for the oasis we finally reached after our difficult last trial. It has been a wonderful last few months with Joel. We have seen him continue to develop and celebrated his first birthday, as well as enjoyed some wonderful trips, visits from loved ones here to Dallas, family time and day-to-day life with our sweet, soft, content boy and our precious Michayla. It has been a break from craziness, and as many have probably noticed, I have taken a break from blogging as well.

It is time to roll up our sleeves and start another trek up the mountain though. We are preparing for round two of surgery on January 19th. Although originally Joel would have had two hands/feet surgeries before his cranial vault expansion (skull surgery), due to his previous pinkie trauma, his doctor decided to wait and give him extra time to heal. So, here we are...preparing for the cranial vault expansion in less than two weeks! Our hearts are heavy and grieving yet another trauma for our sweet boy, but our hope is that this procedure will give his brain the room it needs to grow and develop.

Speaking of development...Joel has been discovering a lot of new tricks! He is clapping, raising his hands to "How big is the baby?", giving high fives and kisses, waving, saying "Hola" regularly among a few other attempts at words and lots of babbles, using a few signs, scooting and turning around on his bottom to reach things, picking up food and eating by himself (including beans and small things), enjoying books and imitating animal noises and dancing and humming to music to name some of things that come to my mind. It fills our hearts with joy to see him reach each and every milestone!

And as many are probably wondering, Joel still has a pinkie! Praise the Lord! He has some scarring, but a lot of healing has happened. We are so thankful for this answered prayer and continue to pray for healing and future motility for this precious finger. We have definitely seen an increase of use of his hands and ability to grab smaller objects since surgery and are excited to see how he takes off once all of his fingers and toes are separated.

We covet your prayers for our family as we face this next procedure. Specifically, we ask for prayer for grace, strength and great protection for Joel and a successful operation. Also, for Joel as he is currently being treated for anemia (in the past month and a half his hemoglobin count has thankfully gone from a very low 7.6 to 10.4, but still needs to be raised as much as possible by surgery). Lastly, pray for our family during this emotional time as we grieve the pain and unknowns with Joel and get used to his new looks (we are so in love with every part of our sweet boy, but we do know he will still be precious and adorable with his new physical changes).

We very much value and appreciate the love and support we have felt from so many of you!

  

    

Celebrating Joel's first precious year with extended family in Dallas!

Sweet birthday boy! Round two of celebrating with more family!

And of course celebrating with his best friend, Michayla!

                               

So blessed to celebrate Christmas with my whole family in Ohio!