Another Stage and Starting Therapy!

   The last two to three months have marked a new stage for us! In one sense, we feel like we can finally breathe after a year of anticipating surgeries, living on little sleep, and transitioning to life in the United States. We can finally pour more into the relationships around us and be more involved in our church community and people around us. On the other hand, we feel like we are still in transition. Marvin continues in his process of figuring out how to make a living in the United States. I have started a small business as an independent beauty consultant and, of course, continue my full-time job as a mom of two small children. On top of that, Joel is starting therapy for the first time! We are thankful to still have Hailey living with us though-she is a tremendous support and help at the Lopez house! We miss the slower pace of life in Honduras, but we know God is teaching us, shaping us, and changing us through this process, and we know this is just another stage, so we focus our eyes on Him, the author and perfecter of our faith, and as long as the pillar of cloud that led us to Dallas remains here, we will remain here also. I am learning to be more disciplined and wise with my time which does not come naturally for me! Pray that God would daily open our spiritual eyes so that we will be able to take advantage of the many opportunities in our daily walk to invest eternally and not get caught up in the busyness of life!

   I am happy we waited until now to start therapy with Joel! I feel that that extra thing on our plate this past year wouldn't have been wise, and his specialist didn't think he needed it and keeps reassuring us that he will eventually catch up. Now though, at 20 months old, as we continue to see very little motivation in him to progress with his gross motor skills, I feel more and more that I need direction and accountability to push and help him to start standing and walking, and with no more planned surgeries around the corner, this seems to be the right time! So far, we have had two initial evaluations! It has been so interesting to see how Joel has scored on the tests. He is very behind in his gross motor skills (he scored at 7 months!), which we already knew, but we were surprised when Joel scored at 25 months for his fine motor skills! It is amazing to see what he can do with his little fingers! Joel has a really good attention span and really concentrates on the tasks that he wants to accomplish-things like putting long lines of train tracks together or unscrewing all the little parts of a pen to take it apart. He scored at 30 months in the personal-social area, and 24 in the cognitive area! He really is such a smart little boy! It has been delightful to see him understanding and communicating so much! The main focus of the therapy will be to help him tolerate sensory play activities to decrease the sensitivity in his hands and feet. He will also be receiving some occupational therapy to encourage him with activities such as stringing beads and encouraging him to use his left hand (the one that has been through trauma!) like he uses his right hand. All the therapy will be happening at our home, and we are so grateful for this direction. Please pray that Joel will start standing and cruising soon and that God will give us wisdom to make the best decisions for him!
 
   Also, please pray for Joel as he goes through another routine sleep study on August 16th to be screened for sleep apnea once more! The night in the hospital will be very unpleasant for our little man! It is so hard to make him go through these things when he doesn't understand, but we know it is for his good!

At the One Year Mark!

   I never cease to be amazed at how fast this life is passing by! We have reached the one year mark of having left Honduras to move to the United States! I have been reflecting on this year, the many things it brought, and the faithfulness of the Lord which has upheld us through it all.

   One year ago yesterday, our family in Honduras was driving us to the airport in San Pedro Sula. We had sold most of our belongings in a very short time frame of two to three weeks, we had made arrangements to meet with the doctor we felt led to choose for Joel, and we had said goodbye to our family, church, and friends. There were so many unknowns! We didn't know what would happen to Joel, we didn't know where we would live, we didn't know what kind of a job Marvin would be able to find in the United States or how we would continue to pay our mortgage on our house in Honduras. We didn't know where we would go to church, we didn't know who would become our close friends, and basically we just didn't know what life would be like from then on.

   I had dreamed of being able to visit the United States with my husband since the day we were married. I had dreamed of the day I would show him where I had grown up, where my parents and grandparents lived, who my in-laws were and the things I love and cherish from my culture. But this isn't how I had pictured it. We had been married five years, and after tourist visas being denied, we felt the Lord leading us to to apply for permanent US residency for Marvin-the only option left for him to be able to come to the United States. It wasn't what we wanted. We only wanted to visit, and we didn't understand why at the time, but we knew it was the right thing, and we started the long and hard process of paperwork, expenses, traveling, and waiting. We started to plan ahead and decided that when Marvin's residency was approved, we would come to the States (to my parents' home in Ohio) first on a trip before moving and would scout things out and plan where we could live, see job options, and slowly phase on over. Those weren't God's plans though.

   When Joel was born, some things slowly started to make sense. Marvin was still not at all close to obtaining residency at that time, and Apert Syndrome came as a huge shock to us! We were so blessed to be surrounded by the loving community at Loma de Luz, the mission hospital my dad served at in Honduras and the community we grew up with. They were so compassionate and key in directing us in those first months, as well as speaking words of life to us and over us. I really don't know what things would have been like for us without them, especially when Joel had to undergo an unexpected surgery for Pyloric Stenosis at six weeks old!

   We weren't sure if Marvin would be able to travel in time for Joel to receive the other critical surgeries he needed that year (and we knew that we were not supposed to split up as a family!), and the Mckenneys and Dr. Judy at Loma de Luz started proactively looking for medical specialists from the States to travel down to help us. We started fervently praying and seeking the Lord to show us His will for Joel's medical care. Was He going to move mountains and open the door for us to travel to the States, or was He going to move mountains by bringing people to us that could help? We were amazed when my sister, Natalie, contacted us to tell us that a man from their church knew a woman who worked in Congress who could help to get Marvin's paperwork expedited! It was yet another process, but we were amazed to see Marvin's papers move from step to step quickly as she pushed people in each department to move on our behalf.

   Quickly after Joel was born, we had learned that the best place (humanly speaking) for a kid with Apert Syndrome to receive treatment was Dallas. In our minds, where we would bring Joel if we were to come to the States was never a question. Apart from this incredible medical center, Marvin's younger brother in jail who lives four hours from Dallas had been pressing on our hearts. Marvin had extended family in Dallas as well. We knew that if God opened the doors, Dallas was the place. When the doors did open, we still hesitated though. What about the doors that were also being opened through the Loma de Luz community? A neuro-surgeon had already agreed to travel to Honduras just to operate on Joel's skull, but after talking to him, he encouraged us to come to the States and receive treatment in Dallas if we could. So that was our confirmation.

   Our church family at Iglesia de Dios Hermandad Cristiana in La Ceiba sent us off with love, gifts, prayers and encouragement. We mourned leaving our dear friends there, and I started to pray that God would provide godly men for Marvin to have as friends here in the US. Marvin's family also sent us off with a big going-away party where everyone sported white t-shirts with our family's picture on it which said "We love you Lopez=Faull family" in Spanish. Marvin gave his brother the keys to our house and to his many cars he had at his auto lot there, hoping that even in our absence, they could sell. We would miss living down the road from Marvin's family. A phase of our lives was over, and within a few weeks we were here!

   Today a year ago, we were waking up at Natalie and Joshs' (my sister and brother-in-law) house in Georgia! My mother-in-law had traveled with us to help us with the kids and luggage we were juggling. A dear friend from Georgia had given us her Delta buddy passes to help us afford the trip, and the following Sunday, Grace Community Church embraced us and welcomed us into their midst. They had been praying for us and went on to give generously to us two months later when we officially moved to Dallas. Natalie and Josh were sent by them, pulling a U-haul, to deliver to us much-needed furniture and house goods to help us set up home. What compelled them to do this? We were not even members of their church! The amazing love of Christ alone.

   I could tell story after story about the rest of the year. I could tell stories about our time that summer in Ohio, about Evangel Baptist Church in Ohio reaching out to us and ministering to us, about my parents, sisters and their husbands, and extended family loving us and supporting us. I could tell about how my sister, Hailey, decided to move in with us and has laid her life down for us this year and supports and challenges me daily. I could tell stories about arriving to Dallas, and Marvin's aunt, Tia Maria, and her husband letting us live with them while we found an apartment, hosting us with such love and dedication. I could tell stories of Marvin's relatives reaching out to us and his cousin, Karen, driving us around for days while we got set up, helping us with practical things like getting a bank account, social security cards and going to the hospital. I could tell stories of visiting my brother-in-law in jail and developing a deep relationship with him that has touched us deeply. Or I could tell stories of finding a new church to become a part of, Cristo Rey, where we meet with both Hispanics and Americans to worship and where God has answered my prayers in providing a godly friend for Marvin. I could tell stories of reconnecting with my extended family here in Texas and how blessed I feel to be getting to know them better after so many years of living far away. I could tell the stories of the grief of Joel's surgeries, but also of the joy in having a son like him and seeing him learn and develop this past year. I could tell stories of Marvin's struggles to make a living here in the United States, yet all along seeing God's provision through it all. I could tell stories of random people sending us checks in the mail. I could tell stories of my brother-in-law back in Honduras selling off the cars at Marvin's auto lot for us and supporting us more than he'll ever know. I could tell stories of the many people who have visited us in our home, the many rich moments we have shared, the tears and laughter, the pain and the joy. And even with all those stories, I know that many more stories are falling through the cracks and many acts of kindness will be forgotten, and I pray God will reward each person richly for how they have blessed us.

   With the many stories, there is one story that outshines them all. It is the story of God's grace and mercy over our lives! Even this morning, I was reminded about how I, like the israelites, struggle to believe and trust Him even when He has proved Himself so faithful in my life! I am so prone to sin! Yet He, in His great grace and mercy stooped down to rescue me and make me His friend, His daughter, and His bride. He has given me a promise that is unconditional-that He will be faithful to me and never leave me, that He will save me and change me and that one day I will be with Him forever in eternal glory.

   I feel overwhelmed this morning by His faithfulness and mercy this year. I have felt teary and deeply moved as I've pondered everything that has happened. I still don't know how to love like He does, how to live like He did when He came to earth, how to really lay down my life like I should, but one thing I do know: He has His mighty hand on my life, and I don't deserve this amazing grace. Looking back on the circumstances of this past year, I know that we should be in debt. We should be devastated. Our lives should be flipped upside down. But that is not our case! His joy has been our strength and His loving-kindness has touched us so deeply. In Him, we are so blessed and so rich!

   All I can do is testify, and my prayer is that I won't forget what He has done as we start another year in the United States.

 
   

Casts Off!

   What a relief to get Joel's casts off on Wednesday! The longer the casts were on, the harder things got! Joel's sleep was horrible, and his demands seemed on the rise throughout the day. I also realized I still had some fear to deal with after our first cast experience. There were many moments throughout the night when Marvin and I were once again attending to Joel's needs when we asked each other if everything was truly all right (which thankfully it was). All that to say, I am so thankful that we only had to wait 2 weeks this time, and humbly remembering that God is still sovereign over Joel's hands and loves him more than I.

   We celebrated and clapped throughout the week at home when we talked about the casts coming off, and Hailey and Michayla did not want to miss out this time on the moment of reveal. Michayla was delighted and excited at the thought of her little brother having fingers! So the two of them, Joel, and I readied ourselves on Wednesday morning, and after a quick celebration/lunch stop at Marvin's work, we headed to Medical City to Dr. Fearon's office. 

   Of course, Joel hates these kind of appointments. Anyone messing with his hands and/or feet is never a happy thing for him. So, after crying and lots of "Biper" videos, we said good bye to Dr. Fearon and his sweet staff. Hailey and Michayla did great during the office visit! Hailey had to hold back tears and fear when the last gauze came off, and Michayla sat politely in her lap talking to Dr. Fearon's nurse, Cindy, while trying to remind Joel that the casts were finally going to be gone. We proceeded to the hospital play area to cheer up Joel's spirits and celebrate some more. He has been very excited to show off his new fingers. 

   We are on to dressing changes 2-3 times a day at home now. Joel, of course, very much dislikes the changes, but they are necessary to his healing. His fingers and toes are still sore and sensitive when bumped. He is not holding or picking things up yet, but he is slowly touching more and more things and enjoying very much his mobility again. Giving him real baths again has been really good-the sponge baths just weren't cutting it, and he was sweating and sweating with the casts on (which, of course, resulted in a very stinky boy)! Also, we are thankful that his sleep is slowly getting better!

   We are tired and (the kids and I), at moments, cranky after the past few weeks! I have been reminded the last few days of one of the purposes in all of this-God using these circumstances to work on my character flaws. As I have at moments complained of the exhaustion, I am humbled to see how much farther I have to go in laying down my life with Christ. His ultimate example of humble servant-hood as the King of kings and Lord and lords reminds me that he laid down his life and much more than I could ever lay down. I am humbled when I see the two precious children He has entrusted into my care for such a time as this and know that teaching them to have the right attitudes amidst the difficulties of life and positive perspectives starts with the example I give them in my own attitudes and perspective. I am thankful that His mercies are new every morning and that I can trust that He is not finished with me or them yet!

   We again are thankful for those who have continued to uphold us in prayer and continue to encourage our spirits and help us in a variety of ways. As we look at the end of this first surgical stage and towards the future, we anticipate a good break from Dr. Fearon's office! He doesn't want to see Joel until March of 2017 as long as all is well! We will continue to monitor Joel this year by having another routine sleep study and MRI of his brain done this summer, as well as see a few other specialists to keep taking care of Joel's eyes and ears, among other possible things. We anticipate the break from surgery to last for a good many years though and are so thankful for the excellent health Joel has enjoyed thus far! Praise the Lord!

   "May the glory of the LORD continue forever! The LORD takes pleasure in all he has made!" Psalm 104:31

Michayla and Joel ready to go to the hospital!

A little celebration stop for lunch at Marvin's work!

Got a little tired on the way...

Play area celebration at Hospital! Casts are off!

On to dressing changes at home!

Showing Abuela his new hands

Getting pictures of Joel's hands has been VERY hard! He is not cooperative!

1 Week Post-Surgery

   It has been a busy and exciting week post-surgery! While we were at the hospital, a very dear family came to town for the week-the O'neil family! My sister Natalie, brother-in-law Josh, and their four children (plus one on the way) drove from Georgia to help Hailey take care of us this past week and cheer up Joel, which made coming home from the hospital even more exciting for him and for us! Another big highlight of coming home from the hospital was seeing Joel's face light up in a huge grin when he saw Michayla! I am so thankful that these sweet siblings have each other and for the love they share!

   This boy has been playing, sight-seeing, walking around outside, and eating good foods this week! I am so thankful to be able to report that Joel seemed back to his normal self quicker than with any previous surgery so far! Within two days, he was eating normal meals again and back to a regular nap schedule. And within a few minutes of being home, he wanted to get down on the floor and play with his toys and cousins. Joel and I ended up accompanying everyone else on many outings they had, including a trolley ride and adventure downtown Dallas to the Dallas Museum of Arts, church on Sunday, evening park trip and fun at the Children's Aquarium of Dallas, We are amazed at the patience and joy God has blessed this little guy with!

   In the midst of the fun, there has also been frustration and exhaustion as well as we expected. We still see these fingers/toes surgeries as harder and more uncomfortable for Joel than the skull surgery, although we really dislike both! He is just now at 8 days post-surgery pretty much weaned off of all pain medications, with a dose of Motrin here or there as needed. The limitations of being in casts are not easy for Joel! We are his legs, walking him around to the many places he wants to go, and we are his hands, feeding, reaching and holding things for him. His waking hours are full of many desires and demands! He and we will be so happy when he has his legs back to scoot around by himself, and his hands back to hold and grab things by himself! He is much heavier than he was 7 plus months ago! We joke that he thinks we are his horses-a little kick of his legs and thrust of his body lets us know which direction he wants us to take him. His sleeping hours aren't quite as restful as normal either-sleeping in casts for him is still not the easiest thing. He wakes up often at night and is up for the day earlier than normal. We are thankful that the casts will only stay on two weeks this time! A week from today, he will be cast-free! Having one hand cast-free, wrapped up in Coban instead, has been a help. He can bend that one arm and has very obviously favored his left hand this past week and used it as much as he can to accomplish what he wants. His thumb (although swollen and unable to bend right now) and tips of his fingers are peaking out of the bandage allowing him to feel his hair and mouth and push buttons on toys. All things considered, he has been very good-natured and happy despite the circumstances! 

   What a whirlwind of a year! We are so relieved and excited to be on the other side of the first set of surgeries Joel needed to go through! Hopefully Joel will have a good break for years with no surgeries. We are so thankful for our families, friends, and brothers and sisters in Christ who have loved us and supported us throughout this time. It has been a year of transitions and starting over once more in many ways. We have no doubt that this is where the Lord has wanted us, using these circumstances to work on our characters and increase our faith. I hope we have learned something this year! We feel like we are in a new stage now and looking ahead to what the next step is for us as a family now that this first goal has been reached. Please keep us in your prayers as we recuperate from so much activity and seek the Lord as to where He wants us and what He wants us to be doing. 

 

On the way home from the hospital

So excited to be home and arrive to his sweet sister, cousins, aunts and uncle

Trolley ride downtown Dallas 

Cousins on the trolley

Museum of Arts Dallas, Day 4 after surgery

Playing outside with cousins, Day 5 after surgery

Lots of children, lots of fun!

Children's Aquarium in Dallas, Day 6 after surgery

Boy cousins

Nadia, Joel's oldest cousin (on my side of the family) is such a sweetheart to him!

I love my boy!

Special times with Aunt Natalie

Kisses for Abuela, 1 week after surgery

On the Road to Recovery Once More

   Here we are once more spending the night at the hospital, on the road to recovery. We thank God that Joel's surgery went well with no complications and that both Marvin and I can be here with him to hold and comfort him during this difficult time.

   For us, these fingers and toes surgeries have been harder than the cranial vault expansion surgery. The big foam pads wrapped around Joel's arms and legs make it hard to move him around and the pain seems much worst for him. He has been pretty calm most of the afternoon though, all things considered, with a few crying episodes here and there.

   The plan is to head home tomorrow morning after Dr. Fearon checks him once more. We will be very happy to be in the comfort of home, but are grateful for the team of people here at Medical City who are always so kind to us.

   Thank you for your prayers for our family! Please keep praying for us!

Before surgery

Right out of surgery

               

Surgery Tomorrow Morning

   Please remember our sweet boy tomorrow morning as he once more undergoes surgery to finish separating his fused-together toes and fingers (all but his left pinkie that is).

   We anticipate one night in the  hospital and 2 weeks with 3 casts. Dr. Fearon is going to leave one hand cast-free which he has done successfully with a few patients already. Since his other hand will be in a cast, we are confident he won't be able to mess with the free hand. After the casts come off, we will continue changing dressings for a time.

   We spent a very pain-free afternoon at the hospital today in pre-op preparation. I am so thankful for the kindness and efficiency of the staff at Medical City Children's and Dr. Fearon and his office. My spirits are high today and my heart full of peace. I am thankful to be drawing near to the end of this first surgery stage and excited for Joel to have free fingers.

   Please pray specifically for grace and peace for Joel tomorrow when he once more wakes up to a very unpleasant surprise. Pray for wisdom for Dr. Fearon as he operates and protection for Joel during and after surgery.

   Thanks again to the many who have supported us and upheld us in prayer during this time. We feel the love and are so grateful. Below are some pictures of Joel playing at the hospital facility this afternoon.

Aunt Hailey playing at the "Gusano" with her "sobrinos"

How to Treat My Child with Special Needs

   I saw a quote today that stuck out to me that read: "If you want to know how to treat a child with special needs...look to their sibling, they will show you." It makes me smile within to think of Michayla scooting around on the floor with Joel, trying to do very silly dances to make him laugh, constantly trying to touch, kiss and pinch his hands and feet (which he is not always a fan of!), loving to be the big sister and "help" give him drinks and food, sometimes complaining when he starts making a mess and pulling out all of the toys she just put away, wanting to play with the toy he is playing with, yet so very often sharing the ones she is playing with to make him smile because she loves him. Really, she just treats him like any girl would treat her little brother! He is just Joel to her! 

   That's how we should treat all children with special needs-as unique individuals! I feel blessed that the family and friends surrounding us and Joel are loving and accepting of him and so many of you have really come to love and know Joel for who he is, yet every once in a while a comment or attitude delivered by someone who doesn't know him well reminds me how easy it is to put humans in categories, instead of taking the time to really get to know who they are as people. When someone compares Joel to people who he is not, acts like they know what life is like for him and us (we have found a lot of people think it's a lot worst and out of the norm that it really is!) when they might not, thinks that I am depressed and anxious because he is my child when that couldn't be farther from the truth, and feels sorry for him or us in a way that puts our struggles in life in a very different category from their own, it really isn't helpful or encouraging to us or anyone else out there.

   A conversation with Hailey today inspired this post. We were sharing some of the misconceptions people have had about Joel, us, her living with us (poor Hailey apparently is a 24/7 baby-sitter during this hard, miserable time of our lives, hehe!),  and our life in Dallas, and although we really didn't feel offended by the specific situations since we know they weren't intentional, we were struck by how easy it is to miss out on the opportunity to get to know someone because you have already put them in a category. You think you have it figured out, but you couldn't be farther from the truth. I was reminded of a conversation I had with a couple the other day. I was trying to connect and identify with them living abroad and bringing up things I had gone through as a missionary kid when we lived abroad that I thought would be similar to their journey, but as we talked and later as I processed the conversation, I realized that maybe instead of assuming anything I didn't know for sure from the get-go, I could have learned more about their life and heart if I had just asked and listened instead of thinking I already kind of understood. 

   If I could give a pointer for how to treat Joel, I would want you to treat him as a unique individual. I would want you to get to know who he is before you put him in a category or compare him to other situations you've seen out there. Right now he has no clue, but as he gets older, he will know and he will feel. I know we all fail at this, and if an ignorant comment made with no bad intention comes our way, I will try to be gracious, yet I think it's good to be made aware of how unique and special kids like him are to their families and to the world. To us, Joel is just Joel. We don't spend most of our time thinking about his syndrome-we just live life with and utterly enjoy him! And he is probably very different and a lot smarter than many out there think. Please don't feel sorry for him or us or think we live a miserable life because of Joel! If you have read any of my blog posts, you probably already know that our home is full of more laughter, more joy, more depth than ever before!