8/06/2013

Our Son Roger and Uncomfortable Grace

  • As some of you may have noticed in my previous post, and the one before that, I mentioned that our family was--and is--enduring certain suffering related to one of our beloved children. The post below was written by my amazeballs husband, Jason, and this is officially our foray into the public realm with the diagnosis. By God's grace, as I can make space for it in my life, I feel like there is now freedom for me to write about this and how life simply is and so I hope for there to be a lot more of me around. Particularly, while I am on board with every word Jason wrote, I also have been experiencing so much. Just the gamut of anguish to "the peace that surpasses understanding" to numbness and escape to a glimmer of joy to anguish again and pretty much everything in between and beyond. So I know the words are bubbling up in my soul and I hope they boil over into written form! Beyond that, though, you can certainly be praying for us, that we would continually seek Jesus' face and that he would give us the grace to see what he is doing right here, right now, that is beautiful, sweet, priceless, uncomfortable, redemptive grace.

    By the way, though Jason wrote the post, the pictures and captions are my doing.

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    This past Sunday at church, we were blessed to have Dr. Paul Tripp as a guest preacher. Tripp is an author, teacher, and biblical counselor we very highly respect. He authored two of our very favorite books on Gospel-centered living and ministry (How People Change and Instruments in the Redeemer's Hands)*. He delivered a sermon based on Mark 6:45-52 that God used to rock us and to minister to us greatly.

    Here we find disciples in the midst of a storm on the Sea of Galilee, not because they sinned or made a foolish decision, but because they did exactly what Jesus told them to do ("Immediately he made his disciples get in the boat and go before him to the other side..."). Jesus reveals himself as Lord God Almighty in the midst of the storm that he ordained with a move that Pastor Mark often refers to as "waterskiing without a boat," and the disciples respond not with worship but fear ("but when they saw him walking on the sea they thought it was a ghost, and cried out, for they all saw him and were terrified"). Instead of kicking his faithless disciples off the boat and going to find new ones, Jesus responds with more grace, reassuring them not only of his earthly presence, but his holy presence - "take heart, it is I" is rightly translated not as Jesus saying "hey, it's your friend Jesus" but as the "I AM" of God's self-revelation to his people (Exodus 3:14). As he entered the boat and the storm died down, the disciples were rightly amazed. And yet, this is not a story of victorious faith but of persistent faithlessness - God's interpretation of their response through this scripture is that "they were utterly astounded, for they did not understand about the loaves, but their hearts were hardened." After everything the disciples had just witnessed, they had not only failed to apply earlier privileged lessons from their experience with Jesus, but had failed to put their faith in Jesus who had just revealed himself as God before their very eyes.


    This is Paul Tripp. His mustache is LEGIT.

    Tami and I often find stories like this, where Jesus is the clear hero and even those closest to him are proven utterly faithless, to be the most vivid illustrations of the Gospel in the scriptures. It is because of God's grace that we are able to experience a passage like this as one of grace and love, knowing that our justification and righteousness are in Christ alone (Romans 8:33-34), not because we have sought after God, but because in his relentless one-way love has sought after us (1 John 4:10). The cross is a comfort to us not because "nobody's perfect" and we made mistakes in the past, but because we're sinners who turn our backs on God and turn towards our idols in rebellion. Because Jesus took the rejection and separation from God meant for us on the cross (Mark 15:34), we will never see the back of God. In sum, we're not one bit better than the disciples in the boat, and any measure of faith and maturity we have is 100% due to a loving and gracious God who chose from the foundation of the world to save us and dwell within us (Ephesians 1:4).

    As powerful as the above is for us, it wasn't a new revelation. This is the Gospel we've experienced and have been being saved and challenged by for years, and it is the same Gospel we minister to others with. One idea that did challenge us anew was one introduced by Dr. Tripp as uncomfortable grace. What if the moment we cry out to God wondering when His grace will arrive is precisely when he is giving us the very grace we need to cling less tightly to self-reliance and the things of this broken world and cling more closely to him? What if our moments of greatest pain and suffering are exactly when God means to reveal himself most powerfully to us? We certainly see this in the above passage - Jesus supernaturally revealed himself as God to his disciples not when they were lounging around a campfire, but when they were being tossed about by the waves and terrified for their lives.

    The challenge could not have been more well-timed, as we're in the midst of a storm ourselves.

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    Our son Roger Nehemiah has been in our lives for almost two and half years. We love him so much that it hurts. We've been so richly blessed by him and thank God every day that he saw fit to entrust him to our care even when we had not planned on having children for several more years. Adjusting to a life of caring for a little one who is utterly dependent on us has had its frustrations, but we've been blessed to learn more about the heart of our Father through it all, and have not regretted for one second that God brought Roger into this world through us. We were overjoyed to have God bring us a daughter and Roger a sister in Juliet Elise a year and seven months later, and while life with two children utterly dependent on us has brought its own set of frustrations, we've come to learn even more of our Father's heart and have even more parental joy, more happiness than we could have ever imagined.


    Us beaming after finding out our beloved baby would be a son.


    First Daddy and Roger pic taken.


    One of the best days of my life. I waited my whole life to meet him.

    A few months ago our pediatrician expressed concern over Roger's lack of expressive communication and wanted us to have him evaluated for developmental delays. We took him to the Kindering Center in Bellevue, and after their evaluation they informed us that Roger showed some warning signs that could indicate autism. According to their recommendation, we not only began some in-home evaluation sessions with Kindering, but also had Roger officially evaluated at the Lakeside Center for Autism in Issaquah. The two-part autism screening took place on July 15 and 18, and we received the results this past Thursday (8/1).

    At this time, Roger has been diagnosed with autism spectrum disorder. At his young age, they don't use a strict numerical scale to gauge severity, but he is considered a moderate-to-severe case. The biggest areas of concern are expressive language and receptive language, where he registers far below what is expected for his age level (7th and 1st percentile, respectively). For visual reception (learning by observation), he does very well, especially considering his challenges in other areas. He faces some challenge with fine motor skills (things that require precision, like fitting shaped blocks into the correct holes), but we believe that's largely due to his challenges with communication - fine motor skills are very difficult to learn by observation alone. Overall, it seems as though he is significantly language impaired due to autism, but not intellectually impaired (he expresses and learns differently than other children his age, but he seems perfectly intelligent for his age).

    What this looks like in non-clinical terms: Roger is a very happy and engaging child who brings so much joy to our lives and, in general, to the lives of everyone he is around, but he doesn't talk, doesn't really try to socially engage with his peers, and struggles to receive verbal instructions. He also tends to lack awareness of his social surroundings when playing with toys (hence sometimes throwing things aimlessly without being aware that they might hit other people), and gets very protective of his personal space (especially with people not named Mom and Dad).

    As far as outlook for the forseeable future: thankfully, autism awareness and treatment has come pretty far since some 30 years ago when I was diagnosed on the autism spectrum and my parents were told I would never attend public school! We've been told what Roger's condition is and what his challenges are, but nobody has pronounced a sentence on his life or anything like that. Dr. Reilly, the psychiatrist at Lakeside who performed the evaluation, expressed to us that given the right care, children in Roger's condition nearly always respond and learn to communicate and socialize appropriately. Our next few years will be fairly intense with classes and therapy sessions happening 2-3 times a week, and there are some effects of autism that can be lifelong, but we've been given no indication that Roger won't eventually learn to navigate his challenges.


    Roger's big announcement on Valentine's Day 2012.

    Nonetheless, this is hitting Tami and I pretty hard emotionally. We can see Roger suffering and know that he'll continue to suffer as we try to care for him and find the right way to teach him the things he needs to know to navigate life in this world, and our heart breaks for him. We're very thankful that he has a little sister in Juliet to help love on him, but we're also concerned about her feeling equally loved by her parents when Roger will likely require a disproportionate amount of attention and care for a while - so far, Juliet is a very joyful and expressive girl, and she just adores her older brother!

    We're also very thankful that, in God's grace, we've been able to identify many blessings in this as well. We love our son so much, know that he was fearfully and wonderfully made by God just the way he is, and while we do wish he didn't have autism, we don't regret him coming into our lives for one second. He does fairly regularly frustrate us (he is a two-year-old boy after all), but also regularly wows us with his antics, his laugh, and his smile. 

    Reflecting on his antics for a moment: every morning, after he has eaten his banana and either Tami or I are feeding Juliet her morning bottle, Roger will go find and bring us the TiVo remote and immediately start jumping around the living room, expecting us to turn on Pandora or Spotify and play the music he loves so much. 

    Every evening when I get home from work, I get a Roger running at me and smiling, waiting to be lifted up into my arms. 


    Happy little Spiderman.

    Roger and Juliet share a bedroom with a window that faces out to the stairs leading up to our front door - Roger has recently learned to climb up and stand on the windowsill (relax, we've barred the window shut!), and sometimes when I'm taking the garbage out after his bedtime and walking back up the stairs, I see him sprawled against the window like Spider Man, smiling and looking intently at me (these moment of eye contact from him are so rare and such treasures!). 

    Every night as I put Roger and Juliet to bed, we sing (always "Jesus Loves Me", usually also another hymn like "In Christ Alone") and pray, and when asked to kiss his sister goodnight, Roger grabs Juliet's head, pulls it towards him, and kisses her head while making an exaggerated "mwah" sound. 

    Roger  has a little sister and other children his age who love him and look forward to seeing him, even though Roger doesn't talk to or engage with them. This is a great blessing for him and for us as his parents. It breaks our heart to see him struggle to make friends and we worry for his future, and the fact that he has children in his life to be his friend while he's still learning how to be a good friend in return is amazing to us.


    Such a sweet big brother.


    The norm: her really into him, him really into something else.


    Just look at them! They're the best. Love them together.



    We've been very well loved by our church family and my co-workers at The City as we've been walking through this for the past months and we expect that to continue. We've been listened to as we pour out our broken hearts, prayed for and over, and encouraged. The church as the body of Christ has loomed gloriously large in our lives, and there's nowhere else we'd rather be than with his people worshiping our great God even in our brokenness and despair.

    Ultimately, we know that God doesn't allow anything in our lives that isn't meant for his glory to be more clearly revealed to us, and for us to have greater joy in him. That doesn't mean that it isn't hard, and that doesn't mean that we're "fine" or "ok" with it all, but we know that we need not mourn as those who have no hope (1 Thessalonians 4:13-18). Furthermore, we know we need to be shaken out of our complacency, our willingness to settle for less than joy in Christ alone. We want to be brought to the place where we can see Roger's autism, and perhaps even greater storms to come, as God's sweet grace to helpless sinners--"just as I am."

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    *While we're on the subject, Gospel Wakefulness by Jared Wilson has probably been the third most influential book for us regarding Gospel-centered living after the two Tripp books. And the scriptures themselves, of course.


    First photo as a family of four.
    Favorite pic of us as a family of four.

4 comments:

  1. Beautiful post Fam. Love you guys and praying with you. I'm confident that the God of all grace will continue to glorify himself through your resting in him and through the wonderful antics of that sweet little Rog.

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  2. Thank you for this beautiful and brave post! Heartbreaking news but a blessing that it was diagnosed so early (thanks to your care, concern and follow-up) since early intervention is so key to kiddos with autism.

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  3. Love you guys and Roger so much! He is such a beautiful image-bearer of our Heavenly Father, we're praying with you through this season. SO grateful that the Lord gave him YOU guys as parents!

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  4. Thank you to all three of you for your kind words. The pain and peace ebb and flow but we are increasingly aware that all of life is lived before the face of God. He isn't safe, but he's good.

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