Friday, December 19, 2014 Since we have too many awesome friends and family members to send Christmas cards to via snail mail, we offer you our electronic Christmas letter 2014. =) But first, a quick (relatively =) ) 3 month update: (1) Neurology and ophthalmology gave Nolan an uneventful bill of health and suggested yearly follow ups from now on (yay!) (2) We have not had the sleep study yet so no updates on ENT, sleep doc, or potential surgery. Sleep study likely end of December or first of the year. (3) All therapies are going well, but Nolan continues to struggle with the coordination and strength to chew and we have gone back to monthly PT instead of every 3 months because we noticed he has very weak hip muscles and we want to build them up asap. (4) We have had 3 bouts of illness already in the past 2 months so hopefully this is not a foreshadow of the winter ahead, but we do very much appreciate your prayer support in helping him to heal quickly! (5) Nolan turned THREE years old! He had a great day seeing some family and his closest buddies. My little chunky monkey is no longer chunky and no longer even a toddler, sad days. But he promises regularly that he will be my baby forever, so all is well. He rocked his monster truck cake, eating about 3 pounds of it… but I didn’t mind because that FINALLY brought his weight into the 30’s after hanging out at 29 pounds for a whole year. His growth percentages continue to be at or just below the 50th percentile- what a Champ! (6) Nolan’s awesomeness: coming down the stairs all by himself in the mornings (and if he is successful, finding the ipad and treating himself to some monster truck videos on youtube. Yes, I know that is scary), somewhere along the line of the past 6 months consistently being successful in the potty for #1 and #2 and everything in the middle, teaching himself how to do a summersault, using long and proper sentences with better grammar than myself, expanding his vocabulary and not being afraid to try any word, being very, very patient when we do not understand what he is saying, watching his first-ever movie “The Polar Express”, understanding and verbalizing the need for him to be calm when sick so his throat doesn’t get too weak, alternating feet going up stairs, jumping down successive stairs without hesitating on each step (7) Best moments: Screaming bloody murder at The Polar Express when the ticket flew out of the “blue friend’s” hand into the snow and continuing to cry hysterically off and on for the next 10 minutes until the ticket makes its way back into the “blue friend’s” hand, after I showered and dressed in real clothes actually trying to look half decent, Nolan looks at me and says “I not yub you in dat sirt, Mommy. You not pitty.” (Ouch, where do kids learn these things?), as I sit down for dinner telling me “not hap yow pone at da tapas, Mommy” (Not have your phone at the table, Mommy), after being instructed to ask his friend for a toy and for the first time ever putting these words in the correct order, he patiently said to his friend “Can….. I…… hap…. yow….. baw?” (It broke my heart to watch him have to concentrate so hard on each word, but I rejoiced with pride when he finished!), after Brett telling him something he said wasn’t funny and then hearing me cover up laughter from the kitchen Nolan told me “not punny Mommy”, another time Brett told him again that something he responded with “no, dat IS punny!”, while fighting with me trying to clean out his nose I said “well do you want to breath or not?”- Nolan’s response was “not”, while sorting different coins I gave Nolan a chocolate coin that looked like a golden dollar coin- after eating it he picked up a real coin and said “open dis one too, Mommy”. But BY FAR the best moment(s) of the last few months have been when Nolan stops whatever he is doing to look at me and say “I yub you, Mommy. Yet me div you a huk and tiss” (I love you, Mommy. Let me give you a hug and kiss). (8) Favorite phrases: saying “be back soon, toe-toe” before leaving Chloe at home, “I’m saw-peas Mommy” (I’m sorry, Mommy), “Nowan punny!” (Nolan funny!), “Nowan excited!”, “Nowan yuuuuuub _____”, “Hi mail yady!”, “Daddio, haha. Mammio, haha”, “I yub you, Daddy, I yub you, Mommy. Now Nowan get ipad?”, “you stinkin cute too”, “what’s yow powpow pawt?” (What’s your favorite part [of the day]?), “I tryna help you hunny”, “put pone nine. You two han” (put phone down. Use two hands). And now our Christmas letter (if you’d like a recap of the year): Dear Family and Friends, We rang in the New Year 2014 quietly by recounting God’s goodness and being encouraged by friends old & new, cooking dinner over our bonfire, slipping a small piece of paper into our 2014 Thankfulness jar, [party-pooper-ishly] going to bed before the ball dropped, and catching the first fish of the year on January 1. I think this is a fitting picture for our 2014 at a glance: medically quiet, surrounded and encouraged by God’s family, intentionally investing into family time, enjoying the outdoors, beginning to learn and practice eucharisteo (Thanksgiving), and intentionally resting. A medically quiet year is something we didn’t think we would see this early on, but if we can make it to December 31st at midnight, 2014 will mark a whole calendar year with not a single overnight stay in a hospital. Hallelujah! That’s not to say the year was without medical challenges. We did have a few scary 911 calls from Nolan choking on food, a few ER visits, some “regular” kid bugs, and we charted some new nissen territory with an upset stomach. However, God’s grace has continued to be poured out to us in our times of need and we are [very] slowly learning how James 1 fleshes out: “Count it all joy, my brethren, when you fall into various trials knowing that the testing of your faith produces patience. But let patience have its perfect work in you so that you may be perfected and complete, lacking nothing.” Joy is not the first word that comes to mind when I think of the suffering my son has endured. But I guess that’s the point: I tend to focus on the suffering and not the product of the suffering. James doesn’t say to count the trial as joy, but to count the fact that I am going through a trial as joy because if I let the Lord work in my heart and produce in me Christ-likeness through my suffering, the result will always be a closer walk with Him: and that is joy beyond measure. One spring Saturday morning after receiving disappointing news about the status of my adrenal health, as I sat scared and crying, God just put a picture in my mind. As if I was a bystander standing in the corner of the room, I saw Nolan lying intubated and sedated in “his” PICU room. I saw me sitting in the same chair I did every day during that stay, wheeled over to his bed, holding his hands, my head bent in prayer, crying, begging for healing. I saw Brett standing on the opposite side of the bed desperately looking for signs of life in the motionless body of a person he calls son. And then I saw another figure I somehow knew to be Jesus. Sitting next to me, His hand on my shoulder, His own head bent in prayer, weeping right along side of me. I felt the Lord saying “Don’t you see? I was with you the whole time, as I am now.” Joy. Unspeakable joy. And goosebumps. Definitely goosebumps. You, our friends and family, have been a consistent source of joy as well. For the handful of times this year we have posted to Team Stripe asking for prayer- right after we feel we have hit rock bottom with a certain illness- Nolan has a miraculously quick turn-around. While the turn-around is always worth celebrating, we continue to stand in awe at the power of prayer and the faithfulness of those who pray for us: this brings great joy! So does family time. We snuck away for a quick weekend in January to Charleston to watch our nephew dominate the 5-year old flag football field, and again in June to celebrate our niece’s 1st birthday. In March we visited Atlanta, staying with friends and exploring the Aquarium, the zoo, and the Market. In June/July we spent a whole week (Megan & Nolan spent two) in Hilton Head to celebrate Brett’s brother’s wedding with the Stripe family. In August, we took a family trip to Maryland and were able to see most of the Kelbaugh family and some old friends. We also enjoyed teaching Nolan how to sled in the SC “blizzard”, a fishing trip to Lake Jocassee, kayaking with Chloe, biking on Swamp Rabbit trail, winning useless treasures at Frankie’s Fun Park, exploring the Children’s Museum where one of Brett’s projects in on display, apple picking and tree climbing at Skytop Orchard, playing all day at the Denver Downs corn maze and pumpkin patch, and walking to the neighborhood lake to go fishing. Many of these activities we were unable to do the first two years of Nolan’s life due to his fragile health and/or immobility. In this, we have been so thankful. Speaking of thankfulness… I read the book “1,000 gifts” where the author says that the essence of joy is thanksgiving (eucharisteo). “Chara” means “joy” and is a derivative of “charis” which means grace; “eucharisteo” means “to give thanks” so the grace-gift of joy is embedded into the practice of thanksgiving. It is through the giving of thanks that we receive joy through the very things we are thankful for, which means the more we give thanks, the more joy we receive. So let us share with you just a very small portion of little grace-gifts we are thanking God for this year: Nolan learning how to hop assisted, ask “why” 100 times a day, alternate feet on the stairs, jump in a pool, swim upright in the pool, sing his first song (5 little bunnies), walk over a mile in 16 minutes, say “I love you,” have over a 500 word vocabulary less than a year after saying his first word, use proper grammar and tenses and sentence structures, use the big boy potty, run up a hill without assistance, and to transition on & off toys, chairs and floors. We are also thankful that he can handle bolus feeds without drip bags, his gtube lasted 19 months and the replacement went smoothly, he can ask “why” 100 times a day, he advanced so much that he tested out of BabyNet services, he is happily learning preschool curriculum, he responds positively toward discipline, he enjoys doing chores and helping Mommy cook, he loves people well, he giggles with his friends, he gives great hugs, he doesn’t let us skip praying for him at night, he can take his own shoes off and sometimes put them on, he can throw balls and catch balloons, he can bring a smile to any stinky situation, he innocently says “Tuze me. I parted” after vibrating the house from his flatulence, he asks someone to repeat words by saying “watchu sayid?!”, he loves to play in the rain, he is perfectly content to play with simple toys like cars and trains and “mosmos tucks” (monster trucks), and one of his favorite times of the day is reading a “Jesus story” before bed. (Did I mention he asks “why” 100 times a day? ;) ) For me (Megan), perhaps the pinnacle of being encouraged by God’s family this year came on a Sunday morning in April. In fact, the day after God put that picture in my mind. The sermon was on Mark 4 when the disciples get caught in a deadly storm in the middle of the night while Jesus sleeps in the bottom of the boat. I remember being periodically zoned, but I also remember thinking when I snapped out of it that it ended up being perfect timing in relevance to me. I want to share the most impactful part: Jesus initiated the boat ride with his disciples, knowing full and well the fate that awaited them on the water. Why? To expose their fears. What we fear shows what we worship and God wants us to worship Him alone, with “all your heart, all your soul, all your mind, and all your strength.” (Deuteronomy 6: 8). Over the past 3 years, I’ve feared for my own health as well as anything that could even come close to harming Nolan. The fears have at times been debilitating: throwing me into panic attacks, distracting my driving, keeping me from sleeping, and quite literally making me sick. The moment I realized that God has purposely lead me through these “storms,” I slowly looked up from my notepad and it felt like time stood still: God’s Spirit said “because I love you.” He loves me. He loves me. He loves me. He loves me enough to allow the storms so that “His perfect love will cast out fear” and instead of being a slave to fear, I can experience the peace and freedom of faith. So why is this the pinnacle of being encouraged by God’s family this year? Because after the service while I stood in line to pick Nolan up from the Kids area, a friend (who is in my small group and who has been privy to life’s challenges over the past few years) came up to me and said something to the effect of “Hey Megan! I was hoping to find you! I wanted to let you know that I was praying for you during the sermon today. I prayed that you would hear God speaking to you and that you would be encouraged by His love for you.” I was so speechless and teary-eyed that I was only able to muster out a sincere “thank you”. Because of another person’s obedience to the Spirit, I was blessed, my heart was encouraged, and I felt God’s love for me in a completely new way. So this is our prayer for you as you reflect on the past year and ring in the new one: that you would know of the deep love of our God and find yourself thanking Him all the more. Be blessed! Brett, Megan, and Nolan Stripe
Posted on: Fri, 19 Dec 2014 21:54:13 +0000
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