pride or peace?

The kids are on their way to school. Ellie is quietly sitting in her seat in the car drinking a bottle. I actually have boots on with a heel and my hair is straightened. I'm dressed and I look like a grown woman-instead of my signature gray hoodie and sweats. 

My coffee is reheated in my favorite cup.  I'm just looking for a cardigan to wear. The teal one. So “Pinterest”, I think. My casserole is warm in a fancy casserole dish carrier. And I think I might even make it on time. 

I'm headed to Jayden’s school for a parent meeting. The house, although not perfect, is decent enough to have company over unannounced. 

Somewhere long before I actually leave the driveway something usually goes wrong. I usually don't make it this far, this put together. Ever really. And I am wrestling with the emotion that's rising up in me. Is it pride or peace?  

It's 9 AM. Ready to go just need to grab the keys. This is what I long to feel. Put together. Organized. Smelling ok. On one hand, I feel peace. When my house is clean and I am on time and looking presentable, I feel calm.  But, on the other hand, I feel prideful. There is a small voice inside of me saying, “see, world? See how put together I can be?” If honesty gets the best of me....dare I say.....I want people to see? I want to be praised. THAT piece of it, is pride. I don’t think a put together moment is wrong when it brings a calm, a peace inside of me and my first reaction is to give God a shout out. 

I love feeling like I got in the car called “time” and am coasting in it, instead of frantically chasing after it. I love when I can sit and breathe. Or type and have coffee on my back porch. I love weeks like this where I become productive and clean the basements and closets.  But, the question, I guess, remains. “Who am I trying to please? Who is getting the praise for this peace?”  I always need to shift my focus to an audience of one.  I need to talk down off the ledge, my voice of pride.  I don’t need people to see how calm I am. I am really fine wearing sweats. I know the reality of moments like this. They stop. And, really, they are impossible to maintain. Somewhere, long before I actually leave the driveway, something goes wrong. 

Like, our van showing that the air is low in the back tire. Truth. Luckily, I called my manly husband, Justin, who works next door and told me to just go on over to the shop and he will put some air in it.  No problem, I think, just a few minutes late.  

Wrong turn. What was I thinking?! I know how to get to Jayden’s school! 

Now, 10 minutes late and Ellie just fell asleep so now I have to wake her and hand her to a stranger for child care. She did great, but my casserole didn’t.  It continued cooking all the way there and was brown on the  bottom.  And, common to me but, maybe not to others, this meeting is a parent support group for those of us who have children who have severe to profound disabilities. Not your average PTA meeting! (The parents I met were great and the content was very helpful.)

Sometimes, even in being vulnerable with the not so “put together” things, I struggle with pride. I have generally found peace in this world of special needs....I see the blessings, and have found my seat, and strapped in, so to speak. I think my seat number is B2.  Second row, second seat, on the special needs tilt-a-whirl. I want people to see me. To see my children. To cry, “look at me!” “Notice me, help me, love me anyway! Include me!”  That too, is pride, just less people would admit that.  

Audience of one.

I love Paul’s words in Galatians 1:10, “Obviously, I’m not trying to win the approval of people, but of God. If pleasing people were my goal, I would not be Christ’s servant.”  My peace should come from seeking God, not a clean house or cute boots.  Not from the “I’m so sorry you have to ride the tilt-a-whirl” comments, either.  Peace comes from knowing and trusting Jesus. Period. Everything else is counterfeit peace, I think.

Pride or peace? I don’t know. Hopefully peace.  

Col 3:23 Work willingly at whatever you do, as though you were working for the Lord rather than for people.

why we do youth ministry.

 Trever Carter is an amazing young man that we have had the honor to get to know quite well over the years as he has been a part of iMPACT, our high school ministry at Immanuel Church.  He is compassionate, funny, and has a servant's heart.  Jesus looks good shining through him. He is a blessing to iMPACT through the way he serves and loves, and a personal blessing to our family. He is even on time, thoughtful, and responsible...AND 16.

He adores Jayden and Brooklyn, and Ellie too, and has really learned a lot about life from his interactions with them. Over the summer, we were blessed to have him in our house every week for deeper, our mid-week Bible study and I went on a mission trip to San Diego with him. Trever amazes me. Even though he would be the first to admit high school is hard,  and he is no where near perfect, he continues to amaze me with his desperate pursuit after Jesus. Trever has a personal conviction to follow Christ and it is beautiful. His family doesn't attend Immanuel, and I am inspired whenever I see a student like Trever, attend youth group on his own.  He has found a second home with us, and I am so glad he is family.

For his English essay, he asked us if he could share about our children. With his permission, and our grateful heart, I wanted to share what he wrote.

THIS is why we do youth ministry. HE is why we do youth ministry.  It's a DUAL blessing, really.

Trever Carter

Mrs. Schmitz AP Lang & Comp 4 September 2013

Not So Small Wonder

The rhythmic sound of a bouncing trampoline stays constant from the other room, providing a backdrop to the rest of the organized chaos that echoes through the house.  A wagon takes a gentle roll across the hardwood floors, giggles coming from the back seat. There’s a gentle tug on my shorts. I stand in the middle of the room, and can never help but to simply smile.  In minutes like this, everything clicks. Life is precious, love is golden, and moments are to be savored.

Jayden and Brooklyn are the source of most of these commonplace noises that radiate throughout the household. These noises of laughter and melodic toys would typically constitute a, by definition, normal life. One protein, however, would change the name of the game for this family. One protein, a building block of a molecule that cannot even be seen without the ten thousand times magnification of a man-made lens, would be the protein that changed the Boyce’s lives forever, and also mine. When Jayden was about three, and Brooklyn newly born, their parents received devastating news of genetic illness. A one in twenty five thousand chance has occurred not once, but twice, and an autosomal recessive disorder would attack those who could barely walk.  This news would not only dynamically alter the lives of the Boyce family, but in turn catalyze change in the lives of everyone they met. Sanfillippo Syndrome was the curse, the disease, the diagnosis. This means these kids will grow up with special needs, function drastically lower than their age, and live short lives due to the inability to process this one simple molecule. Sanfillippo is now a word that is hard to hear; it is a word that sends icy shivers down my spine and makes me ask God one simple question, “Why? Why would this happen to a family I love? Why them?” Shortly, however, I would find out.

Now the dwelling these children walk in is a miracle in and of itself, a blessing that epitomizes the positive ramifications of faith. My church reacted to Jayden and Brooklyn’s diagnosis in a way that was to be expected by those who are basically family-- with a burning sympathy and a yearning to do more to help the Boyce’s. And that is exactly what transpired. Over a relatively short amount of time, the people of my community conjugated to raise a plethora of money and to build a handicap accessible home for these two angels. This project was ambitious, a goal that almost seemed to sit on the horizon, just out of reach. Yet with every passing day, week, and month, the horizon seemed to get closer, inviting everyone into its warm embrace. Friends, family, neighbors, and acquaintances-- everyone came together with one thing in common: indescribable and unexplainable love for Jayden and Beeba. To help raise money, many endeavored on trips they thought they would never take.  Some overcame an inexplicable fear of public speaking in order to deliver a blueprint of pledges; some went from never running a mile to running thirteen; some jumped out of a plane despite crippling fear of heights. Yet the best of all was that most broke the manacles of self-satisfaction and began to live for others.  They gave time out of theirs days to pour cement, lay foundation, and eventually begin to turn a house into a home. I was humbled to see a community morph even more so into a family, coming together to achieve a common goal. The result was an unbreakable bond created through hardship and resilience, as well as a beautiful home for a beautiful family. It truly is a miracle. 

Yet the small sets of feet that are running about the house, creating a pitter-patter as they go, are even more of a small wonder to me, both figuratively and literally. Jayden walks off of the trampoline, chewing on his fingers, and takes hold of my hand in his little one.  I begin to make funny noises- boops, baps, and whoops- tickling seven year old Jay, telling him I love him: anything to get one of his golden smiles. Four year old Beeba meanders from down the hall, graciously singing ‘Jesus Loves Me’. When I say hello, she gets an ear to ear grin, blushes a red vibrant as a crisp fall apple, and runs to mom or dad. Crossing the room, I pick little toe-headed, blue eyed Ellie up and throw her in the air. Their little sister is just as dear to my heart as Jay and Bee. While Ellie is perfectly healthy, Jayden functions around six years lower than his age, and Beeba functions around two and a half years lower than hers. I still cannot grasp how one small, minute, seemingly invisible molecule could possibly create a six year gap in functionality.

I have learned more about life and love from these kids than I could have ever imagined, and that is why they are such a wonder to me. Knowing these kids and growing to love them has taught me how precious a life is. And that means any life, really, especially those of special needs children.  Like a light on a hill, these kids epitomize what it means to truly be special. They giggle, dance, hum, and play. From them, I have learned about genuine love that knows know bound, no stereotype or judgment. I have learned peace, and being content with the hand I have been dealt. I have learned patience, and what it truly means to put it to work.  Jayden and Beeba know not what others think: they possess child-like faith in God in which I can only dream about. Stefanie and Jut, their parents, have taught me how to love and cherish a child. To me, these kids are irreplaceable; I love them more than anything. They answer the afore mentioned cry to God, “Why?” They respond by showing me life is not promised or guaranteed, yet it is a gift. There is no cookie cutter guide to the progression of life, yet more of a serpentine path that changes as you go. They have shown me what it means to be special, to value a life, and most importantly to love one another.  I look at human nature differently, I view people through a different aperture, and most importantly, I love these kids that much more.

Jayden’s laugh is ranked at the top of my list of my favorite things in the world. One step of intensity above a giggle, a true laugh is not often evoked by me. When it is, my next week is set with smiles every time I think of it. As he climbs next to me on the couch, snuggling up for bed, I think about life. I think of how short it is, to make every moment special and then cherish it. Love is the greatest gift, and I am to give it gladly and share it commonly. I am reminded that God’s plan is not always as happy as we think it should be. It is full of troubles and hardships. Yet life is beautiful in every shape it comes in. So my small wonders are not so small. Though they may weigh less than 100 pounds, they are huge, full of life and love.  Jayden and Brooklyn make impacts on everyone they meet, whether or not they will ever come to know it. These angels teach, comfort, and love: every genuine thing a person could want.

hospital love.

I am weird, {for more than this reason, I know} but I really like hospitals.  I like being the patient, and the mother.  I feel safe. I feel when I am the patient, I have trained people caring for me and I don’t burden my loved ones.  I am also more forgiving and patient with strangers, and a sucker for pain meds. 

When I am here with my kids, (I am writing from a chair next to Brooklyn as she recovers from a tonsillectomy and adenoidectomy at Children’s), I feel free. Free to be the mom and not the doctor. Sure, I catch puke, change diapers, and try to nurse her back to health....but at home I don’t have a red nurse button I call for help. I also have to only care for one at a time. 

And, I like being here alone. I don’t have to fight for attention between daddy and Ama. I don’t have to share the bed (with daddy, not Beeba). Kinda selfish, but I like being the one they want for comfort.  I also feel weirdly relaxed. Because of all the wires and beeps, I feel like someone is watching her so I don’t have to worry. We don’t have things at home they are connected to that tell us something is wrong or the people who would rush in, and fix it.

I know, I’m weird. 

I guess if something goes wrong, a hospital is the only place I want to be.  The temperature, the sterile smells, the white noise, the drugs, it all puts me to sleep. Literally, I struggle to stay awake when I am in a hospital. Did I mention the way I cope with emotionally stressful things is sleep? I was napping when I got the call about Jayden having Sanfilippo.  

Hospitals also force me to stop. Nothing like a hospital visit stay to make you sit still. No laundry, no distractions, no “to do” lists. No one trying to get a hold of you, no expectations to do or be anything but present for your loved one or resting. Between the dosing, I can check Pinterest, catch up on blogs, and even skim Facebook. 

Hospitals also give me laser-sharp perspective. You can’t focus on much else when you're at a hospital. Things get done without you, whether you like it or not. 

Clearly, the one thing that sucks is (typically) the WHY you are here. It is never a spa weekend.  But, even though the reasons are not that great for being here, I have a growing appreciation of God’s provision in times such as these.  We are so blessed to even have access to an American hospital. 

Funny. When I think hospital, I think hospitality, or rest. Or a common word pricture as the church as a hospital for broken people. When I googled “hospital”, this is what I found at www.christianforums.com; 

The word hospital comes from the Latin word hospitalia, which means an apartment for strangers and guests. 

The practice of hospitality was enjoined as a virtue upon the early Christians. In the early Christian times, hospitalia was a place where strangers and pilgrims were received and cared for. At that time, it was more a place of hospitality than of medical treatment.

{my thought: I wonder if many sick made the pilgrimages also looking for healing, and a hospital was meeting a need on their journey?}

In the early Christian times, Christians were encouraged to make pilgrimages to the many holy places of the Middle East. For several centuries, travelers from Western Europe made their way into this part of the world. Many of these pilgrims travelled without money, believing that they would receive assistance on their way from other accommodating Christians. Many hospitals were established, particularly in remote and dangerous places. These services were extended as tangible gifts in the spirit of Jesus Christ. 

Many of the great hospitals can be traced to the period directly following the Council of Nicaea in 325 A.D., when the bishops of the Church were instructed to go out into every cathedral city in Christendom and start a hospital. 

As time went by, medical treatment gradually played a bigger and bigger role in hospitals. From the 16th century onwards, hospitals began to take on its modern meaning as we know it today.

Maybe that is why I feel so connected to hospitals.

I was sharing with a dear friend who adopted over a year ago.  For years, we shared in her journey grieving a miscarriage, years of trying for a child, saving for adoption and becoming new parents 24 hours after getting a call they were selected.  Now, things have settled down, her son is over a year old. I asked her if she missed those harder times when she didn't see the end in sight.I know I look back on those months before and after Jayden’s and Brooklyn’s diagnosis and miss the intimacy and dependance I needed on God and how He carried me.   in relation to her dependance on God, and she felt the same.

But, He didn’t just carry me, He also gave me a gift. A gift I could get in no other way then through the valley.  I am reminded of His provision, and built a mental alter so I never forget because I know there are darker times ahead for us. I know there are more hospital chairs, more tears, more sleepless nights, more beeps. I know I will question God, but I want to remember in those times of darkness, He is faithful. 

When we were serving at the elderly day center and the food pantry in San Diego this summer, I mentioned this thought to our students. Many of the people we were serving could teach us a thing or two about God’s character in the midst of suffering. When a man who is homeless with barely nothing shares the little he has,  or when someone who is in a storm themselves and takes the time to say thank you with her infectious personality, like our friend Phyllis... it is like God’s character is sometimes best revealed against the background of brokenness.  A light in a dark room is much more noticable than the same light in a sunny room, yet it doesn’t necessarily mean it is any brighter.  

But even with all the beauty beneath the suffering, I’m reminded we were not created to want to suffer. It proves so much to me that the world is not how God intended.  Revelation 21:1-7 says, Then I saw “a new heaven and a new earth,”for the first heaven and the first earth had passed away, and there was no longer any sea. I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband. And I heard a loud voice from the throne saying, “Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. ‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.” He who was seated on the throne said, “I am making everything new!” Then he said, “Write this down, for these words are trustworthy and true.”

He said to me: “It is done. I am the Alpha and the Omega, the Beginning and the End. To the thirsty I will give water without cost from the spring of the water of life. Those who are victorious will inherit all this, and I will be their God and they will be my children.

I love that promise.

Contentment has a funny way of numbing us to God, doesn’t it? When someone you love is sick, or even having outpatient surgery, you pray a little harder that morning, you become acutely aware of His presence because you NEED Him a little more on surgery day then laundry day. Maybe it’s just me. 

Maybe that is what I have grown to love about hospitals. Maybe I am weird. Hospitals bring me into a rich, dependance on God, the way only pain does. Time stops and I rest as everything important comes into focus and God gently reminds me that we were made for so much more.