CHOP | how the light gets in

Today is DAY 10 of waiting for Joseph’s test results from CHOP. Ten whole days of testing ME — my patience, my steadfastness, my Faith. Before I get into what these past days have looked like, here’s what I think FAITH looks like:

Faith is NOT a label you wear. Faith is NOT a statement you throw around. Faith is NOT a destination. Faith is a human being putting trust in an unseen God.

Just before going into this 10 Day Test, I listened to a Jen Hatmaker podcast with guest, Brene Brown. Among a million amazing things, Brown stopped me with this, “Don’t be scary when you’re scared.” If my heart had hands and a highlighter, it circled that statement over and over. So, I promised myself to hold onto that. She also said, “Science and Spirit are all from the same source.” Hmmmm… heart hands, highlight that too.

This is where I have seen how Science & Spirit go hand in hand in Faith. I just learned how to breathe. Literally. I have been doing it wrong all along. Took 42 years to teach this human how to BREATHE. Is God rolling his eyes at me? My physiotherapist instructed me to inhale deep and fill up my tummy. And then, on the exhale, to imagine pulling two points on my hips together. Want to know what I was doing so wrong? I wasn’t breathing. I was holding my breath. Anytime I was in the midst of something scary or hard (or just wanted to look thinner), I would hold my breath. She said I was suppressing and holding onto the bad instead of experiencing it and letting it go. Science and Spirit, baby.

My physical body was stopping the very thing it needs for life, breathing, to numb a bad experience. And as weird as it sounds, inhaling and exhaling correctly force me to be IN the moment, the good and the bad. My homework these past two weeks, has been to breathe. The timing of that science for the testing of this faith is divine, don’t you think? “Breathing Homework” examples: we were so excited to find a new trail at Loch Raven. We explored it deep until we felt like we were all alone. In THAT moment, with all 5 kids, on a beautiful day, overlooking the water, I inhaled sweetness and exhaled gratitude. On the other hand, following a conversation with someone who meant well but scared the crap outta me; I inhaled slow fear and exhaled it OUTTA me.

There are several scriptures about Faith that give it good visual. Words like anchor, shield, etc. We, as humans, need the visual sometimes for our unseen God. There is, however, the person who gives us a visual to the unseen God, Jesus. And He is my model. God gave us his son to show us how to get it done! God put flesh and blood to his divine power and gave us this… person. The ULTIMATE combination of Science and Spirit.

And you know what is so cool about Jesus? He didn’t float around making people bow down. Jesus walked, taught, cried from grief, lost his cool, took a break from the noise, asked for a pass, and he was always talking to God. Jesus shows us FAITH is a LIFE FILLED WITH action, emotion, it’s a journey; side by side with God. What I am trying to say is just because I have faith doesn’t mean these past 10 days have been me saying “God is good” with a numb smile. I have cried, smiled, freaked out, prayed, called CHOP, prayed a bunch more; breathing in and out the whole time. While I have been trying so hard to be steady, I have stumbled. And you know what? That is okay because “The steadfast love of the Lord never ceases, his mercies never come to an end; they are new every morning…” Lamentations 3:22-23.

God may be invisible but His love is not. Reading the Bible, getting texts from you all, being healthy enough to see all of my kids off to school, the timing of hearing Brene Brown’s wisdom; all evidence of God and how he weaves His spirit into my everyday. Pray for me as I wait on the science.

inhale

exhale

We’re coming up on a year. One FULL year. I was looking for a picture on my phone and ended up at a group of pics from August 2016 that made me swallow hard. Joseph hooked up to lines and monitors. Joseph slumped over, skinny and pale. Joseph leaving the hospital with a line in his chest and his eyes crossed from the swelling on his brain. Just like that, those pictures took me right back to some dark days. So, I switched over to Jason’s phone hoping to find the one picture from our beach trip last year. Instead, ugh. I found pictures of my family I didn’t remember. Pictures I had never seen because I wasn’t there. I wasn’t there for Lauren’s Gateway Ceremony. I wasn’t there for Joseph’s impromptu birthday “party” to go apple picking with his best buddy Ryan. I wasn’t there at the park. I don’t remember because I was in and out of surgeries myself. And then, I was so doped up on pain medications that I was asleep or dazed on the couch.

Looking back makes me cry. Makes me so sad. So, I started asking God for how to work through looking back. “Guide me on HOW to look back, Father because there’s a lot of bitterness and anger and dark wanting to take over right now.” He answered. I feel like when you lay it out, plain and simple. God gives it right back the same way. You see, later that day, I went to my eye doctor for a contact lens fitting and as I was checking out I heard a voice behind me. Nope, not a James Earl Jones God voice… I heard Karen’s voice. Karen was Joseph’s home care nurse. She taught me how to give Joseph his daily infusions and she would change his dressing weekly. I hadn’t seen her in months! Karen is a living breathing reminder of Joseph’s medical journey. For HER to be at the office and then sit down with me on a bench in front of Giant and ENCOURAGE ME to keep advocating, and APPLAUD ME for getting my boy into CHOP, and REMIND ME that Joseph is a tough little booger. Turns out sometimes, God can look and sound like Karen.

The Gospel from mass this morning is from Matthew 14, you know this one. The Disciples were out at sea when a bad storm came up and Jesus walked on water out to them. Yeah, I’ve heard this a million times before, Andrea. HEAR IT AGAIN, Jesus walked on water. Father White pointed out not that Jesus walked on water BUT that Jesus did the unexpected. His friends were calling out to him and he showed up. Call out to God and let Him surprise you. I asked God for help navigating hard memories and He gave me someone who saw us at and through our ugliest, Karen.

I ran home to pull out my journals from last year. I wish I could post pictures of every page. Because EVERY. SINGLE. PAGE. is God walking out to meet me. Criste stuffing our pantry and TWO fridges full of food is Jesus walking out to me. Keyne, Nicka, Jenna and Criste sitting out in a waiting room for hours is God sticking close to me. Mary cleaning up the raw chicken mess and just being Mary is God’s defiant love for me. Mrs Certeza, Mrs Reuter, Mrs Lebowitz, Mrs Nossel, Mrs Matthews creating a circle of compassion and patience for Joseph at school is God protecting my boy. Laura and Christa showing up to clean my house while I tell drugged up, wacky, nonsense stories is God showing His sense of humor. The pizza, fried chicken, tortilla soup, lasagna (Bethany, that my family still raves about), CHICKEN POT PIE, Chicken a la King (that I still have the handwritten directions for Janine), yummy onion potatoes, chili, grilled chicken and orzo, SPECTACULAR breakfast surprises; YES, God saying, “I see how you roll, Smithbergers. You eat a lot. I will send you a lot.” Beth organizing it all and encouraging through it all is God’s friendship; blue eyed and beautiful. Taylor. There are not enough words for how Jesus shines through her. Angie, someone I never see, but she sees me and reflects Him. Annette, that God would know me so well He would gift me a soul sister decades ago shows his all-knowing awesomeness. Colleen is Godly beauty and just a really cool chick. Running into Carey or Dana at Target and just laughing shows Jesus likes Target too. Meredith, “deep calls to deep,” offers me wisdom no else can know unless you’ve watched your child go through the hard. Johnny Kelly, evidence of God’s attention to detail and love for the Buckeyes (hee, hee). My sisters… evidence of God’s artistry in weaving them into my life to save me my whole life. I’ll never forget being in the ER, hooked up to morphine, and Pop Pop sitting faithfully by my side telling me stories – his loyalty to family is a beautiful reflection of God’s love. Mike and Jill, continually reaching out to me to offer encouragement all while fighting their own battle, is Jesus selflessness. My husband, working full time, taking care of me and Joseph, watching our pain, running the other 4 kids to whatever they had going on, being BOTH parents, his devotion and energy are His grace.

Those are the real life examples of God meeting me. But the journals are also filled with His word, scriptures speaking straight to my heart. “I am with you and will watch you wherever you go.” -Genesis 28:15 or “Remain in me and I will remain in you.” – John 15:4 and “May the God of Hope fill you with all joy and peace as you trust in Him so that you may overflow with Hope by the Power of the Holy Spirit.” – Romans 15:13 and Deuteronomy 3:16 “Be Strong and Courageous. Do not be afraid or terrified because of them, for the Lord your God goes WITH you, He will never leave you…”

Joseph is now scheduled for another spinal tap, MRI and some bloodwork on August 28th. 365+ days later, still looking for a diagnosis and treatment. Do I wish Joseph was cured by now? And that my pain would disappear? Yes. Looking back, would I change anything? Let’s say I wouldn’t plan it the way it happened. Being honest. But I wouldn’t change the past year. Looking back, yes, I will feel the painful memories. The pain is purposeful. But, I won’t let it linger. We have learned too much. We have been loved so much. I have been surprised by how God shows up. And the “unexpected” is worth it all. God is real.

Amen.

how the light gets in

Tag: CHOP

Breathing and Believing

Posted at 9:37 am by How the Light Gets In, on September 7, 2017

Looking Back and Seeing…

Posted at 5:01 pm by How the Light Gets In, on August 13, 2017