Remembering to Breathe

Two weeks ago, I was beside myself in tears as I thought about Kylie's upcoming cardiologist appointment in December where she will have an echocardiogram to get a new measurement of the pressures in her lungs.

It will have been 5 months since we chose to not put Kylie on medication, but rather to attempt to fix her persistent pulmonary hypertension with natural healing. God has provided miracle after miracle in her and our lives that meds just didn't seem to be the right puzzle piece in this part of her masterpiece. There has been so much inside-out healing in our family this year that we made the decision to embrace the holistic healing path in a search for the root cause instead of treating symptoms.

We saw Heewon (our nutritionist) last Saturday. She couldn't find the bacteria in Kylie's body. It had begun in her lungs, moved to her blood, then liver. Now, it's gone. Gone. I had the biggest swell of joy. I was filled with so much gratitude I nearly started dancing and hugging her. Luckily, keeping Kylie from grabbing every vial in the office is a good distraction from over-celebrating :)

What we can't know yet is if this bacteria was the cause of her hypertension. So we still walk in the unknown.

And that's a scary place to be without faith and wisdom, which I pray for daily. I am not God. I am not the one who knows what is best for Kylie and directs her in the ways she should go. But God has entrusted her story to us. It sometimes feels like He has entrusted me with much when I feel I have not proven myself with the little. But I have to remember He qualifies the called; not the other way around.

And I'm not alone in this. I was slightly taken aback when Ethan mentioned he wants to be there on Friday when Kylie is tested. It was a thought that had not even crossed my mind. I was like, "You have work." But I had to breathe and let it sink in that we made these decisions together. He is her father as much as I am her mother. And if one of us feels the weight of foolishness (that's mostly me), the other can lift the fallen one. We walk together through this.

I wrote down the following in a journal to get it out of my head at the time:
"The decisions I made, I made them out of faith and love. I don't know if they are right.

In three weeks, I will stand in front of a doctor, an expert in a field that makes my understanding seem smaller than a grain of rice.

I will hold my breath as I present my daughter. It will feel so much weightier than a simple measurement reading. It will feel as though my worth, my beliefs, my choices will be weighed and judged."

And the comforting voice of God reminded me. Breathe. You are my child. Your worth is in me no matter how foolish the world thinks you are, how foolish one man thinks you are.

And then I saw the greater narrative. I thought about the end of time when we stand before our God and it will feel much the same. I saw myself in tears saying, "God, I don't know if the choices I made in my life were right or wrong. But they were made out of faith and love." And I won't know what will come through the fires of God, but it doesn't mean I don't keep pursing love just because I may not understand in this lifetime.

God loves correction and refinement. He loves to chisel at those who seek him. Love is made more perfect in Him. And perhaps the more I love, the more I may understand. Or not.

I've been reading Brené Brown's books Daring Greatly and The Gifts of Imperfection. They have brought about so much reflection and healing about the shame I heap on myself. There is a beautiful line in her book about keeping a list of names of whose opinions truly matter; it should be a short list. And that has been a hard practice for me to incorporate into my life because it doesn't mean that others' opinions don't effect me. They just can't define who I believe I am or the me that I and those closest to me love.

So even if Friday's results tell me that she is no different than she was three or six months ago, it does not mean we made a wrong choice. There was a bacteria in her lungs and it is no longer there. She is healthier because of the choices we made. We made a choice that brought about good even if it isn't the result we hope for in the end.

Another thing I'm learning from Brené's books is to shut down foreboding joy. I refuse to not make hope a big deal worrying that I may look foolish if I'm wrong. I refuse to not press into the discomfort of being proud of the choices I made. I will say I hope with abandon that the doctor will be amazed and she is healed and healthy. 

And if I'm wrong I will grieve with those who love me for those choices because I was courageous enough to let them know I had hopes and expectations. But I will not dwell on that possibility until it is a reality. Hopes met or unmet, Friday will come and go, and we will find our way with our God and our Tribe from there.

So we are praying for Plan A. We want her future to be one of health and joy. Please join us in praying for our Kylie-bear.

Yes. I'm a realist in transition hoping and learning to be an optimist.

We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope.

Brené Brown is a researcher and storyteller. Her blog can be found here.

Mud bath...

..well not exactly.

At the end of September, Kylie went in for a mud therapy session. The mud is a combination of Volcanic and Kaolin Clays, Peat Magma, Shilajit, and Target Botanical Agent. It targets sites on the body that have accumulated toxins by creating a thermal effect to draw out deep seated toxins in the cells.

Chinese medicine describes your body as having energy flow and when there is disease or injury, it causes interruptions in the energy flow. Mudding can help remove the "interference fields" and restore chi flow. This results in cells being restored to their optimal cell resonance, having healthy circulation and lymphatic flow, and boosting the immune system.

Unlike a mud bath you think of at a spa, this kind of mud therapy targets specific sites. Kylie's mudding included 3 areas: hands and feet, vaccine sites, and her heart inflow point. The hands and feet were mudded because they are the sites through which energy recycles. The vaccine sites are mudded since vaccines contain chemicals and metals. Metals like aluminum cause cells to absorb water and swell so toxins can't be excreted from the cells. Her heart inflow point on her chest and back was mudded to help with the systemic bacteria that we've been dealing with. In talking with Heewon, the bacteria seems to have moved out of the lung tissue and into her blood. This is a good sign.

When we arrived, we were greeted by Ellen, who did the mud therapy for us. Before applying the mud, she had me make an "O" with my thumb and ring finger and the sites were tested for their strength, which were weak. Ellen applied the mud and then watched as Kylie tried to eat it and tried to climb off the bed in attempts to get brother and sister's toys. It got a little messy, but when the sites were retested, they were strong.

And that was it. I talked with a friend who had done mudding and she said the effects weren't immediate but in a month or so she felt a lot better. Heewon also told me we may need to mud more than once.

Then this past Saturday, about 3 weeks later, we had our normal follow up with Heewon. The heart and lungs were strong, yay! Now the systemic bacteria had moved into her liver. This is exciting because the liver clears the blood of harmful substances and excretes them into bile to be flushed out of the body. It looks as the though the body is getting ready to rid itself of this. Our hopes and prayers!!! Heewon had a little laugh that maybe next time we'll come in and the bacteria will be in the kidneys as its last stop on the Kylie train.

Heewon also found an emotional blockage in T6 of her vertebrae and I learned that there are nerve endings in each vertebrae that go to specific organs. One of the organs in T6 happens to be the liver. So hopefully now that it's cleared, and with the liver supplement she's on, her body will be that much stronger to fight this bacteria.

Some very sad news for our family is that Heewon is moving and closing her practice at the end of the year. I keep asking God why and what I'm supposed to learn through this turn in the road. I've pondered amazing as well as depressing options. But I'm learning again and again that understanding comes after action. So we keep praying and ask that you pray along with us that by the end of the year, this is done. We have another follow up with Heewon just before Thanksgiving. Then the big test comes in December when we go back to see Kylie's cardiologist for an echo to get new readings on her pulmonary hypertension. We fervently pray that with the bacteria out of her lungs, the pressures will have dropped.

Thank you so much for journeying with us in your support and prayers. We can't do any of this without the love, joy and reassurance from our Tribe.

We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope.

Heewon is the nutritionist that founded and runs Healthee Life

World Suicide Prevention Day - We'll see you tomorrow

This week is National Suicide Prevention Week and today is World Suicide Prevention Day.

This past summer, my neighbor down the row chose suicide. My kids called him Mr. Joe. We saw him walk down the row every day. My kids would occasionally take brooms over by his patio to sweep the excess water into the drain after he'd wash down his patio. Once he dropped off a kids book at our house that someone had given him that he thought the kids would like.

I didn't really know anything else about him.

What I do know about suicide is that it is the end result of depression. You become so alone, so despairing, and so without hope that it appears to be the only available option. Death is death by suicide.

I was in a place of critical depression; and I feel lucky, blessed, beyond grateful to have found hope. I heard a talk this summer by at guest speaker at Mosaic who said that God was motivated by the you you could become enough to create you (Jeremiah 1:5). The God who can create galaxies took a moment to see who I could be and decided it was worth it. I was worth it.

It's hard when you're depressed to believe that anyone could love someone like you. Isn't loneliness what I deserve? No. And because I am of worth to God and loved by Him, I am worthy of love from others.

So I fight loneliness. I fight rules that commit us to lives of solitude. I fight for community. I fight for hope.

So today, fight for your friends. Fight for your neighbors. Depressed people don't talk about depression. You never know who is slowing drowning themselves in despair and loneliness. They need you. They need Jesus. They need love and acceptance in their brokenness. They need your Hope.

#TWLOHA

Here is a link to a beautiful talk on hope by Erwin McManus, the founder of Mosaic.

To Write Love on Her Arms is a non-profit movement dedicated to presenting hope and finding help for people struggling with depression, addiction, self-injury, and suicide. TWLOHA exists to encourage, inform, inspire, and also to invest directly into treatment and recovery

Life on the unbeaten path

It's been 2 months since our first steps on the unbeaten path. Food has become a huge part of my life right now. After 6 weeks of mostly extracting things from our diet (losing an additional 9 pounds in the process), I'm finally getting a footing on adding new and exciting things to my family's menu and stomachs on a budget. I've encountered several new friends who have traveled this paleo road already and are helping me and being such an encouragement. 

Shopping is still the hardest part of my week, taking all three kids to shop for things we've never cooked with before which makes the trips much longer than they used to be. And we normally end up leaving the store without one or two things because they just don't carry them. But, I've learned customer service makes all the difference in my mood. We've switched grocery stores to one that's farther away just because the staff is so extremely empathetic and helpful. Tony in produce even brought fresh cut up fruit to my crying children and their determined on-the-verge-of-a-breakdown mother.

We saw Kylie's nutritionist in August and September, and both times Heewon told us her heart and lungs felt strong which is so exciting. Last week, we went in and saw Kylie's cardiologist for an echo. Her pressures had dropped from 63 to 59. According to doctors, it's minimal progress and he is still recommending the medication. To us, 5 points is 5 points and we're heading in the right direction. Our end goal are numbers in the low 30s so we still have a ways to go.

We have been doing castor oil packs with Kylie several times a week to try and help draw out the toxins in her lungs and now we're going to try mud packing at the end of this month to see if it can help as well.

We will go back to the cardiologist at the beginning of December to see if she's made more progress!

One update on Kylie's club foot - she's outgrown the shoes on her infant snowboard :) She will be getting bigger shoes to continue wearing at night until she's three, but the doctor said she will not need any surgery and can check in with him once a year until three!! Hurray!

Kylie turns 1 next week and it's crazy to think of everything that's happened in the last year! 

I'll post again after the mud packing in a few weeks! Until then, we still covet your prayers.

Waves and high fives to everyone!

We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope.

Heewon is the nutritionist that founded and runs Healthee Life

My Memorial Day

[Originally posted to Facebook on 8/18/2015]

It’s hard sometimes to jump into writing about a journey that doesn’t have a clear beginning or end. But even in that journey, you can identify the turning points. Today marks the first anniversary of one of those turning points. A memorial. A Memorial of Hope.

Having a genetic predisposition and already prone to situational depression, and a personality that cares about everyone but myself, depression condensed like a cloud on my mind. As depression began to rain, things started to wash out. And I excused them. Too busy. Too tired. Not important.

And too late, the rain was a flood and I had not sandbagged my mind...and my brain broke. I was Sad. Unhappy. Uninterested. Indifferent. Depressed. I wanted to be alone. All the time. And I couldn’t be.

                                                              I was pregnant.

A dangerous mix. I reach a point where I stopped eating which isn’t exactly a good choice for growing a human. I stopped sleeping which left me ruminating on all sorts of dreadful things hours into the night. And everything started slipping away. But it wasn’t friends, events, or interests crumbling through my fingers. It was me that was falling apart.

I call that season my faded life, for everything in my mind that was familiar and dependable had left me. Just a lightless shell becoming ever more transparent until I thought my substance may fall apart completely and I’d disappear altogether.

Despair was like drowning, and fighting alone like being waterboarded. Happiness was like finding an air pocket in a submerged car. When it ran out, the claustrophobia of being trapped inside myself was even more overwhelming than before. So at the end, I gave up on Happiness too.

I was at the bottom. The deep cavern I had dug. But God is faithful and always provides a way out so we can endure. And like a trap door, the bottom of my world fell and I screamed in desperate resignation, "When does it all stop falling apart!" Because it looked nothing like hope, nothing like a heroic rescue.

It felt more like being shackled to an anchor. In an ultrasound, what were signs of an infection inside her tiny form turned into an unknown heart condition. Cardiomyopathy - A mystery of the heart. Our little Kylie had entered her own dire straits. As we sat numbing our emotions to make room in our minds for as many facts as we could handle. I remember hearing "miracle...meds...heart transplant...Not. Make. It." Before we left, the doctor made me answer him, "Whose fault is this?"

"Not mine"

he made me reply.

The picture started to come together as the afternoon wore on. She did nothing wrong. I did nothing wrong. Yet here we are. Everything seemed so turned around and backwards. So hope...less.

But the doctor also said I was her best hope. The critically depressed mother was her best hope. She needed more time. She needed me to care...about her and about myself. Two things so foreign to me then. Something that seemed like it would have been a miracle in and of itself.

I knew my hope, long gone, would not be enough. Make believe hope would kill us both.

That night I made my first decisive choice of hope. If I was going to believe in a God, I didn’t want Him to be small. I didn’t want to whisper anemic prayers in my hollow hideaway.

I wanted to shout my cries from the highest peak to a God who can resurrect the walking dead and give radiant form to those who are vapors. The One who will posture the universe at such a time as this to make known through our story that He makes the sun to rise and the fog to dissipate, holes to be filled, hearts to beat His rhythm and the dirt that forms us to be purified.

I had been timid, a fool; afraid. My tribe was small: I was too frightened to reveal how shattered I was. Anxious of being rejected as a fraud. One had terrifyingly become three. Three had been agonizingly stretched to twelve. No. This cry would resound through ravines and scale cliffs. We needed echoes of hope to amplify our cry. We called them our 300. PlanA; I will hold to this hope and believe in nothing less.

And it came as a host of over three thousand angels. Seen and unseen. Known and unknown. It was not that my depression and despair had been found out but that I had been found.

I was ready to live or die trying. My now expansive tribe breathed when I couldn’t and beat when my heart wasn’t strong. They sang and shouted when I had no words. They rejoiced and cried when I could not feel. Their hope came flooding in -- into my phone, our inbox, our eyes and ears. It was living water filling the dry wells of my soul.

Our tribe brought joy back into our home. Food, play, friends, order. The light of hope began to catch the sparse dust of my faded self. Our tribe had written songs that pierced my soul and felt like holy healing for her: “Take this heart and show it how to beat,” “You’re the rhythm I’m beating in and all the earth can feel it, we are dancing to the sound of your heart. You’re the light that’s beaming in and all the earth can see it. You shine beyond the dark.” “I believe that your love’s in motion and it’s changing me helping me to see your light.”

I became a Genesis - formless and void but the Spirit hovered over the waters of the deep. God spoke and responded to our cry. She was getting better. I was getting better.

Our tribe marched with us to the rhythm of hope. And then I had my first hopeful day. A whole day. It felt so beautiful and I didn’t know if I’d have another one so I cherished it and buried it in my heart. My Friend told me, “Start collecting the hopeful days and soon you will have a whole pile of them.”

We all knew the length of the journey would be long and I would have a high chance of relapse after she was born. But after you have suffered a little while, He himself will restore you and make you strong, firm, and steadfast. And we made it to the end of the first leg. Kylie Michelle was beautiful.

And I felt God there that day giving me so many signs of his presence. From her painless entry into this world (God delivered her because I literally did nothing and felt no pain), to her panda warmer that I visualized in a prayer session a week before, to the doctor that said he felt something very powerful being there at her delivery, to her release from the NICU.

And as I held our little miracle and watched her cradled in the arms of our Tribe, my hopeful dust erupted into love. She belonged to God but had been entrusted to us and I would love her and fight for her unlike anyone.

And it seemed like I was through the trauma. Our tribe saved us; saved her, saved me. I had a long road of recovery ahead of me. But now I had faith, hope, and love inside me. I had been recast into a transcendent form.

And everything was new. I was like a wildfire inside my soul with an unbridled fiery exterior to match. And just as God loved me in my thousand pieces, he loved me unrefined and said you are malleable, let me lead you to where your light will never extinguish.

I remember telling God you can have everything! It’s all yours; I owe you everything! Which is easy to say when you don’t have much to offer coming from such a dark and despairing place that even you don’t want it. And some things I knew He’d give back; others I wanted Him to keep and take and it was like playing racketball with God. And then there were the tiny corners, the protected spaces. God needed it all laid before Him. God worked with me just the way I’m wired. You know--let’s make this efficient and productive. Go figure. And the pilgrimage began.

The lessons came hard and fast. So fast I could barely breathe from one to the next. It did not feel full of joy but I knew it was good. Let me teach you about anxiety, learn from me about freedom and independence, now responsibility, next envy, after that power, over here kindness, let's explore love -- a lot of love, now examine marriage, patience and friendship, disappointment, grieving, conflict.  Let us journey through health and healing, championing and prayer. Let's not forget self discipline and selflessness. Let me teach you about acceptance and grace.  Now we undo fear. Now to revisit suffering and joy.

What about rest!? When can I learn about that? You say rest but desire ease. Rest you find in Me as we journey. Peace wells in all attitudes.

.

And I’m learning to live in that peace. The things that once overwhelmed my broken mind just seem to exist at lower altitudes than where I have journeyed. I have collected my hopeful days and now I stand atop a mountain.

Surviving has not given us an easy happily ever after. Kylie still has ongoing concerns that keep us growing and stretching our trust and faith in God. We’ve worked hard to repair our family and have learned to press in to our deep and rich tribe. And me…

I walk by faith

for I have been frozen in doubt.

I rest in peace

for I have been overwhelmed by chaos.

I live in love

for I have been buried in fear.

I am captivated by hope

for I have been captive to despair.

Today is my Memorial Day. A beautiful Memorial of Hope.

My sister joist memorial piece

We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope. 

To Write Love on Her Arms is a nonprofit movement dedicated to presenting hope and finding help for people struggling with depression, addiction, self-injury, and suicide. TWLOHA exists to encourage, inform, inspire, and invest directly into treatment and recovery.

Fork in the Road

[Originally written 7/15/2015]

Hello dear friends and family!

We are always so grateful to all of you for your continued prayers for our family and our little Kylie (who has started crawling now, so I guess she's not so little). Kylie had her CT scan at the end of June. The results were good in that the vein they thought was small and underdeveloped actually looked anatomically normal, according to the radiologist. Praise God! So structurally, nothing is wrong with Kylie. What her doctor did say is that, because the scan ruled out lung structure as the cause of her high lung pressure, there is some sort of substance problem with her lungs, like something with the tissue or fluid.

This presented a fork in the road. The medical recommendation is to put Kylie on medication that she would take 3 times a day for many years (sildenafil for those curious--yup). The medication would increase the blood flow through the arteries in hopes to drop the pressure in her lungs. After those many years, she could possibly titrate off the medication or outgrow the dosage but it's not guaranteed.

When we inquired what would happen if we did nothing, the doctor said that as Kylie grows older, she may begin to have fainting spells or her heart may give out if she's fairly active. We're not really excited about either road. So we've decided to take the unbeaten path.

A good friend of ours recommended a Nutrition Specialist (Healthee Life) and she is going to work with Kylie and Suzanne (since's she's still nursing) to see if adjusting and balancing what they eat will eliminate the hypertension. It's not a guarantee, but it's a path we want to explore before committing to medication. They've already had their first appointment and came to the same finding that Kylie's lungs (and large intestine) have low energy. Kylie's been put on some mineral supplements to help her immune and digestive health as well as an herbal supplement to help with systemic bacteria. She's also not supposed to have sugar.

Suzanne's nutrition has altered significantly. She is no longer eating milk, any grain, or eggs which has been an abrupt, difficult transition. Going through sugar detox, carb flu, and caffeine withdrawal (because why drink coffee without milk or sugar?) with the three littles was quite a battle. So now we're on basically a paleo diet and at the beginning stages of finding things we like to eat and reworking how and what we shop for.

Kylie's cardiologist is out on vacation right now, so we'll hear from him after next week about whether or not he wants to continue regular Echos during this period.

We always know that Jesus is our God and we travel this journey for a reason. It has brought along people we may not have met, given us a connectedness with countless others, and increased the impact of our story. We pray, as we walk this part of our story, that God continues to amaze us through our little girl, who everyone says is the happiest and most smiley baby they've met. And that means so much to us, and we love and are so grateful for her.

We continue in faith, hope, and love!

-Ethan, Suzanne, Morgan, Sean, and Kylie-bear

We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope.

Heewon is the nutritionist that founded and runs Healthee Life

Bracing for a heart catheterization

[Originally written 4/30/2015]

Good morning, everyone!

Kylie has a big day coming up that we wanted to reach out and ask for prayers on. She's doing great in just about every way -- smiling, laughing, almost crawling, and generally being an adorable little girl.

However, she continues to have Persistent Pulmonary Hypertension (higher than normal lung pressure) and the tricuspid valve in her heart is leaking a moderate amount (meaning that blood is flowing backwards). Her cardiologist can't seem to find a reason. He even took her case to a meeting of all the Kaiser cardiologists, and they were all in consensus that she should have a cardiac catheterization.

Normally, this is done to confirm something that the doctor has already diagnosed, but as Kylie's diagnosis is unknown, this will be more of an exploratory procedure with hopes of finding a cause if there is one. They will be threading a tube through a blood vessel into her heart and lungs to take measurements and pictures. She will be under general anesthesia, and the whole procedure will be about 2 hours, while the catheterization and photos will be about 30 minutes.

The procedure is set for 7:30 AM next Tuesday morning (4/28). We would be most grateful for your prayers for the following:

-That the Spirit will be undeniable in that operating room. We know that God is in her story and there is power in her story. We think it's amazing that her story has reached all the cardiologists of Kaiser; something we never could have done. 

-For Kylie's safety and the doctor's skill. As the doctor talked about the procedure, he was honest that, as with any procedure like this, there are risks.

-For answers, wisdom and peace. That God gives an extra portion of wisdom to the doctor to read and understand the photos. No matter what the results, that we have a direction to move in and peace in that decision.

-Peace for Ethan and Suzanne as they wait in a waiting room.

-Childcare for the kids.

Thank you all so much for your love and prayers and support. You're part of Kylie's story, too!

Much love,

Ethan, Suzanne, Morgan, Sean, and Kylie

[followup]

Dear family and friends:

Thank you all so much for your support and prayers! The procedure went well and without complication. The doctors confirmed much of what they've been seeing on the chest echocardiograms that she's had in the past and they have our next step.

Her heart looks good and there was nothing surprising there. We are so thankful! The measurements of the pressure in her lungs was confirmed as much too high. They tried to give her a gas to drop the pressure and it had no effect. They did notice that one of her pulmonary veins (returns oxygenated blood from the lung back to the heart) looks small, like it's not fully developed. But because of the high pressure it was too risky to take pictures from inside as it could have spiked her

pressure to dangerous levels (we were thankful for that decision ).  

So, our next recommended step is a CT scan of her lungs and pulmonary veins in the next two weeks and we'll see what the radiologist thinks after seeing those scans. The Dr. feels like we've moved away from a cardiac mystery to a pulmonary one now.

Kylie is doing well in post-op and should be able to go home between 3-4 this afternoon.

Love and gratitude to you all, our Tribe!

Ethan, Suzanne, Morgan, Sean, & Kylie

Here we go!

"I did it, daddy..." Good job, kiddo. ❤ #perfect

Feeling so much better now that I've eaten!

We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope.