Bring it all to Peace

I've never been at so much peace before, during, and after an appointment as I was today. I chalk it up to two things really. The first is the power of prayer. I was so touched by all the people who continue to pray not only for Kylie, but for me (and the rest of our family). When someone has a disease it affects the whole family and everyone has to adapt to some degree. For those familiar with Strengths Finder, Adaptability is not in my top 5 or probably even in my top 20 strengths. But together, we are learning how to make our family work. And my own prayers and confessions to God have become a daily practice of just releasing the weight of a burden I have no control over and allow my brain to focus on the pieces of our life that I can take action on.

The second things is self care. It's a phrase that's been around and it's one I've pushed aside and struggled with all my life. But I've embraced it recently because it's imperative for my survival. The list is always so simply put, but the execution takes so much discipline. Eat well, No sugar, Sleep, Play, Pray, etc. I've been working with our nutritionist Ellen this past winter on addressing a chronic stabbing pain in my side that I've had for over a year. (My kids and I affectionately call them "the roars"). A lot of it we've linked to liver, adrenal, and stress problems. When I'm on a stricter paleo diet, the more I've been able to manage stress and the less pain I'm in. The other part of self care is people for me. I can't work through my stuff with a 5 year old. Being a participatory voice in a community is hard for me; I know it will get easier the more I do it.

Anyway, so prayer and self care helped prepare me a lot for today. I did shed a few tears on the way to the hospital thinking of the most likely outcome that we would leave with a bottle of medicine. But I wasn't afraid. I knew it would be hard, but I wasn't afraid. I could feel the strength inside myself and it was a beautiful feeling. God brought to mind Phil 4:13, "I can do all things through Christ who strengthens me" which is literally when I find myself in a situation, I am actively being made stronger through the experience when I am connected with God.

We heard good things at the appointment: her oxygen levels are great, her height and weight are great, her heart function is great, still not displaying any symptoms (which keeps her at a class I).

But, her pressure levels are still between 73-85 (a normal person even working out shouldn't be above 40). Even though the Dr. added "rock steady", it's always deflating to hear. Between December and now we had tried different supplements and an essential oil regimen that all had vasodilating properties and it still wasn't enough.

Even though I had hopes for improvement, God had been speaking to me and it's like I knew. The the heavens didn't cave, and the floor didn't give out. He is before all things, and in him all things hold together. (Col 1:17). I think it's not a coincidence God gave me those two verses and that "all things" is the same word. Each and every thing. And HE IS before all those things were. Before this journey, He was. And when I am in Him it all stays together. My raft stays together. My brain stays together. In the Hebrew the word for heart and mind are the same. My heart is together and at rest. At peace.

And then of course the Doctor throws the curve ball. About a month ago, we had made an appointment to see the head of pediatric cardiology, but it's not until the middle of April. It was for a second opinion on Kylie. Since it's so close to this appointment, the Dr. recommended we wait on the meds until we see him just in case he recommends something different. Say what!? But God's peace was even there. It was like he immediately spoke to my heart that we wouldn't be dealing with side effects as we travel this next week. And I left the office not feeling on pins and needles, not defeated, not even delayed. I have to admit it was kind of strange, but in a really good way.

So we get to repeat this whole trip in about two weeks. And I'm okay with that. We did talk through the medication if she would start it then. It will possibly take weeks or months to get her to a proper dose. We would keep titrating the medication up until they see a drop in pressure on the echo, or she gets significant enough side effects that she would need a different kind of medication. It will also mean more regular trips to the doctor at this beginning stage. So I know more of what to expect if that's the outcome next time.

She was also cleared to fly since the rest of her health is so good! Thanks all so much for your prayers.

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

Ellen is the nutritionist we see and runs Points by Ellen.

To be filled with more

It's been just over a month since our visit with the cardiologist. And the news was less than desirable. Her levels had gone from 59 to the 70/80 range; although the doctor said the elevation may have been due to the fact she was more active on the table. (It's hard to rationalize with a 14 month old that they should lay flat on the table). But the bottom line is her pressures did not go down.

That was hard. Hard to hear. Hard to swallow.

But we moved forward. We had decided whatever the outcome we would go get coffee (and whip cream for the kids) afterwards. And we did. I had a mommy playgroup to go to after the appointment. Which we did. And there my tears were embraced by a group of women who loved on my kids, changed diapers and made me tea. They hugged me until oxytocin (your brain's happiness drug) was released into my body. And that was new to me.

A therapist had told me that we need to grieve in community. I was like, "Uh, no." I'm plenty happy (or honestly, content to be sad) grieving in my car, in my bed, in my shower. And what I realized in that moment was that there is a place for grieving by yourself. But what grieving in community does is allow the grieving to have it's moment and then you feel the ability to move past and move forward more quickly. I had my emotional overload and by the end of the day I felt we could start looking at the situation logically and make some new decisions.

After taking the weekend to reflect and pray we decided to use the next 4 months before our appointment in March to get informed and seek support. When I was first told about Kylie's situation prenatally, the doctor's told me to stay off the internet. Rarely do people blog about success stories and you'll just freak yourself out. So we followed the doctor's advice.

But now we need to know more.  The doctors had given us some general information as we've visited over the past year. We're grounded enough in our reality that we want to know the ins and outs of this condition and what others are doing to combat and cope with it. There seems like a mountain of information to sift through, but in my first go, these were some key points I found:

• There are two types of PAH (pulmonary arterial hypertension). Primary PAH's cause is unknown (also called Idiopathic). Secondary is a result of another problem (like heart disease). Kylie has primary.
• Idiopathic PAH is rare with an estimated incidence of 1 in a million per year, though its numbers seem to be increasing.
• IPAH patients have an increase in Endothelin production which is what the body normally produces to cause blood vessels to tighten.
• The tight blood vessels between the heart and lungs raise the pressure in the lungs and make the right side of the heart have to work harder to push blood into the lungs. Because of this the right side of the heart is normally enlarged. You can have a right-to-left shunt where the oxygenated blood is leaking backwards into the right side of the heart because there isn't enough force to keep it flowing in the proper direction.
• Prostacyclin is normally produced in the cells of the body to dilate the blood vessels. Her production is low or not enough to combat the raised Endothelin production.
• Kylie is asymptomatic, meaning she does not display any symptoms of IPAH like fainting, dizziness, racing pulse, or chest pains. We only know she has it because an echocardiagram says she does.
• Most people with IPAH take medication to help open the blood vessels and relieve their symptoms along with making dietary and lifestyle changes.
• Allicin (a component found in garlic) seems to be widely acknowledged as a natural anti-hypertension agent.

So I'm in a state of making lists. Lists of questions to research, questions for the doctors, information lists, action step lists. Looking at my list of 7 bullet points I know I have a lot more to learn. But we're leaning in and not too proud to ask questions and ask for help. Please always feel free to send us things you read or find that could be helpful. And we just pray we find the time with two other children and regular life to give our research the time it deserves.

Kylie's nutritionists, Heewon and Ellen (Ellen is taking over Heewon's practice as she is moving out of LA), have started Kylie on the supplement Allicidin. Here is a site describing how allicin is created in garlic; I found it quite interesting. Since she takes it twice a day I laugh that I have a garlic baby, because she really does smell a little like garlic. 

 As this is the beginning of a new year, Ethan and I were trying to pick themes for the year. I told Ethan I felt a little silly and embarrassed by what I thought my theme should be...positivity. It's something that is not a default for me; I would go as far as saying I'm not very good at it either. But a vision came crashing into my brain of the pamphlets you often find at doctor's offices about horrible diseases and conditions and there always seems to be a photo of a happy family on the front. I want to be that. The family that is full of joy no matter what the circumstances. That I can be stronger than the everyday frustrations and set-backs. That I can find the positive in every situation and be grateful. To go against myself. Because, honestly, I love me a pity-party. And there just isn't time for those anymore.

So we are looking positively into 2016. A year filled with possibilities. We know that our God will not leave us where we are and so we run forward with hope that we will go amazing places this year, learn incredible things, and bring the message of Jesus where we never would have thought we'd find ourselves. We'd love for you to journey with us. We love and are grateful for all of you!

Heewon and Ellen, Kylie's nutritionists

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

We started doing themes several years ago after hearing a talk by our friend, Hank Fortener. People often don't keep resolutions, so instead choose a theme to frame your year around. Check out his site! He's an incredible human being.

Ellen is the nutritionist we see and runs Points by Ellen.

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.