Who do they see when they see you?

“Let them see you, In me
Let them hear you, When I speak
Let them feel you, When I sing
Let them see you
Let them see you in me” Song; Let them see you, JJ Weeks band.

When the road is hard and long and you have been waiting forever for your breakthrough, what comes out of you? When you are among other people, are you kind and patient and loving? When a friend is down on their luck, do you encourage them and give them a hand up? 

“If you love those who love you, what reward will you get? Are not even the tax collectors doing that? And if you greet only your own people, what are you doing more than others? Do not even pagans do that?  Be perfect, therefore, as your heavenly Father is perfect.” Matthew 5:46-48

If you allow this scripture to sink in, it will guide you in the art of loving like Christ. What risk is there, being loving toward strangers? If we know who we are in Christ and know that our Papa loves us, there is no sense of rejection. If we can’t even manage to welcome people from outside our church into the 4 walls we call church, how are we any different than the rest of the world? People go to church every week looking for the answer to the age old question; why am I alive? The physical building of the church can lead someone to that answer. But they have to feel welcome there. Church isn’t a country club for the elite saved folks, it’s a hospital for the once sick, in process of recovery! We are all in process. Never think so highly of yourself, that you have arrived, you are changing and evolving and growing just like the rest of us. I certainly don’t want to go somewhere, where I feel like I have to try and fit in. I already should fit in because we are brothers and sisters in Christ and that is enough. If you think there is more than that to qualify, then that thought pattern needs to be thrown out.

You have what it takes to be like Jesus, more than you may comprehend. You already are like Jesus, He lives within you, His spirit moves and breathes within you. Allow His warmth to wrap around others and love on them. Allow His peace to permeate wherever you are. Let His words leave your lips and fall upon the ears of those around you. The people around you are dying to see Him, you may be the only Bible someone reads. It is more in how you conduct yourself, than it is in what you say. The Pharisees were the holiest of holy but Jesus had bones to pick with them at every turn. They talked an awful lot and kept themselves quite cleaned up but the conditions on their hearts and their motives stunk. We don’t want to be found to be anything like them.

Throw love and kindness around like glitter! You’ll never run out and it doesn’t matter if you ever receive it back because Papa sees what you do and He will surely reward you well.

I hope this encouraged someone today. I know it’s a hard line but it hurts to hear about people trying out church and leaving saying they will never return. For someone who doesn’t know Papa yet, that’s a difficult situation. They went looking for something and allowed themselves to be vulnerable enough to go and somewhere along the line, they were let down. Heck, I’ve recently had some less than stellar church experiences but I know who Papa is, so I’m not discouraged. I’m sad about it, sure and it needs to change but we will continue our search for our new church home. It just won’t be the places we have already gone. I don’t want a red carpet but I do hope to see love for Jesus and love for your fellow believer. You can’t really have one without the other. Jesus did tell us, to love one another as I have loved you. If we miss that target, we’ve missed everything. God bless you all.

The breath of life

“God of Your promise
You don’t speak in vain
No syllable empty or void

For once You have spoken
All nature and science
Follow the sound of Your voice And as You speak
A hundred billion creatures catch Your breath
Evolving in pursuit of what You said
If it all reveals Your nature so will I
I can see Your heart in everything You say
Every painted sky
A canvas of Your grace
If creation still obeys You so will I” song: So will I, 100 billion x

I remember hearing song posted above and it captivated me instantly. Songs don’t really do that to me anymore, whether secular or worship music but this one caught me off guard. “For once you have spoken, All nature and science follow the sound of your voice.” That lyric in particular, catches me. If everything, spare humans are as God intended, and they still follow the sound of His voice, what was His initial instruction to us?

God spoke: “Let us make human beings in our image, make them
        reflecting our nature
    So they can be responsible for the fish in the sea,
        the birds in the air, the cattle,
    And, yes, Earth itself,
        and every animal that moves on the face of Earth.”
    God created human beings;
        he created them godlike,
    Reflecting God’s nature.
        He created them male and female.
    God blessed them:
        “Prosper! Reproduce! Fill Earth! Take charge!
    Be responsible for fish in the sea and birds in the air,
       for every living thing that moves on the face of Earth.” Genesis 1:26-28

I chose the message version for some of the wording— the words, being “responsible for the earth”, rather than the word “subdue” which some misunderstand for being domineering or controlling, treating however we wish, which I don’t believe was God’s intention. In the NIV, God instructs Adam and Eve to be fruitful and multiply. Multiply of course was make other little Adam’s and Eve’s but being fruitful is another, rather large subject. Jesus spoke a lot about fruitfulness. When God breathed life into Adam and also created Eve, they too, like the song, began to evolve in pursuit of what God said. And so we know how things fell apart quickly and so sin came into their perfect world God had created. They were cast out, to live in a sin shadowed land. Adam and Eve were the original light bearers. They could no longer bear that light because they invited darkness in. But let me ask you something. If Jesus restored the light by dying on a cross for us, taking up sin and death and even illnesses, isn’t our original relationship status with Papa restored?

Because of what Christ did, our relationship is restored to God. Our responsibility here is to be fruitful (expand the territory, bear the fruit of Christ) and multiply in number and also take care of or be responsible for the earth and all of it’s inhabitants. Christ lives within us, we ought to bear the fruit of Christ. We are responsible for the planet, one rather large goal of ours should be to reduce waste and our carbon footprints. We are responsible for animals, we should take care to not slaughter them to satisfy our appetites. (Then God said, “I give you every seed-bearing plant on the face of the whole earth and every tree that has fruit with seed in it. They will be yours for food. Genesis 1:29)  This place, these animals, these people aren’t “things” that we can do as we please, this is our responsibility to steward it well. I feel like this is often a subject many won’t approach because it is a subject people become very passionate about or can be viewed in other ways or in other versions, the wording is different. Think about it, we were restored to our original plan for relationship with God. God walked in the cool of the evening with Adam, they spoke, God knew Adam and Adam knew God. You could say they did life together. When God looks at you, He sees what His Son did, not the darkness that broke out and cast it’s shadow over Eden.

What is fruitfulness then? Fruitfulness is lighting other peoples torches whose are still snuffed out. It is demonstrating your identity through love and action.

We all know the fruits of the spirit from Galatians 5:22-23,
“But the Holy Spirit produces this kind of fruit in our lives: love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control. There is no law against these things!” This is merely an outline of fruitfulness. Bearing fruit is so much more. It isn’t just a plan that works out so that you can glorify God. It isn’t just sharing the gospel with someone. It isn’t just filling up a backpack for needy children at the start of the school year. It isn’t “getting people saved,” or moving in the gifts of the spirit. These are great things, I am not speaking against them, I am saying they are not just these things. It is a lifestyle of never ending heavenly expansion, knowing that everywhere you go, you bring the kingdom with you. That even in your darkest hours and on your worst days, you still live and breathe Christ crucified and what He came to restore to you. That even when life squeezes you, Jesus still comes out. The hopeless need to see hope. The loveless need to feel love, not judgement. The lost need their footpath lit for them because after all someone else did that for you at some point! The Holy Spirit with produce these fruits for you. You need only yield to Him. How else can we be enabled to live like that, still having hope in the midst of trials, other than by the power of God? Other people need to see it, this is the kind of fruit people need to see. This is the kind of stuff that make people wonder why you’re so different than everybody else. Allow the Holy Spirit to work this within you.

We have a job here, a directive. Jesus was the exact representation of the Father while on the earth, our job is the same. He handed over the keys to us when He left, then sent His Spirit to give us the ability. There is nothing that is truly fruitful that we can do apart from the Father. Our world has been turned into a mess because of man’s perceived notion of fruitfulness. Man has lined his pockets with the monies made from his “fruitfulness.” It is high time we get our heads screwed back on straight and pick up where Jesus left off. We don’t have another earth to run to once this one is destroyed. If you think animals voluntarily go off to the slaughter and not cry out when they are killed, you are sorely mistaken. If you think someone else will make up for your rudeness, you’re wrong. Let’s love and respect everyone and everything because each are a gift from God. When He originally created everything, He said it was good. It is still good, we just have to get back to treating it like it is good, treating everything and everyone with love and respect.

Your relationship with Papa has been fully restored, there was no part of it that He didn’t take account for or miss. Let us live accordingly. I do know, this life, this walk with Jesus is a life long process. It is a day to day, sometimes minute by minute thing, matching His steps, one at a time. If we don’t have revelation about who we are called to be, then how can we, “Evolve in pursuit of what You said?” If we are uncertain of what He said, He left behind an entire book. And if that isn’t enough, He sent His Spirit. The wrong things begin to repulse us after a while, whether it is thinking patterns or habits. We no longer fit in the old mold from which we came, it’s terribly uncomfortable going back. So, let’s not go back anymore, let’s continue to move forward and evolve. Christ by His spirit will enable us to do so. Oh thank you Father that I am not who I once was! Oh friends, doesn’t that feel good? You have been restored. You are redeemed. You are made whole. You are dearly, dearly loved!

The ebb and flow of life.

“On the last and greatest day of the festival, Jesus stood and said in a loud voice, “Let anyone who is thirsty come to me and drink. Whoever believes in me, as Scripture has said, rivers of living water will flow from within them.”By this he meant the Spirit, whom those who believed in him were later to receive. Up to that time the Spirit had not been given, since Jesus had not yet been glorified.” John 7:37-39

We have been in California for 2 weeks now, there are two things that I feel Papa in really working into us while being here so far. Trust and rest. We are foreigners here. I can count on one hand how many people we know or have met. We trusted Papa to get us out here and we will continue to trust Him to reveal our purpose here too. It was such a sudden move, He blew the doors open just as we had stopped considering a move across the country at that moment. How does a family like ours integrate ourselves into a new community, meet new people and make new friends? If there is any one thing I can take away from the entire moving and transplanting experience is, nothing can be rushed.

I had a lovely picture the Lord brought to my mind this morning as I was laying by the pool and praying. I saw a rocky terrain with water flowing through it, winding and turning freely through the rocks and pebbles. But then the water came upon some larger rocks and got an extra surge and powered right over them with no effort. I felt like the Lord was highlighting this to me today. Here is what I believed it meant for my family and possibly for you too.

There is a saying in this life that I have heard many times; just go with the flow. The trouble with that flow, is that it may be headed the wrong direction and from my experience it usually was. You certainly don’t want to have a damage plan for your life but a plan for hope, to be prospered and for a future, just like Papa says in Jeremiah 29:11.

When you are living in the flow of the Spirit, it doesn’t matter where you are or who you are with, you will succeed. It does not matter what obstacles are in your way, the Holy Spirit flowing within you and through you help you power through. Nothing is too hard for God. God is not afraid of what you are facing. He is aware of the diagnosis. He knows about all the bills; the heartache, the dreams that died, the foreign land that you are in. If the Holy Spirit is within you none of these momentary troubles stack up against the power and the strength that raised Christ from the dead.

If I am flowing with Him I have nothing to fear. It’s at the moment that I step outside of His flow that I have exercised my will, inviting in fear and all of his nasty friends. If I am flowing with the Spirit is there any challenge I cannot take on or any task too great? You see, it is no longer I who live but Christ who lives within me and was He ever impressed by fallen or broken circumstances? No— and neither should we. Jesus walked this earth, just like we do each day but He lived from the heaven to earth. We have the ability to do the same!

“And God raised us up with Christ and seated us with him in the heavenly realms in Christ Jesus…” Ephesians 2:6

This is us friends! We are seated with Him. We have His spirit within us to conquer whatever this life may throw at us! He didn’t get ruffled about everything. He didn’t tailspin when He was having a seemingly bad day, He flowed with Papa right through His days. He ushered in heaven wherever He went. Jesus went with the flow, He went with the heavenly flow. He didn’t “fit in,” He stood out, we are called to stand out, to be in this world but not of it, meaning not an extension of it. This world isn’t meant to make it’s mark on me, I am to make a mark on it. This world and it’s ideologies are a shadow of the world and life to come. We have found our little corner of heaven here in California but we know that this isn’t where we kick our feet up and consider ourselves as having arrived. I don’t know exactly what we are doing here but Papa does and we know that He will reveal all the ways we can bring heaven with us wherever we go.

“Love has been perfected among us in this: that we may have boldness in the day of judgment; because as He is, so are we in this world.” 1 John 4:17 NKJV

Oh friends, let the love of God flow through you everywhere you go! Know that His Spirit flows within you and makes all things possible should you just trust Him. Know that His heart toward you is good, His thoughts about you number more than the grains of sand. His love for you is more than you are able to imagine. Just ask Him how much He loves you! Allow yourself to follow in His flow, no thing that you encounter will be too difficult. He has no fear of the things that lie before you, therefore you can have confidence that as long as you are hidden in Him, you shall have no cause to fear either. I pray this blessed someone today!

Supernatural love

“But in knowing and loving God, I am released to a measure of supernatural love that is unattainable apart from God.” Bill Johnson

Our little family circle has a wealth or challenges. Challenges that someone who is superhuman could manage and endure. I am well aware of my short comings as a mere human, so every day I look to the Lord for my strength. There are days I think I have it handled and run out ahead of Him, I am quickly reminded that He is the only one who is equipped to put the fires out. Fortunately, those days are getting to be fewer and further between because I think my stubborn butt is getting around to realizing that trying to take a short cut winds up turning into a long road.

Put your hand on your chest. You feel that? That’s a gift. We wouldn’t have a heartbeat if it weren’t for Him. Why on earth would I ever think I could love others effectively without His supernatural ability working within me?

Agape love is what we are called to, it is a persistent, unconditional kind of love. It is the highest form of love. It is the love of God for man and of man for God. (source Wikipedia) I love that part of the description above, persistent and unconditional. Unconditional of course literally means; without condition. Conditions being those walls and limitations I have been referring to in prior posts.

I will share with one of my favorite stories about Jesus showing agape love to a man. When Jesus came down from the mountainside, large crowds followed him. A man with leprosy came and knelt before him and said, “Lord, if you are willing, you can make me clean.” Jesus reached out his hand and touched the man. “I am willing,” he said. “Be clean!” Immediately he was cleansed of his leprosy. Then Jesus said to him, “See that you don’t tell anyone. But go, show yourself to the priest and offer the gift Moses commanded, as a testimony to them.” Matthew 8:1-4

A leper was an outcast, or was cast out of a community for being “unclean.” It was a slow and painful death, where the victim was littered with sores all over their body. If for any reason a leper left their camp and were to walk anywhere near where everyone else frequented, they had to yell “unclean” as they approached other people. I can’t imagine how lonely it was to be this kind of outcast but also humiliating. This man, whoever he was, was someones son; possibly someones husband or father and friend. But he was sent away because of a medical condition. He was likely missing the sensation of physical touch, affection even. Jesus touched him to make him well. But instead of Jesus becoming unclean (which was believed to happen in that day) Jesus made the man clean. So, Jesus in a simple act of loving this man, fulfilled many things he desperately needed. The need of physical touch; love, acknowledgement, acceptance, restoration and willingness. These are just a handful of the things that jump out at me. This is supernatural love!

I have not touched a leper and seen them made clean but I have the opportunity to love and serve my family every single day, outside of my ability. Because the demand on me, is far outside of my ability. I am not a doctor or nurse but I am called to be one every day. I am not a chef but I am called to be one. I don’t have the capacity to keep track of the hundreds of things I need to on a daily basis but I know the Holy Spirit will prompt me. In every day and in everything I do, I know where my strength and ability comes from. I am the mother of a child who physically relies on me for her movement. I am a small woman whose back is in terrible shape but the Lord upholds me every single day. Agape love begins at home. It is possible because I am willing. If I say I can’t do it some days, it is because I won’t, I have allowed myself to become unwilling.

“If you want to change the world, go home and love your family.” Mother Teresa

Love those around you without condition or motive. Just love them where they are at. Love them even if they can’t repay you. Love them the way Christ loves us. You can’t lose. Even if they don’t love you back, you don’t lose. Because getting them to reciprocate love isn’t the objective. Love others as though you have never been hurt, love them openly and unafraid. Because perfect love casts out all fear and perfect love is only found at it’s source, Papa.

It was Good Friday today. Today we think on the ultimate sacrifice, Jesus having paid the highest price, hanging on a cross for all. He didn’t just die for those who believe, He died for all, no exceptions. The Roman soldiers who spit on Him and laughed at Him, He died for them too. The lepers; the addicts, the outcasts, the poor, the rich, everyone. Jesus knew His Father and knew the Father’s heart, Jesus knew where His strength and ability to love came from. Jesus was the exact representation of the Father. Apart from God, we do not have the ability to loves others in this way. We get in the way of loving in such a grand way.

It doesn’t matter if you don’t agree with the other person or you don’t hold the same values or belief systems. Love them. It doesn’t matter if the person even likes you, love them. Love covers over a multitude of sins.

I hope this has blessed someone today and possibly challenged you too. We are called to be a light in this world, not rule book keepers. Just love people, they will see Christ in you.

Put down those lenses!

“Life has no limitations, except the ones you make.” Les Brown

Through whose lens do you view yourself and your life? Where did your assessments come from? From the moment we come out of the womb, generally the people around us have a lot to say about us. “He looks like his dad; she has her mothers eyes, shes going to be a writer like her auntie, he has two left feet!” Most people mean no harm but this is the beginning of what will shape us. The words you speak over a person are more powerful than we give them credit for, they become the audio that plays in a persons mind.

Was there ever something that you really felt passionate about doing but were talked out of because someone else said it wasn’t for you? Or maybe you tried and didn’t succeed as well as you had hoped, then quit and thought that person was right? Not doing something for fear of failure is living in a place of lack and we have no reason to live in lack because with God all things are possible. How can we hope and dream for the impossible? Papa God has infinite resources. He doesn’t look at your bank account or your abilities. If He has placed a dream in your heart, He is going to be the One to make it possible.

When you look in the mirror, do you see you for who you really are or who someone else told you, you are? Let’s go a little deeper. If you see yourself through someone else’s lens, you have to realize that they also wear other people’s lenses too. So their view of you wasn’t clear in the first place. It is kind of like the concept of ancestral baggage. Picture this, each declaration over me is a pair of glasses, one that fits neatly right on top of the next pair. After while, I am wearing numerous pairs of glasses all at once. Do you think that when I look in the mirror I can see myself clearly?

Now, let’s take them all off shall we? What am I left with? Me. Well… who am I? And who would have an accurate answer about who I am? You know where I’m going to go with this! Papa! He has all the answers and He has the most wonderful things to say about you! You can find many of those loving words of affirmation in the Bible and if that’s not enough for you, ask Him, He would be happy to share how delighted He is in you.

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.'” Jeremiah 29:11

“For You formed my inmost being;You knit me together in my mother’s womb. I will praise You, for I am fearfully and wonderfully made.” Psalm 139 13-14

“For he chose us in him before the creation of the world to be holy and blameless in his sight. In love  he predestined us for adoption to sonship through Jesus Christ, in accordance with his pleasure and will— to the praise of his glorious grace, which he has freely given us in the One he loves.” Ephesians 1:4-6

“… but whoever drinks of the water that I shall give him will never thirst. But the water that I shall give him will become in him a fountain of water springing up into everlasting life.” John 4:14

“So God created mankind in his own image, in the image of God he created them;
male and female he created them.” Genesis 1:27

“The Spirit himself testifies with our spirit that we are God’s children.” Romans 8:16

“For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.” John 3:16

“You are the light of the world. A city set on a hill cannot be hidden.” Matthew 5:14

You’re quite remarkable you know, He had you in mind for a very long time. You were made in His image, you are a light bearer, you are a child of the Most High. Ask Papa what He thinks about you, He will tell you of all the things about you that delight Him. He adores you. He sees you as perfect, not your perceived flaws or limitations. In Him, you are limitless. Ask Him to see yourself as He sees you, He is, after all the only One without a distorted lens. There is no corruption or darkness within Him. God is perfection, He is love. He is Papa God, our remarkable creator. Learn to love yourself and others the way that He does.

I hope this blessed someone today, much love friends.

Over coming PTSD and medical related anxiety.

“But first seek his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matthew 6:33-34

I used to sleep with one eye open. We had a very long hard road when Lily was born and there was no end in sight. On her 5th day of life she was put on oxygen, we were told her lungs were underdeveloped even though she was full term. Immediately upon birth she had already been whisked off to the NICU and had been experiencing an extended stay in the hospital, with the newest development, her stay was extended. Sitting in the corner of that room holding her, there were alarms going off everywhere, a lot of the time. Sometimes it was her, sometimes it was other babies. They don’t call them alarms for no reason, when it is your child panic rises up within you. I felt as though my heart was going to jump out of my chest every time her alarm went off. All I could think was oh dear God, please tell me it isn’t something major.

Her oxygen saturation would drop out of no where and for no known reason. To tell you the truth, it didn’t even make sense that her lungs were underdeveloped either but we went along with the doctors as they seemed to know somewhat, what they were doing. Oh the alarms my friend… I’m holding my dear little one, trying to bond with her amidst all the noise and chaos and trying to allow my mommy instincts to kick in when; beep beep beep beep beep. Not a quiet beeping but a long terrifying one. It was awful.

Lily only spent 10 days in the NICU but she was set to go home on oxygen. I fought to get a pulse ox sent home with us, as they weren’t going to send one. We spent one night in the parent suite with her to do a test run. The nurses were just a short way down the hall from us. I laid in bed while she slept with one eye open. I was watching her oxygen saturation bobble between 98% and 87%, I knew her alarm would sound if she dropped to 85%. So here is where it began. I was waiting for her to dip that extra 2%. She had done it many times during waking hours, why not while asleep too? I was terrified to try and fall asleep and have that alarm wake me up. It was an awful sound. I couldn’t sleep. I didn’t know how to, it was as though I forgot. In a matter of a few days a little machine that was monitoring my daughter had slapped its terrifying handcuffs on me, I was subject to the machine now. In an effort to get some shut eye, when she woke for her next bottle and diaper, I zipped her into my favorite mommy hoodie, reclined in the rocking chair and closed my eyes. I slept for 15 minutes.

When we finally did take her home, the homecare medical team met us at our house and showed us how to use our new equipment. We had ample tanks of oxygen, plenty of canulas and plenty of line to stretch across the house. Oh yes and of course a pulse ox to alert us should her numbers take a dive. We were all set right? Ready for success! Wrong. I didn’t sleep. I couldn’t sleep. I watched those numbers for many nights, it became a game. Were they going to go up again or move down a percent? Finally I reached my cracking point, I broke emotionally from sleep deprivation. My husband and I made an agreement to take shifts. Oh my gosh, what a relief! He stayed up all night with her so I could sleep and I got up bright and early in the morning so he could go to bed. We finally figured out the sleep thing.

I had to start doing normal stuff again like leaving the house. Panic would set in. I wasn’t afraid to leave Lily with my husband, I was afraid to talk to people. I didn’t want to talk about what I had just been through. What else was I to talk about? If I saw anyone I knew, they would know I just had a baby and ask how the baby is doing. So there was that anxiety. The next one was far worse, going to stores. If I managed to not feel like I was going to vomit anymore and mustered up the courage the step over the threshold of the store, the first thing I was bombarded with was people noise and the beeping from the cash registers. Deep breaths as I moved through the aisles. I would hear a loud noise and jump, my heart rocketing up into my throat. I was so grieved that I was experiencing this, I beat myself up about it for quite sometime, having a pep talk like; hey, you are a healthy individual who is also very outgoing and social, what the heck is wrong with you!? I just couldn’t do it. My dear husband took over on grocery shopping for a while. I drew the line when I came home sobbing from the store one day. It wasn’t just PPD for me, it was all of the above. It was the death of the child we thought we were going to have. It was PTSD; it was anxiety, depression, grief, sleep deprivation… I could hardly eat!

I think I have painted you a clear enough picture, I hope. What did I do? I began to say no. I began to do it scared. I began to get back out there and try to socialize. I said no to the thoughts and feelings that accompanied all these diagnoses and reaffirmed who I am in Christ. One of my favorite scriptures that I clung to; “For God has not given us a spirit of fear, but of power and of love and of a sound mind.” 2 Timothy 1:7

I cannot take credit for the changes that were made within my mind. God did all the work but my part in it was handing it over to Him. I couldn’t do it. It was well above my ability to take good care of a sickly baby and take care of myself. I was so depressed and distraught, I didn’t cook for 6 months! If you know me, you know I spend a lot of time in the kitchen.

I reached a place in my journey where I realized how severely broken I was and I wanted change, I did not want to live like that anymore. I did not want to jump when I heard a loud sound. I did not want my heart to feel like it was going to beat right out of my chest. I needed to be calm first, for myself but also for Lily, children feed off of our energy. I didn’t want to be basket-case mom anymore. It was painful physically and I felt like it was killing me. So, I gave it to Papa and little by little He helped me through the alarms and the noise and talking to people again. He helped me get free.

Lily was cleared to get off oxygen at 6 months of age. I kept the pulse ox on her at night for a while just to be certain and eventually when i felt like it was time, placed it in the closet. That was a huge faith step for me. Little did we know we weren’t done with alarms. Lily has spent many nights in the hospital hooked up to all kinds of monitors. She came home on TPN (total IV nutrition) last summer before her g-j tube surgery. The pump on the TPN had an alarm. The pump for her gtube has an alarm. Now my husband and I have a phrase that we have shared with others on how we handle the alarms, we say— it’s not oxygen and we chuckle knowing we already tackled that one.

I know this is a long post but I also know someone needed to read this. I know there are folks out there suffering in the grips of PTSD; anxiety, medical trauma, social anxiety etc. There is a way out. I don’t know if you have a relationship with Papa God but He is an amazing Father that deeply cares about you and your mental health. He didn’t cause your trauma. I could have easily blamed Him for Lily’s condition, citing, that if He was such a loving God how could He ever allow something like this to happen to an innocent child? (or one of the many other atrocities in the world) I do know He didn’t cause it. We live in a broken world but as light bearers in this world we have the privilege and ability to bring light to dark circumstances. I have Christ within me and He is the light! He is the reason why I have any hope at all! Friend, I hope this blessed you. If you are struggling, please reach out to me or to someone else, there is help and His name is Jesus, I will happily tell you all about Him. God bless you all.

The medical carousel

“Let food be thy medicine and medicine be thy food.” Hippocrates

When I became a mom again, I didn’t picture myself stepping into the shoes of hardcore medical advocate. Nor did I think it would be such a fight to ensure my daughter gets what she needs and avoids what she does not need. For those of you who are not familiar with myself or my family and have had no introduction to my former blog sites, I can give you a quick run down.

Our little princess was born in March of 2014 with a rare chromosome abnormality called partial trisomy 9&12. So rare that she is the only one in the world with it. We were given generalized ideas of what to expect with Lily but no solidified answers. So, for the last 5 years we have been blazing a new path in the wild Amazon of medical phenomena. Lily is 5 but is said to have the developmental capacity of a 4-6 month old. In fact, just a few weeks ago she spoke the most blessed word (her only word) I had only dreamt of hearing, Mama. I cannot put into words the joy that filled my heart upon hearing her say Mama.

After numerous surgeries; many specialist visits, appointments, therapies and hours spent in frustration and tears, I feel like we are mostly where we have always been but it looks a bit different. Lily stopped eating last summer entirely. Her reflux was so violent that she lost her desire for food. We had been told by many doctors that she did not have acid reflux or GERD but after having a visit with the top reflux specialist in the world, it was finally confirmed, the very thing I had been asserting all along. We were left with no other choice but to have a j-gtube put in her stomach. There was a part of me that had felt like we had failed her, we couldn’t make the reflux stop so that eating by mouth was enjoyable. Let me tell you, we had tried everything imaginable! I cried out to God on many occasions leading up to executing the inevitable. It was either follow through with surgery or helplessly continue to watch her health decline. Of course we did it. It was terrifying but a relief at the same time. We weren’t going to go through the daily struggle anymore of whether or not she will eat her food.

Lily has a tether again. Much like she did when she was on oxygen for the first 6 months of her life. The tether looks like a leash to me; walls, constriction, limitations. I want to cut the tether. Not metaphorically but truly get rid of it. I want to cut the tether to the insurance companies who, if her stuff isn’t billed right or the deductible isn’t met decides not to ship her life giving food and other medical supplies. Do you realize how disgusting that is? Insurance companies decide who gets to live based on what you can afford or if your prescriptions are billed correctly and if not, you don’t get what you need? That isn’t medical care, it’s control and a very sick way of playing god. And I use a lowercase g because there is only One true God, not mere humans who thrive on policies and quotas rather than helping innocent lives flourish.

If I could only express adequately what special needs parents go through just to get their kids what they need I’m quite certain your jaw would hit the ground. I had all of Lily’s deliveries lined up about a month before we moved out of the Midwest. We came to California to get well. We came here for the more consistent weather; the fresh produce, my husbands cancer treatment center (I’ll be writing about this soon) the ample sunshine, the list goes on. So far, honestly, Lily seems happier here. She was effected terribly by the weather systems that moved through Wisconsin on a daily basis, the temperature and barometer swinging wildly every single day. She and I both are human barometers, we both can feel it in our heads when a new pressure system is moving in. It’s not exactly a blessing but I am glad to say, I have not had a headache since being here and I don’t have any reason to believe she has either.

Cutting the cord isn’t going to be easy but we need to regain control of Lily’s health and health plan. I am indebted to the medical staff in Milwaukee for the life saving surgeries they performed on her, she would not be here without them. Now that we have the ease of being able to feed her without the worry of whether or not she will eat what we offer her, it is time to reconfigure her food intake. We need to get her weight back up. For the last 4 months she has been on juice during the day, reaching 68mls an hour. I am hoping to transition her to bulk feeds via a syringe. I had attempted it before with little success due to continued reflux but now that her reflux has drastically improved because of the pure fresh pressed fruit juices everyday, I think it is time to try again.

This isn’t where I saw myself or my family. I never thought I would have to be a medical expert on a bunch of stuff more people have never heard of or been exposed to. I never thought I would be researching the things I have had to research. But I don’t think you can find freedom in all of this until you go through the various stages of grief and acceptance, eventually moving onward and upward. You can’t just camp there. We didn’t ask for this, nor did Lily. Lily depends on us to not camp in our sorrow and to make decisions that may not please all parties involved. I have done my share of arguing my position of why we do or don’t do certain things on Lily’s behalf and I’m not afraid to continue to do it either. I will do what is in her best interest even if no one else understands or supports it. One day when I leave this world I will give an account, that is the only thing I am concerned about. Not what this or that specialist says. I have often come to the conclusion that if it doesn’t make sense to the majority of the people around you, it is Spirit led. I’m sitting here shaking my head with a smile on my face. It’s true. If it’s impossible but you can see the outcome, it’s God. Sometimes you can’t see the outcome but you know that you are supposed to do something a certain way, go, do it. Don’t be afraid, God will guide you. Rely on Him, He is already where you are headed. THAT is comforting.

This is a long hike, we reach plateaus and resting places but we haven’t arrived yet. We just keep seeking Papa’s face every single day to give us the next move to make. I am tossing out my preconceived notions and ideas, the way I think everything should look. The vast majority of my pain has been grieving over what I thought should have been. There is freedom in taking things as they are and relinquishing those things to God to bring good from them. He has no intention to harm us or punish us for some unrepented sin. You died and were raised with Christ a brand new creation and your goodness is because of His goodness. We were meant to be free in this life, we don’t need to be enslaved to rules; fences, limitations and ideologies. All things are possible through Christ. God is Lily’s healer, Jehova Rapha! He put the medicine in the food. He had a plan for all the disease we would encounter here in our lifetimes. He foresaw everything. We just need to return to that plan. It isn’t a plan to ruin your mealtime fun and enjoyment, we just weren’t meant to eat many of the things we do eat. Our household is realigning itself with the original plan and within it, freedom. Many blessings friends, I hope this blessed someone today.