Say it ain't so, Allume was a go.

I learned that my three day getaway to a christian women’s blogging conference was going to be a little heavier then I expected. I knew that several of my favorite authors would be there and that we would be talking about Jesus and Blogging.. But I didn’t know that I would once again , just be off the cuff of having a sick child emerge from the hospital to hospice. I didn’t know I’d be so sleep deprived that I debated a coffee IV and just staying in bed the entire time to catch up on sleep, that i would actually learn more about how to deal with losing my ideals then on blogging.

Sitting in a room with publishers, bloggers, published authors, non profit owners and entrepreneurs… I started to think that maybe I should just go back to bed.. That I didn’t belong there…What I learned was that underneath all these titles , were women just like me. Women that who had come undone and were just trying to please God, raise children, use their creative gifts and fit into their skinny jeans without spilling out the top too. They were ready to cry and pray and laugh and praise. We were all the same but gifted in different ways, looking for a way to unite together our creative dreams of sharing the word of God.

I signed up to go to this conference earlier in the year, when Walker was appearing to get better and I was trying to find something that was uniquely mine. I almost didn’t go since he has had such a crazy past month and was carrying the world..but I did.. and I am pretty sure it saved my life. I was at the point of exhaustion and feeling depressed once again.

I was lost and confused on the role that God had asked me to play. How could I have any purpose now but to keep Walker alive? How would I fit anything else in? If I had a nurse caring for him, what was I supposed to be doing? Do I need a job? I know I need to get out of here but what does that mean? I literally, yes I know, Literally… Didn’t know my up from down. I was a hot mess.. My name is jonas.. I was going crazy.. wait..

I had quit my job teaching 5 years ago, to be a mom.

I had stopped my photography business 4 years ago to be a mom for the second time.

I had started a moms group 3 years ago to share my love for all thing mommy and to help other moms not feel alone.

I had attended a homeschool conference 2 years ago because that is what I was going to do with my two boys and next 13 years of our life. ..

But all that stopped 1 year ago when Walker got sick.. and now what do I do? It’s been 15 months of just surviving and not feeling like I could make any personal moves.

The past few days, I was faced with all these questions.. You ask questions when you meet new people.. Then I ask myself questions.. Here is what I processed, in the garage..

Melanie Dale, she wrote Women are Scary and has a small part of my heart for mashing things up.. Any of my former students will understand my obsession with taking first and last names and creating new names.. We are kindred spirits..

What do you want to do with what God has gifted you? My first thought… Do I have that choice? Because I have felt trapped.. I have felt like I don’t get to choose. I do get to choose? Wait, did God tell you that included me? At first it felt like this information was for everyone else and I was just eating a salad with them. Then, something happened and the holy spirit started to move within me.. This was for me too.. My life still had a purpose.. My life still had choices. This might seem dumb to you or dramatic… but when something life altering like this happens…it has the ability to erase all that has happened before… I had somehow forgotten or suppressed my life before this. I wasn’t sure how I fit in..

But it was my bondage breaker, buddy holly or mary tyler moore.. or someone with glasses like me..  I do have a life to live apart from Walker’s illness. It will be apart of it but it exists. I have come to this conclusion before but not known a direction for me to go..I still don’t know specifically but I know that God and Art and Writing and humor will be apart of the journey. I have a lot of praying  and reading to do.

They gave out free books every time the elevator made it to the top floor, so I have a bookshelf of inspiration to start on.  I have so many thoughts and ideas swirling around in my mind that I have spent the past 24 hours in a download phase.. I am trying to process it all and savor every word that was spoken. Every relationship and greeting that took place.. I don’t want it to end. How can I carry this over into my actual life? So, I wrote down quotes or phrases that I heard that I need to remember and be inspired by. If you have stuck with me this far, then please have a cookie and here they are in case they can inspire any of you.

“If you want to change the world, you have to change your world first.” -Logan Wolfram

“Don’t become so consumed, that you neglect to see the importance of others around you.” -Logan Wolfram

“Our sphere of influence grows when our capacity to spread truth of Christ increases” -Logan Wolfram

“Sacrifice is embedded in following Jesus “-Austin Channing Brown

“Resist the fear, you are allowed to be afraid.” -Austin Channing Brown

“You have to use what God has given you.”-Austin Channing Brown

“It doesn’t have to be perfect to be beautiful” -Myquillyn Smith, The Nester

“God is most glorified when we are most satisfied in him” John Piper

“Our creative drive reflects the creativity of God” Ruth Simons, Gracelaced

“Preach to yourself about who you are in Christ” Ruth Simons, Gracelaced

“Mind your own business , live a quiet life”- Ruth Simons, Gracelaced

“REST is WORSHIP”- Ruth Simons, Gracelaced

 “and to aspire to live quietly, and to mind your own affairs, and to work with your hands, as we instructed you,” 2 Thess 4:11

“Lord, cleanse me if you find anything wrong” Chrystal Evans Hurst

“Learn to live well when nothing is working”. -Chrystal Evans Hurst

“Don’t be so distracted by the disappointment of the dream that you can’t enjoy the details.” Chrystal Evans Hurst

“Success looks like, faithfully obeying what God has called me to do regardless of the outcome”- Sarah Mae

“We are not responsible for the outcome or in control of the end”- Sarah Mae

Psalms 46:10 “Be still and Know that I am God.”

“What we sow in the stillness will reap good.”Sarah Mae

“Listen to your people. Don’t lose your kids hearts to minister to the many. “-Sarah Mae

“Embrace your season-“Sarah Mae

“In the stillness, what wakes you up and what do you really want?” -Sarah Mae

“Live an interesting life. Get up , get out and go live your life-“Melanie Dale

“Dump everything in and trust that God will find a space for it.” -Melanie Dale

“Don’t call it ministry, call it Tuesday .” -Bob Goff

“Dream big, work small. ” Melanie Dale

There will be more to come on what I do with all this inspiration.I am still trying to mull over all I learned and dig into my books to start carving a new path out of this current one. So grateful for my sweet friend who towed me up and back to Greenville and for our Weezer jam session on the way home.. I’ve come undone and yes those were all Weezer references for my music loving friends.

It just isn't fair is in town

It just isn’t fair is in town. Yes, I know. I’m writing about the fair, how lame, but trust me, there is some meat here. I’ve been in love with the fair since second grade. I still remember riding in the car with my best friend and her parents on the way home from the fair. I remember the song on the radio and how happy I felt…”Girl I must warn you, I sense something strange in my mind”..  Poison..Do you remember the beat? I’m sure you do because that’s what we told our parent’s we liked about it..  The coolest thing next to all the lights and music was our matching yellow t-shirts with our picture on it. The technology of the 1990’s was marvelous but also not sure that it has changed much in putting photos on a t-shirt.. The text was even better because it said something about us being angels. I’m sure her parents had no clue the impact they would make in my second grade mind but I still remember.. I still remember thinking I was an angel that karaoked to Michael Jackson.. Specifically his “It’s black, It’s white.. or “Heal the world, make it a better place…” I was pretty cool with my two pairs of socks and scrunchies.

Why does this memory stick out to me? What is it about the fair that makes me feel all giddy inside? I will tell you that over the years, that excitement has been quickly stunted when I see the mass amount of teenagers in see through pants.. All I want to do is scream,

“LEGGINGS ARE NOT PANTS!” shout out to Ms. Shaw.

I find if I go early in the afternoon, the distraction is less. Side note, but seriously, can we put this on t-shirts? If I can see your butt cheeks then your shirt, is too short. What happened to modesty or at least self consciousness? I know what portion of my backside is exposed at all times, even in jeans.. I know what’s happening back there.. If you reach up to grab something off a high shelf and you are briefly exposed then fine.. But if you can feel the breeze constantly on your bottom side, your shirt is too short. Leggings are not pants. Especially not the ones that are thin leggings aka pantyhose….Hello, we can see through them! To your underwear or not. Yes. It’s true. The fault is really in the parents, please check your children before they leave the home. Let’s solve this epidemic, one legging at a time. Okay? I digress.

When I think about the fair and get past the legging fiasco, I get excited and relive all my memories tied to this time of year over again. I think of the time that our freshman science class went to the fair during the school day! That was big time by the way… I remember measuring the velocity of the rollercoaster. I also remember wanting to ride in the caged ferris wheel with a boy, which I’m pretty sure was deemed not safe enough for today’s children. I remember one of my class mates throwing up on the swings. Gross, but totally remember.  Something about October and the weather changing cooler, gives me hope of something wonderful happening. And the food.. I like to eat.. It was all so magical, so hopeful of a something simple that brought happiness.

My initial excitement over realizing that the fair starts tomorrow was quickly overshadowed by our fair experience last year. We had been home from Atlanta for two weeks.

Our new normal.

I was tired of being at home and we decided that we would still go to the fair and that we weren’t going to just sit around and miss out on things we loved doing. We would learn to do things a new way with Walker. It would be fine. We will figure it out as we go and we did.

It was difficult because the best part of being at the fair with two children, is seeing their excitement and reaction to all the rides and food and people. Weston wasn’t talking yet and well neither was Walker. So, Andy and I pushed the boys around in a stroller, which is always super fun in crowded areas, and noticed the legging epidemic maybe a little more then I normally would have…and tried to enjoy what we could. It was fine. It was honestly a preview of how the rest of 2014 would be.. Fine.

We would try and do things that we normally would have done and just push through it while waiting for restoration and hoping for the best. To be honest, the fair wasn’t that fair… None of this was.. But as the fair approaches and this time of year comes around again, I’m trying to make sure we do things we normally would and that we keep going because it isn’t fair that Walker isn’t better. It isn’t fair all the setbacks he has had this year… But it’s also not fair to Weston to not do things because it’s difficult…We weren’t promised fair.

I think realizing that takes away some of the disappointment but not the longing. I am still longing for simple joys and excitments. I am trying so hard to set aside more time to just be present in our moments. So while the leggings will probably be in full effect tomorrow, I will still brave the fair and try to brave this moment of our time.

It has been so joyous to have Weston talking these past few months.. That is really what I miss the most, hearing Walker’s thoughts and the way he puts together his sentences. So grateful we can be reminded of how sweet this time is through Weston’s little words.. I can’t wait to see his reaction to the sensory explosion that is the fair… Maybe next year will be different for us.. I have to keep hoping… “love her, kiss her.. that girl is  P O I S O N… Look it up grandma.. It has a good beat. :

Pain, Perspective and 3 things

Confession time. No, catholics aren’t the only ones.

I’ve struggled with realizing that other peoples struggles or trials are as important.. Because honestly, they seem so trivial . They seem like things I would long to worry over if my circumstances were the way they used to be.. But that doesn’t mean they aren’t worth listening to and trying to sympathize with.. I want to listen, I want to be invested in others..

I feel blocked on doing so.. almost trying to force myself not to say what I want to scream out.. but that’s not love.. and that’s dark.. and you probably don’t want to hear that .. I truly want to worry about what I worried about before all this or do I? I spent a lot of time concerned with some dumb stuff. Then there is the earthquake in Nepal.

Oh yeah. The one with eight thousand people dead and suddenly others stripped of lives they were living so intently one second and without the next. There is always someone who has it worse. That’s pretty bad and could happen any where at any time.. Yet we live like we are invincible or somehow above death. Yet it is the only thing that we all face.

For me when I step back and realize that this is the case. That there is always something so much worse going on around me. It makes me feel better. Not about the bad stuff.. But perspective.. I need it to keep going. Even as I write this, I feel a weight lifting off of me. Recognition that we aren’t the only family struggling makes it seem less huge.

I always thought that if I could control my cirucmstances. then the pain I felt was somehow a result of what I decided. But what happens when , our situation goes beyond anything that we did.. I can’t blame myself.. I just have to endure.. and depend on God.

Is that his plan for pain? That it draws us closer? That it creates a connection or desperation that we could not have found on our own ? I know that has absolutely been the case .. I thought I was close to God or that I relied on Him.. This situation with Walker has made me realize several hard core facts about being in a relationship with our God.

1. God wants way more intimacy then we are willing to settle for.

You think you love and know God.. Have you ever pleaded with the Lord to save your child? Or been so incredibly broken that the only thing holding you up is the prayers of others and the words you feed on from His Word? I have to tell you that I thought I knew Him before.. I don’t think we all have to experience extreme cirucmstances to depend on God but it sure does speed things up. He wants us to rely on Him the way we rely on food and water. Lord, I pray that through this, you would open up those kind of relationships with people reading this and for me too.. That they/we wouldn’t have to experience loss and heartache to truly feed their selves from your Word.

2. You have to show up to meet God as you would a regular job.

Okay, comparing God and work.. Not so great but totally truthful. You have to keep showing up or you won’t get paid. If you aren’t pouring yourself into your relationship with Jesus.. then more then likely, you won’t be hearing from him. I don’t hear from God when I’m not reading his word. That doesn’t mean that He doesn’t pull us back in when we aren’t making time for him.. But I am so much more everything when I make this happen. To be desperate and in his word is great.. but we got to keep ourselves in it even after the desperation because he wants more then to just rescue us when things are bad. Why do we settle for just getting by? Why do we not keep in hot pursuit to be blessed.. immeasurably more then we can ask or imagine?… Do we think its enough? I don’t know.. I think I get lazy, like tired of trying.. So , I settle for less but when I see all he does and can do.. and would do if I would just keep the faith.. It’s ridiculous.

3. Perspective is priceless.

I really feel like it has brought me out a depression several times.. When I start to drown in my own sadness or self pity… It brings me out.. Remembering that in all of this , there is still so much good. There is still a purpose in our struggle and good to come from it.. I have learned a lot of hard lessons about what it means to have a sick child, to let go of the way I thought my life would go. My dreams for Walker have been put on hold. I believe still.. That he is healed..I’m just waiting for God to reveal it to the world. I’ve learned about this other world of special needs families and how much pain there is but still so much joy here. I’ve learned that if you’re not dead, then God’s not done. (Heard that from several different pastors but love it and totally applicable here.)

I don’t want the life I dreamed now. I want the life God will create from this struggle. It is still hard to let go of the way things used to be.. I do still long for the simplicty that we had previously to July 2014…but I want to take my understanding of God’s desire to love us much deeper then I was willing to settle for before this, with me. I also want Walker to talk. So, Lord. Please . Let him speak and let me stay close to you and in your word.. Let your glory be shown.

 

How did we get here?

How did we get here? I am feeling a lot of different emotions as we prepare to go to Duke tomorrow. If you’ve been following our story long, you know this wasn’t apart of my plan. We spent three months in the hospital, “fighting” this encephalitis and trying to build Walker back to his old normal. I thought the rest of the journey would be lowering medicine and increasing therapy. We have been inpatient, outpatient and now “in-home” for therapies. We do “alternative” therapies in addition to essential oils, Cannabis Oil and intensive chiropractic care.

In my attempt to cross things off my list as why he is still having seizures, I came across Dr. Ruth, a rheumatologist.  Walker did have an auto-immune response when his VGKC antibodies were elevated with his Encephalitis. I have been wanting to visit her to see if Walker could have anything else going on that was not allowing him to heal properly. She tried to cancel our appointment several times citing that we needed to be in the care of a neurologist and not hers. I insisted that we meet just so that I know this was a dead end and could move on.

So, that didn’t happen, she wasn’t sure how she could help. Dr. Ruth suggested that we consider going to the Mayo Clinic or somewhere that specialized in what Walker has. Then she said that she had actually met someone this past weekend at a conference who had mentioned a clinic for Encephalitis but that she didn’t know the details, so she left the room and called her. Right? She had her cell number… and the other her, was Dr. Van Mater at Duke. Turns out she, a Rhematologist, and Dr. Gallantine, neurologist,started a clinic at Duke for Auto Immune Encephalitis Treatment. They have treated 120 kids with this sickness and 2 kids with VGKC. Right, what Walker has. She was so excited when she came back into the room that she had found some place close that specialized in what Walker has. I didn’t share her excitement and actually burst into tears as soon as she told me. I left feeling totally confused and actually mad that there has been this clinic the whole time that no one at the three hospitals we were at had heard about.

I seriously felt sick to my stomach to think that we could have left something on the table that could help him and meds? more meds? No, and it is the total opposite direction. Dr Ruth didn’t know complete details but that more immunotherapy , i.e.. steriods, possible IVIG , or Rituximab could be useful… I think I just begged God that this was wrong.. I can’t go back to another hospital.. I can’t leave Weston. I don’t want Walker to have needles and nurses and IVs.. I just can’t do this.

So, the next day, we met with Dr. Turner who had some incredibly new therapies called biofeedback and other neuro modulation techniques that he thinks will be effective for Walker. He also made a referral for us to get some Visual Therapy to help with his eyes and hopefully regain what was lost. We have an appointment with Draisin Vision Group in Charleston on May 18th. This was way more on track with MY plan and I tried to ignore the information that we had received the day before about Duke.

Of course, it didn’t go away and I would spend the next few days begging God for peace in turning this down. Then, Dr. Van Mater, called me herself. Oh. So that was new. We talked for about 45 minutes and she filled me in on the program and that they have found incredible results with continued Immunotherapy for Auto Immune Encephalitis. I shared my concerns and MY plan for Walker’s care and told her that I wasn’t ready to commit but that we would pray about it.. I was starting to change my mind but would still not be sold until a few days later.

I was begging God for an answer and to know that this was right or not right for Walker’s healing. Have you ever just heard God’s voice? Not audibly but had the holy spirit overwhelm you HIS word? I love it when this happens and long for more experiences where I know that God has enlightened me of his plan. Andy and I were at Haven coffee house and I was doing my bible study when I was reflecting over a question.. I found myself pleading the Lord again for direction.. I wrote on my paper, “you will go, eventually.”.. I didn’t even realize I had written it.. I just stared at the words .. shocked.. and scared.. but of course, that wasn’t enough.. Please excuse my inner dialog.. Was that you God? .. I wrote that down.. I remembered that. Yes.. “you will go, eventually”.. Okay.. but you better tell Andy the same thing.. lol.. Like the same words..   and I’m not saying anything until he says it first..

That seriously happened… About five minutes later, Andy asked me.. “do you have an answer yet? ” lol.. NOPE… I didn’t tell him.. So of course, I kept it a secret for a few more days until he finally said.. ” I think we are supposed to go.. ” I asked him if that was all he wanted to say.. lol.. I know!!! I’m crazy. So God didn’t give him the same words.. but we both felt like yes, we will go..For us, it was eventually.. begrudgingly. .. Duke wanted us there first thing last monday .. but we weren’t ready.  I needed to know that this bizarre turn of events and suggestions were apart of HIS plan for Walker and not MUSC’s.

So, I needed more assurance. I emailed Simon’s mom, the little boy who had encephalitis in Atlanta the same time that we were there. He has made a total recovery. I asked her what treatment he did.. She responded.. Rituximab. I couldn’t believe it.. I don’t think we would have done this drug in Atlanta.. Walker was making such progress at that time. He had also just finished his second round of high dose steroids. Thinking that Walker’s plateau of healing could have something to do with possible inflammation might make sense. These drugs that they want to do or discuss doing are targeted at reducing inflammation.. If he still has this, then it could help decrease it.. and they have seen positive results with this course of treatment. Of course, the earlier the better but they have also done some cases several months later and seen success.

I don’t know that this will heal him. I am so incredibly hopeful. I am so incredibly desperate for my son to run and laugh and speak. For his seizures to stop and for us to move on with our lives.. In church today, Pastor Mike shared a story of an elder praying over another person..and asked God to take his hands out of his pockets and deliver them from their situation.. lol, I love that.. God knows our frustration and it’s okay to tell him that we are still here and we are still WAITING!

Please pray for safe travels tomorrow. Please pray for Walker’s healing brain and body. Please pray for me as I try to pack his blended food for a few days since we don’t know how long we will be there. Please pray for Wes while we are away and that he stays safe and happy. Please pray for our hearts as enter another hospital and Please pray for His will and His plan to be delivered and not our own.

A lovely Alliteration at last.

I have a thing for W’s and alliteration, (you’re welcome). If we were ever to have more children, boys specifically, we would name them with the appropriate W-name. Walker, Weston.. Wyatt, William, whatever.. lol.

I can’t help but find joy in things that rhyme or have a rhythmic or almost symmetrical sound to it. As a child, everything that I would play or create would be Karie’s Korner or Karie’s Kreations or Karie’s Kool Kite…I have no real understanding of the order that it brings to my mind but it was never negotiable.. Even as a teacher, I would make my students introduce themselves to the class with their first name and something that described them with the same letter.. Of course it makes sense to do a double K or relabel things that start with C, with a K. Hence.. Waiting on Walker….

There is no real sense in it but a simple pleasure of making my brain smile. I think I need more of those simple things.. The things that make us happy without any logic behind it.. Like ordering a pumpkin spice latte in the fall from Starbucks.. Or buying new school supplies when no one is heading back to school.. One thing that doesn’t bring me joy would be shopping for bathing suits.. I am pretty sure I have had the same swimsuit for the past 5 years.. maybe longer.. actually , no it was longer… 6 years.. but I am totally cool with not investigating that territory.. 🙂 (I’m pretty sure I’ll online shop one when this is published)

I think that we make things so complicated with all our feelings and emotions and stress that we allow into our lives when that is not how God intended us to operate.. Yes, suffering can be apart of the journey to following Christ but so can peace and simplicity.. I am currently in a bible study from Priscilla Shirer called Breathe.. Our church did it a month ago but a dear friend has volunteered her Wednesday mornings to bringing the video over and doing it with me since I couldn’t attend the sessions at church. 🙂 Praise God for her and Priscilla and her lovely hair. I want to be her.. Umm.. SO, this morning she talked about how God set us free from Egypt, from bondage, and intended us to live in freedom but most of us can’t because we were brought up with the slave mentality.. We can’t be free , even though it is what God wants for us because of the way we are used to thinking.. To quote Joyce Meyer, “we have stinkin’ thinking ”

How often are we stressing over the enormity of our own feelings and disappointments that we miss the little things that are pleasing.. The joy of speech maybe or the blooms of spring or the fingerprints on the fridge.. I miss cherishing those simple things and to be honest..

when I think of life before Walker got sick.. I don’t remember the grand gestures or events but those small things that only happened when he thought I wasn’t looking.. or in the quiet of his bedroom waiting for him to fall asleep..

I praise God for those moments of simplicity and freedom that I was present and willing to take it all in.. I pray for more of those moments.. More alliterations that I can laugh out loudly loosely after.. that was good. I pray that you find your freedom in something simple today and feel free to use mine if you are too complicated to come up with anything.. 🙂

Resurrection Rolls and Restoration

Have you seen these? They seem like such a great teaching tool to show our young ones that Jesus went into a tomb and wasn’t there after they rolled the stone over it.. He was resurrected.. like the marshmallow in the roll disappeared.. kinda.. It’s still gooey but it’s a cool visual representation of what happened with Jesus.. If Jesus was a marshmallow. … lol.. Okay.

So, it has me thinking.. Watch out.. It has me thinking, what does that mean? That he was there and then he wasn’t.. So many times, I feel like God hears my prayer but then he doesn’t because nothing happens. But I feel the Holy Spirit.. Just wait, he whispers.. not yet.. but today I feel a strong emotional need to beg God LOUDLY for restoration again, on this celebration of his Resurrection.

Those two words just melt together in my mind and I can’t stop saying them. Jesus was RESTORED to his heavenly body but still had the scars on his hands and feet. He was Resurrected into the heavens to live with God but he was restored.. Restored to the way that God had created him to be for eternity..

Tonight, our church had Maundy Thursday service. I didn’t go.. Walker needed to be home.. He’s been having withdrawals which means random seizures and so that means that we don’t do the things we plan to do..I didn’t feel super today either but Andy went for us. They had a time of response that allowed Andy to seek prayer and be anointed with oils. He said he poured out his plea and heart to the elders of our church and that they prayed for Walker’s healing..

I still believe, Lord. Help me with my unbelief. Timing. Where oh God are you in this timing.. I still feel like Walker will be restored and so we are still seeking and begging and praying and waiting.. Do miracles still happen? Yep. Could one happen for Walker? Yep..

Why hasn’t God done it yet? I don’t know.. Why did he watch his Son be beaten, spit on, mocked and tortured? Was he away from him when this was happening? Was he any less in God’s provision because he suffered? Nope.. but did God come through? Yep. Was Jesus mad that he had to go through this? Probably.. especially at the end.. “Why oh God have you forsaken me?”… I’m not comparing Walker’s suffering to Jesus story. But i do see a parallel in watching both of his Sons suffer for a greater purpose then their own.. I do see that GOD eventually, set him free.

Please pray with us this Easter, that God will save Walker from this. That God will set him free from his sickness and that words would be returned to his mouth. That he would be restored. Walker’s story is bigger then us. Our pain is worth the price of bringing those to His Kingdom.. Lord, please let this be in his healing…Everyone is watching.. and waiting.. and praying.. Please pray with us.

“Heal Walker, Oh Lord and he will be healed. Save Walker, Oh Lord and he will be saved. For YOU are the ONE that we Praise.” Amen.

Living Well, Spending Less

It was my goal last weekend to finish one of the 100 books that I have started recently.. I have a problem. I think it says something more about me that I can make it half way through any book but have trouble to finish one completely.

I don’t ever listen to a full song on the radio or play list but I can watch a movie I have seen 20 times before and be surprised by the ending. Hmm. Feel free to discuss..

So when we got to go to the beach unexpectedly last Thursday, I packed 40 books in anticipation of reading the last half of all of them. When I realized it was our last evening and I still hadn’t opened any of those books, I decided that one would have to be finished before I would come home.

I escaped from our hourly drama to the bedroom to read Living Well, Spending Less by Ruth Soukup…. I really had enjoyed this book so far but couldn’t find the time to get ‘er done.. lol.. I have to be honest, I didn’t think this book would end the way it did. She starts out explaining her journey which I felt I could very much relate too and wanted to learn..

How to live on a budget and redirect our hearts as well as the struggle of trying to fill our lives with things that we think will make us happy.. only to realize that as soon as we have something, that feeling goes away with the tag coming off. She discusses her spending problems but then follows what the root to that habit was.. She was looking for fulfillment.. AND Stuff isn’t fulfilling.. but we keep trying.. I have always been someone content by what I had.. Or I thought that until I read this book.. But I always find myself buying more stuff… I find myself in Target with my cart full… But I don’t have a problem.. But, If i just had one more throw pillow or one chevron blanket or if the boys had this sweater or if I had a softer bath rug THEN.. my life would be right. I would be happy, for today… But more stuff is just that.. more stuff. I found myself wanting to purge my home of 80% of the things I have acquired over the years and start over… with less… I’ve done this before.. Purge.. I’m a purger.. but then inevitably I find more things that we need and realize i”m surronded by clutter and stuff again. Ruth Soukup really challenged me to find out what am I shopping for?

I have to admit that I am mostly referring to my life, pre July 2014.. Things are very different now as to where we spend our money but I have succumbed to Target several times since being back from the hospital.. I’ve spent far less money at Target and more at health food stores and online trying to find something to help with our current situation. I’ve found that replacing our products with non toxic ones that I make myself has greatly decreased the amount of money I spend and my trips to Target. I enjoyed being challenged by this book to realize that spending habits should be lowered by being creative with how we spend money but was surprised by all the other ways to live better that she outlines..

She gives 12 tips on living well while spending less.. My favorite one was how to find your sweet spot.. The place where your talent and abilities intersect.. For me that was a tough one because, I don’t feel called to what my life has led me to.. I didn’t think that my life would journey down this particular path.. I feel like a secretary for a job I didn’t apply for.. I’m always on the phone or trying to fix an appointment, just as most moms of special needs are…I  thought that I would be a photographer , an artist, a movie star.. (laugh.. it’s still a dream) , a missionary or philanthropist. I was once a teacher and photographer… Then a wife .. Then a mom.. I never once saw one of my children getting sick and living in a hospital for three months.. Was I allowed to dream anymore?

To have desires outside of caring for Walker and Weston? But then when I read this.. The place where your talent and abilities intersect…maybe I was… I feel like passion and talent can be exchanged.. because my new passion, sparked by this journey.. Is to help other moms and families find answers outside of the hospital walls.. to share my ability to research and learn about new methods and share them. I feel like I am currently doing that through my journey with Essential Oils, through trying CBD, through the different diets that we have been trying…. I want to share it.. It makes me feel like all this was somehow worth it if I can help someone else.. Even if their story isn’t as extreme as ours, to still look for answers and feel confident that there isn’t just one way.. That maybe.. You can find the problem and fix it.. not just treat the symptoms.. Okay.. the book was also about how to clean your bathroom effectively.. but I didn’t care about that..as much…

Here’s the book if you’re intrigued , Living Well, Spending Less

Fast, Pray, Give

Lent. Do you give anything up for lent? When I was in high school, I remember seeing people come to school with ash on their foreheads and not really understanding what was going on…

When I learned it was the beginning of lent, Ash Wednesday, I felt pressure to come up with something to let go of or give up for God. It has always seemed like I was somehow pretending to be apart of something when I participated though..

Not because I didn’t know God but that I didn’t really understand why it was such a big deal. It seems like the trendy thing to do, give up something for lent.. Everyone would be talking about what they were giving up.. Even people that I didn’t know were Christians..So here I am, 15 years later, still trying to decide if I should participate or not in this tradition of sacrifice.

I know there is so much underneath celebrating Lent and my understanding of what this time period actual represents.. but I find myself still feeling uncomfortable choosing something insignificant to “give up”…I believe in fasting and praying and I respect traditions… but what is my hesitation with lent? I think that my lack of understanding of biblical traditions and knowledge of what this time represents.. Stinks..

Check out this link to brush up on the imporatance of lent.. Why do we celebrate all of the Hallmark holidays but then question the importance of anything celebrating sacrifice? Yeah, when you think about it like that, it changes the way I think about lent. It’s not something that I don’t know about because I do.. and you do, if you know Jesus..

So, yes, I’m celebrating lent.. I wasn’t sure at first thought but several hours later, I can’t deny a reason to fast, pray and give..Give up something good.. something that you want so bad that you rely on it instead of spending time relying on HIM. If you know me..

Then you know, mine is going to be tough. It starts with a Cough and ends with a please Lord, get me through this. E. I’ve held on long enough. If i’ve learned anything through this experience with Walker, we can do way more then we think or imagine..


Paul’s Prayer for the Ephesians


…Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen.

 

Attacking free radicals with antioxidants

f I were to tell my Art teacher photography loving self 5 years ago that I would be familiar with free radicals and antixoidants…Not sure she would believe me. The thing about this is, you never know where you are going to end up. You can start out in a direction..but you don’t have control on if that is where you will actually go.

This time last year I was at the Teach them Diligently Conference preparing to home school Walker in the fall. I was debating over curriculum and character education.. I thought I was headed down a very different path.. Then July happened. My path became something completely different then I would ever imagine or wish anyone to experience. At times I beg the Lord for my old life back or the path that I had chosen to start down but God says .. No.. not now.. maybe not ever.. You go this way.. So here I am.. Talking about radicals, cannabinoids and Essential oils..okay.. let’s do it..

We were able to purchase two bottles of CBD on Friday and they shipped this morning for us to receive on Monday. We are starting at a dose of .9mg a day divided up into three doses throughout the day. This is the starting dose and we will titrate up based on how the first week goes until we reach a therapeutic effect for Walker. Once that happens we will slowly decrease his AED meds. There have been such incredible stories of healing and restoring of the child’s pre-illness behaviors once on the oil but I wanted more information on how it is actually working. I came across this site that does an incredible job of explaining it..

“A great deal of data suggests that many problems associated with aging stem from the inability of an organism to protect itself against free-radical-induced inflammation and oxidative stress. This provides a fertile ground for the development of neurodegenerative and other age-related illnesses.

Cardiovascular, autoimmune, neurological disorders, cancers, and the aging process itself are all thought to have free radicals as a causative agent. Further, they are implicated in the formation of protein amyloid plaques — plaques that can attack neural synapses and prevent normal chemical and electrical signaling.

By binding up these free radicals, antioxidants can minimize the plaque formation cycle associated with the progression of Alzheimer’s disease. Accordingly, several studies have shown that CBD blocks Alzheimer’s plaque formation by a cannabinoid-receptor-independent mechanism.

The antioxidant properties of CBD exceed the antioxidant potency of either vitamin C or E. When combined with THC, the antioxidant properties of CBD grow even stronger. Once again, whole-plant Cannabis therapeutics has been shown to be far greater than the sum of the herb’s individual medicinal components.”-http://www.projectcbd.org/news/how-cbd-works/

Please be praying that this works to aid in bringing Walker back to us. We have had a week of ups and downs with his seizures and energy level. Walker has caught a version of what Wes had and has been very lethargic. Wes is doing better but Walker can’t cough as well as he might need to ward this off.

I also had my first full class that I taught today on Essential Oils in Greenville. This new journey has been very good for me to have something that I can be excited about again. I feel like I have entered the world again and it feels good.

For nine months, I thought of nothing but Walker. Everything stopped for us. To see that there is life after July has been so incredibly fulfilling and a great way to get me out of the house. I am so hopeful to be able to share my information with other moms of special needs and those just looking to take control of the things in their home. I’m also teaching a VIDEO class on Sunday night at 8pm on Facebook. I don’t think i have laughed as hard as I did while recording this class since all this started with Walker. Thank you for praying for my mental health. Thank you for praying that we would find Joy and Life in the midst of this, it has slowly started to come back for us.

Miracles

“You are the God who performs miracles; you display your power among the peoples.” Psalm 77:14

Today a friend of mine had a baby girl. This is a miracle. For several years and several miscarriages later, it looked as if it might not happen but now she has two healthy and beautiful children. Miracle. I am so incredibly happy for her and their story. To hold a child after being told no or thinking will this ever happen? Best feeling ever. I know this too because that is what we were told before Walker. 4% chance. Maybe but definitely with fertility.. I had to have a surgery to have Walker and even still was told it wouldn’t happen for us. It did. Miracle.

I have seen so many things that can only be explained by God. I keep hoping that Walker continues to be one of them. I keep holding out hope that this is our one day. One day… We will have him back. I feel so much like the way these friends to the paralyzed friend must have felt in the bible.. I am carrying Walker on his mattress through all this junk trying to get him to be seen by God..To be given something that could restore his health. 

“He couldn’t bring him to Jesus because of the crowd, so they dug a hole through the roof above his head. Then they lowered the man on his mat, right down in front of Jesus.”Mark 2:4 (NLT)

I will do whatever it takes until it takes. I like that. Whatever it takes until it takes, until God reveals his healing. It’s my job, to take him to the cross. To lay him there and ask What next God? What do we do to find healing? 

This same friend that birthed her daughter today, sent me texts on Sunday sharing how much she believed in the miracle that was awaiting Walker. To know that you who are going through this journey with us are still storming the Heavens with prayers of healing and blessing upon our family. 

Thank you. Don’t stop. IT’s working. 

Walker has been four days without a seizure. He had 5 on friday and then none. I gave him his first dose of CBD tonight at .2ml.. that was an interesting dose to give.. do you know how little .2ml is? We will do that 3 times throughout the day. He seemed to not have any withdrawal from me lowering his ONFI dose on sunday night by 1ml. 8ml left to lower and we will be off of it. 

You’re probably wondering what changed for him to not have any? Great question. I have no idea. The only thing I have been doing different is giving ginger in his diet and stopped giving him such high fat and animal protein. We decided to stop the MAD since it wasn’t working, even though he was producing ketones. I have been giving him high vegetable, high omegas , and still low carb but not counting.. but not as much animal protein or fat. ..maybe that has helped? 

I still believe in healing. Maybe this will get us there. Please keep praying but also praising God for the miracles he is working and that we see such an incredible impact from Walker’s Miracle Story.. So far beyond us. 

“But, so that you may know that the Son of Man has authority on earth to forgive sins,”–He said to the paralytic–“I say to you, get up, and pick up your stretcher and go home.” Immediately he got up before them, and picked up what he had been lying on, and went home glorifying God. Luke 5:24-25

 

 

CBD and slow slow slow

Hi there.

So if you have been following us long enough, you know that I will try and read whatever it takes to help give Walker a chance at recovery. Our prayer the whole time has been for Restoration Please Lord. So with all the different medicine that Walker was on since the beginning of this journey, nothing has worked to stop the seizures and allow him to return to himself. I have weaned his doses slowly to half of what they were when we left Inpatient in September but it is a long slow journey. The anti seizure medicines are no joke and require very slow weaning because they are highly addictive and have bad side effects. We are making progress but still so far from where I hoped we would be at this point.

Walker is still having seizures and stops breathing.

Walker is still non-verbal.

Walker is still not communicating.

Walker is still on three different anti-seizure meds: Onfi (22.5mg a day), Topamax (300mg a day) and Vimpat (150mg a day)..

Walker takes Vitamin D, Vitamin B6, Probiotic, Vitamin E, Multi-Vitamin, Folic Acid, Taurine, Magnesium, Fermented Cod Liver Oil, Vitamin C and MCT oil with Rose oil (brand new, Thanks Amy!). He gets 2 drops of Copaiba and 1 drop of Helichrysum a day in coconut oil. We use Frankincense or a Brain Power Blend at the onset of a seizure or to help distract when starting to show signs of one starting. Sometimes it works, sometimes it doesn’t but more effective then not.

Walker has been on the Modified Atkins Diet at 10 carbohydrates for the past three months. I’m slowly transitioning him to Paleo Approach for Auto Immune Disease . It worked a little but not enough for me to continue allowing his body to think that it is starving and it also caused some drama with constipation. I’m happy to end that journey.

Walker is still going to the chiropractor several times a week.

Walker is still in Home Therapy with Speech 2x a week and OT and PT once a week. Walker is still seeing the ABM therapist when he is in town one week a month.

Walker is improving in his strength, stability and eye contact.

There are good things happening but there are still the seizures, the sleepiness and confusion.. It’s one step forward, two steps back. Andy and I are so tired of this journey but there is new hope for us this week.

I’ve shared about the possibility of CBD oil being something that we can try. On Thursday, it should be available for purchase.. legally! We are so excited to get our first bottle and see if it works for Walker. Our goal with trying this is weaning down off the rest of his seizure meds. This has had many stories of success for other children with encephilitis, seizures and even cancer. I’m scared because we will be managing his care of the dosage and will have to visit a new neurologist in Charleston who will help with this new process.

Please pray that we can get a bottle. Please pray that Walker’s body adjusts to this new oil. Please pray that this works. Please pray for some relief for him and for us.

If you want to read more about CBD oil.. We are using the Whole Plant High CBD Oil with less then .3% THC. Here is a link of info: Understanding Cannabis

How I deal with depression.

So.. this is probably no shocker but along with this journey has also been a struggle with depression..

I have always fought off depression with exercise and diet but when faced with something like a sick child.. It seemed to be more then I could deal with on my own. I have been transparent with our journey and now I thought I could share some ways that I have dealt with this.

While in the hospital, I started taking an anti depressant because it was bad. I couldn’t stop crying and couldn’t pull it together. I am so grateful that friends that rallied around me to say, you need help. So I started something to get me back in gear and it worked. There is nothing wrong with anti-depressants. They work but they also changed how I felt. I began to not have any emotion and couldn’t connect to what was happening around me. I was just doing what had to be done.

When we got home and got into a routine, I wanted to come off the drug and start something more in line with my natural way of living. I had been using this oil, Joy, on a regular basis but I didn’t realize what it was doing for me. I would laugh at how good it made me feel while pouring it all over me whenever possible. It wasn’t until I started researching the oils that I learned, um.. It is making me feel good for a reason. That is what its supposed to do. Lol. Um, what? When I learned that it helped with grief and desperation, I laughed and cried. It really was making me feel better. So I came off of my anti-depressant and started using Joy everyday. I put it over my heart, on my wrists and smell it throughout the day.

I also use lemon in my water, it helps me feel refreshed. I use Helichrysum on my wrists as it helps improve circulation and regenerate nerves. I use Lavender under my nose and in my face serum. It helps calm and soothe my anxiety throughout the day. I also use a lotion that has lavender in it that is amazing.  The last oil I use is Frankincense, this improves my attitude uplifts spirits. It is also an oil we use all day to help Walker with his seizures.

This stuff really works and if it will help someone to share then here you go. I also feel better when I run and drink green smoothies.. But that’s not new information 🙂

Life in the Meantime

This is an expansion of my caringbridge page that I have been writing about my son, Walker… I figure since our life isn’t returning to our normal anytime soon.. That i should write about what we are doing in the meantime.

If you have been following our caringbridge page, http://www.caringbridge.org/visit/walkerphillips , then you know what kind of life we have been living since July of last year.

A crazy one but a life that is still worth living and writing about. I’ve always loved writing and now this sickness with my oldest has restored a hobby that I used to love, blogging. Do they still call it that? It seems like blogging was super cool in 2000’s but now twitter and facebook seem to be how we all keep up with each other. Cool or not, here it is.

I am excited to write more in depth about what we are going through with Walker but also restore some areas of life that I had put on hold the last eight months.

So to get started….. I am a mother to two boys, four and two. A wife to a Citadel grad, baseball loving, deer/duck hunting, F3 crazed sexy red headed man. I am a former Art teacher and photography business owner. I still love taking pictures but haven’t picked up my actual camera since last summer. I love all things natural, unprocessed and oily. Yes, I said oily. I am currently obsessed with finding solutions with my Young Living Oils and sharing them with others..

You’ll most definitely hear me say, I think there is an oil for that…We like to eat clean but I also love a good bottle of wine and several bars of chocolate, often.

I’m desperately clinging to my faith in God and finding strength in his promises everyday. I’ve realized that I can’t do this in my own power and that without his Grace and Promise of new life, wouldn’t be able to get out of bed in the morning.

We’ve been blessed with a community that does NOT stop loving us and rallying around us. I constantly feel like this situation is too much to handle on my own and then I stop and look around to realize that we are not alone. Praise The Lord, we are not alone.

Toxicity.

 was a rough week with the stomach bug running its course here.. All four of us had it. I am so glad that Walker had it first, that way we could care for him before we took ill ourselves.. I did everything I knew to do it keep it at bay but nothing worked. So I didn’t have much to report last week except that we were sick and still fighting off Walker’s seizures. This was the first time that we have been sick since christmas two years ago. Hopefully we will continue on that track.

Now that I have been able to take a break from research, I of course had an epiphany today that has led to more research. First, I feel like no one could tell us why or how or what in this whole process was wrong with Walker. It is just here and the only thing that the doctors know how to do is give a medicine to treat the symptoms. I’ve known this but didn’t know how to figure out the rest. I have played the days leading up to July 3rd over and over again but nothing stands out to why Walker…

So, today in church, I had an epiphany.. Not about Romans 8..sorry Pastor Mike.. but about Toxicity. I started thinking about maybe him having something that could be stuck in his body allowing this cycle to perpetuate and not heal. How can he heal if something is still causing the seizures. I keep trying to stop the inflammation and help him build new pathways in his brain through therapy and anti inflammatories but what if something is still making him sick? So I started reading..about parasites. gross, right…. Okay, so I figured we would start there and maybe all join in on the fun. A parasite cleanse. This should be good to do anyways and since gut health is so important for keeping Walker healthy…this is what we will try next..

We are still on Modified Atkins Diet or Walker is.. That didn’t last long for us.. I really don’t enjoy eating a bunch of meat and after the excitement of bacon every morning.. I wanted my smoothies back.. Walker is producing ketones but I would not say that I have seen a dramatic improvement in his condition.. I also don’t love pumping him full of animal fats.. We do a lot of coconut oil, almond milk and hemp as an alternative but it has been opposite of the way we typically eat. I might try vegan for him after the next week or so if I don’t see improvements. It has been a little over two months since we started.

We are still defintely going to do the saliva swab and send to healers who share.. They do an analysis on the saliva and look for anything that could affect the vibrations in the body or the aura. It sounds odd but was incredibly interesting and my cousin is in the process of taking their remeides to help with his epilepsy.

We are also waiting on his lab tests to be read by Dr Renee and maybe look at a heavy metals test.. Just checking out everything.. Our bodies are created so incredibly to function correctly.. So when something is wrong.. I don’t want to treat a symptom .. I want to find the problem. So instead of me begging God to heal him, I am now begging God to show me what is wrong with him.. I am still praying for complete restoration but I refuse to accept that this is just the way things will be. I can’t live like this anymore. I believe God can fix this and I wish so much that he would end this journey for us. But , he hasn’t. Maybe my journey will inspire others to get to the root of the problem instead of medicating it or not to give up hope. Even when it seems like it won’t get any better. I choose to believe that it will.

 

This I keep on doing.

Walker had four today. I think Andy and I both lost it when that fourth came. It’s like you roll through the full eight month journey when a day like this happens.

Suddenly every other child Walkers age becomes a painful reminder that things are different for us. It’s a feeling we push down because it’s not how we are choosing to deal with this. But it’s there. Church is hard because there are so many memories and hopes and dreams that are put on hold for us.

The chiropractors office is hard because there are strangers that don’t know why Walker behaves in the manner he does. Or why Weston is running out of control like a mad man. I want to teach him not to run around, not to slam doors, not to rip papers off of shelves…

And I still try . But it’s not the same. I don’t have a character trait or soft calming voice to gently redirect his behavior. I have little left to give him because I’m trying to make sure Walkers ok. I’m always trying to make sure Walkers ok and just hope that Wes will be. Facebook hurt today , so many pictures of families doing things we want to be doing.. Do they know how lucky they are?

Do they know how quickly things can change? I didn’t but they did and Id give anything to go back and know what we know now..

Yelling..Andy and I yelled today. We yell when we are sad . When you want to yell at God but instead see each other. It’s hard to stay calm when you are so tired of this new pattern. I want calm . I want peace. I want fun and care free pictures on Facebook. But it’s not where we are, today. We have moments there but it mostly comes back here. Frustration and disappointment that things aren’t better.

Andy and I always come back and put things together . We always find a way back to doing things together . The truth in our sermon on Sunday on Romans 7 was echoed in our lives today. ”

I don’t want to do these things.. This I keep on doing.. It’s not me but Sin that lives within..” Lord, take this Sin , give me grace and peace. And Lord, here our cry! Make Walker better, make this easier, give us Hope