The old has passed away.

Every year, we get this chance to make all things new. A do over. A fresh page. I’m putting this out there at the end of January, when most of you have probably given up on your new years resolve of finally fixing that one thing.. I never even started mine.

If that’s not true for you, well high five. But how do you narrow in on that one thing that you need to strive for?

What do I need to change to finally pull it together this year? Why must feel like we are not enough? What’s the mental push that makes us think that we need to wait to ” fix” that thing..

I’ll do it in the New Year, I can start that in January.

I’ve spent most of my life striving to be better. To be more than I was. I was desperate to be right and together. Pscyho crazed. Needed to improve all things. Needed to improve it all.

I would list out all the ways I was going to improve. Things I wouldn’t do. Things I would.

  • I would eat less sugar.
  • Spend more time praying.
  • Read my bible every day.
  • Work out more.
  • Quit drinking Coke.
  • Only eat sweets on Sunday.
  • I wouldn’t curse.
  • I wouldn’t kiss a boy until we were dating.
  • I would do all my homework each week…  instead of waiting until the end of each quarter to cram it all in.
  • I would wear knee high socks and skirts only.
  • I would try a new thing each week.
  • I would smile at everyone I pass in the hall.
  • I would pick a word that I want to live by and work at it all year.
  • I would focus on one thing all year. Get good at something. Like really good.

I must be better . A better me. A together me. A no mistake me.

What was really motivating all this and my driving need to resolve?
Why am I never satisfied with who I am?

You’ve most likely said one of those things before.

Well probably not the knee high socks thing but it was the early 90’s.. so.. of course it makes sense and you are totally rad if you it was something you thought too.

But maybe you can relate to wanting to be more than who you are.

I think that’s good. We should improve. We should be better.
We should never look at ourselves and be like, yeah. I’m good this year. I think I have got this under control.

No changes here, I’m kind of rocking it.

I mean, motivation to be more than we are, creates success.
If we are complacent or overly confident, we don’t do anything.

What would that have meant for cell phones?

If they had said, um. yeah. This bag phone really is the best we can do.

Oh my Zach Morris antenna? Oh yeah, that fits in my jeans just fine.

No. That is crazy. Phones went from big to small and now they are getting big again, just because they have to improve! Or at least not blow up.

We are taught to be more . To improve. or at least, that is what the world says we must do.

But what does Jesus say about it?
Does he think we need to improve? and what happens when we do? Does he love us more?

No.. He doesn’t . He doesn’t love us anymore today than he did last year when we were totally sucking it up for not working out every day.

We are enough for him, just the way we are . Bridget Jones shout out.

Isaiah 43:25 says “ I yes, I alone- will blot out your sins for my own sake and will never think of them again. “

“never think of them again” .. Can you even fathom that? How long do we beat ourselves up when we’ve been in sin? Days or months.. Sometimes, it’s years. I am still trying to quiet the sins of my youth. They will be gone but creep in when I’ve got my guard down.

“you can’t do this, don’t you remember 1999? You totally failed that year. ”

The world, the enemy, wants to tell you that you aren’t going to get past your past. But as Christians, as followers of Jesus, We have to put our foot down .

We are enough. We are forgiven.

When we are his, we are enough. There is nothing we can do to make him love us more. Or to be better for him.

Isn’t there so MUCH FREEDOM in that? Knowing, that we can’t do anything to be enough for him.

2 Peter 1:3says

“ By his divine power, God has given us everything we need for living a godly life. We have received all of these by coming to know him, the one who called us to himself by means of his marvelous glory and excellence. And because of his glory and excellence,  he has given us great and precious promises . These are the promises that enable you to share his divine nature and escape the world’s corruption caused by human desires. “

God has given us everything.. Everything we need for living a godly life. …

We can’t do anything more than truly love him. All the “right” stuff falls into place when that is our mission. I love the last line of that verse,

” These are the promises that enable you to share his divine nature and escape the world’s corruption caused by human desires”

So knowing that we already have everything we need when we accept his divine power.. What are we to strive for?

We aren’t saved by works. but we can focus our attention on two things:

  1. Knowing Jesus: who he is, what does he say. (read, pray, learn, speak.. talk about this, grow here.. Everything else that you are striving for will be eradicated by focusing on who Jesus is. )
  2. Tell others : share your faith, encourage those in your community that need a friend, pay attention to others, put them first. Do you know how bizarre that looks to the world?

Live out your love for Jesus.

Resolutions are these things. Make the things you are striving for about Jesus and not about us being enough or better. Because if you love Jesus and live for him. Then you are already there.

You have already arrived. While the world is running around trying to “get it together” .. You can fall into the grace of our loving God who gives freely to those who ask..

“Therefore if anyone is in Christ, he is a new creation. The old has passed away. Behold, the new has come!” 2 corinthians 5:17

We don’t get to start over each year because it is new.. but we are a new creation when we are in Christ. Each morning is a choice to be new in him.

 

Let it be to me

“For nothing will be impossible with God.  And Mary said, “Behold, I am the servant of the Lord; let it be to me according to your word.” Luke 1:37-38

I have always loved reading the Christmas story this time of year. Of course, everything feels different as I read it now. I don’t know if the intensity of losing a child or a life that you had began ever begins to feel normal. I do know that I have felt joy in continuing our life and that I have felt more peace and confidence in sharing what God has done for us over the past few years. I feel the words so deeply that Mary spoke,

” I am your servant.” ” Let it be to me… ”

I have had this overwhelming presence of the holy spirit since I began my interim position at our church. I have felt a peace, a calm and a comfort that I am exactly where I am supposed to be. I am doing exactly what I am supposed to be doing at this moment in time.  I think I have only felt that a few times before and it was in caring for my children when they were babies. Most likely in that first three months when everything seems perfect and peaceful. It was just the feeling of surrender. This is where I am and this is how God will use me. I am your servant. Let it be to me.

I never would have thought that filling in at church would bring about such a joy when I needed it the most. To be honest, I wasn’t even sure what I would be doing and everyone knows that I love older kids and that I haven’t worked for 6 years. The appeal of a temporary push into the world again, three months, service.. Yes, I can do that but no clue what was about to happen. But God knew. He knew what I needed and would arrange situations for me to enter into a new season that used all areas of my gifts in a way that I hadn’t realized went together.

I have fallen in love in His people. The arrangement of pastors and volunteers and children is complex but so divine. There is so much work but the reward of sharing that Jesus is who you can put your hope in with a classroom of students.

Amazing. Nothing like it.

It’s an umbrella of blessing. I felt it the day I walked into the job and with three weeks left, I still feel it. I’m learning that God moves through his people. That as much as I want an archangel experience, with clear directions on what I do to serve him.. He is choosing us instead. He is working through our church and community. He is wanting a revival and that when you are available for the spirit to guide you, He will not disappoint. People need Jesus and there must be a sense of urgency when we think about that. There is no time to be shy or unsure of who God has called us to be. He has called us to be his servants. Are we willing to “let it be to me”..? I am. Are you?

Having this overwhelming peace in my life the past few months.. It is easy to identify that I know God has called me to tell others about him. I know he has given me an affection and openness to our youth. I know that I have creative gifts and somehow that all works together in how I serve him.

But..I have felt this wave of sadness today as I realize that my time is almost over. I do feel a calling that was not here when I agreed to do this job. I have said what Mary said. I believe what Mary believed. I am your servant. Let it be to me. Use me wherever you kingdom needs me. I have used this job as a way for me to just immerse myself in serving others. A way to get up and get dressed and get started. What happens when I don’t have to do that anymore?

Am I going to be okay ? I know there is more. I know this isn’t the end of everything. But it is the end of knowing what each day will look like. I have found comfort in knowing. Working has showed me something that I never would have known. I have a purpose that I had forgotten about and how incredible it is to be available to be used by God. I feel like whoever is reading this might need that reminder too. We can all be available to be used by God.. Wherever we are.

As Walker’s birthday comes up this Saturday, there are many emotions that I have been tucking down to deal with later. It is going to be tough. How do you celebrate a birthday without the child? I am not really sure. We are going to Dollywood with some of our closest friends to try and put good memories where bad ones could easily begin to take residence. But that won’t fix the fact that this day is still going to be missing the child that was born on it.

I have wanted to do something for Walker on his birthday but I don’t even know what that something is. Because nothing satisfies the void. Nothing feels ordained or set aside as what would somehow fill that space. Maybe it is just too fresh for us to plan something. But if you feel something. If you hear something, do it in his memory. He would have been 6 this Saturday. While we have had blessings and births in our path the past 8 months, nothing heals the hole that he left behind. We are walking through new territory and it is all so good. We are choosing to be used. To be available. To encourage others to love more deeply and share more openly. But it is still so hard to walk through life without our firstborn.

I ask that you pray for peace and joy to continue in our hearts as we experience the next three weeks. That God would make all paths clear and that we can continue to serve him with glad hearts.

And Mary said,

“My soul magnifies the Lord,

and my spirit rejoices in God my Savior,

for he has looked on the humble estate of his servant.

For behold, from now on all generations will call me blessed;

for he who is mighty has done great things for me,

and holy is his name.

And his mercy is for those who fear him

from generation to generation.”

Luke 1:46-50

sixth and a video

Happy Birthday to our sweet Walker Hayes. We enjoyed a wonderful time the past few days with friends in Pigeon Forge. We had a great time celebrating life as we laughed and enjoyed the sights. It was a good time and even with all the things planned, there was an empty spot where Walker would have been. A seat next to his friend that was undeniably open. A place that will sit empty until we are all together in Heaven again.  

We miss him so much here and the life that we thought he’d live but we press on and celebrate the impact that he can have by reminding us to live each day to the fullest. Thank you for all your sweet comments and texts. Means a lot to know you are thinking of him too.

Here is the video that was made for us by my best friend for Walker’s funeral. I haven’t shared it before because it was too painful to watch but I feel like now is a great time to see his life and celebrate all the fun times that we had. Enjoy.

 

What really happened, in my opinion.

What I think really happened to my Walker, after processing and forming an opinion for the past two years.

I have been dreading writing this part of our story. I have felt the need to summarize it from our old normal to not so much normal. I have written and erased and yet it just seems an unsurmountable topic, even now. I feel it would be cathartic and torture but I will try. Here is what I think really happened to my Walker.

Walker was healthy, normal by our standards and so happy. I feel like he was far beyond his years in the memories that we were able to create with him at such a young age. We did everything that society told us was normal and a lot of stuff that was “extra” just to make sure he was healthy.

He was a normal birth with an epidural. He got shots, like he was supposed to. I nursed for 13 months, like I was supposed to. I only made homemade baby food, like I was supposed to. We cloth diapered. We did Little Gym classes. I kept him with me until he was 6 months old before leaving him in the nursery at church. I read every book on how to parent, sleep and feed your baby to raise them “right”. I took him on playdates. We read and read and read. We laughed. He grew. We dreamed.

Everything was normal. Everything was moving forward to continue to create the little man that I had dreamed about.

One day Walker was running up the stairs and tripped at the top of the landing and fell into a bench. He busted his head open and had to have 14 stitches. He was fine. I almost ran outside naked freaking out while holding him when trying to figure out what to do.. But all was eventually fine.

One year later, Walker fell off the bar stool in the kitchen and landed straight on  his head. It welled up to be a huge goose egg. It was in the same spot that he had busted his head the year before. But he was fine. Nothing strange. Nothing weird. I was fully dressed for this incident.

3 months later, Walker had his first seizure. He was sitting at the table, creating lego airplanes, when he starred off into space. He wouldn’t respond to his name and a string of drool fell from his mouth. His lips turned purple and I knew something was desperately wrong. We went to the ER and he returned to normal. They dismissed it as a febrile seizure and nothing else.  Walker had a fever several nights in a row leading up to this day but once again, nothing strikingly abnormal.

We came home and he fell asleep that night in my arms on the couch. I layed him in bed and checked on him every hour, alternating between Tylenol and Ibuprofen to prevent another spike in fever to possibly cause a febrile seizure. I was laying in bed that night at 1 am and heard him moaning from the hallway. He was passed out and having another seizure. Things would never be the same. I don’t know if he had one and wasn’t breathing before this but he had tried to come for help and not been able to make it.

We left for the hospital that night , not to return for 3 months. You know the story if you followed along. He was in a coma and not able to be brought out without a constant state of seizing. Our entire life felt like it had come crashing down. Our 3 1/2 year old was sick and we didn’t know why.. We went from Columbia to Memphis to Atlanta looking for help and answers. At one point, it appeared that everything was moving in the right direction. Memphis was able to pull him from the coma and had started rehab. They had a very grim prognosis but one that we weren’t willing to accept. We went to Atlanta for rehab for 6 weeks. Then he started having seizures again and we started to understand that things weren’t going to be the same.

We had faith that God could fix this and prayed specifically for restoration. We had many highs and lows over he next 20 months. When it appeared that we needed to go to Duke for treatments, it was our last effort on restoring his life. It only made him sicker. We spent the rest of that summer in and out of the hospital only to come home in November  on Hospice. All our efforts had failed. Walker was not going to be healed here on earth. In April, he became unable to keep his food down and was in a constant state of seizing.

We had tried everything from Cannabis to Chemo. How could nothing of worked? I had processed the  cause the entire time from every angle of how this could of happened.. When I finally gave into genetic testing, it allowed me to see that while genetics don’t always explain why someone gets sick and another doesn’t. It did show us that Walker had several mutations that basically allowed him to hang on to heavy metals and toxins that others might get rid of easier. Could 3 years of vaccines, chemicals and toxins from the environment have been building in his system? Could his falls have caused his spinal cord and nerves to be compromised? Overworked? Somehow creating this perfect storm of misfiring of his brain? A fire in the brain?

That is the only thing that has made any sense. He had a genetic predisposition to not rid of these environmental toxins and due to this injury, it pushed his body in overdrive and it just couldn’t handle it. Did I mention that ALL of his seizures always started in the same spot of both of these injuries?

Here’s what I take from this. I feel like my initiatives to “rid” of toxins early in his life through my organic craze, formaldehyde avoidance,  breast feeding obsessing.. It prolonged his ability to fight off the vaccines or other foreign toxins that his body couldn’t naturally rid of. This is not hocus-pocus. This is a very real thing. He had two mutations of his MTHFR gene and there is research up the wazoo on what to do if you have these . I actually have the same mutations.

After all my research, I have found that genetic testing can save lives. It doesn’t guarantee that just because you have a mutation that something like this will happen. BUT , it could help in educating yourself on vaccinations and other important choices.
These two mutations only affect about 10% of the population but had I known this information about Walker . I would have never vaccinated him without detoxing him afterwards. I know this is a personal subject, but it is the only thing that I discovered could take my normal, healthy, happy child. This happens all the time with other vaccines.

Encephalitis is what Walker was diagnosed with and that is the main side effect of all vaccines. I’m not saying don’t get them. Just know if you’re child has the ability to rid of the toxins afterwards. Maybe if Walker hadn’t fallen, he’d be okay. Maybe if he hadn’t busted his head he’d be here. Maybe . Maybe. Maybe. It has kept me awake for  most of the nights for the past two years. Maybe this information can save someone from the pain of losing a child. If you don’t believe me, watch Vaxed, watch other documentaries from parents who have lost their children, research it.

I get it, so many people make fun of the idea that chemicals harm us. They think it is cool to mock those of us that believe plastics are bad, foods can make you sick and acknowledging the danger of vaccines among many other things. They say, I’ve done it this long and I’m fine.

BUT can I tell you that this not a joke. That cancer is coming from somewhere and that what we put in our body matters. I lost my child from something making his brain go crazy. Chemicals do that. They don’t deny that.  God created us perfectly. God created us to be well. Something around us is making us not well. Somewhere in this mess, my child couldn’t fight it off anymore.

You may not agree with my process of what happened, but maybe this can help someone to take a step in a different direction to help know what they are working with.

I praise God for Walker’s life and for the journey that we were on because we got to cut the crap on our relationship with the Lord through it.

I pray that those who have been by our side or read this blog…I pray that they change their lives right now to honor you because after this short blip of a life, comes you.  As strange as it sounds, his illness took his life but it gave me mine. This made me see my faith as something more than something you aspire for when you become older. It is the only thing that matters.

God is all that we have, people will come into life and out of it and what do we have if not faith in Jesus to carry us through.. Friends, it’s real and the boats leaving with or without you, lean on Him. He will carry you through, just as he has us. 

 

 

MomRage

scene: One southern proper pearl wearing mother driving home hungry exhausted and one extremely well mannered four year old after 8 hours at church functions.

“BE Quiet. Why won’t you just stop? ”    But…crying and thrashing about….

“I’ve asked you to stop . Stop. Stop talking. STOP IT.”  

But.. cheeseburger.. I want a cheeeeeeessseeburger….more crying and now throwing of Toms and rain jacket.

” AHHH, what is wrong ? I want to give you what you want but I can’t when you are out of control”

(Screaming on my part. Almost honking of horn.. but wait it’s the south, we don’t do that unless there is a natural disaster upon us. )

We were only in the car for 15 minutes but this carried on the entire way home. You get the point.

Result: Extreme meltdown from both parties involved. One is pardoned for being four and the other is embarrassed by her lack of everything.(grace, patience, right things to say). Nothing seems to work, consistently , specifically upon exhaustion.

I couldn’t stop thinking why he wouldn’t just behave so I can give him what he wants? I want to give him what he wants! I want a cheeseburger too! I ponder this thought after he finally goes to bed, without dinner. I eat grape nuts.

I can’t shake how insane he was and how he just couldn’t find the space to breathe and stop crying. I can’t believe I screamed like that.  I’ve always thought when people swerve on the road, it was mostly for texting or intoxication, but I’m pretty sure reaching towards the back of the car to pop some part of the child’s body causes the same scene, momrage.

Momrage: occurs when objects are being hurled towards mother in driver’s seat while children thrash about wildly . Something must be popped, taken or stared at intensely before subsiding back to normal driving. Swerving and sudden jerking of steering wheel are big tells of Momrage.

You know its true.

Our own captain america, not captain planet as I mostly refer to as. Seriously.

Now battling a migraine, I begin to sort through Facebook, not looking for anything but hoping for something to create a distraction.

I come across a blog post share, read the header and decide if it’s worth my five minutes. It was something about 1-20 things not to say to your strong-willed or unbeliveable well mannered child.

Um. Hilarious.

Yes, please.. I’m so incredibly unhopeful to find any encouragement but read it anyways.

sidebar: can’t remember blog or title, so I am paraphrasing

” After talking to her strong-willed child, she gives him a verse to memorize, prays that God will use his stubbornness for God’s kingdom and then asks him if he want’s to build others up or tear them down? He answers build them up. “

Conviction. Truth. Realization.

I’ve said these things to my own children. I know these things but here we are and I needed to be reminded that I am trying to teach my child to build others up. I can’t do that if I’m yelling at him or losing my mind or swerving down the road avoiding cheeseburgers. If I’m not constantly praying for God to gift me grace to give to him. Let my words be yours.

I felt like I learned a lesson here for my Wes but then I began to parallel this moment to my relationship with God. I began to see that this is exactly how I talk to God. I scream and beg and tell him all the things I want and how I want them. I don’t stop and listen.

How often is God waiting for me to just BE quiet.  Just Stop it. STOP IT. Wait for Him to speak. I know He wants to give me what I want but He can’t do it if I’m yelling at Him.

God want’s a relationship with us and a relationship doesn’t work well if one person talks the entire time.

All I wanted was for Wes to listen but he didn’t and so we came home. He didn’t get what he wanted and he didn’t even get what he needed. He went to bed to rest.

How incredible of a turn around is that? How incredible that even though I got an “F” on parenting yesterday, that God still loves me enough to teach me how to learn from it and how to use it in my relationship with Him?

There is actually more to the story, if you are still hanging on. If not, that was a good stopping point.

So, I have Staph in my arm. Score. This is my second time with Staph in one year. Awesome. Apparently it lives on our skin and is no problem until you get contact dermatitis from a bug bite while exploring the great countryside at the Biltmore. Score again. (Best day ever, btw)

Biltmore Gardens. Not sure if this where the contact dermitist was contacted . but somewhere near by.

But it’s like taking on a life of its own. It’s spreading. Those that know me, I went to Doctor’s Care. Gasp. I know. It’s bad. So, confirms Staph. Gives cream and antibiotic .

Two days later. Still spreading. Wondering if I actually have flesh-eating bacteria and only a few days left on earth. Like , really wondering. So I start praying. Last night. After my great epiphany of how much God loves me and gives me his grace.

But now I am praying for healing. Now I am praying scriptures that I have prayed many times before for Walker.

Now I am praying verses that I believe and still think can heal even though, God sometimes chooses not too.

I spend time just getting real with God and then I wait for God to say, It is done. You are good. Stop worrying about it. But I don’t. So , I release my fears to him and go to sleep.

Today arrives.

I am filling in at church for a friend while she is on maternity leave and am working in my office when another friend arrives. We talk about nothing and everything in 5 minutes.

But right before she leaves, she mentions she has a medicine she is on for this reaction she has for this problem she had. I almost glossed over it but then i said WAIT. Show me.

So she shows me and would you believe that before I know it, we are both standing in this church office in our tank tops comparing our extremely similar problems. Minus that mine has staph.

Contact Dermatitis. However we both got it, different ways. It looked exactly the same. Minus staph.

I seriously screamed. AHHH. That is so simple.

God loves me enough to bring someone to me, have them remove their clothes and say, yep you are not alone. You are going to live. Here is some cream.

I can’t even make this up.

It’s hard to stay strong after all we have been through. I have gone from laying in my bed in pajamas feeling sorry for myself binging on Netflix to WORKING at a REAL place with REAL people in REAL clothes. Sometimes I feel like my life changed so quickly after Walker went to Jesus that I am doing it all wrong. Should I still be in my jammies? Am I really going to okay in real pants?

But then God reminds me. Stop second guessing yourself. Stop trying to doing it all. Stop telling me all the ways I can help you and just let me help you and give you what you need. I am here, I will assure you when you seek me. Abide in me. Build others up.

“Therefore encourage one another and build each other up , just as in fact you are doing. ” 1 Thessalonians 5:11

 

Finding My Worth

This quote has been blowing my mind all week.

I find myself thinking that I am a very unlikely writer.

I find myself wanting to run from my gifts and just do something simple and normal. I love my art and writing and my voice but it is wobbly. Very.

I feel like I have lived 35 years of not trusting who I really am. Like it wasn’t right to like these things because I didn’t think I was good at them or no one really cared what I thought.

I was able to push down the words, put them into journals, ignore the unusual way that I focused on the way words went together.

It wasn’t until I had to write. It wasn’t until I had to write about what was happening with us and Walker. I had to update. I had to let people know so that they could pray. I had to.

I think what I realize now, is that my struggle with writing, was never finding the words..but finding my worth. I didn’t feel that I was good enough to be heard.

I am crying even putting those words into font. It seems like my struggle all these years wasn’t with what to do but who would care if I did? Would anyone want to know what I was writing about? What God was teaching me? Did I have anything that could help someone or bring them joy?

I am not sure exactly what I pinpoint is the reason that I had so little confidence in myself or maybe I do but haven’t reconciled it yet.

I didn’t grow up in an everyone gets a trophy generation. (totally think that’s lame, ps) It wasn’t until I started reading parenting books that I even realized you could “speak to a child’s heart”. I didn’t know that “hearts” needed to be cared for.

As much as everyone wants to pretend that we all have our ducks in a row as adults, we are all just taller versions of who we were as children. Carrying around this struggle of,

Am I good enough?

Sure, it gets buried and most of us don’t have any clue that what we are doing now is a reflection of who we were as an adolescent. But if you look at your choices, relationships and inner thoughts….Are you still battling for this to be answered?

I see the cry for help in my younger relationships and experiences..Just trying to find someone or something to make me feel like I was good enough.

When I was seeking approval from others, in a way that denied my worth with God.. I lost myself. It was easy to realize things I liked and to do them. But to really put myself out there. To ask someone else if they thought what I did, was good enough? That was just too hard. I’d rather sit this one out. I’d rather not play the, who am I meant to be game, if it meant finding out what people really thought.

The only remedy to overcoming the heart issues and finding your worth is by looking to Jesus. The only way you will ever release your inner struggle of value is to say..”Okay, I can’t do this alone. I don’t want to do this alone. There is nothing in me that will ever make me feel good enough. But there is in you, Jesus. There is in you.”

Finding my worth in my struggle of losing my son. It’s the most unlikely story. It’s the hardest way to learn that you are worth your value, that through leaning on Jesus because nothing else can hold you up. You are worth it.

“You don’t write because you want to say something, you write because you have something to say.” -F. Scott Fitzgerald

I can’t not write now. Every thought I have forms a paragraph. Every thought I have, I put before the Lord and ask, Is this worthy?  I can’t deny the calling on my heart to spill out the truths that I believe that God is sharing with me and what I’ve learned in my crazy, you just don’t even know the half of it, life.

I lost my son but through it I gained the ability to put my worth in God and not in what anyone else thinks. It is still hard. I still cry every day that he is gone. I still can’t believe that this is my truth, but I can put forth my words. I can rely on HIS TRUTH. I can move forward.

It’s really incredible to witness the cycle of life…from high to low and all the in between. The fact that my low can really lead into my high. That through my journey, you can find hope for yours. That what you are going through isn’t the end but can be the beginning.

So, I’m writing. I’m seeking first God. I’m trying to find my place in the church that God can use my gifts for his glory. Most of all, I am willing.

I am willing to be honest and share my experiences and my hope is that not all of them will bring you tears, ( I’ve heard I’m good at that) but laughter and encouragement and hope.

“The LORD will fulfill his purpose for me; your steadfast love, O LORD, endures forever. Do not forsake the work of your hands.” Psalm 138:8

“being confident of this very thing, that He who has begun a good work in you will complete it until the day of Jesus Christ” Phil 1:6

I pray that you find your worth in God and not in the approval of others or in your own works..But by being involved in His. Find your worth.

Why are we so important?

When did we become so important? Look around.

Everyone is so freaking important. In public, try and make eye contact.. It doesn’t exist anymore.

People no longer need to look down to be ignored.. You can just stare at your phone. If you are staring at your phone then you immediately send out the vibe, I’m busy. Check ya later. Or I’ve got a bunch of people that need my attention that aren’t here and I must respond now or my phone will explode. I’m so important.

Okay, sarcasm laced. Please note. I am just of guilty of this but at least I look up to notice it happening… Feel sorry for the world and get back to my importance.

I mean, my spam emails aren’t going to delete themselves.

Have you ever been sitting next to your spouse, only to look over and you are both knee deep in your phones? Or your children? This one just kills me. It happens..

Do you remember a world without iPhones and Wifi?

Do you remember when the only seemingly important people were the ones with BlackBerrys ? Do you know what a BlackBerry is? Not the fruit. You crazy generation Z. Side bar, what are we going to call the next generation? There are no letters left!…Generation A2 ?

A BlackBerry was the first phone or PDA…personal digital assistant..lol..It had email access that was widely distributed to realtors and VIP business folk.  There was a palm pilot, yes mother, you had one. But I don’t think it had internet on it and it was used as a fancy phone book. I’m pretty sure you had to hook your telephone cord up to these to get internet. The phones had internet access before internet was accessible.

I remember longing for a BlackBerry … I wanted to be important too.. But only for the Brick Breaker. Let’s be honest. That is the best game in the entire world.

I’m not a genius but I watched Ashton Kutcher in the Steve Jobs movie and it looks like he and some computer geek invented it together.. Or he paid him to invent it. I don’t remember.. Either way, best game ever.

I’m convinced that no one was actually checking their emails and being important but trying to beat each others scores on Brick Breaker.

Truth.

I feel as if a larger problem is forming with all of the technology and social media.

(as I write my blog, on my computer, and then for the internet that I will then share on FB)

Sigh.. There are totally amazing good things that come from both.

The problem I am having and noticing is that we don’t get a break from it. Every “down” moment we have is spent exploring what we missed while we were working or fulfilling our daily duties or sleeping. Good Lord, what has happened in the world since I dared silent my phone. Does the world even still exist?

.. and instead of talking to the people around us in our “down” moments, we are face first in a blue glow of what’s happening around us. Or what we think is happening around us while we actually ignore what is physically happening around us.

Do you follow?

I know this isn’t new information. I’m sure someone else has posted something to this same tune..I have no actual advice here based on research except maybe we should put down our phones and pay attention to the people we are in front of. Sure, emergencies happen and you need to know something right then and praise God that you have the means to do so.

But I am so afraid for the people that we are passing around us, actually around us that are struggling with something .. That are hurting.. That feel alone and ignored .. that we are ignoring. What are our children thinking? What are we teaching them?

Can it wait?

Can’t your Facebook status or check in of where you are buying a coffee from wait? Can’t that email that you just got wait. Ding.. another one.. You’re important..Ding.. Can you handle ignoring the dings? Do you have a physical response to the alerts your phone gives? You might have a problem..

And whose life has been altered by reading what someone else is doing at this exact moment in another space? I’m going to be honest and say, I don’t care what you are doing. In fact, when I read play by play updates of seemingly mundane tasks from other people, I don’t feel any better about myself or them. I actually would like my time back.

By all means share your life! I am ! Tell us the hilarious story about you thinking another person is your husband or when you spill water in your lap and it looks like you peed on yourself , you know who you are..Please, the internet needs real life and encouraging thoughts and funny pictures.

But.

Update at home or in the car, when its parked… Or when you wake up or when you lie down.. But out in public , in front of other people just so you can not interact with the human LIFE next to you..

It’s driving me mad. What kind of world are we creating for our children? Selfie elbow? Really? Why do you have to be IN the picture you’re taking?

Are you adding to the social media fantasy world or are you sharing real life ? Why do we think we are so important? Let’s quit focusing on our own importance and make the humans we are around feel important.

Please hear my heart, cloaked in this plead with humanity. If you are in public.. and everyone else is on their phones. Put yours down. Be available for LIFE to happen with the human that you are standing or sitting next to out of all the other humans in the world.  You might have a conversation. You might offer encouragement. Notice them. You might need someone to notice you too.

“If you were of the world, it would love you as its own. Instead, the world hates you, because you not of the world, but I have chosen you out of the world” John 15:19

“Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is–his good, pleasing and perfect will.” Romans 12:2

“For who makes you different from anyone else? What do you have that you did not receive? And if you did receive it, why do you boast as though you did not?” 1 Corinthians 4:7

We are called into this life for community and to be set apart…TO BE DIFFERENT. and God forbid something ever happens where you need the actual neighbors or humans near you… And they can’t hear you.. Or they don’t know you.. Be available. It’s apart of our commission as people of Jesus. I think the two thoughts of ignoring others in public while on our phones and being available in case someone might need a smile or encouragement are completely 100% related. Be set apart. Be different. Be available.

It’s much easier to tune others out. It’s much easier to focus on me.. my work.. my friends. my life. But I think it’s time to turn the tables on our relationships with our phones. There is far less satisfaction in thinking about me..Think about, look at.. Be open to the people around you. It’s accountability for me to even write this. See the humans in your life.

We are different because we follow Jesus, let’s look different..

 

What to do when a baby is born in your bathroom...

When my cousins needed to crash with us for a few weeks until their baby was born before moving to Atlanta, we undoubtedly agreed. Kala had helped me care for Walker when I needed a hospice nurse and I was happy to have them back around so much. Since she had been through our journey with us, it only felt natural to have her in our home again during this transitional time in her life. And she was 9 months pregnant and I love babies. Especially brand new ones. They are a small glimpse of the way God created the world to be. Perfect. Innocent and Quiet. 

If I could smell fresh baby everyday, I would. They should make new car fragrance that smell like fresh babies. You know what I mean??? Right? If not, sniff a brand new baby and try not to do it again. You can't stop yourself. One sniff for the road. 

It is always the saddest day when they lose their fresh baby scent. Scratch and sniff does not apply here. You'll just end up with cradle crap under your nail.

But anyways. 5 days past her due date does not make for a happy momma and so she scheduled an induction for Friday morning at 8am. Well, God is good like that and had her go into labor at 1am Friday morning. Not just any labor, the kind of labor that goes from zero to sixty in one hours time. She woke up with contractions and within a few minutes realized that this was not a drill.. False labor people, its real. But this was not that. 30 minutes later , I woke up to my cousin Brandon standing over my bed calmly saying...

"Hey,.. Kala is in labor upstairs and she might have the baby in the bathtub. EMS is on the way.."

I say... not so calmly.. "WHAT? Kala's having a baby in the bathtub????" 

I am standing up and running up the stairs before I am even sure this is actually happening. I come to and I am standing over Kala in the bathroom trying to clarify what was just spoken to me.. Surely.. Surely.. You can make it to the hospital.. 

Next thing I know, a Fireman appears in the bathroom, upstairs, with us.. Trying to calm the situation when a woman is having contractions about 1-3 minutes apart is not really breath well spent.

A birthing woman will do what a birthing woman does.. Birth. Contract. Birth. 

No words or teams of Medical Professionals will slow a baby descending  down a birth canal.

So side bar. Several months prior.. Kala had an inclination to contact a doula/midwife about being present for the birth to help her stay drug free throughout labor. So un side bar.

I am suddenly on the phone with said doula. Explaining she needed to come to my house now instead of the hospital because this baby is coming here. She tells me to encourage Kala and help her be comfortable.. So I find every towel/blanket that I own and pour them all into our upstairs bathroom. Pillows, rugs, basically all things fluffy to distract from the harshness of a tile floor. I find them all. What else? Chuck pads. Okay, thank you Walker. 

We would not have disposable chuck pads to lay over everything if it weren't for you. The doula is now lost and can't find my address in her GPS because my neighborhood is actually in Narnia and not on GPS.. I pass the phone off to an EMS guy to give directions.

I'm back in the bathroom where an EMS professional, Jenny, has now taken over from the SIX men that were trying to convince her into a creaky old wheelchair that will take her down the stairs and onto their EMS vehicle, only to have her deliver on the side of the road in a field somewhere. So , luckily for her, she said " Um. NO.  I am not doing that chair and I am having my baby here." 

An entire year later, the doula arrives. She manhandles the situation in the most amazing way possible. Checks the fetal heart rate, assess Kala and reassures her. Five minutes later, the baby is born...In my bathroom. On the floor. Tears.

Besides being the single most unexpected event in my entire life and theirs, it was the most beautiful experience to participate in. And by participate in , I mean pretend to be a nurse/errand girl/clean up crew. Kala did all the work, I just ran around in circles trying to be useful and discreetly wipe things down.

After Lyla Kate was born at 2:43 am. We moved Kala to the bed and said farewell to the 6 extra people in the room. All who still had their steel toed boots on, upstairs, on my floors. I'm fine. I'm cool. Focus on the baby. Hey Pretty Girl.. My chiropractor also has shown up and is tending to baby and mom. While we are all basking in the glow of baby, I ask if there is anything the doula needs.. Which since this wasn't a planned home birth, we need things that I don't have. So I go to Walgreens at 3am to get these things. 

As I am driving , it all sinks in.. All the things. The reality of what has just happened. I have heard God many times since Walker was sick say, "What the enemy has intended for evil, I will make good." I've wondered what that meant. But tonight, I hear him this time..

Say.. "What the enemy has intended for evil, I have MADE good. "

I can't even fathom the truth in this.. I'm crying so much, I'm afraid I'm going to get pulled over for reckless driving.. Surely, they would let me off once I told them what happened. But still.. That would take time.. and so I go get the things from a sweet college aged girl at Walgreens, who surely thinks I live in a rickety shack in the woods for a baby to be born on my bathroom floor.. But I care not.. Because I know I don't live in the woods.

So I'm back and y'all. She still has to deliver the placenta... Life lesson here. There is more than just a baby that comes out. So.. the doula tells me she needs a bowl. Okay, cool got it..

I run downstairs and sidebar again. My husband has been standing in the middle of the living room for an hour, trying to figure out what he is supposed to be doing.. So, un side bar... I tell him as I run past him, I need a bowl for the placenta! Here is a great insight to a man's mind. He says, "Get a bucket from the garage". .. WHAT??? I tell him, "She's not an animal Andy." I grab a huge glass bowl and a disposable Tupperware bowl with a lid. I run back upstairs and then it dawns on me half way up the stairs, that I am not going to be able to look at this bowl the same after this. I'm secretly pleading with her to choose the disposable bowl.. Here.. Which one do you want?? This incredibly expensive microwavable and oven proof bowl or this great handy-dandy bowl with a lid that was possibly brought to us with food in it from a sweet friend. 

Dear God, please choose the Tupperware.

She chooses the Tupperware. Amen.

After that, my memory just kind of fades in happy baby mode.. Which is enjoy baby and let the adrenaline die out. Isn't adrenaline an amazing thing? You don't think, you just do what has to be done.. It's incredible.

Everyone was healthy and now their family has another person in it. And it happened in my house. In this house that I thought I could never fully be at peace in because it was where I lost my son.

 We moved here for Walker, no steps in or out of the house and three main bedrooms downstairs..But now he was gone and we were left with this house. But then ..God grants Life.

Life. Life happened in my house. Life happened in my house after death happened here. The reality of those two things hit all of us at once. We were all in tears because GOD IS GOOD. He is sovereign and he will not forget us. This was planned longed before and the promise of good is not far off from the dark cloud of bad ..my friends.

God redeemed our home by bringing life into it and in the most unusually beautiful way. A way that will forever intertwine our two families and the lives of Walker and Lyla Kate. It was just the most amazing and uplifting event. I miss my boy so much but a little piece of the void was filled with the joy of Lyla Kate being the life that was had in our home. Praise you Jesus. Praise you God..

It's so good..Beauty from Ashes. I hear , I will make all things new.

" Behold, I am doing a new thing;

    now it springs forth, do you not perceive it?

I will make a way in the wilderness

    and rivers in the desert."

Isaiah 43:19

 

waiting on kindergarten.

So..Has anyone else been looking through the Facebook posts to see if people spelled Kindergarten with a “d” or a “t”? Come on.. I didn’t find any and then I thought, I must have smart friends. LOL.

Okay, well I was thinking that and also…What would Walker look like on his first day of school? I’m going to be honest that I glossed over the fb pictures of the boys his age. It’s still hard to see other little boys his age.

Walker and Andy’s coolguy secret handshake. 

He would be starting kindergarten(check it, I got it right )if he never got sick and I am so appreciative of the people who sent a sweet little text to let me know that they remember  what our “normal” lives would have been up to..if things didn’t change.. and that today might be a little difficult.

Little milestones like this have their power of tossing me back into the what ifs and how did this all happen?…I take the moment and feel it and then pull back into the present. Thankfully God has given me some things to do to take my mind off of the enormity of losing Walker’s life on earth.

Planning photography sessions and getting back into that world has been consuming. My cousins are staying with us for a few weeks while they move to Atlanta, close on their old home and have a baby! Weston is getting ready to start 4-year-old preschool in 2 weeks and Andy has started doing some baseball stuff on the side..

It’s been an incredibly hot summer to where I don’t remember what it is like to not sweat at all points in the day. I’ve questioned if it might ever end. Did the rapture happen? Have I been left behind and the earth is slowly turning into a volcano before the New earth arrives???

I’ve found myself missing the coolness of the hospitals and sweatpants in the summer. As strange as it sounds, the nurses and environment they create in the PICU ,make you feel like family. And I’ve missed them! Of course… in real life, I never want to go there again for what it means …but maybe God will give us a cooler Fall and for the love of leggings and North Face bring an early winter… And snow. I need some snow. I’ve got a snowman kit that hasn’t been cracked in two years. It’s just inhumane to not give him a life.

But back in the armpit of the South.. Columbia. I’ve been wanting to tell the story of how Walker got AutoImmune Encephalitis from my current perspective and without all of the craziness of living in that time.. Because the reality of what happened and if it can be prevented for other children is ALWAYS on my mind. Having a normally progressing life and then having an abstract illness take your child’s life leaves a whirlwind of questions..

A lot of you have asked, What exactly happened? And I told the story on our caring bridge page while we were experiencing it here…But through the journey looking for answers on how to help him gain his life back and how this could have happened..I have learned so much about food, Cannabis Oil, Effects of Medicine, Vaccines, Genetic variances and funerals, than I thought relevant.

I’ve learned that the Eastern and Western world of medicine are extremely different and there is a serious gap of overlap. I’ve learned to trust my instincts over what others think is best and when to trust God over myself. I want to explain it all.. So humor me over the next few weeks as I put information out there in the Interweb-oblivion. Not sure that’s a word.. but hopefully you feel me, on what I’ve learned and summarize some questions I have received from many of you.

Next up will be ..How it all started… Until then.. Thank you for sharing your pictures and life with those that are longing for what we had but also so grateful for what we have left and for what is to come..

 

New Song in my Mouth

“He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.” 2 Corinthians 1:4

Losing a child, as I write this, seeing those three words don’t even seem like my reality. It never stops surprising me that this has actually happened.

Losing a child is like hitting the reset button on your life. It stops all your forward motion and you stand still while the world continues around you. I have spent time reliving his life and how all this came to be. I find myself stuck on what happened before he was born that has made this all more harder to move past. Six years ago, we struggled through infertility. I spent those days longing for a child and dreaming of what my life would be like if I could only be pregnant.

I explained this more in my last post about how we were able to get and stay pregnant. What I did not share was how I felt through that time and the parallels that are coming forth as we mourn Walker’s passing.  Anyone that has ever been down the road of infertility, knows exactly how hard it is to not be pregnant…

It seems like your entire world centers around getting pregnant, having babies and being a mother. It’s difficult to be in the stage of waiting and wanting a child. I have to be honest and say that when we were going through this period of life, I found little satisfaction in anything else. I wanted to be a mother and couldn’t understand why it wasn’t happening. Didn’t God want this for me? Did we not pray enough? Was this punishment for not being “good enough”? It was all I thought about. Looking back, I see how short 2 years of wanting actually was but in that moment, I thought it would never happen.

Six years later, I can’t believe we’ve had two children and three miscarriages and then the death of our first child.

I have been experiencing the memory of the longings I had before I was pregnant and it has helped develop this amazing and also hard to swallow parallel of the two struggles. My desperation for a child and my devastation of losing that child has led me to recognize that children don’t complete your life. I know. Fill in the blank of children if that isn’t your struggle but bear with me here.

The longing of being a mother and having it fulfilled was the most wonderful and incredible experience I have had in my entire 35 years of life. I feel like becoming a mother redefined what it meant to be a woman. There are secrets that mothers have amongst each other that makes it the most sacred club to be apart of.

But,

Sitting here, six years after that longing and now feeling the losing of that dream. I am no more complete because I have become a mother. I am no more satisfied with myself then I was then.

I am changed but not complete.

I remember having an epiphany in the hospital when Walker got sick. I felt like the world was ending with the possibility of his death. Then I realized that this happened to him and not me. Until that thought, I realized that I had identified us as one. You do that as a mother. You physically feel the pain of what happens to your children. That is the glorious gift/curse of experiencing motherhood, it teaches you how to love others more than you ever thought possible but to the point of experiencing their pain as well.

“For just as the sufferings of Christ overflow to us, so also through Christ our comfort overflows.” 2 Corinthians 1:5

Motherhood changed me but what I wish someone would have told me is that your circumstances don’t define you. Being a mother won’t fill you. Being pregnant won’t fill you. All of the cute monogrammed outfits won’t fill you. (well, a little but it won’t last) There is nothing to fill that void you feel except Jesus. Cliché but it’s TRUTH.

I loved Jesus so much back then but still allowed my mind to be consumed to the point of misery because I didn’t have what I wanted. I did this again after Walker died. I didn’t have my son. I didn’t have what I had longed for anymore. He was gone and so was my sense of who I was. Because, until this point in my life. My definition of who I am had become getting married, having children and raising them.  And who am I now that this child is gone?

We can’t define ourselves based on having what we want because what happens when it goes away ? As everything eventually will.. That much is promised to us .

“But the day of the Lord will come like a thief, in which the heavens will pass away with a roar, and elements will be dissolved, burning with heat, and the earth and the works in it will not be found.” 2 Peter 3:10

All of this will go away!

Maybe not in the order that I have experienced. I feel like my lesson has been learned at a much faster rate then you normally learn when a child leaves your home for school or work or marriage. I’m sure that at the point all mothers who defined themselves by their children are left feeling like, now what?

I am saying that we can definitely delight in all these blessings of motherhood and pregnancy but not to allow these moments to define our happiness and worth in this life. I thought this was just being a good mom. I thought not having any other desires but to raise children was sacrificial. Uh.. Really?  Yes, I did and I know I’m not alone. Check out all the moms who have depression and anxiety after having children because they don’t “feel” the way they think or thought they would feel after fulfilling their hearts desire.

I totally felt unfufilled after my second child and remember thinking “How can I feel sad? I have everything that I ever wanted.” That’s because it is not meant to fill us.

Take hold of whatever stage of life we are in and allow it be enough. Allow it to be enough because our joy comes from the Lord. I find that if that does not ring true, “My joy comes from the Lord..” then my focus needs to shift from myself to seeking that simple truth. Nothing here of my own efforts will bring me the joy that I seek. The Lord alone gives that.

The desires of our heart .. Know where I am going with this? But what about the desires of our heart that God has promised to satisfy? He will give you those if you’re praying for His desires to be yours.  I wanted several children and definitely a little girl. That hasn’t happened yet and it may not in the way that I created in my mind but my joy comes from the Lord, not in him giving me what I want.

I am choosing to remove the provisions that I put on what my life should look like and just be present and allow God to use me where I am. If that means serving other families that I thought I was destined for or praying for the crowds of children in the neighborhood or praying that God would use the quiet of our house to please him. I pray that he will change my heart when I feel sad that I don’t have what I want and instead remind me that my circumstances don’t define me.

Focus on the good and on allowing the path that we are all on to be pleasing to Him. I am devastated that Walker is not here and it was awful going through infertility and miscarriages but it is through these trials and disappointments that God is allowing me to truly become the steward that He desires for His kingdom. And isn’t that the bigger goal? To be used for his glory. I’ve drawn encouragement from this scripture below. I pray that God will sustain those of you struggling and that he does give you the life you seek but for me…

“He has put a new song in my mouth…” I love that and pray that those in this same stage of suffering can be encouraged and that my words are not meant to take away your pain but as an offering of hope.

“He drew me up from the pit of destruction, out of the miry bog, and set my feet upon a rock, making my steps secure. He put a NEW song in my mouth, a song of praise to our God. Many will see and fear, and put their trust in the Lord. ” Psalm 40:2-5

 

Infertility, Miscarriages and Legos.

There have been a lot of Legos in the past three months. Big Legos. Little Legos.

Eggo my Lego.

We’ve watched Bricksburg, The Lego Movie and these weird B Lego Movies that Weston loves. We play with cool Lego people, build houses, spaceships and cars.

I’ve started working out again which has been amazing to get me up and going for the day..Things are going better as far as participating in the daily rituals of summer and trying to take ownership in my life again. I feel a numbness to what has happened but also hope that our life can move on and we can develop a new dream of what life will look like.

But I’ve been struggling to find purpose without Walker. Being a mom to two children was physically more demanding and time consuming. I knew what I did each day. Even though Walker had been sick for two years, I was still hoping that things would go back to normal.

How do you accept that things aren’t going to be the way you thought they were? How do you give birth to a person that isn’t here to grow up? I know I’m not alone in that question..I know there are bigger problems right now. Our world is in chaos. But I find myself wondering what I am supposed to do now?

I have all the christian answers but in real life, How do I make a new dream? Does having more children give me more purpose? Isn’t Weston’s life enough? Andy’s? Mine? Why do more people make being a mom feel like it is more fulfilling? 

I’ve found my mind struggling to answer these questions. Truthfully the answers aren’t pretty. I’ve separated myself from relationships that are too much energy and clung to those that are positive and uplifting. I just want a clear space to wander through what happens next.

I never really had any career aspirations. I wanted to be married and have children. That doesn’t mean that I didn’t like teaching or being a photographer.. I did..I just wanted to pour into my children and build them up for God more. I felt like that was my career.

I’ve faced the thought of not having a family before. We were newlyweds and not getting pregnant. Two years later and no baby. I went to a fertility specialist in Charleston to have something called the “Dye Test” or Hysterosalpingogram. (Yes I had to google the spelling).

I had our family doctor suggest this over the typical steps they take with hormone drugs and testing. The test told us immediately that there was a problem. I had a uterine septum which was not allowing me to maintain a pregnancy. A few weeks later, I had a surgery to rectify the problem. But then was told with fertility treatments that I only had a 4% chance of conceiving. Awesome.

So.. Andy and I agreed we’d pray and do the Daniel Fast. 21 days later, I was pregnant.

Crazy. Normal pregnancy. Normal delivery. Normal child. 12 months later, I was pregnant with Weston. Three miscarriages and 22 months later, Walker was sick and here we are.

I will tell you that the feelings you have when you can’t conceive and when you see others with children the same age that Walker would be, well it’s a very similar feeling . There is this longing to have this family that seems unattainable. Infertility is hard. Death was harder. But both are surmountable. Both can lead to new beginnings and new dreams..

Just getting there, that time in between what you want and what you have. That time makes you feel like your world is just going to end. There is no way around  ignoring that things are very different now. 

Having one child is glorious and rewarding and well, I marvel in all that Weston does. I know friends that would be satisfied with the blessing of one child! I am trying so hard to be content with Wes and our little family. It takes all that I have to try and do this everyday. I feel anger and sadness all at the same time on why he had to die. On why any child should lose their life. It doesn’t make sense. I’ve had some really rough thoughts about God allowing this to happen. I think that’s normal but I don’t like thinking that the God of the Universe could have saved him but didn’t.

Where do you go with that thought? Nowhere. There is no christian or sweet euphemism that will ever give me my child back or make me feel like this is okay. It’s not.

I don’t have poetic words to make this right. I choose to believe something that I don’t always feel is true. But it’s all I have. The hope of faith in our God and his promise to make all things right. Until then, I just have to get a new dream. I’m asking God to give me a new dream. I don’t know if I can handle trying for more children. Fear of what can happen is too great right now. Until I hear clearly from God what I am supposed to do, I’m just going to focus on Wes and Andy and whatever I feel called to participate in. God is working here and I am just going to join in until my dream is made clear. 

It’s not what I would have chosen but it’s still a good choice and I choose to keep making it. I’ve shared some cute photos of the choices Wes is making to be hilarious and how his appreciation is worth fighting for.

So until that time comes, brick by brick. I put together a new life that isn’t one that I imagined but that is still lovely and creative and unique. It’s ours and I pray that God will continue to give me chances to talk about the journey we have been on and how we choose to keep believing that there is good in all of this.

Waves keep on crashing on me

The waves keep on crashing on me for some reason..” No Doubt have I sung these words in my head over and over the past few weeks.

I haven’t been sleeping much the past week. It seems as if the enormity of what has happened seeps in so very slowly. It happens in waves. I’m functioning at what would appear, outside looking in, at a normal or acceptable level but then a wave crashes on me. I’m gasping for some understanding of how I got here. I feel suffocated with fear and sadness and shock. He’s really not here. I don’t wallow around in sadness and darkness but there are those moments in the day or more so in the night where it grips me so tight.

I have been having flashbacks to the first day that he got sick. I replay every moment of what happened as if my brain is trying to put the past 23 months into order. I see his face and I hear his cry and I try and think that if I would have done something differently, just a fraction of a second differently would he still be here. I know, it’s true torture. 

I know things would still be the same, this was going to happen…but I haven’t allowed myself the entire time, to put these moments into order. I haven’t wanted too but more than that, it was a manner of survival. Moving forward, taking care of how to help him , how to deal with each day and there was no time for digesting the moments that have lead us here.

I feel like the journey has been a train barreling forward only to have had several stops where Andy and I look at each other and ask , Is this real? The moments of acceptance of Walker being gone were first of relief. He was not the same after that first seizure. We helped him hang on with medicines, doctors, g-tubes and therapy but he was still so sick. I wanted him to have his heavenly body and to be with Jesus. That is what we all want. I didn’t have time to deeply process the loss of my first born child.

I have nothing but time now. I have tried resting and staying busy but it is creeping over me like a sadness that I only felt at the very beginning. It’s not an all encompassing sadness but a deep gut wrenching wave that will take your breath away and then retreat. It doesn’t last long but takes enough out of you to stop your to do list or momentum forward and reflect. I can’t predict when I will feel it.. Sometimes it’s provoked and sometimes it’s just time to feel it.

So instead of pushing these waves away, I allow myself to feel them. I feel a lot of things…amazement that he made it this long, gratefulness that God used his story to impact others walks with Christ, joy that he is with Jesus and no longer suffering and sadness that he isn’t here. I do take moments, hours.. to feel the pain…

I have learned that each day is a choice. A choice to get up. A choice to enjoy Weston and Andy. A choice to move forward and to imagine my life without him physically here. A choice to not let the sadness dictate my mind. A choice that my fear of all that could go wrong will be subdued to the fact that God has promised me joy . A choice to endure it and feel it all. Feeling it makes it real.

I want to move past this fragile time to a point of not bursting into tears when I think about him or being shaken when a grocery store clerk asks how many children I have.. The reality of our life being so different now then it has been is a lot to process. I am grateful for a second chance at my life. A life that I had mapped out perfectly after meeting my husband and having children. I thought I knew what was next and now I don’t. Truthfully, no one does. No one knows what is next and I find excitement and possibility in that.                         

So I take these waves of reality and moments of shock as they come. I press forward just as everyone else does each day and it’s hard. I look for meaning in this and encouragement from those around me that have supported us this whole time. I look for ways to encourage others, only if it is the small push forward that I can give that day. It matters, every little moment matters. Even the sad ones.  These pictures are just ones that I found off of Facebook of little moments that people took to show support of Walker and how    they matter to me so much more then they knew.

“And if you’re feeling Hella Good then I’ll just keep on dancing..” Sorry, it’s catchy…

rauschenberg rd

I find myself drifting off into the deep spaces of my mind.. Places I’ve been, things I’ve done, friendships I’ve made. I never remember tangible things, it’s always an experience or advice collected. Something about having Walker leave this earth makes me leave also..I  want my life to have mattered, my time and experiences to have been purposeful.. I sift through my past as if I’m looking through a queue on Hulu or Netflix..

It’s so familiar but also feels like something I’m so disconnected from. A life without medicine and shifts.. Now that he’s gone, I’m in that life again, the pause button lifted, but I feel stuck trying to find which way I move next. I keep being reminded of a friend who lost her life to Leukemia in ’07.

I found a verse she had scribbled on a slip of paper from 15 years ago..She gave me many handmade cards, all with timely scripture and cute drawings. This verse never meant more to me then it did this morning when I read it for what felt like the first time.

“See, God has come to save me. I will trust in him and not be afraid. The Lord God is my strength and my song; he has given me victory.” Isaiah 12:2

In what feels like this crossroads of my life.. I’m left afraid that I will make the wrong choices or somehow not make any choices. Chasing after a desire that has left me empty handed, I’m not sure what to do now. So I remember my dear friend who lived life to the fullest without realizing that it would be cut short at 26. As much as I have wanted Walker’s life to have been purposeful to others, I also have much of my desire to love the Lord sparked by watching my dear friend.. I want to share her memory..

 

Ladies of the ’01 summer crew (Katie is in the second row, 2nd from the left. I’m sporting the ‘fro in the second row on the right)

Many years ago I had a friend that gave me a glimpse of what loving Jesus really looked like. She was the kind of person you meet where you feel as if you’ve known her your whole life. She saw through my shallow skin and insecurities but never judged me for them. Something was different about Katie and I wanted the confidence that she had and smile that could put you at ease. She signed all her cards, My cup runneth over..

We were all from different places in the country, gathered into this guest ranch to fill our summer of ’01 and make some money.  Our jobs were tedious and from sun up to sun down. Most of our conversations were spent while making beds and wiping down tables but allowed for a closeness to form within those tasks. We would get a day off to explore our surroundings and if we were lucky, we could borrow a friend’s car and drive up though unfamiliar Colorado mountains, walk through the streets of Boulder or dine in Denver.

We took pictures on the side of mountains as if we had climbed them and then in the back of trucks on the way to serve breakfast from cast iron skillets. She made me feel like I was her best friend and sister after only just being strangers. Katie was from Dalton, GA and we shared an interest in art and music. She was a student at SCAD and was chasing a dream of being a fashion designer. I don’t know how I remember so much from our short time together except that she changed me. My life was different after meeting her.

Katie could tell a story about her childhood that would literally transport you to that moment in time. I’m not sure if it was her southern accent or abounding grace that captivated an audience, but by the end of her story, we were all on a farm in the chicken coop with her. She was everything you’d want your own daughter to be and also hope for your son to find. She shared the Bible with me in a way that I didn’t know possible. Katie loved God and her family and creating art.. It wasn’t possible to be around her without being inspired by her. I wanted to know more about the Bible because of her knowledge and love for Jesus. It was contagious and a true example of emitting the love for Christ.

I had grown up going to church and had a basic understanding of Sunday School Christianity. I believed in Jesus but not to the point where my life was about him. I could look up a verse but didn’t really know how to live for him. Thinking of Jesus as my Father, was crazy and a bit bizarre..but not to Katie. She challenged me to learn and to trust that Jesus was real..

At the time, I knew there was something different about Katie. I didn’t know all these things at the time except that I liked her and for that reason, I kept all the cards and verses and memories close. She wasn’t sick then. She was living her life to the fullest because every moment counted. She knew that then, without the pretense of sickness upon her.

All of this is about that one thing. My daydreaming or lack of direction..I’m grasping for one thing.. To be on purpose and live life for Jesus.. It’s easy when you know what you have to do each day. Now my direction is turned and I pray that my next steps are focused and inspired by those that aren’t here now.

 

Katie and I kept in touch for a few years but as it happens.. we lost touch. We had one email in 2006 where we caught up but then in 2007, I Facebooked or Myspaced her.. and found out that she had passed. I was so sad that I had lost time with her but so grateful that our paths had crossed and that she had continued to inspire my walk with Christ without her knowing. I found this quote from a fundraising page created for her.. It is the perfect snapshot of her vigor to be with the Lord in her own words…

It’s all I can do to clap in time to praise music … but I can hear Him whisper and I have felt Him only inches away if any at all and He has touched me and my insides stand in attention and my heart is red and it beats hard and fast and if you turn me inside out like an orange there would be some fantastic celebration with parades and Ferris wheels and fireworks and marching bands and jelly beans and pinwheels and fire eaters and Hula Hoops and … fat ladies in polka dots and lions and popcorn and acrobats.

I’m so tired of the sadness and daydreaming. Let us be filled with inspiration from those who have gone before us. Let us not be afraid but comforted by the closeness that both the heavenly and earthly realms overlap in. Katie had told me that when she started her clothing line that it would be called Rauschenberg Road. It was the road she had grown up on.. That name was so unique and so beautiful, that I have always remembered it. She carried her past with her and wanted it to be the name of her future. Her designs and creations. The beautiful overlap of where she’d been and where she was going.

The Lord God is my strength and my song; he has given me victory.” 

I wanted to share something she wrote to me that I can’t even believe when I read it now.

“God has been so good to us both..We have nothing to worry about..that makes it easy to sleep at nights…”

Did she know then what we would endure? That 15 years later, I would read these words and be reminded that we have nothing to worry about?. No worry makes it easy to rest… How much I needed those words..

“Can all your worries add a single moment to your life? And if worry can’t accomplish a little thing like that, what’s the use of worrying over bigger things?” Luke 12: 25-26

“Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.” Matthew 11:28

Victory. Weary worry. Rest.

Phillips four minus one in Heaven

I’ve had many thoughts these past two weeks. I’ve written many entries in my mind but couldn’t bring myself to actually type them out.

Grieving is a weird thing. In truth, we have been grieving ever since July 4 2014. That was the day that we lost our son. We had been fighting to get him back to little avail, the past 22 months. After his second seizure, he was gone. We hung on to hope that he would return. That he would speak. I truly believed that he would. I believed that God could move that mountain. I just did everything I knew to do until he moved it.

Having him slowly lose his life here on earth was the hardest thing we have ever been through. I can’t give you enough words to describe the amount of pain and heartache that we have felt. There is no word deep enough or wide enough to hold the feeling. But there is a release, a hope , a mass so much larger than the space of sadness created by watching your child die.. His name is Jesus. He carried my pain and Walker’s suffering and He is giving us peace. He is giving us hope for a new life and new purpose after death. That is the only way we are still standing and carrying on.

Since Walker’s passing.. we have slept and drawn in to our family and intimate circle of people who dug through this with us. I have organized and cleaned and rearranged like a crazy person. We traveled to Charleston, hence the pictures, and tried to do our new normal. Staying busy with projects and snuggling in my bed are my two new favorite things. Weston likes to create puzzles in some app on my phone of my pictures. We lay in bed and solve picture puzzle after puzzle. Sometimes they are of Walker.

Andy’s back to traveling for work and hitting the golf course. It’s like a veil has been lifted and we are starting to see the world again and it is truly exciting to think about other things. I feel like we stopped living  when Walker got sick and we are reentering the world again. This time as a threesome. Walker is still with us and I think about him constantly, but it is different.

But three is less than four. Somehow losing one child feels like a lot more than one. Our physical presence is 25% less…but it is really 50% fewer children. Everything feels bigger and intimidating.

We are having to start over with how to be the “Phillips Four”(my cute nickname for us) without our Walker. It’s hard. We appreciate the space that we are being allowed to take from our people. We will assimilate back into society soon..but right now, this time is just for us. For us to grow and regroup.

We have had some time at the beach and home. We go back to the beach for a few days soon. The beach is truly God’s physical promise of His existence. I hear Him more looking at the water and sky than anywhere else.

Downtown Charleston at the best restaurant, Hanks

Please keep sharing his story. Please live life differently for Him. I look forward to the many lessons I will learn and share through this next phase.. Thank you for listening and I will keep writing if you keep reading.

 

 

 

 

 

 

With Jesus.

Walker went to be with Jesus at 5:10pm on April 20 2016.

He is at peace. It is good. 

You can catch up here at his caring bridge page how we managed the last 49 days of his life. Here is his Obituary.. I will continue writing here as an outlet for myself and also as an offering to those who have traveled similar roads. While the the phrase of "waiting on walker " has changed the past 22 months.. It transforms again into us waiting on our reunion.. Thank you for caring to read and pray and watch us through this journey. .. 

Obituary for Walker Hayes Phillips

Walker Hayes Phillips, 5, was received into Jesus’s arms on April 20, 2016. He is survived by his parents, John Andrew and Karie Suzanne Phillips; and brother, Robert Weston Phillips, 3.

Walker lived his first three and a half years of life, full of adventure and laughter. He loved kayaking and fishing with his dad. He loved building with Legos and putting puzzles together with his mom. He also loved playing with his best friends, Price and Elijah, and riding on his Poppy’s tractor. Walker also enjoying singing and play his guitar. His favorite song was “Silent Night.”

Walker was diagnosed with VGKC Autoimmune Encephalitis on July 4, 2014 after suffering his first seizure. He spent the next 21 months in and out of hospitals and treatment facilities battling seizures and the damage that was cased from the initial diagnosis. Walker never regained his life as the Lord had intended but went on to share an undeniable strength and resilience that can only be attributed to the spirit of the living God. Walker gave us hope and reminded us all that we are not here on our own accord but that our purpose is in sharing in community and loving others as God loves us.

A memorial service to celebrate Walker’s life will be held on Saturday at 10am at Lexington Baptist Church, 308 East Main Street, Lexington SC 29072.

In lieu of flowers, The Phillips Family would like for you to consider donations in Walker’s memory to Hands of Hope Hospice Care (http://www.handsofhopesc.net donations/c2071) and/or Lexington Baptist Church Families of Hope (http:// lexingtonbaptist.org/hope/).

 

It's happening; while nothing is happening

The whole time we have been on this journey, God hasn’t answered my prayer ever… Not ever in the way that I want. Not ever in the way that I think he should. It’s been harder. It’s been bigger. It’s been better.

His timing. His healing. His restoration. All has been so different than I want but more than anything, it’s been better. It doesn’t feel better. But I know that it is better.

“For my thoughts are not your thoughts,
    neither are your ways my ways,”
declares the Lord.
“As the heavens are higher than the earth,
    so are my ways higher than your ways
    and my thoughts than your thoughts.” Isaiah 55:9

I know this because I prayed for a child that God would use to better His Kingdom. He’s a million times over, doing that through his sickness and that is better.

I wanted to share some of things that have happened while we feel like nothing is happening; things are happening.

One specific thing that is insane-o-rama is that we are now in possession of 692 free milkshake gift cards from Chick-fil-A.  Right? Our dear friend was at a loss on what to do, as I know many of you feel, and asked God to show her a way to “reach out and bless” us. She remembered a blog post I had written from July 12, 2014,

“Don’t worry Walker, we’ll be able to have a chocolate milkshake from Chick-fila soon. God is great and is orchestrating an amazing story for Walker. He’s going to have one great testimony once he’s healed.”

So she reached out to a few local locations and a friend who “happened” to have a direct contact with James Cathy.. And they overnighted the coupons from Chick-fil-A headquarters in Atlanta.  She said that ” Only the Lord can somehow use milkshakes to be a blessing in a time of unfathomable pain, and that I have asked of Him.”

It’s an overwhelming thing to be in a situation where people love you enough to reach back two years to something that you just threw out into the blogosphere and return with something like this. A milkshake in Walker’s memory. I love that. We are looking forward to blessing others with free milkshakes.

Our neighborhood has rallied around us and sent cards and meals and gifts and prayers. We moved into this new house in August of last year so that Walker would have no steps , bedroom on the first floor and a chance at a better recovery.  Then he became much sicker a week after we moved in. We haven’t really had a chance to meet our neighbors, we aren’t social since we are bound by a different set of rules caring for him.. Yet, our neighbor’s rallied around us like we have been friends for years. Awkward barriers broken down and mothers and fathers just connecting on what it must be like to have one of your children sick. It’s been amazing.

Our church community and sunday school friends have taken the burden of planning the details of Walker’s funeral and reception from our minds. Every detail, every expense, every moment that is too difficult to wrap our minds around, they have taken on as theirs. To have friends that are willing to wallow in the trenches when it isn’t their storm but ours and pick up the pain and stress and carry it as it was given to them.. Only love from the Father. Only love from the Father can allow such a weaving of relationships.

We have been allowed to just be here with Walker. Our families have come in for the past 28 days and stopped their lives and helped us care for Wes and Walker. They have given us rest, fellowship and some normalcy.

There has been so much more as far as encouraging emails, texts, my big hat and black sunglasses, a basket full of monogrammed mommy things and a honey baked ham. There is something happening even when nothing is happening. Do not be discouraged. I speak to myself as much as you. God is working. God is coming. I pray that today is the day. It dawned on me earlier today when I was praying that the Lord would take him into His presence so his suffering would end, I’ve begged the Lord on Walker’s behalf before. Not while he was sick but even before he was created.

I prayed this hard when I was begging the Lord to bless us with a child. He did. 2 years, a surgery and 4% chance later, we were pregnant with Walker. Now I pray that after his 5 years here with us, that he would take him. It’s a surreal moment to come full circle on a life. A life that was never mine to keep, he is His and I’m so incredibly grateful that we get to share in it. Keep sending me your stories friends, I have many more to share.

His time and what I do in mine.

In His time.

I’ll be honest. This is the hardest thing I’ve ever done. Watching your child become sick to the point of death and not being able to do anything. We watch. We cry. We hold him. We read. We give the medicine. We wait.

Each day becomes one long blur. I’m so tired of waiting. I keep trying to enjoy these moments. Tell him more things that I never got to say. I don’t know if he can hear me. Part of me thinks that he is not here and hasn’t been .. but then where is he? He must be here. So we talk to him like he is or try to.

Sometimes the medical talk happens in front of him and I find myself talking quieter like he can’t hear me then. Because, wouldn’t that be awful? To hear your funeral plans before you’ve left this earth? To hear your symptoms over and over?  Walker hasn’t spoken since July 3 2014. But he can hear. He flinches when there is something loud. He draws his extremities into his core like he is scared.

I distract myself with reruns of Gilmore Girls. I fast forward through the boring parts. Somehow Rory’s love life is an escape for me but I’m looking for her getting into Harvard. I think she might change her mind to Yale but don’t remember. I have also binged Jane the Virgin and The Office. The Office needs to just put their episodes on CD or get a Pandora channel because it is the best background noise. I can do anything with that one, with a smile. Best show ever.

I want to invest in big black sunglasses and a baseball hat with a wig attached. Not because I need a new look but because it is so hard to run into people if I leave. It’s easier not to talk about what is happening every time I step out of the house. I love those that love us but it is hard to relive it over and over. I’ve worn sweatpants or pajamas for two weeks because I can’t bear the head tilt and questions that I have to answer when I’m out. I did put on pants today and a real shirt. It felt good. In truth, I wasn’t great at wearing real pants before.

In His time, this will be over. At least the physical act of caring for him will be. Our lives will be forever changed. A room will be empty. We will be rested but we will be different. I know this. Our heartache doesn’t end with his restoration. But we will feel relief. He won’t be suffering anymore. In His time, this will happen. Walker’s still hanging on. Each day he gets worse and closer but oh man is he a fighter.

I was thinking about how hard he is still fighting, even at the end. It made me think that God created him to be well and strong. He made everything right and sin in this world is ruining it. How sad that satan is trying so hard to take this good thing from us only to be defeated at what would appear a victory. God will restore what is now broken but that it was originally so good. God wins here.

I have found myself questioning Him on why it is being allowed to drag on. Why after recognizing that he was going to Heaven soon, why is he still suffering? It led me to Job, the part at the end where God addresses Job’s questioning. Have you ever read that? God lists off for like ever, all the things that God did and created. And then asks Job where he was when God created it all.. It was the most oddly comforting thing for me. I even highlighted it. My hand hurt it was so long. God created it all and just in case you skipped Genesis, he tells us again in Job. Who am I? Where was I? So amazing. Trust. In HIS time.

Processing my Pain

I’m an optimist.

I’m always believing that doing the right thing equals getting the right thing. I believe in the power of the Lord to create the universe and I believe in his ability to step in and heal a sick child when everyone else has said that it is not possible.

I crave His divine power. I want his beauty to be displayed. I want everyone to believe in the good the way that I do.

So when my oldest child was all of a sudden not healthy and normal.. I begged the Lord to display His glory. Then I waited for it.

I had done all the “right” things, so there for, my child  would respond. And 20 months later, it hasn’t. Yes, so much good has happened between now and then. Yes, I believe that miracles have happened but the miracle of his restoration on earth, has not. Now, here I sit while he prepares to meet Jesus. What happens when the “right” thing doesn’t happen the way it was supposed to?

I am okay. I have been processing the loss of my son for 20 months. He is physically still with me but hasn’t been the little boy I remember in so long. The hope of his healing was what kept me from getting lost in the darkness of this situation.

I am sad but more then anything so incredibly disappointed that his restoration won’t happen here. He has suffered for so long that all I can relax into is that he will soon be “happy and holy”. (Thank you Phillips Friends for that phrase) I keep saying made “whole” and made “holy” interchangeably . Both fit but its not what I thought would happen. It’s not the result that I felt so clearly God had shared with me.

“He is healed.”

Maybe it meant that the Lord had already taken the pain from him. That he wasn’t suffering anymore. That he has been released from this trial. I begged the Lord that I could trade places with him. That he would give Walker back his life and take mine. But that is not what has happened and even so, it will all still be good. Because I will see my son again. He is healed. Being with Jesus is right and now Walker will see it first.

I write this as he lays next to me, deep within his pain medicine. Just waiting for when that time comes. It is truly a bizarre thing to have him slipping away while there is nothing left to do but just wait.

I think the whole time I have assumed that actions equal results, have all been under the assumption that I somehow control what happened in my life. That I have done all that I have. It’s not true. I can go over and over my choices in life to see if I did something that allowed me to end up here. It is a dangerous road to travel..

While I have not always been correct in my deductive reasoning of how things work out, one thing remains the same. That God is in this. That God is good and that he will redeem all the pain that has come into existence because of what has happened with Walker. He is powerful and he will prevail..

So I find myself repeating this verse from Philippians 4:8 in my mind over and over. .

“Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable–if anything is excellent or praiseworthy–think about such things.”

Think about such things.. Focus on what we know is true and not what we see..  He is healed. He is whole. He is holy. That is more “right” then anything else that I could want for him.

So as we wait for the Lord to make him whole, I find myself desperate to read him stories from the bible. I want him to know the people that he will meet in heaven.

It has become my last job as his mother, to prepare him for heaven. That has brought me so much comfort that I am not preparing him for the end of his life but the beginning of his new one. His new life with Jesus and his favorite warrior, Gideon. Praise you God that we will all be together again.

When we can't round up enough containers.

Today is your fifth birthday, walkie talkie. I just realized that I haven’t called you that in months. No, I never called you Walker Texas Ranger. I have never even seen that show but it didn’t stop others from asking us about it.

We were going to call you by your middle name, Hayes. Being the first time parents that we were, we consulted others in hopes of them sharing our excitement over your name. A name we had secretly monogramed on a pottery barn pillow, just to see how it looked.

They didn’t love it. So many people. So we kept thinking and daddy suggested Walker. We loved it. Your first name got bumped to the middle and you became, Walker Hayes.  The response was much more positive and now we could never imagine calling you anything but .. It is such a beautiful name. We learned our lesson with sharing your name early and kept your brother’s name to ourselves until we knew that we were sold on it. 

I remember thinking about your name for months and writing it out over and over again. What would your initials be? What would your three letter monogram look like???

Yes , I did this. I was concerned over this. Would you be made fun with weird shortened nicknames? Did anything gross rhyme with your name?

I guess I should have asked if your name was ever apart of famous tv show that I might have never heard of. .. A friend of mine googled your name to see what came up. A new country music star. She said, “listen to his music to see if he is any good or not. ” The point is, I pinned over your name because it was going to be how everyone remembered you. A name is so important and what an incredible gift it was to choose your name. What an incredible gift it has been to be your mom. 

This isn’t the way I’d hoped to celebrate your 5th birthday. You asleep on the couch next to me while I try and find pictures from before you got sick. Your sweet nurse in training who just left after sitting with you for several hours for me to paint and have some respite. But this is where we are.

You lived 3 1/2 years to the fullest and the past 1 1/2 you’ve been trying so hard to get back to life. You are so resilient. You have been through more then I knew possible and yet you keep going. You keep fighting, like this life is worth fighting for. Your purpose here on earth is not done.

I’d always rock you to sleep. People say to just lay babies down and walk out of the room. I couldn’t do that. I tried, you cried. I caved. Your daddy and I would rock you for hours. Reading. Singing. Praying. It lasted until the day you got sick. As you got older, we would lay on the floor waiting until you fell asleep. Reading. Singing. Praying. I prayed for so many things. Your future wife. Your heart. Your character. Your eyelashes. I prayed that God would build you up to be big and strong and used for his Kingdom. I must have prayed that every night for most of your life.

He must have heard me.

This is the last picture I have of you. You would sit here for hours playing with your legos making airplanes. Yes you have a sword in your shirt. 

So many children pray for you every night. Children that normally wouldn’t understand what it means to pray for a sick child. How can a child think about such things? Thanking God for trucks and trains and grammy but to call out to heal one of their friends? It’s miraculous.

Walker, there are so many praying for you and asking God to make you better. People we know. A lot of people that we don’t know. Your story has made others change the way they look at their own children. You’ve made people so incredibly thankful for time. Time to be present and enjoy the fleeting joys of having children. Time to focus on the big picture and release the insignificant details. Time to hug those close, tighter.

I don’t know if you hear me. I don’t know if you’ll ever tell me that you “love me so much” or ask me ” how do airplanes actually work?”… I talk to you like you can hear me because I have to. In the same way that I talked when I was 6 months pregnant with you and I taught you how to make a pork roast. Yes, I did that. It will come natural when you are older. I hope you know how much I wish I could take your place. I wish I could take this from you so that you can go and do what five year olds do. You’re five. I can’t even grasp how quickly time has gone.

 

“For my thoughts are not your thoughts, neither are your ways my ways,” “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts are higher than your thoughts.”  Isaiah 55:8-9

I don’t think God had this in His plan for you. I believe that Sin in this world took you from me. I believe that God intended your life for good and joy. I think that until we are reunited with the Lord that I won’t understand why He didn’t protect you from this. But. I do know that he will use your life for good. Your suffering will not be vain. Your life will be a blessing to others and as long as you’re still with us, I will not give up Hope that the seizures will stop and your mind return.

“There’s more to come: We continue to shout our praise even when we’re hemmed in with troubles, because we know how troubles can develop passionate patience in us, and how that patience in turn forges the tempered steel of virtue, keeping us alert for whatever God will do next. In alert expectancy such as this, we’re never left feeling shortchanged. Quite the contrary—we can’t round up enough containers to hold everything God generously pours into our lives through the Holy Spirit” Romans 5:3-5

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Walker, today, I pray that last verse. I pray that “we can’t round up enough containers”… that God will pour out into your life far more then we’ve been waiting for. I pray this year of your life is better. That we can do the things that have been put on hold since July of last year. That you can live more of this life on earth and truly enjoy this side of heaven.

Sick again and Sleep SOS

Walker is sick again. About a week ago , his seizures started increasing at night again. Andy and I braced for what might be another crazy leg in our journey.. We have been taking turns staying up/ sleeping with Walker since we got home from the hospital in August. He has been waking more since he was in constant status and it makes it difficult to get sleep.. More difficult for one of us..uh hum.. I mean, I am a lighter sleepier then my counterpart.. Right?

But truly the past year we have not gotten much sleep.. and before that.. we had two children. It’s like reverting to having a baby again up through the night except that the room is on fire and your child is not breathing and there is saliva filling the room..Lol. but really..I have tried everything to make this work..

I recently shared on Facebook that we need help through the night . Walker is on the MCC waiver and we have 100 plus hours a week to use to help care for him .. We are currently using about 20-30 hours a week through Pediatria. The help that we have is from asking our friends if they want to get hired with company and do a shift.. There are not any RN’s available to care for him outside of our realm.. It’s crazy but several other companies don’t have them available either. (what are other moms doing???) We have had two of our favorite PICU nurses, my cousin who is an ICU nurse, a dear friend who is a retired RN , and another RN friend who picks up a shift once a week. THat’s 5 different nurses that help us on a weekly basis .I have sweet friends who aren’t nurses that have come to help us in the past for several hours a night.. That is how we have survived.. Before August, we had one nurse for 8 hours a week. Andy and I have realized that we need more help. It is a difficult thing to swallow that you can not care for your own child. The realities of Walker’s sickness is that we need others to help.

Putting the SOS out there will hopefully yield us a nurse that can pick up one or two nightly shifts a week to help us get some strength to keep going. I was incredibly humbled at the sharing of our SOS and how people are rallying to get us the care that Walker needs. Truth be told, we would be in the hospital again right now if it wasn’t for the help we’ve had. Walker stops breathing, goes extremely tense, moves his arms and head rapidly and chokes on saliva.. He has had these seizures on and off for the past year. But when he catches a cold, which is what has hospitalized us the past three times this year, his brain just can’t handle it. Rescue meds don’t work very well and if we went to the hospital, Walker would be in a coma and most likely not recover.

When we came home in August from our last visit, he was in status and on hospice. He recovered.. and that is our hope now.. That he will recover but we are going to keep him home and search for help. Please pray that this cycle can break. Please pray that we find a good fit for our family as far as night nursing goes. (Do you know how bizarre it to have someone in your home while you sleep?) We need someone who loves him and cares for him in a manner that can only be found in the way Jesus loves us. If you haven’t followed us in the past, please catch up on his story at our caring bridge page.