Why We Are Not Praying for Healing for Ava

Before I share my heart on how God has told us to pray for Ava, let me make one thing very clear - I do NOT believe in anyway that diseases - cancer, addiction, pneumonia, depression, etc... - is sent by God. It is against His character. I DO believe He can heal anything He wants to in an instant - or however He chooses! He is all-powerful, all-mighty, all-knowing, all-loving, and sovereign. These things were settled in my soul and spirit long before the news of Ava's latest diagnosis was presented. 

We prayed for healing of Ava in the beginning when we received the diagnosis of dystonia. We stood on all the scriptures and promises for healing. Yet, every two to three years we would find out she was not healed of that diagnosis and in fact had more going on. It wasn't until 2015 when we received the genetic "disorder" diagnosis that God started working in me to understand His plans for and through Ava.  

I have written before about how God used a friend's baby with Spina Bifida to challenge my worldly view of "healthy" baby. That is a word that is defined on earthly terms. Yet I wrestled with how this precious baby who by all earthly standards was very sick and not "perfect" was knit in the womb that way. It's times like this that I have to stop and wrestle with what my earthly mind has reconciled with the Truth of the Word. In my early years, I would wrestle to make scriptures line up with my earthly circumstances. It wouldn't be until the last 7 or so years that I have learned to stop and make the earthly circumstances line up with the Truth of the Word. So when God said that this friend's precious baby was fearfully and wonderfully made as He knit her in her mother's womb (Psalm 119), I had to realize that Truth is either false, or it is true for every baby - let me stop here and add that there are things that happen in the womb due to a fallen world that greatly affect babies like drugs, alcohol, etc and those things are NOT from God and grieve Him as much as they grieve us! I also want to add that I do not know enough medically about Spina Bifida to know if it's genetic or not - it was just one of the first incidents that God used to challenge my earthly thinking against a heavenly principle!

When doctors suggested that we start genetic testing on Ava four years ago, it opened a whole new dilemma for me in my thinking with Ava. I have known from the beginning that Ava is precious and was sent by heaven with a special purpose. I mean, really ALL kids are! But I don't know that I was really aware of that in my youth when Ava was born. But even in my lack of seasoned knowledge, I felt it in my spirit with her. She was not planned by us! In fact, we had tried to "prevent" her - if you catch what I am throwing! ;) But God's plans cannot be thwarted by man - and thank God they can't! 

My pregnancy with Ava was a gift from the beginning! It would come in the middle of our failed adoption of Eden, and it was assurance that I took care of myself in what at the time was a season of grief like none I had ever experienced in my life! Depression could have easily overtaken me -except there was a life growing and forming inside me that only I could protect. THAT is what kept me going many of those days!

Ava was a perfect baby! She smiled easily and had that light you see in her now from day one! There was no doubt that she was fearfully and wonderfully made!! She was kind of the poster baby for Psalm 119! Even when doctors said something wasn't quite right, I knew she was perfect! What I didn't know was the lesson God was already teaching me. 

Ava was one of those kids who never needed much redirection. She was very compliant and only needed a semi-strong tone and a look of disapproval to stop any misbehavior - and even those mild corrections would break her heart. In our early years of parenting, we spanked as our go to consequence. But I never spanked Ava. I never had to. Her sweet spirit was there and shining from day one!

So how could it be that a thread in the knitting together of her will cause devastation? In our earthly terms, we call this a genetic disorder. Disorder is defined by Webster as "an abnormal physical or mental condition". Abnormal. In earthly terms, then Ava is abnormal - simply because our earthly definition of normal is to compare to each other. The majority defines normal, right? 

But scripture is clear that God compares us to no one! He creates each of us as individuals - carefully designed, uniquely gifted, and wonderfully made! Each characteristic, each gifting, each talent, each one is given to us for our purpose in God's kingdom during our time here on earth! With that as our standard, "abnormal" DOES NOT exist! By that standard - God's standard - Ava does not have a genetic disorder at all! She has a special gifting that God is using for His kingdom purposes! His ways are not our ways! His Word is clear that we with our human minds cannot fathom all He plans and purposes in His sovereignty. 

My standard is what God says. My Truth is settled in heaven. Ava's Truth is settled in heaven. Therefore, we do not believe that she has a disorder to be healed. We see God's love and glory shining in her daily in ways most Christians never allow. Her love of people, her carefree attitude, her determination - those are all on that same DNA that we in the world want to say is flawed simply because she will not follow a pattern this world has determined to be "normal".

I have been in study and prayer since God made clear praying for healing this side of heaven is not what we are to do. It is not a popular sentiment among Spirit Filled Believers. I get that. And I will never stop someone from praying for healing for her - I just don't believe it is in line with what God wills. Psalm 37 says it perfectly:

Keep trusting in the Lord and do what is right in his eyes.
    Fix your heart on the promises of God and you will be secure,    feasting on his faithfulness. Make God the utmost delight and pleasure of your life,    and he will provide for you what you desire the most.⁵ Give God the right to direct your life,
    you’ll find he pulled it off perfectly! He will appear as your righteousness,
    He will manifest as your justice,
    as sure and strong as the noonday sun.
Quiet your heart in his presence and pray;
    keep hope alive as you long for God to come through for you.





    and as you trust him along the way


    as sure as the dawning of a new day.

I firmly believe when we make God our utmost delight, He gives us His will to pray - and in that way, He can and will provide what we desire the most.

For Ava, I desire that she not suffer. I believe God desires that too! I desire that she not be afraid. I believe God desires that too! We don't pray for healing this side of heaven, but we do ask God to keep her whole. Honestly, my prayer is simply keep her the way she is now, or take her home! To not see the light in her eyes shining from her soul would be more devastating than telling her goodbye. I can say that because when the time comes, we will not mourn as those without hope! When she sees her Savior face-to-face, she will be rejoicing - no fear, no anxiety, no worries, no heart racing, no drooling - just dancing and rejoicing - two of her favorite things!! Why would I want to keep her from that?

I had been praying for a scripture to back up what I felt God was saying - that's a pretty good practice always! :) God will never tell you something that contradicts his Word! It was during a church service on brokenness that a dear woman who had lived with heart issues since birth and is now the recipient of a donor heart shared a verse I had read many times. But as so often happens with God's Word, it was new for me in light of our current journey. It is Luke 9:1-5

As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”

“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. As long as it is day, we must do the works of him who sent me. Night is coming, when no one can work. While I am in the world, I am the light of the world.”

That is why we are not praying for healing for Ava - because we believe he has spoken very specifically that Ava is how she is to point others to Him! Jesus does go on to heal the blind man - and praise God if he decides to do that of Ava, but even if not, we know Ava's diagnosis is not evil. We know how she is made is from God - and He will be glorified in it no matter the outcome!

We have an army of people praying for Ava, and we are so grateful! Truly, the outpouring of love for Ava and our family has been a sustaining arm in this journey. 

We continue to ask God to use this journey to show His glory to those around us. Ava has done that her entire life! And we believe that is the purpose of this journey we are on! Not to pray healing over her, but to point others to God as we walk with her in her journey to His arms! And if along the way, God chooses to restore her to wholeness, we will rejoice and give Him all the glory for it!

He Gives & Takes Away...even children

I started this blog several weeks ago. Like many posts I  begin in this season of live, it went unfinished. However, God has called me back to this one several times...I think because it is truly a stone of remembrance for me & a point of healing and encouragement for this journey...that I may need to reread down the road. But maybe you needed to hear this too! So here it is!


Sunday was a hard emotional day. John and I both have found that church is where the emotions of what we are walking with Ava tend to bubble to the surface and refuse to be squelched. Something about being in the presence of God surrounded by other believers that make it safe to feel. It's a good thing. It's a healthy thing.

But this Sunday was especially emotional! The worship team played two blast from the past songs that we had not heard in years! One of them was Blessed Be Your Name. This song holds a special place in my story - I was on stage with the worship choir at Stonegate the Sunday after Addy died. It had only been 4 days since we had received the call that would forever change my life - she had contracted cholera from dirty water and died. As that song played that Sunday, and I sang "You give and take away, my heart will choose to say Lord Blessed Be Your Name! When the darkness closes in, still I'm gonna say blessed be your Name!" I remember standing that Sunday, hands raised to the air, tears running down my face in obedience - in faith. That Sunday I didn't really believe the words I sang. I wanted to believe them. I wanted my heart to be able to say with confidence, with sincerity even in my current circumstance of pain, confusion, and suffering - my heart will choose to say Lord Blessed be Your Name. But I could only do the motions hoping my heart, mind, and soul would follow. But in reality, I was angry, confused, wanted to know "why", and was so hurt.

That was 13 years ago! As the song played this past Sunday I did the same thing. I stood - a mom facing another good bye of a child, heart hurting. I stood again hands stretched to she sky, tears streaming down my face my voice singing "you give and take away, still my heart will choose to say, Lord blessed be Your Name!" But this time, a smile was on my face - my heart meant the words my mouth sang. In that moment, I was taken back to that stage 13 years prior when my heart ached over my other daughter - my soul wrestled with how a good God could let this happen. My heart wondered how to trust a faithful God that allowed a baby girl to die right before she knew she has a mom. But this time, this Sunday, there was no wrestling. There was no questioning. I stood singing as loudly as I could through the tears and cracking voice that "blessed be your Name when I'm found in the desert place, though I walk through the wilderness, BLESSED BE YOUR NAME!" And this time, I MEANT IT! 

Pslam 56: 8 & 9 says

Record my misery;
    list my tears on your scroll—
    are they not in your record?
 Then my enemies will turn back
    when I call for help.
    By this I will know that God is for me.

In that moment this past Sunday, I knew in my mind, my spirit, and my heart that God is for ME!All the tears I have cried over earthly circumstances the past 13 years, all the wrestling with how can God be faithful, good, true, loving, when my circumstances say he left, he failed, he doesn't care - all those tears have been recorded - and the song they have written has left me with a confidence in my God being good, true, loving, and faithful! As I sang this Sunday facing similar circumstances - 13 years later - many hard roads later - there was no wrestling. There was no questioning. There was only adoration, thankfulness, and peace - oh sweet peace as I gave my Savior the praise I have come to know He deserves! There is something wonderful about getting older - it's maturity. It's living life enough for scripture to move from head knowledge to heart knowledge! I don't just "believe" the scripture now.  Now the scripture actually defines me! And because of that circumstances no longer define my view of God!

The second blast from the past song was "You Said". We sang that song over and over when we were leading the youth group 18 years ago in Cotton Center! These kids are now adults with families of their own. But we stood in that little country church declaring week after week that whatever we needed, God would provide because He said! We declared that we were asking for the souls of that small town to be turned to God - it's amazing how many of the kids who stood singing those songs with us now walk with the Lord and are teaching their children about Him! Makes my heart smile.

As I was reminiscing on those things, Ava turns and wraps her arms around me to the point that I have to turn to face her so that we are in a full bear hug. She pulls her head back, looks up at me and says, "This is so comfy and safe." I tell her I am so glad through the lump forming in my throat. She lays her head back on my chest and we sway for a few more measures of the song before she pulls her head back again and says, "This is what heaven is like!"

The dam broke. I stood with tears rolling down my cheeks falling into her hair as we held each other swaying to the rest of the song. I wondered just what God was whispering to her - but it felt too sacred to ask. I stood praising Him for encouraging her with His presence and taking away all the fear she may have about her future, and at the same time I stood in awe that He once again was using Ava herself to bring me comfort and peace for the journey. She had nothing but pure joy, peace, excitement on her face as she thought about her home where she will be sooner than any of us had anticipated. There was no fear. No anxiety. No worry. That my friends is the work of an almighty, trustworthy, dependable, faithful, loving, amazing Heavenly Father!

I am quite certain Ava in that moment was living out what Paul describes to us in 2 Corinthians 5:

We are convinced that even if these bodies we live in are folded up at death like tents, we will still have a God-built home that no human hands have built, which will last forever in the heavenly realm.  We inwardly sigh^[a] as we live in these physical “tents,” longing to put on a new body for our life in heaven, … So, while living in this “tent,” we groan under its burden, not because we want to die but because we want these new bodies. We crave for all that is mortal to be swallowed up by eternal life. And this is no empty hope, for God himself is the one who has prepared us for this wonderful destiny. And to confirm this promise, he has given us the Holy Spirit, like an engagement ring, as a guarantee.

That’s why we’re always full of courage. Even while we’re at home in the body, we’re homesick to be with the Master— for we live by faith, not by what we see with our eyes.  We live with a joyful confidence, yet at the same time we take delight in the thought of leaving our bodies behind to be at home with the Lord.  So whether we live or die^] we make it our life’s passion to live our lives pleasing to him.

An Amen to Remember

I have entered the world of the ink'd ones!

I have been contemplating getting a tattoo for awhile - but wasn't quite ready. But then I learned about starting with amen.

In two short months, John and I will celebrate 21 years of marriage! Because of what we both do professionally, and what our family looks like and stands for, we often are told how people admire us as a couple. I cringe inside just a tad when they do. I want to sit down with them over a cup of coffee and tell them our story.

Anyone who knows me, know transparency is something I strive for. But I also try to balance that with throwing my pearls before swine and constantly being a drama queen as our life has so much drama. And I also understand that my story intersects others' stories. I try to share of mine what I can without invading theirs.

For that reason, I have not shared much about John and my marriage. I hope some day soon we can share our entire testimony! It is a God story for sure! But for now, I am going to have to be a little vague. I know when being vague the mind wonders to the worst case scenario. So I want to say as I share without details that there has never been any type of affair in our marriage. We have struggled with some hard subjects and baggage, but never have either of us gone outside our marriage. I want that stated up front so those reading have that understanding going into it.

We have walked through so much the last eight years. Really our entire 20 years of marriage, but a lot of really hard stuff the last eight. I actually started listing some of it, and the list made this paragraph a novel - so I replaced it with hard. We will leave it at that.

Either one of us could have left, but we didn't. The stress that we walked through in our lives was enough to drive a wedge between any couple. At times it did. At times it made us cling to each other. But through it all there were some underlying issues that we have battled for 20 years. And I was tired.

I think probably it was my midlife crisis. For some reason 44 hit me hard. I did a lot of reflecting. I don't know if it was having a high school graduate. I don't know if it was finding myself getting settled into a home that I absolutely love on land that is my piece of heaven on earth. Or maybe it was just the first time in a few years where there was enough space to breath, and I realized I had a lot of regrets.

I spent a lot of time reflecting on the things in life that just left me wishing I had done something different. Self reflection is a good thing, I believe, as it helps you not repeat the mistakes of your past in your future. However, I also know the enemy can use self reflection to bring shame, anger, and bitterness back up to bite us in the ….well, you get the picture!

The only person I found myself truly angry with was me. Maybe that is because I learned a long time ago that the only person I can control is me. So as I reflected, I was mad at myself for not doing some things differently that would mean I was at a different place in some areas of my life - and my marriage was one of them.

I was also struggling with just the constant demands of my life - 8 children at home, two with some significant behavior issues, one with significant health issues (we had no idea at this point that Ava's was degenerative or terminal), and operating a ministry that found me constantly having to battle systems to get what was best for kids. My stress level was through the roof. I did not see any end in site. So I ran away.

I have written about that time before. I took a week and went on a work trip and then to help my parents pack. I did not tell anyone, but I was not sure when I returned if I was going to come back refreshed or resolute. I wasn't sure if I was coming home to work on my marriage or coming home to pack my bags.  I wasn't sure if I was really willing to work on my marriage anymore. I left seeking God's face and His voice. It was all I knew to cling to at that time. - not a bad place to place your grip by the way!

Over that week as I cried out to God He revealed much to me - about Him and about me! He promises that when we seek Him we will find Him. And find Him I did.

After all my whining, deliberating, justifying, surrendering, crying, and listening, God told me - make a choice and do it! You see I had said with my mouth I was committed and wanted to stay and fight, but in reality I had a crack in the door so that if things did not change, I could open it and walk out. God was asking me to shut the door - or to open it and walk out.

What I am about to say could be controversial. I am going to do my best to communicate it very clearly and theologically sound. So let me start by saying God hates divorce - let me pause to say there is no condemnation for those who are in Christ Jesus! So if you are reading this and are divorced, do not let the enemy use this to place shame on your for divorce! I think you will understand as you continue to read - Truth is Truth. Malachi 2:16 says, "I hate divorce, says the Lord." Not much gray area there. He is not a fan of divorce.

However, as I wrestled with God that week, He assured me I had his permission to leave my marriage. Hang with me to the end - remember, I know God hates divorce!

My marriage had not been operating as God intended for many years - if ever really. Our marriage looked nothing like the one described in Ephesians 5. For my part, I would swing my pendulum from submissive (read door mat - not submissive in the Biblical definition) wife to demanding my needs be met. Neither of those are Biblical or work well in a marriage.

As I reflected on 20 years of marriage that has been full of heart ache and frustrations (on both of our parts), God told me I could leave. He would not stop me. I would walk out. HOWEVER - he was NOT blessing my leaving! You see there is a difference! There are many things of this world that breaks God's heart. And there are some things in my marriage that breaks God's heart. He shared my hurt with me in those things - so He understood my wanting to leave. Me leaving would be a sin. I had no Biblical reason for divorce. But many aspects of how our marriage was operating was also a sin. Any sin outside of denying Christ is forgivable. Me walking out was forgivable, however, like all sin, it would take me outside the blessing of God. That was enough to give me pause and make me want to consider my options a little more. But God was clear - I was to go home with my decision made  - trust Him and commit to my marriage no matter what or leave and face whatever that meant. But get off the fence! Make a decision and do it.

I had been to a conference earlier in the summer and heard a woman by the name of Beth Guckenberger speak.  She is a foster and adoptive mother, she and her husband had been missionaries in Mexico, and they worked in orphan care ministry. She told her story to point to God. I related to her in many ways. So I bought her book. I had taken it with me to read the week I was gone. The book is titled Start with Amen.

As I struggled through whether to commit to my marriage or commit to leaving, I read these words by Beth:


Amen is the verbal equivalent of hands raised. It can be translated as "So be it" or paraphrased as "It is as you say." It's more than our modern understanding of "uncle" or "I give up." It is surrender in a spirit of "It's up to you[God]; you [God] do it," and ""I made the promise, but only you [God] can fulfill it." So I whisper, You sell the house. You move her heart. You heal that body. You open the door. You  provide. You go before them. Amen. So be it. In your time. I trust. I surrender. Amen. 

And this one word reorients me, calibrating me with a God whose covenant he will never break. … 

That's what I'm looking for: a spiritual confidence that supersedes circumstances, a peace that passes understanding. 

As soon as I read those words, my soul cried out AMEN! So be it! I knew my decision was made. And I knew I would have to find a way to press in harder than ever before to God - to the heavenly perspective of life. I would have to lay down my desires. I would have to lay down my rights. I might even have to lay down a dream or two. But I shut the door. I made the decision that I would go back and pursue my marriage with all I had in me and all God is in me.

I looked into getting the tattoo even before coming home - but in the middle of summer with a new pool, I knew my kids would not be happy if I could not swim with them for three weeks - so I decided to come home with the commitment in my heart and the plan in my mind.

I told John about my week and all God had revealed. I told him I wanted to get the tattoo as a reminder that I am all in! It's kind of like my second wedding ring - it's a commitment to choose God over anything I "feel" in my marriage. It's a commitment to trust God with the outcome.

So tonight, I got my first ink! A permanent reminder to trust God and start my thoughts, prayers, and decisions about my marriage - and a lot of other things in life also!- with "so be it" then let God write the rest....

Never Have I Been More Thankful for Trials

As we have walked the past few weeks processing the news that Ava is losing brain mass and are waiting on an official diagnosis of a terminal illness, I have found many things to be thankful for.

First, I am thankful for my large family! We told our oldest three the day we learned of the news. The way they responded blessed me beyond words! I knew that if no one else in the entire world walked with us, we would be ok because we had each other. With the roads we have walked the past 4 years, being able to rest in that was truly miraculous and a precious gift from God!

I am also thankful for the amazing community of Decatur. I immediately knew that we would not walk this alone. We have close friends all the way to acquaintances who we know would do anything we asked in a time of need. Ava has a class of friends who genuinely love her! With her struggles, it would be so easy to cast her aside as a social misfit and real pain in the you know what! But instead they respond with grace, understanding, and love! Even to the boys she messages and even texts sometimes relentlessly telling them she has a crush on them - they respond with appropriate, loving answers! I don't take that for granted!

I am thankful God placed it on my parents' hear to move close to us! We live closer now than we have in 18 years! They will be an invaluable support emotionally as well as in day to day life in the coming months and years! I am so thankful for them!

I have been asking for a full brain MRI for years only to be told there is no need. The one done in 2009 didn't show anything, so a new one would not be useful. At first when we found out it would have in fact shown something, I was angry they had not done one when I asked. But immediately, God answered my anger with "would you really have wanted to know all this time?!" And the answer to that is a resounding NO! I am so thankful for the years of wonderful bliss we have lived in not knowing what the future held and just enjoying our sweet girl for the amazing creation of God that she is!

But truly what I am most thankful for are the trials that have brought me to this point in my life! I remember as a young adult and fairly immature Christian reading in James 1 where I was supposed to consider it pure joy to face trials of many kinds. What?! I should be happy things are hard?! The scripture explains itself: "because you know the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything."  I can remember a season where I begged God for relief from lessons. I actually told him I did not want to mature anymore for awhile! I am so thankful he did not give me what I asked for!

When we taught youth in Cotton Center, I would tell them that God will never take you over a mountain before he takes you over the ant hill. I learned early in my walk with Him that He strengthened us bit by bit. If I would let him teach me in the trip over the ant hill, then I would take the trip over the mountain much more gracefully and peacefully.

As I have walked through one of the deepest valleys of my life - being told a child is dying - I have time and again thanked God for the Truths that are now part of the fabric of my belief system - they are who I am not just what I think.

When we miscarried our first baby in 1999, a woman of God who I very much admired shared that God was teaching me to let go of children. At the time my 25 year old self  was offended. But as I have lost so many children, that Word has come back to me time and time again. I now know it was actually a Word of peace. We lost our Hope to a miscarriage, we lost Addy to death before we ever met her yet we loved her as if we had raised her those three years of her life, we lost Eden to a failed adoption after I spent three weeks with her and bonded in a miraculous way only to have not seen her again in 13 years! We have even lost a child to the schemes of the enemy - for what we pray is temporary. I have said numerous times that I have lost children just about any way you can except through death while they lived with me. When we lost Hope in our miscarriage, the lesson I walked away from that I have been forever grateful for is that my children are not mine! The ones I birthed are not mine, the ones I have adopted are not mine, and the ones who call my house home are not mine - they are HIS! He entrusts them to me to raise and equip and train for Kingdom purposes, and it is my true honor to walk with each one of them in this life for that purpose!

But it is not just the loss of children that has prepared me for this moment. It is so many trials I have walked. Sitting alone with my thoughts and emotions the last few weeks, never once have I asked God "why?". For one, that has never really gone well for me! God has never really felt the need to explain himself to me in most cases when I ask that question - He is God, and I am not - that's why. But I have not even asked. Mainly because I trust Him. I fully trust Him.

Through the trials I have walked in my 44 years on this earth, his sovereignty is settled. I know this is not a surprise to Him. In fact, this is a result of Ava's genetic make up  - it is literally how He knit her together! He knows yesterday, today, and tomorrow - none of it is a surprise! Many might ask why that doesn't make me angry. Well, because God's love for me and His goodness have also been settled long ago in my spirit and soul. I have walked many trials that I could not explain and could not in the midst of it see any good. But those same trials now are spring boards into my calling and my ability to walk with others today. I know God loves me. God is good! He is not just good when the answer is what we want to hear, He is good no matter what! I know that. He has shown that to me over my lifetime. I don't question it. I believe it.

Because of these lessons and these Truths that are a part of my being now, my faith is truly a refuge! He is my Strong Tower that I can run to and be safe! I have spent many evenings just sitting, crying, asking God to "hold me". And He does. From the moment we received the news up until the typing of these words, I have had nothing but undeniable PEACE! I should be frantic, worried, anxious, fearful - and there are moments of that as the enemy tries to steal our joy and peace - but those moments are fleeting and are quickly replaced with supernatural, unexplained, oh so wonderful PEACE. It is the most precious gift my Heavenly Father has ever given me!

If you wonder if God is real, I can tell you without a doubt HE IS!!! How do I know? Because He has shown Himself faithful to me! He has answered me when I have cried out! He has comforted me when there was no comfort to be had from the things this world had to offer. He has filled me with joy and peace that surpasses all human understanding. But to get here, I had to yield to Him. I had to walk in obedience to Him. I had to let Him take the lead and trust Him for the outcome. Never have I ever been more thankful for the lessons I have learned as I walked with Him than I am today!

Our Ava: A new diagnosis. It's terminal.

I will warn you in advance – this is long!

These are the words I wrote when we found out a few weeks ago:

Many of you came to our house back in May to pray for healing for Ava’s scoliosis.  The Spirit of God was most definitely there and His presence was heavy. So when we went to the doctor, and the xray showed that there was still a curve I would be dishonest to say I wasn’t disappointed. But as always, God knew something I didn’t.

The doctor recommended an MRI. If she had been healed that day like we had all asked, the MRI would never have been ordered of her spine. What they found on that MRI has changed our lives.

When doing the MRI of the spine, they caught the base of the brain. They could see just enough to know that there was an abnormality in the base of the brain. They sent the MRI to her neurologist who ordered a full brain MRI based on what she saw there.

We went into the doctor appointment to get results knowing we would probably hear news that we were not wanting to hear. We figured we were going to learn that she had a brain malformation that was not caught on her first MRI when she was 3. We expected to have another “syndrome” diagnosis and perhaps a more concrete understanding of what is happening in her body.  What we were not prepared in any way for was the news we were about to receive.

Our amazing neurologist took us into a different room while the nurse colored with Ava – that’s your first clue the news is not going to be what you want to hear. In all our doctor appointments and test results, we have never had to leave Ava to go learn about the results! Dr. Acord pulled up the MRI and began showing us what she saw. It was obvious even to an untrained eye that things were not good. Then we heard the words, “Ava is losing brain mass. All those large white areas are where brain matter should be.” It’s like you hear people describe. You are trying desperately to stay engaged in the words coming out of the doctor’s mouth while your mind spins wildly around trying to process what you just heard. When giving news like this, doctors don’t skip right to outcomes or prognosis for obvious reasons. So I begged my mind to stay tuned in while Dr. Accord patiently and thoroughly explained all the possibilities of what we are seeing.

It became evident quickly that no matter what the next test results showed, our lives just changed forever! As you hear the word degenerative disease, you know what you thought had been your plateau of not seeing improvement is actually the top of the mountain, and you are about to roll down the other side hitting every tree and rock in your path. No one really knows what the decline will look like. Both options are extremely rare with one option having less than 100 cases diagnosed in the world! Again, we always knew Ava was special! We just keep finding out from science just how special she is!

The parts of her brain that are deteriorating affect speech, movement, motion, and intellectual ability. We don’t really know what the decline will look like, but most likely a wheelchair and possibly a feeding tube. But what we do know is the ultimate outcome without a miraculous healing from God – both diagnoses are terminal. Ava has a terminal illness.

The most aggressive of the possible illnesses has a life expectancy of 10-15 years. Her symptoms would indicate this is not the one she has – she has already almost surpassed that expectancy and is way too healthy for that to be the diagnosis and the disease to be progressing normally.

The second possibility will hold much fewer answers. It is the rarest possibility. Little is known. The oldest diagnosed patient is 29. Most do not make it past 20. There are less than 80 diagnosed cases worldwide.

I don’t think anything can ever prepare you to hear that your child has an incurable terminal illness. Even now as I have had time to process it, writing the words sends my emotions and thoughts swirling in a tornado of possibilities and feelings that have nowhere to land in the files of my mind. But even in the turmoil, there is peace – peace about the end. Letting Ava go does not scare me. It makes me sad. It brings tears to my eyes even as I write it. But there is no fear because I know the moment she takes her last breath in my arms, she will open her eyes to behold the Beauty of her Savior whom she adores! Ava has loved the Lord and expressed that love in the most childlike faith since she was old enough to raise her hands and sway to worship music with me while I put on my makeup in the mornings! I know there will be a party to match all parties when this saint comes home! I am simply jealous I will miss it! My spirit is truly at peace.

My soul however aches at every thought of the next few years. Not knowing what we were going to learn, I had planned to take Ava back to school shopping after the appointment. We made the decision to not tell Ava anything until we have a definite diagnosis and can answer questions she will have. Trying to help her process this will not be easy, and there is no need to start that until we know exactly what we are facing – at least the name of it! So I had to pull myself together very quickly in order to not appear upset – that stinker is VERY intuitive! After hearing your child has a terminal illness, the world looks different. I felt like my senses were on high alert. As we walked through the parking lot to go to Old Navy, Ava put her hand in mine as she so often does when walking in public. I immediately focused on what her hand felt like in mine. How her thin fingers wrapped tightly around my palm. How with every step of her awkward gait, she would put pressure on my hand to help keep her balance. I wanted to sear that feeling into my mind for eternity. I wanted to be able to remember that feeling so when it is only a memory, I can still “feel” it. But then quickly had to turn my mind to other things as the tears threatened to spill over.

Taking your child shopping after being told they have a terminal illness is probably not the best idea for the budget! Ava definitely got some things that day that normally would have been a no! Even as a I bought them I knew it couldn’t be a new way of life – there will have to be a balance between cherishing her like she is dying, but living as if she will live forever! I haven’t found that balance yet. I am not sure I will.

One thing I know, so many things in this world will never look the same again! I was putting away food and put the lid on the sour cream. I had to quickly find a room with no children because the flood gates opened – over sour cream! But Ava Claire LOVES sour cream! She eats it with a spoon when she can manage to do it without us knowing! Otherwise it is in a mound on her plate as she uses it as a dip – no dip mix, just sour cream! I will never be able to look at sour cream without thinking of my Ava – that will be both a blessing and a curse.

We do not have any idea what her decline will entail. Letting her go will be so much easier than watching her die. I have peace with letting her go, right now I only have fear about watching the decline. However, perfect love casts out all fear! I will be pressing into the One who provides perfect love to sustain me and provide what I need to love and care for Ava as well as all my other children as we walk out these next months and years together!

Today:

I know Ava has touched so many. We are committed to walking this journey well. We feel that is what God has asked of us. I will share more in the days and weeks ahead.

For now, only Ava through Paizley know of the issue. Our youngest do not. We will be telling them in the days ahead. Ava in Ava fashion has taken it all with a smile on her face! We assured her God would walk with her through this as well as family and friends. We read Psalm 23 in the Passion Translation with her as she raised her hand to receive what God had for her – if you haven’t read it in that translation, I would encourage you to! It is encouraging for any valley you might be walking through! Thank you for loving our Ava with us – we covet your prayers as we walk this road. It is one no parent ever imagines having to take!

I Didn't Choose It

I have had several people lately mention in conversation that John and I chose this life. I don't know if it's arrogance wanting credit for all that we do in our home that few people understand or know, or if it's my frustration that more people are not "choosing" it, but the comment always rubs me the wrong way. So much so that the last time someone mentioned it, I actually stopped them and corrected them.

If by "choose" you mean we said yes when God asked us to jump, then I can agree we chose this life! But as a Christ follower who believes we have a different reality and set of rules than those who are not Christ followers, I've never really considered obedience to God a choice! I mean I have had my struggles where I didn't follow Him - I am a sinner in need of his grace DAILY if not HOURLY! But I have always been extremely convicted even when I didn't understand at all kingdom living on earth that doing what God asked me to do was the best choice for me. Galatians 5:13 puts it like this, "You, my brothers and sisters, were called to be free. But do not use your freedom to indulge the flesh ; rather, serve one another humbly in love." (NIV)

However, the way our "choice" usually comes up in conversation is when someone is talking about the stress we endure or the chaos we manage. That is the definition of choice that makes me want to scream from a rooftop - I DID NOT CHOOSE THIS LIFE!

John most recently said it best. When we took on the responsibility of being parents to 9 individual children-10 now if you count the 17 year old living with us this year - we did choose to take on the spiritual responsibility, the financial responsibility, the demands of raising these humans to adulthood and supporting them until death. However, when we said yes to a number of our children, we had NO IDEA what the future looked like!

Let me stop here and be very clear, this is not a post of regret about saying yes to ANY of my children!  I love each and every one of them! I know God placed them in my home, and I am honored and blessed to be their mom! There are no regrets to saying yes! This is not a post to get sympathy or 'at-a-boys' from anyone.  It's simply a post of awareness for those of us raising kids who have struggles we didn't know they would have. It's a post of education to what NOT to say to families who are struggling with behaviors rooted in what happened to children BEFORE they came into the family. It's a post to ask if this is a choice, then why are more not choosing it who say Jesus is their Lord?

Back to saying yes - I have a biological daughter who many would say I "chose" to birth - because many would have ended her life in utero due to her genetic malformation. Did I choose to give her life? You bet I did! Would I choose to do it again? One THOUSAND times INFINITY I would! Would I choose for my daughter to have a special needs child? NO!

Many of my kids came to me as babies - newborns. Just like with Ava, there was no way to know the future. I held perfect little babies! They met all their milestones, they grew and loved and attached and were just my babies. Did I choose to adopt a healthy baby who might have some learning disabilities because of choices their birth mothers made during pregnancy? Yes! Did I choose to have mental hospital stays? Did I choose to have daily trips to the school to calm a child wrecked by anxiety and unable to manage it well? Did I choose to bare scars from meltdowns that resulted in scratches? Did I choose to hear "you're not my mom" multiple times as children process their own loss and grief? NO!

Raising children with trauma, saying yes when God asked us, does not mean we chose the life you see us live today! It does mean that we are committed to parenting our children for a lifetime! It does mean that we trust God knew our today when we said yes yesterday - and we trust Him to hold our tomorrow! It does mean that we have to daily rely on Him to fill us up in order to just pour into our family - with the hope of one day being able to minister outside our family more.

So please, before you look at a family like ours - or anyone in a situation that may be more than they said "yes" to - and think we chose this, please reconsider! And while you are at it, would you consider a yes to a life that may be more than you bargained for? There are nearly 7,000 children in Texas who need someone to say yes to them for forever - and many more who need a temporary yes while their parents get their feet back on the ground! I can promise you it will be more than you thought you said yes to - but not all that "more" is a bad thing! We have more love, more grace, more laughing, and more compassion than I ever could have imagined raising in the family we would have had if we had not said yes!

Confessions of a Weary Mom

So my original title to this blog was "Confessions of a Bad Mom", but a wise friend recently reminded me of the power of words! So I changed it to confessions of a weary mom. While "bad mom" is not who I am, weariness has caused me to act as a bad mom! 

I ran away this week. I mean, I went to help my parents pack and kick off a new program in San Angelo, but really, I ran away. I needed a break. I never understood women who left their husband and children - until the last few years.  

This is a very raw and transparent post. I share because I believe there are SO MANY of us bad  weary moms out there! Especially the tribe of moms with children from hard places or children with special needs - and especially those of us with all the above! I share because I want you to know you are not alone! I share because I think we need to talk more about what happens behind our closed doors. I desperately want to protect my children's stories - but the fact is, their stories intersect mine! I will attempt to walk that thin line here, please give me some grace if I overstep. I also want you to know this is NOT a post written after I have it all together and am sharing from a new perspective. I am sharing from the pit - but I am clawing at the sides determined to get out - and I want to take any other moms in the pit with me! 

In the last three months, I have had a child pack their bags to move out because being respectful was too much to ask, I have had a child tell me our family "sucks" and they want a new one, I have scars on my arm from a child's meltdown that left me bleeding (other family members and a few educators wear similar marks from the same types of meltdowns), I have been told I put other orphans before my own children, I have listened as a new diagnosis is explored for one child – a diagnosis that could possibly have occurred because of medicine I was prescribed during pregnancy, I have been told my sacrifice to be a stay home mom in early years as well as pouring my life into another human means nothing, I have heard words in my home that I never dreamed would be said. I have cried, I have screamed, I have walked away, I have planned my own death, I have run away. I don't share this for pitty or to get a "you're not a bad mom" response. I share because too often we put on a smile and walk around like all is well - while the mom we meet in the grocery store does the same thing. But actually we are both weary and dying in side. I share because I want that mom to know she is not alone - and if you are ready to do the work to climb out of the pit, I want to help you while you help me! I am not interested in sitting in the pit and complaining about it, or sitting in the pit and feeling sorry for myself. I have tried both - and they don't work! 

So let's start climbing!

I ran away this week because I needed a break! I didn't "want" a break, I "needed" a break! My physical body and frayed emotions could no longer respond in a loving and nurturing way to my family. There are many dynamics happening in our family. Many that I will never share in a forum such as this. Any one of the dynamics would probably have been manageable, but when you add all that is happening together, it became my perfect storm. 

Let me pause here to say, if you are meeting me for the first time through this post, I LOVE my children!! I have 9 beautiful creations of God that He has entrusted to me to nurture, disciple, and raise into warriors for Him! While some of their choices of actions and words did give me small pushes into the pit, the real issue here is me. I am the adult. So if my home is not running in a way that I can live there in a healthy manner, I have to look at myself first. And the Truth is that God would not give me these children if He was not equipping me to parent them and give them all they need! None are here by mistake or accident. They are all mine by His design!

Therefore, this week has been lots of pressing into God, stilling myself to listen, lots of self-reflecting. I know that I do not like the mom I was when I left last week. It is not the mom that I want to be! That left me wondering – how did I get here? It didn’t happen overnight. It was a slow process of demands and stress that slowly but surely swallowed the moments of joy being a mom has always brought me. The needs of my children, the struggles they have because of no fault of their own, the pull of walking other families through the same struggles – all of it had left me anxious, irritable, depressed, on edge….and empty. Oh so empty.

About 4 years ago I realized I was headed down this path. I had always heard “self-care” and thought “selfish”.  But after being stuck in the house with 8 children, 4 of whom were 3 and under, I realized “self-care” is actually read “survival”! I had to find ways to rejuvenate myself. I had to find ways to pour back into myself. My husband was running on empty too! He couldn’t be my pourer – and no one can pour out of an empty cup! I had to find a way to fill mine!

I began allowing myself to take 15 minutes to take a bubble bath, or an hour to get a pedicure, or even just allowing myself to go to the grocery store without any kids to have a mental break from the “MOM!!!!!” that I heard multiple times every 60 seconds. But it just was not enough. The output was still more than the input. I was maxed out, and my emotional and physical bank accounts were becoming more and more overdrawn – taking more and more to even bring them up to zero.

Being an introvert (one who refuels by being alone) in a house of 10 people with 8 of them being children (well 7 – my 18 year old adult child would be very miffed I did not note her adult status!) means there is very little opportunity to refuel. That has to change. That means getting up early enough to have a quiet house to start my day. It also means more structure – a scheduled day for the summer; and with more structure has to come more nurture because the balance must stay the same. For a mom who does not do structure well naturally, that at first sounds like more demands – but I have watched enough moms that I admire to know that structure is a good – no GREAT thing for larger families!

So that’s my one thing I am implanting as I return to my home! I will make myself rise before the sun to insure I have quiet time to refuel and be ready to love my children – and my husband! ;) I will find a schedule that works for us – all of us!

If you could hear yourself in this post – the weariness, the despair of what is happening in your home, can I ask you to think of just ONE thing you can do this week? What one thing could you implement to give you some rest, to pour into your tank?

·       Hire a housekeeper

·       Implement an hour of rest time each day – include yourself in that time!

·       Go for a walk while your husband and kids clean up dinner dishes

·       Set aside 30 minutes a day to read that book that’s been sitting on your nightstand

·       Find some fun stickers to use when scheduling your week! (another confession – I have a horrible addiction to office supplies, and the calendar stickers make me very happy!)

·       meal plan and try out the online grocery shopping if you have not already

Find one thing to help YOU this week! Remember self-care is not selfish, it is survival! And Mommas, we are not just going to survive, we are going to LIVE! Who is with me?! Let’s get out of this pit!

I would love to hear from you and how are climbing out of the pit! You can get in touch with me on Twitter @HPetree or Instagram blessedtimes9.

God Sacrificed His Son, Why Shouldn't I?

I am often asked when talking about older child adoption, "How will adoptiong affect my kids?" or "I don't know if we are ready to do this because it may be too difficult for my children."

I get it! Really, I do! I can promise you, adopting WILL affect your kids! It will expose them to things they probably were never exposed to before - and probably won't be for a long time if you don't adopt.

As a parent of 9 children, I often remind myself that the challenges of raising a large family with children who have special needs pale in comparison to dying on the cross. I know. That sounds dramatic! But really, John and I have for years reminded each other that we have not yet anguished to the point of sweating blood (Luke 22:44). Since Jesus did that for us, we really can't complain about the path He has asked us to take. I mean really, can raising my adorable children really be compared to that...

But a perspective I had not really considered about the cross vs adopting is the fact that Jesus is God's Son. Hang with me a minute...I KNOW Jesus is God's son! But when I think about how adoption (or really any act of obedience that has cost your children something - going into the mission field, making a move in order to follow a call, etc) has affected the children already in my home, I have to ask myself, "If God was willing to sacrifice His Son on the cross for me, why should I not be willing to sacrifice my child for Him?" Now before you completely write me off - I am not suggesting that you put your child on an alter or hang them on a cross! But I am asking where we got the theology that God would never ask us to do something that would make our children uncomfortable! Where in scripture does it say that we should wait until our children are out of the house to follow God's commands because they just might not be able to handle it? Who made your children? Do you not think when God knit them together, He had this in mind for them?

I am not suggesting that we don't take seriously our job as parents to protect the ones God has already entrusted to us! But I am challenging the Americanized religious answer to hard things that would require our children to be uncomfortable - even in their own home - in order to be obedient to God's calling and to serve another human who doesn't have what your child does - a family! I am asking you if you are hiding from obedience behind your child?

I recently had a conversation with one of my children about another child. Child A was complaining about how inconvenient Child B is to have in the family. I quickly reminded Child A that Child B struggles with some things due to Child B's beginning before Child B came to live with us! I reminded Child A that Child A did NOTHING to deserve being born into a family with a loving mother and father, a healthy home with everything needed to provide safety, love, and connection. And Child B did nothing to deserve being born into a family who was unable to provide the necessary ingredients for a healthy start! It is only by God's grace those of us with a happy beginning have a happy beginning! We didn't earn it any more than those with a rough start deserve theirs!

If you have felt God tugging at you to adopt, go into missions, move across the country, or anything else that you think would "damage" your children, can I encourage you to revisit it? Ask God again what He desires for you to do - even if it looks like something that will require you to "sacrifice" your children. Can I ask you to trust God with your children and say YES to what He is calling you to?! After all, He said YES to you when He sacrificed His Son for you! If God asked that of His own son - don't you think He might just be asking that of yours too? Just some food for thought....

An Open Letter to the Parents of My Child's Classmates

This is a message sent out after school today in one of my children's classes. Before you read any further in this post, stop and think, "What would I think if this note came home from my child's class?" I know the me of five years ago probably would have wanted to know what in the world was happening in that class. How did a teacher get scratched? Why do you feel the need to assure me my child was safe? Are they really safe?

But today when I read it, I just cried....it was my child. My child put the scratch on the teacher. As I read what the school sent out, my heart broke. Let me stop here and say that we have worked hard to get where we are - but we now have an amazing team of educators working with us for our child. I understand why they had to send a message - well, my head understands it, but my heart really just wants to yell at somebody! If I could have followed that message sent out to the parents by the school with my own message, it would go something like this:

Dear Parents,

It was my child. My child put the scratch on our teacher's face. She is just as horrified as you are! I wish you could have seen how she cried when she realized she had hurt the teacher she dearly loves. I wish you could have seen how brave she was as she sat in a room with a mental health crisis worker, a behavioral specialist, her principal, her teacher, her teacher's aid, and the special programs director as she told her side of the story. I wish you could have felt her heart racing, seen the look in her eyes as she apologized to all she hurt in her meltdown. I wish you could have heard how detailed she spoke about what is happening in her mind and body when her body takes over and her mind shuts down because of fear, sadness, and anxiety! I wish you could hear her tell the mental health crisis worker how she wants to sing "What  Beautiful Name" when she starts getting anxious to calm herself down, but sometimes she doesn't remember to. She shared that she wants to sing on stage some day - I wish you could hear her BIG, BEAUTIFUL voice! Did any of you notice last week that she stood on the top row, the ENTIRE music program and sang, and did motions?! Did you know how hard she worked in the days leading up to that moment to convince herself she could in fact do that?! While you were snapping pictures with your child's friends to document all their cute Seuss hair, we were congratulating our daughter on staying on the stage! Celebrating big just how brave she is! Alone, no friends coming to take pictures with her, but BRAVE! Thank you to the mom who did ask at the end if she wanted to take a picture with her daughter. I don't know who you are, but you made this momma's night!

I wish you could get to know my child! I wish you could see the light that shines in her eyes when she feels safe! I wish you could see how she loves to give big hugs when she feels safe - even though your child has probably told you she hits, and screams, and bites when someone touches her. I wish you knew that only happens when her trauma kicks in and she has little to no control over her actions because her natural instinct to protect herself takes over. I wish you knew just how much she loves Jesus and wants to be like Him!

I have heard the whispers. I see the stares as we walk down the hall after an incident. I have had my friends tell me over coffee or lunch that their friend talked about the girl in their child's class who acts so badly - not knowing that their friend is my friend - the mom of that terrible child. I have heard my friends tell me how they have defended us as a family and assured their other friends that we are loving parents despite what so many assume about us based on our daughter's behaviors. I have even sat across tables from some of you as you made comments about my daughter  while looking me in the eye.

I wish you could walk in my shoes for just one day. I wish you could love a child with all your heart who struggles just to make it through daily life because of no fault of her own - or of yours! I wish you could sit as a mom beside your child as they realize the horrors they have caused and are heart broken because of it. I wish you could hold my child while she cries because she knows no one wants to come to her house for a sleep over because she scratched her teacher in a bodily response she couldn't control. I wish you understood.

My daughter is kind, brave, beautiful, compassionate, brilliant, artistic, musical, strong, loving - and a victim of early childhood trauma. Please look beyond the latter to see the real her. And please encourage your children to do the same.

Sincerely,
One Proud & Heart Broken Momma

It Comes in Floods - Grief of a Special Needs Parent

I have talked before about how the being a special needs parent has left me in a puddle of grief at unexpected times. This morning is no different. I am sitting here at my office covered in reports needing to be completed, but now unable to do them due to the tears continually flowing - blurring the screen and watering the documentation needed for the reports!

It was a simple phone call from one of my favorite school employees. She loves our kids, she is a cheerleader for us and a champion of all! But this morning, her words hit me like a sucker punch to the gut - "when we meet about Ava's schedule for next year, do you and John want to talk about putting her in some life skills classes?" It's a simple question, right? And we have talked about it many times - I know the answer. Yet saying it out loud feels like a betrayal, or maybe just another bubble of denial busted right open! I don't think I live in denial - but moments like this teach me that I still hold onto hope against hope that in the end, it will all be ok. And it will - just not the "ok" you dream of when you hold your perfectly healthy baby girl.

 I was talking to a friend just this week about how blessed we are by Ava. How thankful we are for her sweet spirit, contagious laughter, and determination! It makes me feel guilty about feeling guilty - she will love life no matter what it brings!

We want her to be the best Ava she can be, and fulfill all God's purposes for her in this life! So that answer is "yes"! We will put her in life skills classes for some of the day in order to begin the preparation for adult living - something that for her, we truthfully have no idea what will look like!

The grief this morning brought will pass - I will reconcile again that despite what our expectation of "normal" is, Ava Claire is fearfully and wonderfully made, and we know this full well!