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.

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!

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!

Our Ava...we have another diagnosis

It’s been over a month now, but still, it seems surreal. It still has not quite sunk in.

We completed a neuropsychological evaluation with Ava. We were hoping to gain more information on how to best help her be the best she can be. Much of what we learned we already knew. Some of what we learned was new information. And some of what we learned we knew, but we had been trying not to know.

The official diagnosis we have currently is Borderline Intellectual Functioning, but only because our Neuropsychologist is a “purist” – her words, not mine – and felt there were some scores in the functioning range that kept her form giving the Intellectually Disabled Diagnosis. She did note in her report as well as in our consult that she expects Ava’s scores to dip in the next few years as she gets older which means the ultimate diagnosis it Intellectually Disabled.

Borderline Intellectual Functioning

Intellectually Disabled

It really didn’t matter; the news was the same. We heard from someone’s mouth for the first time that they did not expect that Ava will ever be able to live on her own without support. And we were warned with what we have already known – we will have to protect Ava fiercely from those who might want to take advantage of her. We sat and talked about things that no mother of a 10 year old should ever have to think much less devise a plan.

I can’t say that we were totally blind sided. We knew it was a possibility. But hearing it. Seeing it in black and white. It took away our last bit of hope. Don’t get me wrong, with Jesus we always have Hope! It wasn’t that Hope that we lost. It was the hope that the things we saw were just delays. It was the hope that we would go in and they would tell us “It’s all going to be ok.” It was the hope that they would say, “She may have some delays, but she will function on an independent level at some point.” Those were the hopes that were gone.

I wanted to write about it then…when it happened. But I knew I would short circuit my computer with the tears that refused to be contained. I would hold it together until the last child was dropped off for school. Then the damn would break and the tears would flow. I would cry until I didn’t think I could cry anymore….then it would start again. I would text John because I couldn’t call. He would never have been able to understand what I was trying to blubber. I would pull myself together before everyone came home…then start it all over the next day. That went on for about a week.

I struggled with struggling. I mean, anyone who knows Ava loves her! We couldn’t ask for a more wonderful daughter…how could I be so sad? There were some days that it was just a totally selfish grief that overwhelmed me. The thought that I will never be an empty nester. I mean we already knew we would be ancient by the time we got the kids raised, but there was that hope of 10 good years after that to travel, do missions, REST! But the new news meant I will never be able to go on a vacation without making sure someone is watching our Ava. I told you it was selfish….but it’s real.

I have settled in my innermost being that God is good. We have been through enough in our family that battle is won and settled. So I didn’t get angry at God. But I did wrestle some more with the fact that her disorder is in her DNA! It IS how she was knit together in my womb by God almighty! It means that how she is now is her fearfully and wonderfully made. It means that how she is now includes ALL she needs for the plans and purposes God has for her. So can I even pray for healing? Should I pray for healing? Does she need healing? I haven’t settled those yet.

I have two friends who have always inspired me on their special needs parenting journeys. I had no idea God had been preparing me for the journey myself…still sounds weird…special needs parent. One of these friends shared a post a couple weeks ago that summed up all I had been feeling perfectly! She called it “special needs parent grief”. She is WAY further down this path than me, and her daughter has challenges that require much more of her as a mom than my daughter ever will me – so to compare would be insane. But she spoke of how it hits you when you least expect it. We were in the van and everyone was talking about what they wanted to be. I hear Ava’s sweet voice blurt out, “I am going to be a doctor!” Before I even know it the tears are spilling over onto my cheeks, and I have to feign something in my eye to not upset the kids who notice the water works.

Then the Sunday after we got the news, I was bawling my way through worship. I look over where the kids stand, and I see this…

Ava fully engaged in worship! Eyes closed, hands open ready to receive, fully basking in the Glory of her Heavenly Father. And in that moment the first sense of peace I had since the news. I have no idea what Ava’s future holds, but as we have always said, I know Who holds her future! I have no idea what it means for me as a mother, but I know the One who promises to provide me with ALL I need to do ALL He has given me…and He gave me Ava!

Then at a night of worship we had, our youth pastor gave an amazing Word that he received for Ava. He shared how he saw her dancing in a field of flowers GRACEFULLY! That means the jerky motions are gone. The instability is gone. The dystonia is gone! Pastor Ben said he believes we will see her dance that way in the physical, that it was not just a spiritual grace!

So God continues to be faithful. He continues to provide encouragement and give us His Hope for our Ava….His Ava!

Now I have to have that conversation with myself several times a day some days….and some days I just get stuck in the sadness of it all. We are still working through it all. But one thing that has never changed….I am blessed to be that little girls mom! I am ready for many more adventures with Ava!

Our Ava, We have a diagnosis....

You are going about your day as normal. Then the phone rings. You have no idea that your world is about to change forever with what the person on the other side of the call is going to share...

That could be the scenario for many things in life. For me this week, it was the call that said, "We have the results back from Ava's testing." Next she said, "Do you have a few minutes that we could talk?" There was part of me in that moment that wanted to scream, "NO! I don't have a few minutes for you to tell me what is wrong! I don't know if I will ever have a few minutes for this conversation!" But I knew delaying the inevitable was not going to help my daughter no matter what the news was.

Bottom line, we now have an official diagnosis. Ava has Duplication 16P13.3 Syndrome. Fancy name, huh?!  Simply, it means that she has duplication on her 16th chromosome. That duplication can cause many symptoms, and it is what causes the delays and difficulties we see in Ava. It is a life long condition.

So now what? I mean, what do you do with that? I went from relief at having an answer we have searched for the last 6 years to sadness that I really had an answer. It kind of takes all denial away that you might have been hanging onto that all is well....just a minor delay here and there. But it did not take much research before I was overcome with thankfulness! As I read all that can be caused by this particular syndrome,  I thanked God that Ava has very mild symptoms! There are kidney and heart issues associated with it that we have not had to deal with. And ultimately, I just had to thank God that He knit my precious baby girl in my womb! I can honestly say the one emotion I have not had since learning about the diagnosis is fear. My God is a great big God! He knows every hair on my sweet girl's head. He made her, fearfully and wonderfully made her! As I said that scripture over and over in my head this week, I have to admit there was some confusion in my soul. Chromosomes are the knitting! They are what gives the instructions for the creating....so if the chromosome is not "normal" then did God cause that? I don't believe He causes illness. And I am not going to pretend I have the theological understanding to really even think about questions like that! But what quickly settled into my spirit was "Does it matter?" Regardless of what the answer is, does it change that God is a good God? Nope! Not one bit! So there will be no why questions from me to God. He is good all the time....even when I hear that my daughter has an abnormality in how she is knit together! It's funny. I remember when a friend found out her unborn baby had Spina Bifida. I remember asking God how to reconcile Psalm 139 with babies who are knit together in a way that we don't think of as "wonderful". I had to chuckle as I thought back on how I wrestled with that for my friend knowing now that God had me wrestling with that then because He knew what I would face now. Oh how I love Him! The conclusion that I came to and feel God inspired in me for my friend's baby is that we hear fearfully and wonderfully made as perfectly and according to the world's standard of abilities. But what He knits together is what is fearfully and wonderfully made for His kingdom! I don't believe God causes illness, and I will believe and ask God to heal Ava so that she functions on a level that the world sees as "normal", but I rest in the fact that God loves her more than I do, and He knit her together with a purpose for His Kingdom, and she has all she needs to fulfill that purpose!

As I look at Ava, I can't help but see that God did in fact knit her together amazingly! She has a joy that I don't even begin to grasp. She has a faith and a connection to the Holy Spirit that I am envious of at times. Her childlike innocence and belief in the things of God's Word makes her an amazing warrior for the kingdom! And she does not meet a stranger! She is loved everywhere she goes. This syndrome was not even discovered until 2010 (ironically, that's when we started doing our tests to see what was happening with our sweet girl!), and in 2013 only 26 cases had been documented. They now think that 1 in 150,000 births have this duplication. So what that tells me is that we now have proof that she is the rare treasure we always knew she was!

So what now? Well, Cook Children's Hospital got a few mad momma calls that day because for 2 years we have been trying to get her into a neurologist that will listen to us. But their policy says we cannot switch doctors. We have an appointment with a new neurologist in September. ;) We have to have some hard conversations about educational goals and long term goals in order to make sure financially and legally she will be provided for and cared for. Now that we have a "life long" condition diagnosis, we can go more boldly into realms that we really couldn't before to try to get her all she needs to be successful and live the best life possible. All this is a new arena for us, so we are definitely on a learning curve! But again, we trust God to bring wisdom and provide fully!

Over the last few days as I have processed all the new information, I have just stood in awe at my sweet girl! I have learned to appreciate her laugh more. I have learned to soak in her smile and the sparkle in her eyes. Its as if the diagnosis has given me permission to let her be her. I don't have to "push"  her to be what every other 10 year old girl is. I have permission to just enjoy who she is and where she is and love her for right now! And that is the best gift I could have been given!

For all who have walked this path with us, loved our sweet girl, worked with her at school and at church, prayed with us for answers, we thank you! And we appreciate you! Please don't stop praying! Now that we have a diagnosis we will be searching for ways to make sure we are doing all we can to help Ava become all she can be! We are excited about her future that we know is full of hope because of our amazing and good God! Thanks for walking with us!

Alive and Active

I had to smile as I pulled up my blog to write this post! The title of the last post was "still waiting".  You will see the irony in that in just a minute!

One of Ava's biggest struggles is memory.  Learning math facts, memorizing spelling words, things like that are a real struggle.  And she may have it down today, but then tomorrow it may be as if we never even talked about it.

So yesterday when I picked her up from her church service and she told me she got an extra treat because she already said her memory verse, I am sure I had a puzzled look on my face.  She danced around with that light that shines so brightly in her saying, "I already memorized it!  I did it during the service!  I know it already!"  Then she proceeds to say it....."Wait on the Lord, be strong and courageous. Wait on the Lord Psalm 27 dot, dot 14" (she really says "dot, dot"!!)  I was impressed.  But can I confess there was a thought that passed through my mind that went something like, "we'll see if she can still say it in the morning."

She proceeded to repeat it all throughout the evening last night.  Enough, that I now have it memorized! And my memory is mediocre at best! God in His ever humbling ways brought this exact verse to mind just this morning as I was becoming impatient with some circumstances in my life and wanted to just run away from them!  "Wait on the Lord! be strong (some translations then say) and don't lose hope. Wait on the Lord."  One of the things that Ava said when she told us she memorized it was that God said "Wait on the Lord" twice! John reminded her that when God repeats himself, He really wants us to listen!

Again, God has used my children to teach me a couple of valuable lessons!  First, the Word of God is alive and active!  It is sharper than a double edged sword and will divide bone and marrow.  No, Ava may not be able to remember that 4+6=10, but the Word of God being alive and active planted itself in the deepest recess of who she is and easily comes to her mind...even this morning after sleeping on it! And second, Miss Ava reminded me that waiting on God is important....after all, He said it twice!

Still waiting...

A friend text me and said she had been watching my blog for an update on Ava (thanks, Tracey! :) ).  I sometimes forget that my blog readers are not all on Facebook where I update with small things here and there.  So let me update on Ava's appointment that I talked about in the last post.

The appointment went well.  We really liked the doctor.  She listened to what we had to say and worked with us to talk through possible scenarios.  Overall, the appointment was good...except that the reality that we may never "know" what is happening with our sweet girl.  The doctor didn't really think that she has Fragile X, but there are enough symptoms that warrant testing for it.  There are a couple of other genetic disorders that she has symptoms of, so we are starting with testing for those things.  If they all come back negative, then we will move to whole exome testing.  And we can't start any testing until we get insurance approval, which is where we are right now....waiting on insurance!
One really great blessing is that we found out that the testing that runs $10K-$15K can be done for about $300 out of pocket with some funding that is available since this is all fairly new research and testing as things go in the medical world.

We appreciate all of the prayers and those following her story!  I have to say the whole experience has made me press in closer to our Maker and listen for what Ava is created for in order to equip her in the absolute best way possible for what God has for her!  Because no test results will change one thing that we already know, she is made exactly how she needs to be made in order to do what God has for her to do for His Kingdom and to bring Him the most possible glory!

Our Ava

Tomorrow is the day! We have waited two months for the appointment and Ava's lifetime for the answers. We haven't shared a ton about our miss Ava.  Mostly because we have never really known what there was to share.

At the park!

She was born at 37 weeks due to me having a potential for blood clots.  For those who don't know our family well, she is one of our biological children.  So her pregnancy had no drugs, no alcohol and no trauma.  Of our nine children, she is one of the least likely to have any "issues" based solely on her start in life.  Yet, from the beginning she has had a bit of a struggle.  She wasn't too interested in breathing those first few hours and was under an oxygen bubble for the first 36 hours of life.  Then a newborn screening came back abnormal. But the second one was normal.  There were no symptoms or signs of anything happening, so we continued on with our healthy baby girl.  Our pediatrician was always a bit concerned.  However, he was the glass half empty guy, and I was the one pointing out it was half full.  While I always appreciated his aggressive desire to ensure all was well, I also was quite certain from how my baby girl was doing that he was concerned for no reason.  It wasn't until the delay in her walking that I wondered if his concerns were valid.  Then there were the times that she played alone...too long.  I would talk to family about my concerns, but everyone dismissed them with simple explanations.  I would tuck them away and tell myself I was being paranoid.  Those who know me well know that I have zero memory!  It's why I really NEED to scrapbook!  But when I do have a memory, it is very vivid and usually significant.  It's like a snapshot that needed to be recorded for future reference.  I have one of those memories about my Ava.  When she was about 18 months old, I took all three kids to the park.  We were there about 30 minutes.  The entire time we were there, Ava would walk up the three steps on the jungle gym, walk halfway down the walk way, turn around, come back the way she came, down the stairs, then turn around and do it all again....for 30 minutes!  She never left to go swing, she never left to go to the slide, she never left to dig in the sand.  Just the same motion over and over.  Again, I expressed my concern to John and my parents.  I was most certain there were some signs of her possibly being on the Autism spectrum.  Although at that time is when Autism was just beginning to be a household name.  No one really felt my concerns were valid, so again, I tucked them away.  Then there was the way she rarely looked at a camera when we would take her picture.  She will make eye contact with you to talk to you, but as soon as you put up a camera, she will divert her eyes many times.  Maybe just a quirky thing she does? Maybe a sign of something more?  

Ava at about three years old

 Her language didn't seem to develop quite as quickly as it should have.  Then there was the broken arm just before she turned two that happened from a simple fall from the couch.  All of it along with a larger head circumference and extremely long fingers and toes always made our pediatrician a bit concerned.  Around age 4, it became more evident that there were some physical limitations.  I found myself constantly reaching out for her as she often lost her balance resulting in a fall.  She was unable to stand on one foot and balance.  Yet therapy was not making much progress. We had an MRI that came back normal.  Dr. Nabulsi said he wanted us to go see a neurologist.  So off to Fort Worth we go.  We would learn of a disorder that seemed to fit her symptoms.  We scheduled a spinal tap and returned for the procedure a few weeks later.  The results came in as inconclusive.  However that did not rule out the diagnosis, and the doctor along with John and I felt it was more likely than not that she had Depo Responsive Dystonia.  She began taking medicine that is given to Parkinson's disease patience.  We saw a decrease in her stumbling and falling.  It appeared that she her speech was a bit easier to understand and came more readily for her.  And that was the "real test" we were told of whether or not she had the dystonia.  If the medicine worked, then it was for sure the case.  We were so thankful we had found it.  Many children are misdiagnosed with cerebral palsy and ended up in wheelchairs until the correct diagnosis was found.  Then with the medicine, they were back to normal function.  We thought we had our answer and proceeded with life normally.

 It was evident from the beginning that Ava marched to her own drum! She was an extremely happy and compliant child!  She rarely ever, and still to this day, rarely does get in trouble.  She has an incredible connection with God!  I am jealous at times at the way she believes and the faith that she talks about.  She accepted Jesus as her savior on her own...I asked her if she had thought about it one day, and she laughed and told me she had done that weeks ago at church during worship when God had spoken to her! Got to love a testimony like that!  Just a few months ago, she was walking down the stairs and got about  halfway down before turning around and running back up to me in the playroom with an excitement that was exuding from every part of her being yelling, "He touched me!  I was walking down the stairs and God touched me on the shoulder!" While reading that, you might doubt the validity, seeing the glow in her eyes when she said it left no room for doubt that in fact, she had been in the presence of God!

After moving to Fort Worth, her second grade teachers revealed that she had absolutely zero ability to comprehend math.  Its a long story that I really should share some time, but I am so thankful for these teachers!  It was with this information that we began again searching.  I always felt in the back of my mind that there was something else! There was something we were missing...call is mother's intuition or  God's prompting, but I knew we needed to keep digging.  But our neurologist was a bit dismissive.  Diagnosis were thrown around here and there, but nothing that we could nail down.

Then one day one of my perspective adoptive moms called me to talk about a file she was reading for a potential placement.  In the file was a genetic disorder that I had never heard of.  Normally, I do not stop to look up those types of things on the cases unless I am pretty certain that placement will happen. That did not seem to be the case this time but for some reason that can only be explained as the hand of God, I stopped and googled "Fragile X Syndrome".  As I read through the symptoms, it was as if someone had been in our home for the past few years keeping a journal on Ava.  Tears began to fall uncontrollably.  The first emotion was joy and satisfaction!  We might FINALLY have a definite answer to what is going on with our daughter.  But those emotions quickly turned to dread and fear as the reality of what that diagnosis means.  I guess as long as you don't know, there is hope that it's just late development.  There is hope that it's all just coincidental and in the end, it's all going to go away and she will be "normal".  But with a diagnosis, those hopes fade quickly.

Tomorrow is the day that we go to talk to the geneticist about Fragile X.  We will have the testing done and wait for the results.  Can I be honest? I don't even know how to pray! Of course, I want the results to be negative because NO ONE wants their child to have an illness...most definitely not a genetic disorder that could mean a much different future than you had dreamed for your child before you knew of the words that now hold so much weight: Fragile X Syndrome.  But a negative test result will not automatically erase all of the symptoms that have us searching for answers! And we need answers! Ava is an amazing little girl who brings joy to anyone who knows her!  She says good morning by name to everyone she passes in the school, and they smile back with a "Good morning, Ava!" But she is starting to notice that she doesn't exactly work like the other kids.  She is beginning to notice that she is a little different.  We champion different in our house! But my words of encouragement as a mom, I know all too well, will only carry so much weight the older she gets and the more defined the differences may become. We need an answer to give her! We need to be able to tell her "this is why" you work this way!

So if we come to mind, pray for us! Most days, it doesn't even cross my mind.  But then there are moments like the other day when I came across this picture.

And looking into that sweet face sitting in front of me, I was overcome with emotions and a desire to go back to this day!  We didn't know anything was wrong here! We had no idea that we would one day be wondering what the future held for our baby girl.  We had no idea of the struggles she would be facing even as an 8 year old.  I just wanted to go back to the innocence and to some extent ignorance.  

But despite what the test results say, this I know. Ava Claire is fearfully and wonderfully made by God Almighty!  He knit her together in my womb for His purposes! He has a plan and a future for her that is good and prosperous! It may not look like how we thought it would look, but it is full of His purpose and potential for His glory all the same!  And when He knit her together, He put a determination in her like none that I have ever known and certainly never seen in a child of her age! It has served her well....and makes her an inspiration to just about anyone who knows her! And He had held her closely, for what I have no doubt will be a lifetime of her using whatever challenges she has to bring her Creator even more glory! 

No Greater Joy as Mom

We have a very exciting day today!  I woke up with great anticipation.  As a mother, I know that today is the most important day in the life of one of my children, and pretty significant in the lives of two others - as what we do today in those two will lead to what is happening in the other!

Today, my sweet Ava Claire will be baptized as a symbol that she has given her life to God!  Her story is not like the other children, where we have a specific date she gave her life to the Lord.  And once again, God reminds me it's not about me and my neat little story for the scrapbook, but He is writing my children's future.  Which is such a great thing for many reasons, one of which, who knows when that scrapbook page will ever be made anyway!

I had started praying for Toben and Ava both to recognize their need for a savior.  We have had very direct conversations and Bible study times to introduce Jesus as their savior, but neither one of them really grasped and could articulate the need or desire for Jesus to take their sins and rule their lives.  Their salvation is one of the things I am believing God for in 2013.

About five or six weeks ago, I sat down with Ava to do her Bible study.  We still struggle with finding a time to do Bible study with all the kids.  It is very sporadic and inconsistent, but we are still working toward that goal!  Maybe by the time Journey leaves home, we will have figured out a system.  Just another part of the story that reminds me God is pursuing our children even when we aren't perfect parents! Praise God!  Ava and I read Romans together where the scriptures point to a need for a savior to save us from our sins.  I start to ask some questions to see if Ava has any clearer understanding, and she says, "Mom, don't worry!  I already asked God to come into my heart."  "When?!" I ask.  "In Sunday school, we were singing songs, and I just felt close to God and asked Him if He would come into my heart and He did!"  So I ask, "Did you tell anyone?  When did this happen?" To which she very nonchalantly replies, "I don't know, a couple of weeks ago.  And no, I didn't tell anyone, just talked to God about it!"  So I do what any normal mother does, I grabbed her up and cried and told her how proud and excited I was for her!  I asked her if she knew what the next step was, and she said, "Sure, I need to be baptized!"

Seriously, this girl has a crazy exciting desire for God's word!  I know that over the past few months, God has been wooing her to Himself as I often find her in her room or in a quite spot in the house reading her Bible.  She may not understand every Word, but the enemy does, and he flees when God's Word is read.  And her spirit understands, and most importantly, the angels of heaven understand and are immediately sent to fulfill God's Word for Ava as she reads it out loud believing God means what He says and says what He means....truly a childlike faith!

"I have no greater joy than to hear my children walk in the truth." 3 John 1:4  Truly walking that scripture out this morning as I am full of joy unspeakable as I prepare for church this morning knowing that one of these precious lives entrusted to me will demonstrate her desire to serve God all of her life.  I used to think, that meant I had pretty well completed my spiritual job as a parent!  However, now I know the truth is that, now I have the fertile soil to begin planting the seeds that will take root and grow into the foundation and beyond that she will need to live the life God has called her to live!  Now we begin pouring into her to make sure she is equipped!

But I love her story because it is such a great reminder that we don't have to be perfect parents!  I am not discounting the need for direct Bible study with our children, but it is reassuring to know that God pursues our children even when we are not perfect parents.  He led Ava to Himself which is what the Bible says He does.  We introduced her to Him through Bible studies, taking her to church and living a life that follows Christ ourselves - talking out some of the decisions we make with our kids pointing to God's direction as the reason.  But ultimately, there were no fancy words or amazing prayer on my part...just a simple time with God in worship that brought Ava to the reality of her sin and the amazing answer in Jesus!  I also love her story because it should encourage each of you who serve thankless hours in children's ministry!  You never know what Sunday "Ava" will accept Jesus as their savior and not even tell anyone....you will know when you receive your reward in heaven!  So THANK YOU, Ms. Lyndsey, Mr. Logan, Ms. Tonya, Ms. Jessica, Ms. Gigi, Ms. Linda, Ms. Megan and the others who serve in our children's ministry! Thank you for providing an environment that ushers in the Holy Spirit and allows Him to convict, speak to, and redeem children!

Along with that celebration today, we also are honored to stand before our church family and commit to raise Madison and Journey in a Godly home, pointing them continually to Him and equipping them for the life God has for them.  We have taken so long because we dedicated Paizley the baby dedication right after Journey was born, and she didn't want to share it with Journey.  The next baby dedication they had at our church at that time was the weekend Peighton was born.  So we could not attend church that Sunday.  So this is the first time since Journey was born and Madison was adopted that we could have the honor of dedicating them to God and promising to raise them in His ways.

To all who have spoken into my children over the years, thank you!  We are so honored with family and so many friends and spiritual family who love the Lord and our children!  The impact you have on our children does not escape us.  And we truly are thankful for you!

Off to get ready....I have an amazing day ahead of me!

Ava's First Day of Pre-School

Ava started pre-school today! She is so confident in herself! No tears! She walks in like she owns it and tells me good bye!

I am really excited about this year as she is at a true Pre-School, not just a mother's day out program. I didn't think there was much difference, but there is already some things I've noticed that I'm pleased with and we are just at the beginning! I think this will be great prep work for her for kinder!

So here is my baby girl all ready for school....and then with her new teacher, Miss Gwen!

Happy Birthday, Ava Claire!

Four years ago today joy was born into my heart again!
Many of our friends now did not know us four years ago. They didn't know us when we walked the journey preceding Ava. So I figured on her birthday, I would reflect a little on just what God did through Miss Ava!
I went to Sierra Leone, West African in June/July 2005. I went to complete the adoption of our surviving twin, Eden. I was there three weeks. I fell madly in love with a little girl that I had to leave behind...having her ripped off my neck the last time I saw her thinking I would return in three days to get her. That was almost five years ago, and is still the last image I have of her.
What that trip did to me was life changing. Not for the better at the beginning. But after wrestling with God that has left me with a limp, it changed me for the better. Mainly, it taught me to trust in God, not an outcome! My faith is not in outcomes, but in the God that provides the outcomes!
In the months following my return without Eden, hope was hard to find and joy was even more elusive! I read the scriptures that said God offered the abundant life, but I had just walked the most faith filled journey of my life only to have it end in what I viewed as total disaster. I truly was at the biggest crisis of faith I have had thus far. For the first time in my life I wasn't sure God even existed much less cared about little 'ol me!
Just two months after returning from Sierra Leone, John and I were arguing about who would go back to get Eden. I was determined that I would since she had already bonded with me. I don't even remember the reasons why he thought he should go. All I know is that we were still making plans for one of us to fly back and pick her up as soon as the Embassy had finished their field investigation and gave us the green light! Then I started feeling extremely exhausted! We were using preventative measures, so I couldn't really wrap my head around being pregnant...besides; we still had a four year old who was coming home any day now! I couldn't handle that many preschoolers and be pregnant!

I kept putting the signs off as stress. But one night, I decided to find out for sure. Hadn't even told John that I suspected anything. When that little line showed up, I was stunned! So I went into John about 2 or 3 in the morning and flipped on the light (I always seem to tell him about my pregnancies in the middle of the night!) and said, "Well, it looks like you win, you will be going to get Eden!", then showed him the test. He sat straight up in bed and said, "What?!" So I said it all again as it soaked in for him.
We were excited, but still shocked and not sure how we would do it financially, emotionally or physically! But as always, we saw today, God saw tomorrow.
Just two months after we found out that Ava was on her way, we would receive the devastating news that Eden would probably not come home, and in January 2006 we would receive the definite "no" to our visa request. Without living in Sierra Leone for 6 months, my baby girl who bonded from the start and called me momma and held on to me with all the might her weak little arms could muster that last time I would see her would not be coming home. I was quite sure that life would end. I wasn't sure how to go on....then I would remember the life growing inside of me. The life that we hadn't planned, but that God had placed there as a magnificent surprise. In those moments, all I could think was that I had a life inside of me to protect. Getting too upset or distraught would put that life at risk, at least in my mind. So I knew I had to put one foot in front of the other.
As the months went on and my belly grew, my emotions were a mess. We had waited over a year and a half for Eden, and now she would not be coming home. A friend who was adopting at the same time from Sierra Leone and I would say it was like being eternally pregnant! We kept expecting, but no birth! There was an irrational part of me that wondered if at the end of nine months I would really have a baby or if the doctors would say, “Oh, I’m sorry. We didn’t really mean May! Please fill out this other stack of papers and we will set a new date!” I still had the experience of my first pregnancy when we lost our baby that haunted me also. Being pregnant didn’t mean a baby at the end anymore than adoption did! I was scared to hope, scared to feel, but most of all scared to trust!
That morning as they prepped me for the c-section, I was so ready to meet my baby girl! But as they took me into the delivery room, anxious doesn’t even begin to describe how I felt. The longer it took that anesthesiologist to get my spinal finished, the less I could breath. They hadn’t let John come in with me while they were prepping me. I think I asked the nurse 10 times if they had gone to get him yet. When he finally was allowed in, I was a mess! My usually strong woman demeanor left and all I could say to him was don’t leave me! Stay right here (which meant that he couldn’t look over the sheet and give me a play by play of this birth as he had Callie…..but he had already been instructed not to do that even if I was not a mess….no woman needs to hear her husband say, “they just put your stomach on your chest!”) .
It seemed like it took forever for them to get her out. When they finally did, I heard a cry that was full of gurgle and not clear at all…but in that moment, I was filled with joy and peace! All fear was gone. It was as if her birth brought back the joy that had been taken from me with the past two years of losing Eden and Addy! Dr. Nabulsi quickly showed me a very blue little face and rushed off to the nursery. I didn’t really get to see her, but knew from the color, she needed to get to the nursery so just kissed what skin I could see and told them to go.
As I have shared this story over the years, I am always quick to point out that no child can replace another. Ava in no way “replaced” Eden or Addy. I still ache from time to time to hold Eden in my arms and wonder if God’s plan will someday include her living in our home as a physical part of our family (for she will always be my daughter whether I ever lay eyes on her again or not!) And Addy’s life was snuffed out way too quickly…yet I see the impact her life had on so many through Addy’s Hope. So while Ava could not replace them, she represented something priceless from a Heavenly Father who loves me more than I could ever love any of these girls or ever even comprehend! Ava was a promise that life would go on! I would not die from a broken heart. Her first cry brought a promise that joy would return and life would be full and abundant again! Even through the next 36 hours that required her to be under oxygen, I had no doubts. The moment she breathed her first breath of air on this earth, God touched me in a way He hadn’t before. I can’t say that my trust had been fully restored, as I still struggle through that with Him, but I knew He loved me and had not forgotten me as I had so often wondered over the past years!
Every time I look at Ava’s sweet smile, I am reminded that God knew when He ordered her to be knit in my womb that I would need her as a reminder over the next year that God loves me and intends for life to continue after heartache and devastation! She is a reminder that God holds the future in His hands and has perfect plans that I can never imagine!
So today, my precious Ava, I celebrate your life! A life that has taught me to love deeper and trust fuller! Happy Birthday, Baby A! Mommy loves you!