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! 

I surrender....

So today was not a Hallmark movie day at the Petree house! In fact, more than once, I found myself at the end of my rope.  I quit at least twice today!  We are in a really rough phase with two of our kiddos from hard places.  I heard at a conference last year the term "specialized parenting" to describe how you have to parent children with a history of abuse or trauma.  I thought of that several times today and wondered if God realized He gave these precious ones in need of specialized parenting a pretty ordinary mother who was thinking she really can't supply all they need.  So many times peole tell me, "I could never do what you do"....well, I have news for you, today, I couldn't do it either!

You see, the only way I do what I do is through total surrender! Maybe you aren't suppose to parent 9 children with four of them being 4 years apart in age.  But if God asked you to do it, you could do it...through surrender! Because I can't do it either...without surrender!

Having just finished the Christmas season, there were many times the thought, "if....." came into my mind.  "If we didn't have 8 children at home we could...." "If we didn't have four kids who are four and under we could..." If we didn't have so many children who require specialized parenting that wears. me. out we could.....  Now I know these thoughts are from the enemy and on a good day, I take them captive and shut them down before they ever take root!  But on a bad day, when things have been particularly rough, I venture down that rabbit trail just a bit in my mind.

The truth is, at any point that John and I said yes to any of the children in our home, both the adopted ones and "unplanned" biological ones, we could have said no.  We could have said to God, taking in a fifth child will cost us too much.  We are going to stay comfortable with our four and no more.  We could have said losing two from failed adoption and death is enough, we will stay content with our three.  We could have said our children have suffered enough over the past year, we are not adding a newborn and 11 month old to our family so that the healing scab is ripped off and the hemorrhaging starts again.  We could have told God, I can't do that.  And honestly, in a couple of instances, I did.  However, He would continue to speak and ask me to surrender comfort, fears, expectations, my view of a "perfect life".  And in a matter of time, I would come to a place of total surrender where my true desire was to do that which He was calling me to do!

You see, when we look at people and say, "I can't do that".  Maybe what we are saying is, I couldn't surrender that much. Just minutes ago, friends of mine said goodbye to their baby boy.  I look at their pictures and think, "I couldn't do that!"  But that baby boy and his story reached 100,000 people in the month he was on this earth.  His last post included the gospel with an invitation for those who don't know Jesus to meet Him!  That my friends, is faith and trust! That is surrender!

What is God asking you to do that you look at and say, "I can't do that!"  Is it staying in a loveless marriage?  Is it adopting a teenager from the foster system?  Is it leaving a lifelong career to follow a dream He gave you years ago?  Is it walking away from a friendship that is toxic? If you're answer to a decision you are wrestling with is, "I can't do that!"  Then perhaps you need to revisit it and ask, "What am I not willing to surrender to do that?"  You see, God asks us to give it ALL to Him!  That means my "right" to have a comfortable life because we worked hard to get here.  That means my right to use the bathroon without fingers under the door or "MOM!" being yelled from three different places for the 45.6 seconds I am in there!  Sure my life would be easier in so many ways with less children.  But I also know that every one of these children were placed here by God! And I am thankful that I didn't stop to count the cost at the moment He asked me to accept them as mine....and I am even more thankful that He didn't stop to count the cost when He sent his very own Son to the cross for me!  So what do you need to surrender to turn your "can't" into a "can"?

A Word from the Lord for Parents

I wrote down "strong and courageous" in my journal.  I felt in my spirit God was going to ask me to step out of my comfort zone in 2015 to speak boldly for Him.  I wrote down Acts 4:29-31 "grant to your servants to continue to speak your word with all boldness, while you stretch out your hand to heal, and signs and wonders are performed through the name of your holy servant Jesus.” And when they had prayed, the place in which they were gathered together was shaken, and they were all filled with the Holy Spirit and continued to speak the word of God with boldness." I just didn't think it would happen at 1:00 am on New Year's Day!  He didn't waste any time! 

I have had Words for people a few times, but never a Word for the Body...until now.  The message from God was strong enough that I couldn't go back to sleep until I got it out there..so here goes (at 3:46 am)...

I used to be a very vivid and regular dreamer.  However, I would not say that many if any of my dreams were spiritual in nature...or maybe they were and I just didn't have the maturity to know it.  Anyway, I haven't dreamed like that for a few a years now.  Now if I have a dream, it is almost always spiritual.  However, not always from God.  Sometimes they are nightmares, but whenever I dream, it is vivid! I woke up just after midnight from a very vivid dream. I don't remember being afraid in the dream, but when I woke, the first feeling I had was fear.  It wasn't the "in awe of you" kind of fear, but the heart racing, palms sweating type of fear.  That is not from God! So I am not saying God gave me a dream, I believe the enemy planted that to cause fear in me. The details of the dream I don't believe are important, but it involved losing most of the people who are dear to me.  

Just as quickly as the fear came, a peace flooded over me.  Then God spoke.  It was a message that He has been giving to me for a few weeks now.  But this time it was stronger and more urgent.  It is for parents.  It is a reminder that we need to be diligent to be covering our children in prayer.  It was a reminder that the enemy is out to steal, kill and destroy our children.  As the time of Christ's return draws near, the enemy will raise the stakes in his battle for the call on children's lives.  This is not a message of fear!  This is a message of hope and a reminder that we as parents have the authority to cut the enemy off at the knees and place his head under our heel where he belongs.  However, many times in our complacency and busyness of day to day life, we leave the door wide open for him to come into our family, and in particular to our children  This is not a call to say bedtime prayers with our children as we tuck them in, while I believe that is vital as well!  It is a call to get on our knees and war in the heavenlies calling down God's will for our children from heaven to earth and closing all gaps and holes where the enemy can could get a foothold and take them on a detour.

To confirm this Word, when I woke up, I went to my FB page.  At the top is the update of Baby AJ who was born just a few weeks ago at 23 weeks gestation.  He is fighting for his life!  Just below his update is that of another friend's baby who was rushed into emergency brain surgery last week at less than 2 months old.  I believe God has a high call on the lives of these children!  And I believe God is already using their lives for His glory as hundreds if not thousands of people storm the gates of heaven for these two babies while their amazing parents point those watching...medical staff as well as strangers following on FB and other social media...to Jesus!  Then less than an hour after I woke up, my daughter sends me a text message as she is at a sleep over with friends.  It's now about 2:20 am.  We end up texting for almost an hour about some spiritual matters!  For those who don't know my daughter, let me just tell you, she. is. amazing! But it just confirmed that the enemy is desperately trying to steal the faith, joy and calling God has placed on children all over this earth!  And we as parents CANNOT stand by and watch while he does it!  We MUST cover our children in prayer and equip them for life in spiritual warfare!  We have the power, authority and weapons to win this war, but we must pick them up and fight!  2 Corinthians 10: 4-5 For though we walk in the flesh, we are not waging war according to the flesh. For the weapons of our warfare are not of the flesh but have divine power to destroy strongholds.

I believe 2015 is a year that we will see children rising up and leading revival!  I am committed to being on my knees for my children...from 19 to 1! God is calling us to cover them all as there is no junior Holy Spirit and He will use them all no matter their age to draw others to Him!  Whose with me?