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!

The Next Faith Journey: Around the mountain again and SOLD!

Just when we wondered if it would ever happen, it did! We had one offer on the table, but the buyer had to sell their house. They had not even put it on the market yet, and had backed out twice on putting it on the market...so we were not totally sure they would go through with it. So we scheduled an open house. We have been told by numerous real estate agents that open houses don't work. But we had asked God if there was anything we needed to do in our wait, and we both felt having an open house was His answer. Within two hours of the end of the open house we had an above asking price offer that was not contingent and gave us a week lease back at no cost! Truly, a gift from God! God has spoken to me at the beginning of the process that we would know His love by the sell of our house. In my desires, I had assumed that meant a fast sell! But as we sat down to sign the contracts, I was overwhelmed with God's love as I looked at how He has truly blessed us with a stress free contract! And the couple has been AMAZING to work with! We had the inspection and easily agreed up on what needed to be fixed and how it would be fixed, It has truly been the most stress free contract we have ever had on a house! That's God's love...extravagant and peaceful! And abundant...literally while we were signing the contract that night to send back to their agent, John received a text from one of the other people who had put an offer on it a few weeks back. They were wanting to put an offer on it again...abundance! Such a great picture of God's love for a gal who is very legalistically wired and has a hard time believing God just gives good gifts because He loves us and is a good Father who just wants to lavish great things on his children!

But I have to tell you, the journey is almost comical as we look back at it. I mean like you could write a pretty hysterical cartoon about our trip to that point. Once God spoke to us that we were not to battle for the sell of our house, but instead were to rest so that He could give it to us as a demonstration of his love, it took us a couple of trips around the mountain. I had a very wise mentor that would say God takes us around the mountain until we learn the lesson sometimes. I would definitely say that is the case here.

We had so much interest over the course of the 44 days it took to sell our house. It seemed like it was constantly a game of "this offer is on the table" then "they backed out and we are back to square one". It was an emotional roller coaster of excitement that our house was possibly sold and disappointment when it fell apart. But after God spoke that it was not a war to fight, but a time to rest in His love, I tried to stay focused on that. John and I both had our moments where we could just rest in that and circumstances did not make us waiver, but we also both had moments where the circumstances over came us and despair, fatigue and frustration set in! But here is the cool thing! About two days before the open house, I felt God say, "Trust me!" I had this sense of wanting to just free fall into God's love. I literally pictured myself falling off a ledge and bouncing up into the air again as I hit his "love" as if I hit a trampoline (in case you don't know by now, I am very visual! ;) ) I was honest and told God that I was scared to let myself fall because I wasn't sure how I would survive if he let me hit the ground instead of catching me! Typing that, I understand how ridiculous it sounds that God would drop me, but in my heart, that was my fear. I only heard one word in return -JUMP! So I did!

The next day we got discouraging news about the family who was putting their house on the market to buy ours (this was before our open house). As soon as John told me, I had a very brief moment of panic, and then the familiar voice - "I've got you! Keep falling!" And I did! I did not waiver one bit in my resolve to trust God and keep falling into His love! And so did John! For the first time in all the roller coaster ride, John and I both at the same time did not let circumstances dictate our emotions. We did not let circumstances dictate our mood. We stood on what God had said and resolved to wait until His time to make circumstances line up with what He had already spoken! We had finally walked around the mountain enough times - we had the lesson not just in our head as knowledge, but in our heart and had changed how we operated! And the next day, we received the amazing contract! I can't say that I have ever "felt" God's love more than I did in that moment. The free fall didn't end in me shattered at the bottom, but instead wrapped in the arms of my loving Heavenly Father smiling down at me!

And even the timing has been perfect despite my begging God to give us a contract sooner....we will be able to stay in our house one week which puts us needing to live somewhere just as my in-laws are headed on vacation leaving their house empty! We will move in the new house the week after school starts,  (the first week we will be close enough for the kids to start school, just not in our house) so no sitting at a new house with no friends making the kids more anxious about life in a new city....so many things that show God's extravagant love and provision for us! Truly thankful for the lessons we have learned on this journey! In nearly 19 years of marriage and all the "adventures" John and I have taken, I would say that this one by far has exceeded any in teaching us spiritual truths as individuals but most of all as a couple! Some day we will share our entire testimony....but for now I am resting in the fact that we have walked together closer spiritually through this than ever before! And can I tell you, the enemy hates that! Which will have to be a post for another time! :)

Thank you for those who have taken this journey with us! It has been amazing to hear all the stories of those who have shared. Many of you are still journeying (as are we....this journey isn't just about a house but about our family entering a spiritual promised land that we are still fighting to retake!)...please know that I am believing with you for God's extravagant, loving and best for you ending to your journey as well! Don't give up! He has amazing things for you!