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!