Saturday, September 22, 2018

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!

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