Reflection

I have spent the last couple of months reflecting. Slowly walking out of a valley we have felt stuck in since September 2016. One year ago, I was on a train from Paris to Germany with Adam. We had just had the best summer as a family ever. We traveled, had some great adventures, everyone was healthy and happy. We were truly in a great season. 

Through my life there have been times that a word from the Lord has been crystal clear. They have always come in times of my stillness. Either out of desperation or just posture. As our train traveled from Paris to Germany, I sat there looking out the window over the French countryside and the Lord softly said to me "I have given you this summer with your family to sustain you through the next year. Things are about to get hard." In my heart, I knew this was truth. I had been feeling for weeks like my body was gearing up for a battle. It felt unsettling, but I didn't know what to make of it. Of course, I had no idea what was in store for us as a family, I just knew a storm was coming. It was a warning. Said only to me. I felt crazy telling Adam about it. It went something like this:                                                                                                                            

Me: "So, God told me that things were about to get hard."

Adam: {blank stare} "ok, what does that mean?"

Me: "Not sure." 

Several weeks later, God would speak to Adam too. 

The week after we got home from Europe, things with Henley started to unravel. Things weren't right, but we couldn't put our finger on the exact problem. I wasn't shocked. The Lord had just given me an advanced warning that something was coming. It started with a concerned email from a teacher and progressed in ways we never imagined after that. (See those blog posts here Henley Update Part 1 & Henley Update Part 2)

The morning of October 10th I got the phone call that my grandfather had died unexpectedly. I was on my way to a doctor's appointment of my own at the time and my only goal was holding it together until that was over. At that appointment I was diagnosed with mono....again. Something I haven't been able to seem to kick since high school. I've had it come back many times. I had been feeling "off" for a while and this was the conformation that my body needed some serious attention. A couple weeks later, I woke up one morning with a terrible headache. I did everything I could to get rid of it with no success. A few days after that I developed a low grade fever. I spent most of the next few days in bed. I still had a horrible headache I couldn't shake and had now had a fever going on 5 days. A few days later my headache got too bad, I begged for Adam to take me to the Emergency Room one night. I thought my head was going to explode. They did a CT scan and it came back "normal". They drugged me up and sent me home. I woke up the next morning and still had a headache. Day 10 of low grade fever and unrelenting headache and now I was dizzy. I felt nauseous and didn't feel like I could drive a car. We had an appointment for Henley and so Adam drove us downtown for the appointment. 20 minutes into that appointment I had to walk out and run to the bathroom. I started vomiting uncontrollably. I KNEW something wasn't right. We left that appointment and Adam called my doctor. He was very concerned and so was I. The doctor told him to bring me in immediately. After an examination he looked at Adam and said "I want to test her for West Nile. I think she either has that or viral meningitis. It's likely one of the two." Instantly terrified, I asked and he looked at me and said "If it had been bacterial, you would have been dead by now." 

During this time we were still trying to figure out what was going on with Henley. We have doctors appointments and tests and more tests being run on a regular basis. There was so much uncertainty and we were confused what we were supposed to do with the information we were being given. One evening the Lord said to Adam "I took care of her the first time, what makes you think I won't do it again?" No details, just a promise of protection for Henley. 

A few days later we were supposed to leave for our ranch to spend Thanksgiving with family. I still didn't feel well. Irritated about everything, we packed the car. We got in the car and I turned to Adam and said "I do not even want to go to Thanksgiving. I want to stay home. I don't even care that we have nothing planned, I don't want to go." The car was packed, kids in their carseats, dogs in the back ready to go..... so we went anyways. The very next day we lost our precious dog Colby on the ranch. A saga many of you remember if you are friends with me on Facebook. It was awful. 9 Weeks of searching for our precious baby and we never found him. It still makes me cry. 

We left Thanksgiving with one less family member. We would have stayed out there forever looking for him but we HAD to get home. I needed to go to the hospital... again. The Sunday after Thanksgiving I drove myself to the ER at 5:00am. I packed a bag because I just knew they were going to admit me. I thought I had appendicitis. I went in with all of the symptoms and they did a CT scan of my abdomen. The doctor came in and said "Well, the good news it that you don't have appendicitis. The bad news is that they found a small mass on your right kidney." {Insert blank stare} That started weeks and weeks of doctors appointments, more imaging and more questions. 

A couple weeks into December we took a leap of faith and traveled as a family to New York City to meet Dr. Greenfield. We had heard amazing things about him and felt like He might be the answer for all of the things going on with Henley. We spent an hour with him and at the end of our appointment it was determined that a second brain surgery was in Henley's very near future. Adam and I knew that there was something serious going on with my health but we still needed time to figure it all out. We needed more time to get me healthy. There was no way I was going to be able to handle everything with Henley if I was barely well enough to get out of bed myself. We asked for counsel on how long Dr. Greenfield felt like we could wait. He gave us about a 6 month window.  (Here is the cliff's notes of that trip)

We came home, had more doctors appointments. The final specialist I saw (#7 in the lineup)  told me that "I have only seen one other case like yours in my 20 years of working with kidneys. I am pretty sure this is going to end in you having your kidney removed though."  Really??? You have seen ONE other case and your suggestion is just to remove the whole organ? Surely there is SOMEONE in this country who knows what this is and how to deal with it!! We were out of time and out of options in the metroplex. Henley's surgery was in 3 weeks. So I began looking in New York City for someone who could give me a "8th opinion" about my kidney. I found a guy who specialized in non-cancerous kidney tumors. I thought for sure this was my guy. I scheduled an appointment for a couple days after Henley's surgery since we would be up there anyways and this guy was in the same hospital. 

A week later, another emergency. Adam was in China on business. I took Haven to her first softball practice of the season. It was a beautiful, quiet Saturday morning. Zane & Henley played on the playground and I talked with some other moms while we watched our kids practice. All of a sudden that ear piercing scream of your child that stops your heart and all of time stands still. Zane was running towards me holding his arm. I knew instantly it was broken the way he was holding it. It was SO bad. The other mom's knew, we needed an ambulance. My world came to a screeching halt when the realization came over me that I was all alone. Adam was in China, My mom was in Oregon, My Dad and Aunt and Mother in Law and Father in Law....all of them were out of town. I needed someone to rescue me. The ambulance took me and Zane to the hospital, but the girls had to stay behind with total strangers I had just met until my best friend could come get them and take my car home. It was a nightmare. We got to the hospital and it was determined that Zane needed an emergency surgery. I called Adam and woke him up at 3:00 in the morning to tell him the news. 

Two weeks later we left for an undetermined amount of time in New York. Henley's surgery was March 8th. God was there, just like He promised Adam He would be. He took care of her and all of our prayers were answered. Friday morning we left my mom with Henley and rode the elevator up a few floors and went in to meet a kidney specialist. Right off the bat he said "So, what you have going on here is super rare. You've got what we think is a kidney aneurysm. With that being said, I'm actually not the guy you need to see about this. In my head I was yelling "WHAT?!?! You've got to be kidding! I thought YOU were the guy! I researched you! You specialize in non-cancerous kidney masses! This can't get any more specialized than that."  He continued: "But the guy you do need to see just happens to be here and he can see you now. He will be in in a couple of minutes to talk with you. He is a Urologist and a Radiologist and so he specializes in radiology of the kidney and interventional procedures." 

Dr. McClure stepped in the room, shook our hands and began talking. He had looked at the images and was fairly certain he knew exactly what he was looking at. He explained that this was either an AVM or aneurysm off my main renal artery coming from my heart and that there were two risks involved. We talked about the risks and he stated that what was happening in my kidney was on the cusp of needing to intervene to avoid a potentially life threatening situation. He explained that a kidney aneurysm was so rare that even an "expert" in this would probably have only seen 13 of these cases in their entire career and he had seen 4 up to my case. He assured me that for a case like mine they would take a collaborative approach and there would be a team taking this on rather than just one person. 

We went into Dr. McClures office to look over the images on his computer and he started asking me medical history questions and writing my answers down on post it notes. It was all a whirlwind and he said he would discuss things with his team that afternoon and call me as soon as he had some information for me about a possible solution. 3 hours later my phone rang. It was his office calling to schedule pre-op for surgery on Monday.

Monday March 13th. I had had a couple of days to think through the appointment and the things that Dr. McClure had said. I went in for my pre-op blood work and while I was sitting in there I asked the nurse if there was any way I could see Dr. McClure. I had forgotten to tell him something that I felt like he needed to know before my surgery. Again, he happened to be in his office and I walked in and sat down in the chair across from him. I told him that it dawned on me that I had failed to mention a really important part of my medical history. I told him "I have Ehlers Danlos Syndrome, do you happen to know what that is?" He said "yes, a little bit. It's a connective tissue disease." I said "Yes, I just know that it can sometimes make things more complicated and so I just wanted to make sure that I mentioned that to you." He wrote it down and that was about it. I left his office and said "See you Wednesday."

Wednesday March 15th. Both mine and Adam's moms were in New York at the time, as well as my dad. They had all come up for Henley's surgery, which now turned out to be really helpful because the focus had shifted. Wednesday afternoon we kissed the kids and walked across the street into the hospital, just the two of us. We wanted everything for the kids to stay as "normal" as possible. We didn't want them to worry about me and I am certain we down-played the seriousness of the surgery. I was sick to my stomach. Terrified about the procedure. I had spent time the night before crying, begging the Lord not to let me die here in New York. I knew the risks were great. I knew the potential complications and risks of aortic dissection and bleeding out. I even knew of a person my age who had died in a very similar procedure and left their wife and children behind at age 35. I remember specifically crying out to the Lord saying "Please do not let me die here. Please don't let it all end like this. Please don't allow my family to go through any more trauma, I truly do not think they can handle losing me right now." While explaining these feelings to a close friend later, I told them "It's not like I don't trust the Lord here, It's just that I don't know what the plan for my life is. Maybe this is where my story ends. I am fully aware that we have no control and I could die at any given moment. Maybe my entire purpose in life was to fight to get Henley to the right doctors to take care of her." When you think about it, we really don't have any clue what today might bring. I get it, this sounds super morbid and "Debby Downer". I think the fact that my mom seemed to be unusually anxious about me going into surgery was also adding to my fear. It seemed like everyone was more worried than normal. So, here is what happened in surgery that day. I was awake off and on for the surgery and that was horrible....don't recommend it. I kept having people in my face saying "we need you to breathe Leslie!". Yes, I know. We can't just have a non-dramatic event in our lives ever. UGH. I promise It's as exhausting for me live through as it is for you to be reading about.

Fast forward a few weeks. We got home. I was in horrible pain. Literally thought I might die or my abdomen might explode from the pain. Went to the hospital a couple of times. Blood pressure was insanely high and guess what.... The aneurysm was back. SERIOUSLY?!?!? I know. Long story short, we ended up back in New York for a second surgery. Repeat all feelings and anxieties. This time we had at least decided to really work through writing our wills before we left on this trip. At least I felt a little better about what would happen if I died. That surgery ended up being another hard one too, although we came home and were a lot more prepared for the pain of the recovery process. 

A month went on and I was finally able to get into a doctor in the DFW area that I had been waiting to see. Our appointment went really well. In fact, I ended up sitting in front of him for over an hour. At one point he looked me straight in the eyes and said "You realize this would have killed you right?" I told him that I thought that might have been the case but that I thought I was just being dramatic. He disagreed and proceeded to sit back in his chair and tell me that I was his new complicated case. He told me we were going to need to meet again and in the mean time he was going to be doing some research about Ehlers Danlos Syndrome and re-reading through my info and consulting another doctor he was thinking about. So we agreed to meet again. He told me that for now, I was safe and it was okay for me to leave the country to travel to Italy, but that it was extremely important to keep my blood pressure in check from here on out. 

A day or two later Dr. McClure called to go over some recent CTA images they he had requested to make sure that I was actually indeed, safe to leave the country on vacation. We talked for a while and I told him what the other doctor had said to which Dr. M replied "Oh, for sure! This is why we were so concerned and why the procedures took so long to fix. The Ehlers Danlos Syndrome makes this a much more complicated and delicate situation." At the end of our conversation he told me to go enjoy Italy with Adam and that we would follow up in a couple months with more imaging. 

We left for Italy and my plan was to spend some time processing all of this. I needed to write it all out, work through it in my head and leave it here. Writing is my therapy. It's where I go to purge all of the emotions I can't seem work through with words or tears. It's where I turn to help me make sense of all of the feelings. I write because one day my kids will read this. They will read about what we sheltered them from. They will understand why we made the choices we made. I pray that they will read our story and it will give them strength to walk through anything in their path, knowing that the Lord is always ten steps ahead of them. I pray that others who read this feel the same. I've never been more sure in my life that The Lord has me in the palm of his hands. He sees me. He KNOWS my hurt and my fear and my insecurities. He can handle ALL of my questions and my doubts. He orchestrates doctors appointments and "chance" meetings. He gives us the tools we need before going into battle, and He is the calm in the storm. He is good and He is powerful. We need only seek Him and lay our agendas at His feet. 

The Lord gave me a word on this trip. REDEMPTION. He told me that this year will be a season of Redemption. I've heard the phrase "Beauty from Ashes" in my head over and over for several weeks now. I knew it was in the bible, but I honestly couldn't remember where it was or in what context and so I finally googled it. This is what came up:

Isaiah 61 (NIV)

The Year of the Lord’s Favor

1 The Spirit of the Sovereign Lord is on me,
    because the Lord has anointed me
    to proclaim good news to the poor.
He has sent me to bind up the brokenhearted,
    to proclaim freedom for the captives
    and release from darkness for the prisoners,
2 to proclaim the year of the Lord’s favor
    and the day of vengeance of our God,
to comfort all who mourn,
3     and provide for those who grieve in Zion—
to bestow on them a crown of beauty
    instead of ashes,
the oil of joy
    instead of mourning,
and a garment of praise
    instead of a spirit of despair.
They will be called oaks of righteousness,
    a planting of the Lord
    for the display of his splendor.

I pray that you will be encouraged. That you will seek the Lord and find Him. I pray you will know that He loves you and trust him to care for you. He is big enough to handle all of your chaos, your steepest mountains and your lowest valleys. 

NEXT UP: An update on Henley since her most recent visit to the ER.