


I'm not sure where to begin, so I'll start at how I was feeling a little over a week and a half ago. I hit a place of deep sorrow. My body was hurting more each day and our sleep was becoming less and less. I knew I had to somehow find a place to grieve, and so I decided to go home to Little Rock for the weekend. Chris and
Eliana stayed home in Franklin. Pretty much five minutes after stepping foot into the house, I started crying. The first night, I couldn't stop...I cried and cried and cried to my mom, sister, and brother-in-law. I'm not sure all that I said, but I know that my tears were coming from the deepest place in my soul. I cried over watching my child falling deeper and deeper into a bottomless pit of anxiety/panic. I cried because we weren't sleeping. I cried because I missed my husband (obviously we have absolutely no time together). I cried because I wanted
Eliana to experience what other 4 year
olds experience. I cried because we aren't able to leave the house. I cried because I have a chronic disease and it's the last thing I think about. I cried because my body is in constant pain. I cried because of my weight gain. I cried because there is no time to cry at home. And, it felt good. The next day, my middle sister came in town and it happened all over again. They listened and cried with me. I cried myself to sleep every night I was there. I felt desperate and completely spent. I wanted so much to be back with Chris and
Eliana...but was also scared to re-enter the chaos. Little did I know, the chaos was about to take us to Vanderbilt hospital.
I was sitting at lunch in Little Rock right before I headed back to Franklin, when I got a phone call from Eliana's school. The nurse was very calm and she told me what was happening without using the word seizure. I told her Chris could be there in 10 minutes...and she calmly said that wouldn't be quick enough and they were going to call 911. WHAT?!!! My sister called Chris and he went directly to the school (probably going 85 mph on Mack Hatcher). Her little body was on the ground at the school surrounded by EMS and teachers. She was in and out of consciousness...but looked at him and said "dadda, this is not good." Sweet girl. So, the next part I didn't find out about until a few days ago. But, her little heart rate was fluctuating wildly in the ambulance. Chris said he was so terrified. The sirens were on and they headed to Vanderbilt. Once they arrived at the ER, Eliana had 5 more seizures. And, I was 5 hours away...ugh. I am never away from her, and today I was. It was such a helpless feeling. Fast forward 5 hours...and I'm there. I just wept when I saw her little, tiny body in the PICU. She looked so small. That night was pretty awful. We are trying to explain to the doctors and nurses about Eliana and her history. It is not their faults, but most people don't understand how bad it is unless they see her rages/no sleep in person. They began giving her sedatives because the panic and rage began. She was so frightened of the hospital and kept telling us she didn't understand. So, from about 10 that Monday night until 7 the next morning, she did not fall asleep. Chris had to hold her in a certified restraining hold. The nurses and doctors were dumbfounded that the sedatives weren't putting her to sleep. They tried it 3 different times during the night and she still fought through them. Now, looking back, this night (as awful as it was) was a blessing. People finally saw what her sweet little body goes through each night. I had a few nurses tell me they've never seen anything like it. I feel like it was the first breakthrough.
The next 5 days were filled with teams and teams of doctors. We told and re-told E's story. We shared about what we know about her adoption, her sleeping issues, her rage/panic, and her developmental delays. The neurologists and psychiatrists started working together. We would have 12 people in the room at one time listening and asking questions. They decided to give her a Posey pediatric bed (enclosed and indestructible). It immediately was a hit...she felt so safe and slept better than she ever has in her life (we are praying we can get one at our house). The first night we gave her her night med, she fell asleep in 15 minutes. We didn't know what to do...it was a miracle!!! Her little body is still getting used to her anti-seizure meds. They make her feel a little loopy and tired, but I feel like she is adjusting. She had another good night of sleep last night. But today, she has had a lot of anxiety/panic. But, we realize that this is a long journey. We have a lot of appointments in the next few months. I am so thankful to have a team of people wanting to see her well. Thank you friends for praying...for loving us and E. Thank you to those that brought her fun toys and snacks and food for us in the hospital. We can't thank y'all enough. It is crazy to think that a week ago, I was hitting rock bottom emotionally and tonight I feel so hopeful. Love you all. Thanks for journeying with us.