longing for heaven tonight

This last week has been full of pain on a hundred different levels. For some odd reason, my lyme disease has flared up in a major way. It hurts to walk and it hurts to sit down. It seems impossible to fall asleep at night. I found myself praying for so many different people at 2 in the morning the other night and thought how crazy it was that my sweet E was sound asleep and I still was up past midnight. So, I have been praying for y'all. I feel like every phone call and text I receive is more news of heartache, pain, and tragedy. Oh Lord, it makes me long for heaven. One of my sister's best friends is going through pain that I cannot FATHOM. I have wept over her sweet family. My neighbors who I love so much just found out their baby boy has a rare form of cancer two days ago. He is a beautiful 9 month old baby. Again, Lord have mercy. Please be praying for little Elliott as he begins his journey of chemo in the upcoming weeks. They are such examples to me already...they are so positive and full of hope. Elliott has incredible parents and I'm so thankful they are in my life.

Clinging to this verse for so many people (including myself) tonight...
"He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.”
Revelation 21:4

sleep, glorious sleep

Tonight I'm overwhelmed that God chose Chris and me for this journey. We were two young married "kids" that definitely felt called to adoption. Did we know then what we know now? No way (we thought the dossier was difficult). Would I go back and do it all over again knowing what we've gone through. Yes! Yes! A thousand times YES!! Eliana is our beautiful gift from God. Her name means, "God has answered our prayers." And, He did just that with our sweet Guatemalan girl. We prayed to be different. We prayed to live radically. We begged God to bring her home, and He did. She has such an undeniable beauty. Her smile is amazing...her sense of humor is hilarious. I love that she wants to be with us and that when we drive up to our house, she says "home sweet home!" God is answering our cries for help for our sweet girl. SHE IS SLEEPING. Those three words are changing our life. She is smiling and cuddling...things that haven't happened in months. I feel like we are seeing sides of our little girl that we have never really seen. Is she still hurting and anxious? Yes. And I ache for that part of her to be healed. I am wrestling through a lot right now (will share more later), but tonight I am praising God for rest.

dang anxiety

“Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble." Matthew 6:34

"You are a mist that appears for a little time and then vanishes." James 4:14b

Let me just sum up the last day and a half in two words (or three if you add the &)...fear & anxiety. And, it's not just our sweet Eliana...I am really struggling again. Last night was really rough. She woke up at 3 in the morning with what we only figure was a terrible nightmare. It literally sent her into a gigantic rage/panic attack in one second. Chris was sleeping with her...and I ran upstairs as soon as I heard what was going on. It was scary. It's not fun watching your child screaming, throwing their little bodies all over the place, foaming at the mouth (we are pretty sure she had a seizure), and disconnected from reality. She was so filled with anxiety that she did not go back to sleep. Today, her little smile was gone. We had her big follow-up visit at Vanderbilt and again, panic set in quickly. I was helping two nurses try to hold her down to get vitals (I really wanted to scream "do you really need her blood pressure"), and they were shocked by her rage. I rattle off my 3 paragraph story of why she is the way she is and try to remain super calm. Then, we take her into see the doctor. This is kind of where I lose it. Today, our doctor started sharing things that weren't made clear because of the craziness of the hospital. But, some serious realities set in. One of those is that there is no reversing what is damaged in her little brain (apart from God miraculously healing her). There are two parts that are damaged (from the MRI)...one is congenital and one they said is probably damaged because of PTSD. I kind of felt like I was punched in the stomach. She told me that this process will be slow and more than likely will be life-long (oh man, I am longing for heaven). She told me Eliana is a difficult case because she has a lot of different issues and we will never know the whys because of her adoption. There is no label for E or a specific diagnosis. She said we will not know what she will be like as a teenager or adult. She said, "will she be able to live a fully functioning, independent adult life? We don't know." Okay, so there was a lot more but I will stop there.

I walked out of the office and felt like I was going to throw up. I think (no, I know) I was panicking. Then, we were sitting in the Vanderbilt snack area, and I started crying which I try to not do in front of E. One of the sweet nurses came over to me out of the blue, hugged me, and said "God's got this"..."He chose you to be her parents"...and a few other things that made me bawl and hug her. I told her what a blessing she was to me and she said "takes one to know one" which made me laugh. But, seriously, thank you God for putting her in my path. My mind can get going thinking about what it could look like 20 years in the future and that does me NO good. I might not be here tomorrow. These verses are more than just challenging...they are what's keeping me grounded. Please pray for E right now...she had another major panic attack tonight. We are now watching Curious George for the 1,000th time in the last two weeks. Thanks for praying. Much love.

P.S. I am still praising God for the breakthroughs we have made...none of this changes that!

twelve minus eight=

So, one of the lessons I have learned in this entire process is not to put all of my eggs in one basket. She had a rough night last night...full of major anxiety and chaos. She slept 4 hours. Even though this is ridiculous, I really thought...she is going to sleep another 12 hours. It is difficult not to get your hopes up, but I am still very excited for the few steps we have made. Keep praying for her little mind and brain. She really is so fragile. But, this little chica is smiling more than I've ever seen her smile. And that makes me celebrate!!

twelve

...that's how many hours Eliana slept last night!!

a time to mourn, and a time to dance

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.

our little fisher girl

E caught 21 fish the other day with her daddy. She would throw the fish back into the water and say, "Have a great day...enjoy your snacks!" Check out the bags under her sweet eyes.

purpose

If I had a nickel for every single time I've prayed..."Lord, save me" or "Lord, have mercy", I could probably buy a new car. I don't think those prayers are wrong, but my mindset is changing. Maybe instead of begging God for relief and safety, I should be praying to be used in this dark season. Just the sound of that is more hopeful. Does it mean I won't call my mom and sisters bawling my eyes out? No. I assure you that will happen. Does it mean that this season will be short? No. Pretty sure our "dark season" has lasted quite a few seasons/years. But, it does mean this season has purpose. This is a journey that I didn't quite know was coming but that I am not going to give up on. Here is a blog that my mom showed me the other day...and I can't stop thinking about it. She is my hero, whoever she is.

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"By this past Saturday night, I was hanging on for dear life! I hadn’t eaten or slept a whole lot, and my already-sore wrists and lower back ached all the more. I joked, “I’ll rest when I get to Heaven.”

I kept thinking of Jesus’ words, “Now my soul is troubled, and what shall I say? ‘Father, save me from this hour?’ But for this purpose I came to this hour. Father, glorify Your name.”

I had to look it up and see the context, and was greatly fortified in my soul.

“Most assuredly, I say to you, unless a grain of wheat falls into the ground and dies, it remains alone; but if it dies, it produces much grain. He who loves his life will lose it, and he who hates his life in this world will keep it for eternal life. If anyone serves me, let him follow me; and where I am, there my servant will be also. If anyone serves me, him my Father will honor.”

And it struck me–

This week is why many people don’t want a child with special needs. This is what they’re afraid of!

This non-optional sacrifice right at the very core of life. The painful giving up of self, over and over again. The self that is still alive and active, believe me!

We know He doesn’t shower us with resources to ensure that we would never feel uncomfortable again. So now I am feeling uncomfortable! Will I now ask, “Father, save me from this hour?”

For this purpose I came to this hour, to pour out the strength of my life to the weak and needy, like Jesus continually does for me! This opportunity to fall into the ground and die is what the whole of my life until now has been crafted for!"

(from the blog www.theblessingofverity.com)