Sunday, March 11, 2012

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.

13 comments:

13779286-6bea-11e1-a065-000f20980440 said...

I find it hard to believe that you hadn't hit rock bottom long ago. So grateful that others have seen what you have been going through and are determined to help you find answers. Sorry today has been a rough day for E. Hopefully, it will just be a matter of time to find the perfect medications and the right dosages. I will continue to keep you in prayer - that He will give you the strength to continue on this journey. I think what a blessing for E to have you and Chris for parents, as who knows where she would be if it weren't for the two of you loving her unconditionally. His ways are perfect and E is in His hands!

Erin said...

I am beyond words.

Just know that this is so well-said.
You, your husband, your daughter, and your support network are absolutely amazing.

Hang in there; God's got this!

Love you!

Ashleigh said...

Lindsey, you don't know me from Adam, but I have been reading your blog off & on for a long time. We adopted our older son from Guatemala about the same time you started your journey. I was fostering in Antigua and a few of my friends had crossed paths with you and were following you online. ANYWAY, I have been praying for you & Eliana for weeks now. We have been down the road of attachment/post-adoption issues, and it's just so heartbreaking. I understand where you are coming from. You feel so isolated and helpless. I am praying that this will be a HUGE step in healing Eliana's heart & spirit. Wouldn't it be just like God to take such a scary thing like a seizure and use it for her good? Pretty amazing. Hope that you are already sleeping right now! :)

Paige Betterton said...

Lindsey,
Praying so hard for you. Although we don't share the rage/panic we do share a child that has extreme anxiety and seizures. This is going to sound horrible but we love our seizure med. Ours too has a mood stabilizer. I have a master's in counseling and have wondered if children, specifically traumatized adopted children, develop a seizure disorder due to hight levels of trauma/rage/panic/anxiety. Oh how I wish I had tons of money for research. I definately think there's a connection there. Praying. Love you girl.

Paige

Reba said...

I love seeing how God is showing Himself. In the deepest of sorrows, He still is there! And I am feeling so hopeful for you too!

Shanalea Atchison said...

Lindsey, I am a friend of Chris's from HS and college. I just wanted to let you know that I have been praying for you and your family. I can't even imagine the helplessness you have felt over that past years. I hope and pray that some resolution/miraculous healing can take place. Thank you for your realness and honesty. I know that can be scary to share those deepest places, but God honors that and it allows others to know what and when to pray all the more. Shanalea

Becky Lloyd founder of Signs for Hope said...

Lindsey and Chris,

I saw Chris' post from last night, about Eliana's anxiety attack being the worse ever. I cried as I read through your post above, Lindsey. I have no words of comfort for you, but our God does.

"Remember, our Message is not about ourselves; we're proclaiming Jesus Christ, the Master. All we are is messengers, errand runners from Jesus for you. It started when God said, "Light up the darkness!" and our lives filled up with light as we saw and understood God in the face of Christ, all bright and beautiful.

If you only look at us, you might well miss the brightness. We carry this precious Message around in the unadorned clay pots of our ordinary lives. That's to prevent anyone from confusing God's incomparable power with us. As it is, there's not much chance of that. You know for yourselves that we're not much to look at. We've been surrounded and battered by troubles, but we're not demoralized; we're not sure what to do, but we know that God knows what to do; we've been spiritually terrorized, but God hasn't left our side; we've been thrown down, but we haven't broken. What they did to Jesus, they do to us—trial and torture, mockery and murder; what Jesus did among them, he does in us—he lives! Our lives are at constant risk for Jesus' sake, which makes Jesus' life all the more evident in us. While we're going through the worst, you're getting in on the best!

We're not keeping this quiet, not on your life. Just like the psalmist who wrote, "I believed it, so I said it," we say what we believe. And what we believe is that the One who raised up the Master Jesus will just as certainly raise us up with you, alive. Every detail works to your advantage and to God's glory: more and more grace, more and more people, more and more praise!

So we're not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There's far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can't see now will last forever."

I have no doubt these verses mean something completely different to you two than to anyone else.

Praying for you and asking others to do so, too.

Holli said...

Lindsay,
I am so thankful that you have a team of professionals committed to helping your family work through this. I know how alone you felt! I pray this is the beginning of finding answers for you, of solutions, of stability of mind and heart for Eliana. I'm glad you had your weekend away to pour our your heart-you needed that release. Jesus is walking with you through this. Still praying....

Elaine said...

Bless your precious hearts. I cannot pretend to imagine what you're going through. However, I'm committed to praying for you daily - along with SO many others who are praying. Love you!!

Elaine said...

Bless your precious hearts. I cannot pretend to fathom what you're going through, nor do I understand the reasons. However, please know that I love all three of you, care deeply, and am committed to praying for you daily. It's so encouraging to hear that you've got an excellent medical team for Eliana, now. I believe there's one for you, too. Love you!

Andrea and Peter Kidd said...

Lindsey,
I have also been following you and praying for you, yet you don't know me...but I am your sister in Christ and a sister in many experiences. I have a 4 1/2 year old adopted from Ethiopia, and she too has had crazy sleep patterns and rage and anxiety and developmental delays. I relate so much to the pain, the drain, the sorrow, the helplessness, and many things you have gone through. She has been home 3 1/2 years now and things reached their worst a few months ago. Seriously NO ONE would believe the rage and what it is like to deal with unless you witness it. I would get that sick feeling every night thinking of how bad it might get. We also have 3 other kids, and it was really hard for them to hear watch her do this too. In fact she did it at pre-school one day (I am sure it was still nothing like what we have seen at bed time), but the teachers said they had never seen a child do anything like that, and she attends a special-ed pre-school for her developmental delays. We found great success with getting her neurotransmitters tested and starting her on a regimen to balance her brain (her brain is in a constant excited/agitated state). I am sure you have been down every path by now, so I am not sharing this as a suggestion, just to let you know that I understand. My heart goes out to you and I am praying for you, your husband and sweet Eliana. I know you just want her to be free from this so she can LIVE the life she was meant to live. She doesn't want to not sleep, or be anxiety-ridden, or rage and attack you, she is just trapped. I pray that this incident will lead you to the answers that God WILL show you when the time is right. You are doing the work of the Kingdom....you are doing the work of Jesus, it is sooooo not easy, but most people would not willfully accept these challenges on their own. Frankly I wouldn't have either. Yet, our Father has led us to these angels of ours and will guide us to help them be free and redeemed from their struggles. We already see it in our daughter and it is GLORIOUS. I am personally invested in what you learn as we have not ended up in the hospital with many Dr's. and had to go through what you have w/seizures etc. But I am hoping what you learn may help us too. Maybe this is how God will use you and your family. God bless and know we are covering you in prayer for healing, strength and REDEMPTION!!! Love to you!

Emmy A said...

Lindsey,
I have been reading your blog since before you brought E home. I know you have no idea who I am, but I just want to let you know that God will walk your family through this. I can't even imagine what you are going through or dealing with, but I am so thankful that you've had this breakthrough. I just love your sweet family even though we've never met. I have been encouraged and inspired by your strength. Your life right now is such a testimony to the fact that in our weakness, God's power is made perfect and brings glory to His Name! Thank you for your honesty and know that you're being prayed for.

The Milner Family said...

I too have followed your blog since before you brought your little princess home from Guatemala. She's as cute as a button and melts my heart every time I see her face on your blog. We adopted our son from Guatemala around the same time you were adopting E. We had some initial trials with sleep (maybe it's a Guat thing). We were told our son slept through the night. Not so much. Most nights he would wake up every hour. He did this until he was 18 months old. He came home at 6 months. For coming home so young he had terrible separation anxiety. Many told us that he did not remember Guatemala because he was too young but I still think that he felt the sting of so many changes. While our journey of sleepless nights have come to an end we are on a similar journey with my health. We are now beginning to see that it started around the time Noah came home and has progressed since then. We are still in the diagnostic phase of the illness. As you know from living with Lyme when your body is not well it can cause an avalanche of issues that effect multiple areas of your life.

When I first read this post I just thought please Lord they have already been through so much but as I continued to read and think about what you were up against I prayed that this would be the piece of the puzzle that you have been searching for. While I hate that little E had to suffer with these seizures I pray that this will aid in her healing. It is so hard when we can not see the whole picture and we are having to walk not only by faith but we are exhausted and weary.

I can only imagine how difficult it was for you to be away when you received the call but I can not help but thank God for the rest he gave you and for giving you a safe place to empty the pain swelling inside you. He knew that you would need an extra dose of strength for the days ahead. What a wonderful husband to set aside his own pain and his own fatigue to help his bride rest. I pray that God will strengthen Chris, that he will encourage him and that he will give him a time of rest when he needs it the most. I ask that God will give Chris wisdom to lead his family and that he will give him endurance as he fights for his daughter and his wife to be restored to health. I pray that God will continue to heal your body from the Lyme disease that has you trapped in pain, frustration and exhaustion. That you will receive rest when you need it and that you will not blame yourself for being sick at a time when your child needs you. You did not choose this it chose your. I pray for Eliana to be comforted and for God to rid her body of the things that keep her from getting rest and from being filled with peace. I pray that God will send you a medical team that will not stop until this little girl is free from what has entangled her. I pray that God will meet your needs and that you will see his provision every day. That these things will be a reminder of his love for you and that you have not been forsaken.

Coming from someone that has been fighting to keep my head above the water for a sustained period of time: God is always right beside you. He did not ask you to do this alone. He has asked you and Chris to walk this journey because he trust you and because he knows your heart. He knows the frailty of your bodies and he knows to what extent you can endure. You are his children and he loves you so much. Before creation God picked two people that he knew would love Eliana no matter how dark things would become. He knew that she would be safe and loved and that his light would penetrate any darkness that she might see because of the light that lives in each of you. God WILL do mighty things and we give him the glory for it all.

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