I know I’ve mentioned the meaning of Reagan’s name before, but it’s worth mentioning again. Reagan means “little king” but some translations have it meaning “noble” and her middle name, Elle, means girl. She is quite the noble girl.
Picking a name and meaning we liked was super important to Rob and I. I had heard before that 90% of people live out the meaning of their name, so when we’d throw out a name, the question that inevitably followed was “what does it mean?”
My mom said that God names your children…and I think she’s right. Yes we picked out those names, but look at how they fit her and the story God is weaving together for her.
I’m going to share a timeline with you guys as well as photos and video so that you can SEE the results of Reagan’s GA-1 and the damage that has happened.
On Thursday evening, we learned the results of the MRI from Reagan’s geneticist…the neurologist went over everything on Friday, but Thursday our Dr. from Nemours came to break that news to us. That night our close friends Trey and Rachel, Rob’s sister Melissa and my mom came to the hospital to be with us. They saw Reagan flailing on me, she was beating me up by banging her head against me and I was filled with so much hurt and anger that I could barely breathe. Below is a video we sent to our Dr.’s so they could review and determine a medication to give her that night to help her sleep and prevent her from continuing with all of these uncontrollable movements.
On Friday Rob took this video…if you look closely you can see her eyes flutter back and forth. We cried until exhaustion on Thursday, Friday and Saturday. There was no hope.
We took a walk around the lake on Saturday. It was a bright, sunny day. Reagan didn’t turn her head when the sun was too bright, she just closed her eyes. Our hearts sank further as we wondered if she would always look up and to the left and never move her head the other direction, or never make the connection to turn away when something was bothering her. It was like she had given up, and watching her like that…we were giving up too.
That same day, we also went home for a little bit to grieve the things that were and of course, Bauer was good to perk us up. I cried on the floor of Reagan’s room b/c I knew it wouldn’t be the same. I cried when I saw her toys b/c I just watched her not play with anything. After our walk around the lake on Saturday, I was only encouraged a little bit b/c I felt God had made himself near to me, NOT b/c Reagan had done anything to give us any sort of hope and not b/c God had given a even a glimmer of hope. I felt near to him for a brief moment, but otherwise there had been silence.
I think this would be a really good spot to take a side bar…the reason I have posted the photos and video is to express the gravity that we feel due to our current circumstances. Some people, in their attempt at being encouraging, have said she’s going to be OK…that we need to move on and take this new stage of life by storm. Some people have told me I’ll still be able to read to Reagan and sing to her. I’m fully aware of what I can and CAN NOT do with her…and the things I can not do I am grieving. If you can’t understand that, then you are not my friend. Even Jesus himself asked God if there was any other way. Even Jesus, on the cross, asked God why he had forsaken him. Please realize, we felt that God had also forsaken us and it’s not wrong to feel that way.
Reagan has brain damage. Please let that sentence sit with you. Read it again if you have to. And then YOU imagine receiving that news. YOU imagine noticing a drastic difference in who your daughter was vs. who she IS NOW. She’s not playing peekaboo. YOU watch your daughter struggle to eat, swallow, vomit every time she is fed through a tube and then I’ll tell you to get over it. I’ll minimize you. We are not going to just get over this and move on. Our entire life…our ENTIRE LIFE has been altered FOREVER. If you don’t understand that, then do not read this blog, do not comment and do not try and make it seem that I need to just quickly accept this and move on and always be positive. We have an army of friends that are willing to stand in the gap for us, to walk in the desert with us, to grieve with us and if you want to minimize that and you want us to pass it over then just leave. I don’t need anyone telling us how we SHOULD feel or SHOULD act or whatever. There’s a time and purpose for everything under heaven, including our anger, including our doubt and God gives us space to do that. I shouldn’t even need to write a paragraph like this, b/c it is obvious and plain to see due to the magnitude of this situation…but I guess I needed to clear a few things up. #letsmoveon
Waking up Sunday morning at the Ronald McDonald House (RMH) was so hard. We didn’t even cry that morning like we did the previous mornings. We were just so tired, angry and were dragging emotionally. For me, waking up at RMH requires me to have an internal fight with myself. I want to get up and go see Reagan, but I’m sad at the Reagan I see. And I’m angry that we’re not home watching her bounce up and down in her crib on the monitor, talking and waiting for us to go and get her…b/c as soon as we would walk in her room she would just smile and laugh and be so excited to start the day. Her excitement had been gone since Tuesday when we came in to the ER for the third time.
So on Sunday (Palm Sunday), I called the nurse at 6 a.m. when we woke up to see how the night went. She told me she cuddled with Reagan during and after her feeding and since Reagan didn’t want to go back to sleep, she put her in her stroller and took her to the nurse’s station to hang out.
I’m sorry, what?! You are interacting with my baby with lots of other people and I’m not there? Talk about a big fear of mine being dealt with at that moment in time since no stranger had ever watched Reagan before and we had tried to limit interaction somewhat to prevent her from getting sick. But as I thought about it, I thought it was awesome. Reagan loves people so I’m glad she was having good interaction and at the same time a fear of mine in having others take care of her was lessened b/c we really don’t have a choice. We are passing the two week mark of time in the hospital and if we are expected to get any sleep, it will be at the RMH. We need sleep to make the right decisions and to be there for Reagan during the day…the only way it’s been somewhat manageable to do is b/c the nurses have been absolutely wonderful.
When we walked up to our floor on Sunday and saw Reagan with nurses cooing with her and surrounding her in love, my heart lessened the grip of bitterness and anger just a bit. When we looked at her, she looked back and Rob told me that was all he needed. He clung to that tiny bit of hope.
“My daughter looked at me!” he said.
Reagan turned a corner on Palm Sunday and she helped her Daddy do the same. She helped everyone. Rob and I discussed how it had been three days of darkness, and on the third day, Palm Sunday, we received hope. God has a purpose and reason for everything including sending us a message by giving us hope on the third day of a very dark journey.
Sunday turned out to be a good day, she was much more alert, making eye contact, noticing when the door opened and looking to see who entered…she also noticed when a strange man (Eddie K. from church) tried to hold her. She wanted nothing to do with that, and as soon as she was in Mommy or Daddy’s arms, she stopped crying instantly. That’s a good feeling (sorry Eddie)…but our baby girl knows us and finds comfort in our arms. Reagan was also turning her head from side to side and was just so much better than the day before. We also gave her one of her favorite toys, a little piano, and she made purposeful movements to hit the keys, whereas the day before she didn’t even acknowledge it. Her movements are not the same, there is definitely a disconnect btw her brain and what she wants to do, but it was a big improvement.
Thank you Jesus for giving us something to hold on to, and on Palm Sunday too.
On Monday when we came over from RMH, we went to our room and Reagan wasn’t even there. The nurses were walking her around in her stroller and feeding her. This time when we greeted her, she gave a tiny smile…not her old Reagan smile…a new Reagan smile. It made me sad b/c I love her big smile…then I started thinking about her laugh and missed her all over again.
I asked the nurse if the therapy dog could come and visit Reagan…she didn’t know when the dog came and started asking if we had a dog. We told her all about Bauer and she said, “you know, you can bring your dog if you want.”
She said all we needed proof he was up to date on his shots and proof he had a bath within 24-hours. Done. Within 10 minutes he had a grooming appt, vet appt. and my neighbor Debbie was shuttling him out the door. Within three hours, Bauer was in Reagan’s room and she lit up!
I have so much more to update but I believe it’s time for this post to come to a close. Thank you so much for all the prayers everyone. Reagan has surgery on Wednesday to put a G-tube into her stomach to help with feedings. Rob and I covet your prayers so please pray that Reagan does well in surgery and continues to improve. More updates to come.
You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand
April 16th, 2014 at 11:56 am
You have lifted ME up. Marc and I will continue our multiple daily prayers for all of you. I do talk to Him every night when I wake up and immediately my thoughts turn to you and Reagan. Anything you need, anytime you need it—I am here for you,
April 16th, 2014 at 12:05 pm
Oh Annie Marie …the pictures with Bauer are so awesome!! They made me cry!!! It is so nice to see her pretty smile. I know being in the hospital daily can be draining and discouraging. I use to work in one and dealt with those feelings all the time. But stay strong and keep praying! I will pray too! And keep posting pics of her. Those images of hope are terrific!!!
April 16th, 2014 at 12:14 pm
First, I wanted to say my prayers are with you. My son had open heart surgery in September and my husband discussed how people really don’t know what to say. People don’t understand and sometimes I just wanted to hear, this just sucks!. We joked at one point to write a manual of what should never come out of your mouth to a parent dealing with problems with their child. We heard everything from enjoy your vacation.. To wait your child will be legally dead on bypass… My experience is nothing compared to yours but I just wanted to say that our prayers are with you and this just sucks!
April 16th, 2014 at 1:12 pm
There are no words because I haven’t been in your shoes. You don’t know me but please know, I will be praying for you always. You are an inspiration and an amazing mother. I pray God will continue to bring you hope and peace and I will be sending lots of prayers up for Reagan. God already knows what is to come and whatever that may be, he will be there for strength. God Bless.
April 16th, 2014 at 1:17 pm
You are an amazing person! So thankful for the way God is working in your sweet little one. Your journey is a tough one – my heart aches and aches. My tears fall and all I am able to do is pray for all of you. Grateful God has given you hope and even a few minutes of peace. We should all try to be a blessing to you, but there is no way anyone could not be blessed BY YOU, after reading this.
April 16th, 2014 at 1:18 pm
Thank you do much for the update and sharing with your honesty and vulnerability. Continuing to pray as you walk each day….love to you today, barb
April 16th, 2014 at 1:57 pm
Hey Anne-Marie “Hyphen”. You and your family has been on my heart and mind incessantly. I flood heaven daily for you, and that won’t stop. If there is anything Anne Marie “Space” and I can do for you, we’re always near and available. Always.
Come, Lord Jesus.
April 16th, 2014 at 2:17 pm
Thank you for the update, tears of joy when I saw Reagan’s response to her dog Bauer! God bless her and may God continue to give you and your husband the strength to walk out this journey. Continued prayers and know that I support everything you have shared. Blessings!
April 16th, 2014 at 2:59 pm
Thank you for sharing. I was hoping to get an update and was thrilled by this one. What an absolute gift of hope. I was so happy to see Bauer there with her. It obviously did wonders. Her little smile brought tears to my eyes. Know that my prayers and my heart are with you and your family. HOPE and BELIEVE and PRAY.
April 16th, 2014 at 3:00 pm
So many tears flowing right now! Continuing to pray, asking God to wrap His arms and healing hands around you and your precious little Reagan.
April 16th, 2014 at 4:47 pm
I right now am crying after reading this post. My heart and Sandy’s, like that of so many others, have gone out to you during these extremely difficult days. I know that many of us that love you have felt so helpless, wishing there was some way to assist you, some way to comfort you, some way to remedy the situation. But, this situation has been far beyond the capacity of any human being to remedy. And this has been a deep valley that you and Rob have had to walk with God alone. Thank you for you honest faith. Thank you for your courage. Thank you for your testimony. Thank you for being who you are in Christ. And praise be to God for this incredible gift…a Palm Sunday miracle that has brought new hope. God bless you all. We will continue to pray.
April 16th, 2014 at 5:20 pm
In tears as I sit and read this! I could not be more filled with joy for you guys! Everyday except yesterday I’ve looked up your updates and what a HUGE joy it is to read what I missed! Praising The Lord with you and continuing to pray for you all!
April 16th, 2014 at 6:19 pm
still hoping and praying…with love
April 16th, 2014 at 6:24 pm
Thanks for the update. I understand your frustrations, fears, doubts, anger and the despair, and so does God. Let me also say, He is not offended by all those feelings. He loves us through it all. I am thankful to hear how she is responding and I am praying for the miraculous to happen in her life! New Life Church Of God is praying for Reagan & for your entire family! God Bless!!!
April 16th, 2014 at 6:38 pm
My prayers have not ceased for you and your family. And, I will continue in prayer. You are in my thoughts constantly and many other of my friends are lifting your family up in too. I know I live a little farther away but, would be there quickly if I could be of assistance.
April 16th, 2014 at 8:07 pm
Your family’s story has captivated me. As a friend of a friend posted this update on Facebook, You don’t know me and I don’t know you (only what you have shared here), but I am praying for all of you. It is clear that you and your husband are such loving and caring parents. I appreciate your side bar and am humbled by your honesty with The Lord and with those who read this blog. You are right in that God cares so deeply about each experience, relationship, loss, blessing, emotion, etc. (he created them after all). My only advice and prayer for you is to KEEP GOING the way that you are. Honestly, thoughtfully, prayerfully, and humbly. I got chills when I read of Reagan’s progress on Palm Sunday and the hope The Lord gave you (and myself and any person with a heart who has read this blog). I pray that As you walk this path so keenly aware of how much we need The Lord everyday, every hour, every second and minute, that somehow He will meet you at every step (even the ones that just flat out suck, especially those). While I don’t know all that you are thinking and feeling, I know with certainty that God values ALL of it. Every. Single. One. Keep going…stop when you need to…collapse if you need to. God is big enough for all of it. God bless you and your family and I will be in continued prayer for you guys.
April 17th, 2014 at 2:43 am
So, so grateful for that baby girl’s smile. Praying for Wednesday. Love you guys so much.
April 17th, 2014 at 3:23 am
Thank you for sharing videos and pictures and for vulnerably sharing your heart and struggles so we can come along side you in love and prayers. You all are being carried in my heart.
April 17th, 2014 at 7:54 pm
If you don’t mind me asking, how did this all begin? Illness? I will be praying for you daily. I can’t imagine your hurt.
Isaiah 43: 1-5 ( hope this helps)