There's Not Place I'll Go, You've Not Already Stood

Lauren Daigle on shuffle and replay…I feel like that’s all I’ve listened to the last few months. It’s on in my van, in my office, even my running playlists have been replaced by her soul touching lyrics. Not typical running songs maybe, but I feel closer to God when I run than so many other times. Somehow, her words calm the anxiety, and help center my eyes back to God, and putting all trust in Him.

Effie has a doctor’s appointment tomorrow morning…last night, she wanted me to snuggle in her bed, and I happily obliged. I went to bed earlier than usual, and slept well except that I dreamed for what seemed like all night…it was ALL about this appointment tomorrow. Sadly, I think she feels my anxiety, the angst in my soul worrying about what these x-rays will show. Last visit, we were so happy to hear that her curve actually measured less - kudos to Effie for being an avid brace wearer and such a strong little girl. This time, I feel like she’s grown a bit more, and with growth comes more risk of that scoliosis curvature increasing. What if it does increase, and surgery comes up as a bigger possibility? What if when she does have surgery, she has to have rods? There’s a newer type of surgery that is called tethering…supposed to be less invasive, and if we stay steady like’s she’s done, that one sounds like it could a possibility instead…and of course we would love to avoid surgery all together, although that’s not likely with her situation.

She knew I was worried this morning, and although she’s a little worried, she was telling me that it would be fine. “I’m wearing my brace. I’m working out and running…it’s going to be better. I’ll be fine.”, she says with all the certainty that I wish I had.

One of Lauren Daigle’s songs, “Everything”, in the very first verse says this:

“Even the sparrow has a place to lay it’s head, so why would I let worries steal my breath?”

That gets me EVERY.SINGLE.TIME. If something as tiny as a wild sparrow has a place to sleep in this massive world, and that God made sure that tiny bird was taken care of…how could I let worry take my breath away?

Worry and some anxiety gets me even when I don’t want it to…it just does. Even when I know better.

This year, Effie made the Middle School Cross Country team…something she’s been dreaming of for over a year! Watching her run this season has been such a blessing. So many things in her life she has to work so hard at, and even though running and training requires work, she loves it so much, and the willingness to work at it and the ease at which it comes for her has been amazing to watch unfold. She has consistently been one of her team’s top runners - making friends with her older teammates, and seeming to fit it so well. The team aspect as a whole has been so comforting.

My dread for worsening of her spine curvature isn’t surgery really, although I would love for her not to go through it, but rather I know that if and when she has to do it, that it will sideline her for a while from one of the only things that has come so naturally for her…she loves it, and I don’t want her to ever lose it.

When she runs, it is without a brace, and that time that she’s running and working out counts just like she was wearing her brace, so those 22 hours she’s supposed to be in it, gets cut down when she’s active. As much as I would’ve loved for her to avoid dealing with any of this, I have come to believe that all of this is a blessing to her. She knows that in order to have a chance at avoiding major surgery, that she has to stay active…keep her core strong. She knows that not wearing her brace isn’t a choice that she can make. She knows that running has helped her, and she can’t just stop. She loves it, and the people she runs with…in Columbus and on her team…they seem to love her too. I’m sure some of them don’t know her story, but many of them do, and I think they admire her for it. I know I do.

I don’t know why I write this tonight, except to tell you where she is…and to ask you to say a prayer for her tonight. If you want to throw one in for a worrying mama, I won’t argue with you for that either. I know my anxiety about this if for naught…God has this under control. Lauren Daigle has another song called “Trust in You”…my favorite words in that song…

“There''s not a place I’ll go, you’ve not already stood.” God already knows what tomorrows x-rays will show, and for whatever that is, I know we will trust in His plan…but man, the waiting is so tough.

Faith….

It isn’t a feeling. It’s a choice to trust God even when the road ahead seems uncertain. (Davewillis.org)

He knew.....

13 years ago, while pregnant with Carson, I was placed on bedrest and ended up sitting out of midwifery school at Emory for a couple of semesters until I could return after the birth.  When I returned, I had to join a different group of women and be part of their graduating class.  I was nervous...never been too good with change...but this week one of those dear friends helped alleviate the worry of the kids missing out on trick-or-treating.  She so graciously opened up her home and added two more pieces of chaos to her sweet family while we attended Effie's neurosurgeon appointment and MRI.  Everyone got to trick-or-treat and had a blast.  I was discouraged all those years ago, and so very worried about joining a new group...I didn't know, but He knew.

Right after I found out about Effie's scoliosis, the very next morning just after 8am, I was calling to get her in to a pediatric orthopedic physician as soon as possible.  First hospital system I called was one that had been recommended...big system.  The lady that answered the phone was nice, but seemed preoccupied and even after, through a cracking voice, my telling her about our new scoliosis adventure, she couldn't remember what we were coming for just a couple of minutes later.  I know that sounds trivial, but I needed it to matter to her because it very much mattered to me at that moment.  She went on to have issues getting our insurance information added and it took a while to get an appointment...it would be a couple of weeks.  I made the appointment, but that wouldn't work for me, because, you see...I have zero patience and knew I wanted an appointment for Effie sooner than two weeks.  I called the next group, and this lady was so sweet and seemed more concerned in helping me get in as soon as possible.  She could get us in with a doctor the following Tuesday...yes, that's only five days away!  I scheduled it, then poured over the physician's background...he was young...did he have enough experience?  I was so nervous about us picking the "right one".  We saw him on the 17th and he spent so much time with us and was concerned when he entered our room. He has since had to tell me Effie's MRI was abnormal and listen to Effie cry in the background and listen to me try to keep it together when he told me she would need surgery urgently.   He has texted me to make sure we made it home, and is making room on his schedule to be in the operating room during her surgery.  When I made the appointment, I didn't know if I picked the right physician...but He knew.

Things that we fail to understand, He understands and He already knows.  I have to believe that God has a plan for all of this and there is purpose in it.  

So many people are asking questions, and I am so appreciative of every text, every message, and the questions certainly do not bother me, but I found a website that details what we have going on right now.  For now, we will have surgery for the Chiari and the syrinx, then watch and address the scoliosis after her recovery.  This probably contributed to, if not the complete cause of the scoliosis, but repairing the Chiari is most important right now.  So happy to report the brain MRI didn't reveal any hydrocephalus and just confirmed what we already knew otherwise.

Conquerchiari.org  - - Go to "Overview" under "What is Chiari Malformation?"  It is a great explanation.  She has a Chiari Malformation type 1 with the presence of a very large syrinx.  The doctors and nurse practitioner seem amazed that Effie isn't symptomatic at all.  For that we are so very thankful, as many of the symptoms that appear due to spinal cord compression can last forever.  They are trying to get to the repair before she is symptomatic.  We are also so very thankful for a pediatrician that I love so much, that even though she didn't have to, took the time to run her fingers down Cullen and Effie's spine simply because they wanted to be like their big brother.  She could have very easily reminded them it wasn't time for their screening and not do it, but she did.  She is a woman of God, and she may not have thought twice about it that day, but again, I bet He knew.

I think we are all better now that we have a plan...it's been three weeks to the day since we had that initial diagnosis of scoliosis...now just over a week after Chiari diagnosis, we will turn this girl over to a team of doctors and pray fiercely for steady hands.

Effie always has the sweetest faith and questions or statements about God...tonight almost home, she asked me...

Effie: "Mama, you know what would be really cool?"

Me: "What sweetie?"

Effie: "If during surgery, I could go up to Heaven, look around and then come back"

Me (fighting back tears): "Effie, I'd rather you not"

Effie: "But just go and then come back"

I. can't. even.  What do you say to that?  How do you respond?  I could barely speak, so I just squeezed her hand.  

Brain surgery...who ever thinks this is where they'll be.  She is scheduled for November 6th.  It's soon.  Please join us in constant prayer for the physicians, nurses, anesthesia, for Effie, for Carson and Cullen because they are worried too, for me and for Matt. God knew what a special girl He created...I know she has such a purpose in this life... I can't wait to watch her recover from this and continue her walk of faith in this world.  I don't know what the purpose of all of this is, but I bet He does.