Anyone who wants a glimpse into the inner workings of my life can start their research with what I don’t watch/stream:
You will not find me watching This Is Us = Everyone cries.
I did not/will not watch Parenthood = Autism stress
Probably going to stay away from Steel Magnolias = Death post-transplant
Haven’t been able to bring myself to watch The Good Doctor = Autism stress
And my sobs tend to ruin any gathering that involves watching How To Train A Dragon 2 = Daddy Dies
On the other hand, one can also tell a lot about what is going on in my life by what I AM watching /streaming:
Sweet Home Alabama = Homesick
The Good Place = Need to Laugh
Carpool Karaoke clips = Need to Laugh
Star Trek = Jeremy picked.
Hope Floats = Need to Cry.
Speechless = Need to feel understood.
And when life just feels discombobulated and I don’t know just what I need, I find myself turning to Netflix and watching Hart of Dixie. (NOT a recommendation.)
Last night I put the kids to bed and turned on my laptop. As soon as I opened Netflix and realized I was looking for the aforementioned familiar series, I stopped and tried to think of what I was feeling and what was needed to deal with my needs in a healthy way. (There is a counselor somewhere squealing and feeling confident that their work with me was a success!!)
Things have been cruising along here in our temporary home away from home. Little is feeling better all the time. She has gained four pounds and hasn’t gotten sick in almost three weeks. She is building up strength and endurance at physical therapy and that leads to her sleeping WELL at night! Her appetite is back as is her affection for all things cheese and loathing for showers. This is where the muddling of my mind comes in …
It is almost as if nothing happened, but something did. She seems just like she was last year, but she has a huge scar down her chest and another 22-25 on her neck, arms, and legs telling a different story. She looks GREAT but my phone alarm shakes a pill bottle at me twice a day and she MUST have her medicine. We aren’t in the hospital but we aren’t living at home. She seems to have so much energy, but we’ve had to cancel three visits from friends (and Daddy) because they are sick and her immune system is being suppressed. After being on high-alert for months and uber-focused on a defined negative trajectory, it is weird to have such a blatant barrage of daily dichotomies. I don’t think I am responding as well I could. I have eaten an unhealthy number of ice cream sandwiches.
Tonight I’ve cleaned the chocolate off my fingers and I’m going to put off escaping to Bluebell, AL to take inventory of what is happening and what I need to lay at the Lord’s feet.
We have been going to the hospital on three days of the week for two clinic visits and two physical therapy appointments. On clinic days we have to get there before 8:00 AM so that Little can have her blood drawn for testing. While the technicians check the levels of her medication to make sure they are therapeutic, we head upstairs for an EKG and an Echocardiogram to check “Dwayne’s” function and look for any signs of rejection. To date everything reads well. At physical therapy appointments Little does weight training for strengthening and rides a huge tricycle all over the hospital to build endurance. The improvement is measurable and our therapist Emily, a native from Atlanta, has submitted a letter requesting a local charity consider Little for a tricycle to take home!! **Praying for acceptance of “Dwayne” and a tricycle for Little!! What a joy it would be for her to join us on rides!
While function may appear strong, the doctor’s also need to see “Dwayne” up close and check for any rejection at a cellular level. Little has her first post-transplant heart catheterization on Monday at 3:30 PM. For this procedure Little will be put to sleep and a catheter will be inserted in her groin and “threaded” up to the right side of her heart, where it will be used to test the pressure there AND take five small biopsies for testing. It should take an hour and a half and she’ll go home a few hours later. I haven’t been too anxious about it, but find myself beginning to wonder how I will respond in the moment. My emotions keep popping up and surprising me and I am not sure if watching her be wheeled away will freak me out or not. And Bubba’s going to be there too, bless his heart. The unknowns of it all make me pause – there are definitely easier stories to stream online! **Praying for a calm spirit during the cath, endurance for Little since she can’t eat all day, and patience for Bubba as he has to sit and wait throughout the procedure.
Homeschooling for Little will vamp up this week too. I have been including her throughout the day with what Bubba and I are doing, but the school has now gotten me the information I need for better direction. The administration’s expectations are low which gives me freedom to do what we can with the knowledge that they will make up the difference when she returns to the classroom in November. Their low expectations also bump up against my competitive and sinful nature and make me want to wow them with my homeschooling prowess. I must chill. This isn’t about me. **Praying I will challenge Little without exhausting her and that school will be fun but purposeful.
Having Bubba here has been wonderful and stressful. It seems that all the things the Lord spent months teaching me while I was powerless and on my knees are being tested in the person of my 13-year-old son. He’s like a pop quiz! School is going well and I actually LOVE that part of our day. Having him with me 24/7 is allowing me to get to know different sides of him; reminding me of so much I like about him and pushing me to my knees as I trust the Lord to complete the work He has begun. I never saw my life including homeschool and I don’t know how the Lord plans to use this year in the long term, but I am trusting that our conversations will be life-giving and the curriculum we’re using will shape his worldview. I am ** praying he will look back on this year with fondness and not just remember how much he missed his friends. I am happy he has peers to miss and thrilled to see his need for social interaction. He has a birthday party coming up and I am ** praying that everyone will be able to attend.
Then there’s me! Being willing to slow down at this time has been a challenge; it is hard to acknowledge that reading by the pool with Little is what I am called to for now and that it’s good. It is temporary and so I am trying to maximize every minute. I no longer have a job when I return to FoCo and I am working on the prep for what seems to be God’s plan for provision. Colorado offers an accelerated course for a parent to become a Certified Nurses Assistant (CNA) and will pay that parent to care for their child with special needs. The explanation is long and pretty amazing and I am planning to go to class in October! There are 8 days of class, two clinical days, and a state exam! I will be able to work taking care of Little, but will also be certified and able to work outside our home if that need arises. **Praying for all of the details to come together and for my brain to work on command.
Thinking back over what I have written, it strikes me that I turn from the story of my life to get lost in the stories of others. Truth is, when I take the time to reflect on my own story, I see His glory and grace revealed and the depth and beauty of His unfailing love; I laugh, I cry, I feel understood. OF COURSE Steven Curtis Chapman summed it up perfectly in a song!!! (Click Link to hear or you can just read through.)
Glorious Unfolding
Lay your head down tonight
Take a rest from the fight
Don’t try to figure it out
Just listen to what I’m whispering to your heart
‘Cause I know this is not
Anything like you thought
The story of your life was gonna be
And it feels like the end has started closing in on you
But it’s just not true
There’s so much of the story that’s still yet to unfoldAnd this is going to be a glorious unfolding
Just you wait and see and you will be amazed
You’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfoldingGod’s plan from the start
For this world and your heart
Has been to show His glory and His grace
Forever revealing the depth and the beauty of
His unfailing love
And the story has only begunWe were made to run though fields of forever
Singing songs to our Savior and King
So let us remember this life we’re living
Is just the beginning of the beginning.And this is going to be a glorious unfolding
Just you wait and see and you will be amazed
You’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfolding.
thebluehutch.com 
After what you and Jeremy have been through, this next will be a piece of cake. You CAN do the CNA thing and I KNOW ,you can handle this.God has not brought you this far to fail or give up now.If Little can handle it,You can handle it as well.God has been and will continue to bless.You all are in my prayers always.
I love hearing your heart and knowing how to pray. We love you all dearly and we’re praying for you.
Thanks for update-have wondered how things are going.Thankful they’re going well. You’re already a CNA! Will pray re cath.
Praying for the **details. So thankful for you!
Becky, will pray for Little during the cath tomorrow. Will also pray for you and Bubba as well.
Love catching up! It helps to know how to pray and it reminds me to pray. Love you all…
So good to hear an update on the three of you! Love and prayers.
I love to read the updates, friend. So thankful for all God has done. I do the work of a CNA while I’m in nursing school. Who knows? Maybe down the road God will drop you back in school like He did for me! 😊. Never stop learning, right? Praying for our Father to fill all the empty spaces with more of His glorious self!!
Your last paragraph before the song lyrics helped me feel so good for and about you, my friend!
You’re awesome!
if you are anything like me, and i see glimmers in certain areas, (you are much more organized for sure) your emotions may not fully catch up with you until you get home. you have been through a major traumatic event. you can tell yourself she is doing well., but in some ways, you are also waiting for another shoe to drop. it is stressful. yes, GOD is good and sovereign. just remember, you aren’t a robot. this is not an easy journey. give yourself a chance to recover just as the is recovering. i will pray for you as i pray for her. i hope you have close friends who are caring for you …and i hope you are allowing them to do it:)
It is so good to hear about your life right now! Sometimes I think the “afterwards “ part of things is sometimes more of a challenge as the urgency and life and death matters change to a more routine kind of feel. And maybe you feel like you are going back to a somewhat more “normal” type life (is there a such thing?) and “should”be able to handle this but in reality it is just as challenging and hard, just in a different way. I love the verse “Jesus Christ is the same yesterday and today and forever “. The same God who was with you and helped you and did the miraculous a few weeks ago has not scaled back but is still with you and helps you and holds you in the same miraculous way now too. You don’t have to just “handle” all this now since it “should” be more “normal” but rest in His strength for you. The same great God with great grace will be all the same for you every single day. I know you know that : ) but sometimes we just need reminding. I will be praying for you!
What an encouragement, Stacey. And it means SO MUCH coming from you … who is living what you are saying. Thank you for sharing this with me.