Sunday, December 18, 2016

The Honest Truth

This is about to get real here.
Super honest.

But first - Bodie is doing better-ish. Symptom wise, his nausea is coming and going, but he hasn't thrown up since yesterday morning. His energy is better. Both great things. But we're not making much progress on the rhythm end. A little. But really his heartrate is continuing to stay significantly higher than we want (in EAT), and we seem to be caught between a rock and a hard place - he needs beta blockers to bring his rate down, but beta blockers are causing heart failure and hypoglycemia. We should know more about what the next steps are when the electrophsysiologist comes in tomorrow. Please continue to pray for him (Bodie, not the electrophysiologist - although I suppose he could use your prayers as well, as he attempts to figure out the conundrum that is Bodie).

Ok, now for the honest part.

This journey of life with a medically fragile child is HARD.
After I wrote that last blogpost, I was done. 
More than done. 
I was tired of being here, worried sick for my poor boy and missing my sweet girl.
I am usually pretty good at staying strong and positive. It's sort of my "role" in our family and one I relish and wear well.
But on Friday, I finally cracked.

My friends who I was texting because I couldn't trust myself to talk without crying (and didn't want to cry when Bodie was awake) could see it.
Dusk could see it. 
I'm pretty sure anyone within 10 feet of me could see it. 
I guarantee you the nurses who saw me lying in bed with Bodie all Friday afternoon and crying everytime he fell asleep could see it. 
Friday was just an all around rough day.

I needed a break, to get away, to regroup, to see my girl, and to get myself in a better space to stay positive for my sweet boy. (And, the severely herniated disc in my back really needed me to get in a better space if I wanted to continue to be able to walk after sleeping on a hospital couch for a week.)

So, Dusk came up Saturday and spent the night and the better part of today with Bodie. 
I was able to get away, and spend some much needed time with Sierra. 
It worked out really well.

We had BIG plans, of going out to dinner and getting lots of snuggle time in. 
In reality, we were both too tired to do much of anything but Taco Bell. 
And we did eventually get the snuggle time in, but first we got in a run to urgent care, because my sweet girl has a raging case of tonsillitis. And then we got in a run to CVS to wait for a prescription to be filled. And then we finally got home and got the first dose of meds in her - only to have her throwing up an hour later. 

So, if you're counting, I managed to deal with both kids' vomiting in a 12 hour period - and dad missed them both! I call it the "power of dad." It's a thing.

But I digress. Being home was rejuvenating and I was so glad to be there for my girl when she was sick. Because, at the end of the day, when you're sick, isn't mommy who you always want?

Sierra is doing better now that the antibiotics are onboard. But this morning, she broke down when I wouldn't buy her a water bottle at Target (in my defense, she didn't realize she wanted it until AFTER we had already checked out and the person working behind the counter at the "We're too healthy to continue to offer the really yummy Pizza Hut pizza anymore so now we offer some healthy crap you'd never actually eat" place was taking for-freaking-ever.). 

I knew it wasn't about the water. 
She's a good kid.
But, like me, she is DONE.
She's DONE with her family being separated.
She's DONE with being scared her brother's not coming home (I know it's only been a week that he's been in the hospital, but a lot longer we've been dealing with the heart failure issue).
She's DONE with being jealous at all the attention he's getting and then feeling immediately guilty for feeling jealous.

She's 9 years old, guys.

This is stuff that's hard for us adults to wrap our minds around.

Unlike me, she doesn't have a bunch of heart mom friends she can vent to.  So she sat in my lap and she vented to me. And she cried and said she couldn't be brave and strong anymore. And we talked about how hard it is to be brave and strong. And about how we don't know what God is doing here, but that He is doing SOMETHING. And that it's our job to let His light shine through our lives. That it's ok to be afraid and it's ok to be angry and it's ok to be frustrated.  But that the Bible has so so so many verses telling us not to worry. And how maybe someday God is going to use her to minister to other heart siblings, just like he has used mommy to minister to other heart parents. And we prayed. 

And I realized that me coming home wasn't just about me, but it was about her and that moment. Because that moment so needed to happen. And I was so grateful God had orchestrated that moment in that busy Target parking lot.

And these moments - where the kids were able to see each other. 
(Yesterday, when Dusk and Sierra came to the hospital and Bodie and I saw them from his window. You can see them standing on the street below. It was a total day-maker moment for Bodie.)
(And this afternoon, when Sierra and I returned and Dusk and Bodie saw us (you can see their heads in the window between the trees on the second floor).)

They miss each other so much and were over the moon to be able to see one another.

I had two amazing heart mom friends stop by the hospital this afternoon, and sit with me a bit and love on me and give me sweet gifts for the kids and me. I was totally humbled and overjoyed by their presence. 
So, tonight, my spirit is replenished and I'm think I'm ready for the week ahead and whatever it may bring. 
I hope.

So tonight, please continue praying for our family. Pray for Bodie, for healing, for his heart rhythms to get under control so that we can GO HOME. Pray for Dusk and I, for continued strength and positive energy. And pray for Sierra, for her to continue to rebound physically, and for peace and security amidst a pretty tumultuous time. 


  1. Oh Amy...I have been in that same spot so many times when Hope was waiting for her heart and after she received it as well. Hospital life and being away from your other little ones is so hard. We settled into a routine where Jerry (my better half) came on Tuesday and stayed with Hope (he took off one day a week for over a year). I would come home and see the boys and get caught up with their school stuff. We would trade places Wednesday night and then he would come back on Friday night for the weekend. It was hard on our relationship, but every once in a while we would have family that would come and stay the night with Hope and we would have a date night or spend time together with the boys. It made life a little easier to have a schedule and know that I would be able to see the boys. Don't get me wrong...I still broke down and hospital life was still really hard and at times very depressing, but it went faster than I thought it would. Bodie and your family are in my prayers every day. I know a new heart is scary, but I can tell you that it has made a world of difference with Hope. She had a terrible time right after her transplant, but since then she has thrived like I have never seen and never thought possible. She eats like a champ, runs, and plays like her cousins. She has grown over 6 inches and has gained a bunch of weight. She has some issues from her stroke, but amazes me every single day. Big HUGS and many prayers <3

  2. Oh Wow, what a message. Those of us who have never had such issues have no earthly idea what you and your family are going through. Thank you so much for keeping us updated and pouring out your feelings to those who follow you on your blog. How else would we all know what you are dealing with. This is such an emotional roller coaster for all of you. So thankful your sweet girl got to be with her momma when she needed you most. Prayers as you start another week dealing with whatever comes your way. Please remember there are those of us out here who you don't even know and never will, who are praying for your precious boy. I started following you by way of Hope For Emma's Heart about 3 years ago, maybe even longer, and I have kept up with you. I have watched your kids grow through your blog. They are so precious and you are such a wonderful family. Keep us all informed so the prayers can keep coming for exactly what you need.

  3. Hang in there! Hugs from CO! You don't know me, but I've started following your blog through Owen Simmons. My thoughts are with Bodie, your family and his medical team. I hope that he continues to improve and you are able to still find joy in Christmas hopefully at home. Fingers crossed. Happy Holidays!