A Grateful Heart

A Grateful Heart This page was originally created as my "Hand-Crafted Space for Gifts and Gratitude".

Life hasn't allowed for much crafting right now, so instead I will use it to update our current life journey and our still Grateful Heart.

09/11/2026

Day 33 Update:
Jackson is doing very well. Right now his right arm is his toughest limb to deal with as far as pain and movement. He has his pressure garments for his left arm and left leg and is back to wearing gloves on both hands. These garments and gloves are worn 23 hours a day. He will get some more tailored specific to him after his surgeries are all complete. I dont think I updated that his central line was removed finally and now even his IV. The boy is making progress. We are still in an insurance holding pattern waiting for approval for acute rehab. Keep praying that he gets exactly where he should be going and that we feel peace about whatever that plan is.

We have some insurance things to deal with for Dave's medication tomorrow but this round its the pharmacy with the win...they have a discount card we can use while the insurance figures themselves out again. How do they approve an ALS med for one month then deny it the next. He didnt have ALS in August but then not have ALS in September. Its still here and he still needs the meds.
I will never understand any step that keeps someone from a medication that might slow the progress of these symptoms. The only thing we have is the hope to slow down progression- there is no cure or even treatments to improve losses so how is stopping progression not a priority?
Anyways, thank you CVS for coming through with a solution so there won't be a big delay.

Someone prayed a beautiful prayer for our family today. When praying for Addyson she prayed for how this time would shape her in the future. This is a constant prayer of mine. I pray that God raises her up to be resilient and fiercely understanding and kind as she pursues her own role in healthcare. I pray that as she interacts with families in the future that she uses this experience to better understand whatever they are going through having lived it.
The specific prayer was for her "as her home shattered for a time". It caught my breath for a second and I wanted to resist that but it really is true. God wastes nothing though and I trust this time will build a story in her as well. I cannot wait until we are all under one roof again.

I have spent some more time working recently and I cannot express enough how much I missed it. It has been great to use that part of my mind and my heart again. I have missed everyone so much.

Jacob is grown doing his whole married life thing but I have to update on him too...he got hired by The Town of Dyer for additional help after the storm. He worked through that whole hot miserable week. Brittany is back to school as a para too. I am missing our family dinners but know they will return in time too.

All in due time. Show up and keep stepping forward.

Galatians 6:9: "Let us not grow weary of doing good, for in due season we will reap, if we do not give up."

Throwback Thursday~ this was the best seat in the house. This was at Disney, likely fireworks and likely Addyson is pout...
09/10/2026

Throwback Thursday~ this was the best seat in the house. This was at Disney, likely fireworks and likely Addyson is pouting nearby because Jackson got the good spot.

Finally a therapy dog!! This is Louie.
09/09/2026

Finally a therapy dog!! This is Louie.

Learning how to dress himself again. Once he had clothes on it was tempting to steal him right out the door! We are wait...
09/08/2026

Learning how to dress himself again. Once he had clothes on it was tempting to steal him right out the door!

We are waiting to hear from insurance, then where there are open beds and one more tub room check of his skin and when that all lines up he will head to rehab.

He looks great! He has one arm and one leg left to graft. For now the BTM is keeping his body in check.

Why acute rehab? Even for a very healthy very fit and active 19 year old, burns are no match. He changed out of thise therapy clothes, went to the bathroom and had to lay down under hot blankets because he was freezing and weak. He needs strength for those remaining surgeries and independence afterward.

Thank you God for all the science that has been keeping him going!

Dave is such a worrier! Lol.
09/07/2026

Dave is such a worrier! Lol.

We have progress!Jackson has been able to go down on IV pain meds successfully (necessary step for moving to rehab). He ...
09/07/2026

We have progress!
Jackson has been able to go down on IV pain meds successfully (necessary step for moving to rehab). He has a little way to go but a great stride forward.

He is wearing both compression gloves now that his fingers have healed a bit more. More compression sleeves and leg wraps to come we hear but not there just yet.

His left leg and left arm are only wrapped in 3 spots where his skin is still raw. We can see his calf, thigh and forearm. I have been looking at it all day just in awe of this process and what his body has been through. Im not sure what Im looking at but I think it is all grafted skin taken from his thighs.

He is skinny skinny without his thick bandages. I think this surgical pause to gain weight and gain muscle before finishing his right side sounds like a great plan.

Keep praying he gets approval for acute rehab from insurance and a bed at his preferred location. He picked the location that works most closely with his existing team.
If there's anything right now I get antsy and anxious over it is waiting on this process. Im giving thanks that I dont have to do any of the paperwork and phone calls on it and I trust this team will advocate well to get him where he will have good care.

"Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lo...
09/04/2026

"Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things." Philippeans 4:8

In this season I think the greatest gift we have been given or have chosen to accept is surrender.

I promise you I was the queen of overthinking my entire life. I would make myself sick as a child overthinking the what ifs of going on vacation. As I got older if there wasn't something to be stressed about I would wonder why it was so calm and worry about what was to come.

Now in the midst of very real stress and situations we cannot change, we have found surrender. Im not sure Dave and Addy have joined our calm hospital bubble yet, but Jackson and I have had good conversations that just lead us back to knowing we are not in control and trying to fight against any parts of it will leave us frustrated and unsatisfied.

It has been a real transformation to experience so much "out of our control~ness". I can finally see I never was in control of anything to begin with. Finding out Daves diagnosis of ALS surely put us on this path of beginning to surrender. Anything I could think or imagine about what our future would hold was replaced with a question mark. However, even with that I felt like I had control of the now and could slowly adjust to his losses as they came.

The quickness of our world changing a month ago when Jackson was burned showed me that even our now is not in our control. Our little spot in the world halted, daily schedules, plans, needs, all of it just stopped and changed. Some of it will return as usual at some point, but other things will not.
Choosing to accept surrender to those things allow us to experience peace and have our eyes open to experience joy.

It started by filtering our thoughts. For some reason it is really feeling hard to spend the typically beloved 3 day weekend up here where every day feels the same, but if I stay focused there it will only frustrate us further. Instead Im trying to find something different we can do up here. Trying to get permission to walk with Jackson in a wheelchair or something different. Some other place to find joy.
RMH has cookout type food on the menu. Ill be trying to bring that over for Jackson instead of his usual foods. Will this be the same as being home or out with friends, no, but thats not possible so we focus on what is.

Do we get crabby? Yes. Do we feel sadness and hurt? How could we not? Do I feel the tug to be here and home and inadequate to do either well?Yes. Do I have hard cries grieving what I thought would be? Not often enough, but surrendering it to it being what it is and moving forward is much more freeing than stewing about what we cannot change.

Accepting the gift of giving it to God and not carrying it on our own is where He designed us to live in the first place, we are just finally learning how to live there more consistently.

Prayers:
There has been lots of discussion about moving to acute rehab.
Jackson has to be off of his IV meds (pain control) before moving and Lord help us, insurance has to agree.
I have insurance denial PTSD.
The top choice would be a move to Shirley Ryan. Please pray he can tolerate a ween off meds, insurance agrees and they have a bed on their burn floor.

Its been rumored that Jackson has been going to the gym and shooting hoops. I was there yesterday and caught him in acti...
09/03/2026

Its been rumored that Jackson has been going to the gym and shooting hoops. I was there yesterday and caught him in action. Go Jackson, every step builds the strength for the next ones. He couldnt quite maneuver his right arm to get a shot off so he dunked it instead.

Today was quiet in comparison to surgery or tub days. He did OT and PT and slept. Im home for VA stuff for Dave and 2 dr appts for Addyson. I'll be back up tomorrow morning after my last iron infusion.

Lord give us that strength for the day!

09/03/2026

Jackson had a great morning! He was laughing and having a good time with the nurses. They kept poking their heads in welcoming him back since he has been sleeping for 2 days. They can all get him to smile.
He had the tub room at 230 today. He struggled some this afternoon. It really takes a lot out of him.
We should hear soon if he is going to have more surgeries this admission or not, and the timing for a move to acute rehab.
They got a bad burn admit around dinner time. It was so crazy how much our hearts ached 1) for the person so badly burned and 2) for the nurses we have come to know who formed a huge team of 20 or so and went to work on the man. What a hard job but boy did they move quick and so well together. It really is amazing.
Praying for them and all they saw and their hearts that just want to help and heal people. Praying too for the man to survive all the things we now know a body does trying to heal.

It was extra hard to leave him tonight but praying he gets good sleep.

Jackson has slept most of yesterday and today. When I got worried they said "its a good thing and his pain is under cont...
09/02/2026

Jackson has slept most of yesterday and today. When I got worried they said "its a good thing and his pain is under control".

Since surgery he says "everything hurts everywhere."

Tomorrow he goes to the tub room to get the surgical bandages removed.
They will give us a bit of a plan based on what they see for how many more surgeries he will have this admission. The surgeon said he has more to do but he needs Jackson to gain back weight and muscle before he continues so we may have a surgical pause here soon.

This pix of his face may be a lot for some but I just can't believe the difference. He looked so good! But again theu said this is just part of the road to healing.

This verse was in my morning devotion today, "Let us hold unswervingly to the hope we profess for He who promised is faithful." Hebrews 10:23

Thank you Lord for the road that brought me close to you. I am here waiting hoping for the brighter tomorrow's.

Address

Dyer, IN

Telephone

+17082082803

Website

Alerts

Be the first to know and let us send you an email when A Grateful Heart posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Category