Week 28- A Different Kind of Christmas


I'm sitting here typing on a hotel computer in a Holiday Inn in a small town that most people have heard of. From the outside, I look pretty normal. The boys are sitting in the lobby playing with the few new toys they got for Christmas.

I'm sitting here with all of my thoughts thinking,

How do I put all of this into writing?

And the Lord gives me a real time example.

A woman gets off the elevator with her husband and all their stuff. I feel it immediately. She looks like a grandma. That's not an insult. I'm from the south and we love our grandmas. My Granny has been gone for two years. I still have dreams about her. I don't think a week goes by that I don't think of her.

But I digress.

The woman sees my boys playing and comes over to talk to them. That's what grandmas do. They LOVE children. They know they are a blessing. A gift from God. People call our kids

"The 3 blonde boys."

They've received that nickname at more than one hotel.

I texted Steve,


"Trying not to pass out."

I stop typing. My right hand curls up. Steve walks over and puts his arm around me and, while it looks like a doting spouse, he's holding me up until she walks away.

You wouldn't know that just a hour ago I walked 30 minutes on the treadmill and did 5 minutes of pilates. 

And, if you had seen me on that treadmill this morning, you wouldn't know that we had checked out early from one of our regular locations because too many people had checked in.

Yesterday morning I was by myself and got stuck on the floor for a bit while I had to wait for Steve to come back.

I woke up fine and was in our room. The boys went to play in the game room. I was making breakfast when the people in the next room got up and started moving around and packing to leave. Apparently there were a lot of toxins on them and their stuff. Steve got back and picked me up and held me on the couch while they packed up to leave. Once they left, I could walk again.

Yesterday, even more people checked in. We were going to try to ride it out one more night.

Then, the people below us sprayed bug spray. We were out at the pool when I saw them spraying outside the room below us. I hoped it would be ok.

This, instead, was what happened when we went to our room.

I live my life in an invisible bubble.

I am grateful. The alternative was not looking good. I believe I was likely headed to an ALS diagnosis

This is hard, but I am not discouraged. While I do have set backs, we are seeing an overall upward trajectory.

I got to celebrate Christmas with 3 of my children. I'm alive.

I was able to make them a pancake breakfast and take them to the beach.

I think Christmas will always look different for me.

I don't think I will ever be strong enough to spend Christmas with my entire family at the same time. If I am, it will likely be years.
I don't think I'll be able to play "dirty santa" with my siblings like we do each year since I have to be careful about everything I buy and pay attention to whether it will make me sick.
I don't think I'll ever have an indoor Christmas tree again or be able to unwrap a lot of presents in my house.

But that's ok.
It's a little sad. But it's ok.

I feel like a foreigner. Like I don't quite "fit" anywhere anymore.

Then, I think about Jesus.

Jesus who was born and didn't even have a bed but rather a feeding trough. He was homeless when He was born and, even when others wanted to follow Him as an adult, He cautioned that He didn't even have anywhere to lay His head.

I spent Christmas at a hotel on the beach so I won't pretend it's a one to one correlation. I also happen to be far from perfect.

Regardless, there's something different that I get this year. A lot of things just don't seem as important as they used to.

After all, a Christian is born again to die.
To die to this world.
To die to self.

And there's this peeling away. This dying- that's been happening in me for a few years now. Ironically, now that I'm not physically dying anymore- and I praise Jesus all the more for this- I feel the death a little harder.

There's a song that's been in my head for a couple of days now.

Give me Jesus,
Give me Jesus,
You can have all this world-
Just give me Jesus.

If you aren't familiar with it, you can hear it here.

Phil 1:21-

For me to live is Christ, and to die is gain.

Here are our current prayer requests:

Steve's job- there are several moving pieces here and some of it is dependent on mandates and supreme court decisions. Please be in prayer about this. God knows what is right.

Our living situation- as wonderful as it would be for us to have a home in the middle of nowhere- it just isn't a possibility yet. First, my detox will have to slow down. Right now we can stay in the same hotel room for 2-3 days. We need to be able to do that for a month before we will know that my detox has slowed down enough to get a home. Once that happens, rentals would be ideal initially, but there is a level of complication to this. We have yet to find a subdivision where I'm ok. It seems to be based on level of toxicity. Often a brand new subdivision is worse for me than one that's 30 years old. Regardless, when there are a lot of houses, I am typically not ok. We would need to find a rental in the middle of nowhere which, as you might imagine, is quite difficult. We also need to find an area where I do well in most seasons. Where we are now seems to have some potential, but Spring and Summer will tell us more. I will be honest- the next step overwhelms me tremendously- but I've seen God do more than a few miracles and He knows what we need. We still could be 6-12 months away from the next step. God knows.

I shared this on my social media update- but I've been thinking more and more about getting a service dog. There are many layers to this and it's something we really need wisdom and prayers about. We would want a large dog, something that could help support me if just one leg goes. The tremendous blessing is that it is increasingly rare for both legs to go. We would want something that could help me get out of a bad situation quickly. Right now, if Steve was at the front desk and someone walked up behind me that was affecting me, he would have to excuse himself and come back. If I could have some support and get out of there myself, that could be beneficial. If and this is a big "if"- the dog could be trained to recognize the toxins that make me sick- he might be able to get me out of there before I catch it.
The cons I see- which are big- are the cost, finding someone to train the dog for a very unusual illness, finding a doctor that would write the recommendation for me (I think my current doc would), and, if I get contamination on me that makes me sick and have to take a shower, so would the dog. On top of this, if it is unnecessary in a year, then that would be a waste of time and resources. God knows what I need.

Thank you all for your continued prayers!

In Christ,


If the Lord moves you to give to our journey:

Venmo: Steve-Bullington-80

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