Beauty for Ashes

I came across someone the other day complaining about having vehicle problems and needing prayers because the stress of it is just so bad.

I had to hold my composure to keep from laughing…

Seriously?

The older I get, the more I realize that more people than not are truly in a bubble of their own, lacking perspective and empathy for those who struggle with more serious difficulties than their own.

Now, before you write me off as a cynic, know that I do understand the burden of being without transportation. See, most people in my position – being very medically fragile – don’t have the luxury of owning a wheelchair accessible vehicle. Most people rely on EMS services to transport them to and from medical appointments and otherwise don’t go out. I have been blessed with an amazing father who works incredibly hard to make life easier for me as much as possible. But there are far more serious things in this world than you lacking transportation. Sorry cupcake.

Someone lost their mother this morning. Someone just lost their sibling to drug overdose. I guarantee that several people have died today alone in car accidents across the nation. Someone is hooked up to a chemotherapy infusion, reading a book and praying for healing. A child somewhere is dying from Spinal Muscular Atrophy because their body just isn’t strong enough to keep fighting. Tragedies happen around us every day; yet who among us has actually stopped to see them and offer a shoulder to cry on?

I have SMA type 1. This is the worst kind of SMA one can have. I have had it my whole life. My prognosis was two years or less. I have beat every odd, expiration date, and stereotype thrown my way. Doctors don’t understand. I’m now one of the oldest patients with this disease and the most functioning one they’ve seen. I’ve come through so many battles; through nights where there was no logical reason I should have. I have had my deceased sister read me stories as a child. I’ve seen angels. I’ve visited Heaven. I talk to God, but He talks to me more.

You’d think, “what else can come my way?” Right? I’ve overcome every trial. I’m unstoppable!

How naive I was…

I’ve been very sick over the past year; honestly two years, but the last year has been much worse than the first. I’ve had respiratory MRSA, serious feeding tube complications, was hospitalized for over a month on and off, and had cellulitis multiple times. I also broke my arm. You’d think that’s enough, right? It just keeps coming.

Even after we finally got the feeding tube complications seemingly fixed (buried bumper syndrome is not my friend), I’ve still been having stomach issues: random pain and nausea. I’ve been telling doctors that something isn’t right but they weren’t listening. I finally sat down with a GI specialist last month after I was blown off yet again. “I mean no disrespect, but something is wrong – I know in my heart – and nobody is listening to me. The last time this happened, I got septic and almost died (early this year). If you won’t help me, I will go somewhere else where they will. What will it be?” Next thing I know, I’ve got an IV in, they’re drawing labs for a full blood panel, then doing a CT with IV and stomach contrast. Then we waited. And waited…

They scheduled an appointment with another specialist, but we couldn’t get in for two weeks, which ended up being this past Friday. It was at a different location which was odd, but I didn’t think anything of it. Mom and Dad both came with me to this appointment which doesn’t usually happen, but I was happy nonetheless. I assumed maybe we would talk about my diet since I switched to eating specific foods easily digestible for those with stomach disorders. I figured, what other tests could they want? I had genuinely tried to prepare myself. In my mind, the worst thing they could tell me is that my body doesn’t process food and I can only have formula. This would be devastating, as eating is very enjoyable for me. But, if that was what the worst scenario was, I could handle it.

I wasn’t ready for this…

“You have a mass on your liver”…

“It has to be removed”…

“We don’t think it’s cancerous, but it could be”…

“It could rupture”…

“With your feeding tube it’s harder. We’ll cut here and here”…..

“Surgery is major with your condition and the ventilator”……

“4-6 hour long surgery”…….

“About a week, at least, in the hospital”……..

“Long recovery time”……

“We don’t want to wait too long”…..

“September”……

 

 

What?

 

This isn’t real. It can’t be.
I have SMA. Not a tumor.

I have enough to deal with. I can’t have anything else.

 

I keep thinking I’ll wake up soon and it’ll just be a crazy dream.

 

And yet, this is real.
We’re looking into a different way to remove the mass. Please pray.

 

I don’t understand.

It’s not fair.

I am scared.

 

But I still love the Lord.

I will conquer this mountain just as I have the rest.

 

 

Provide for those who grieve in Zion—
to bestow on them a crown of beauty
instead of ashes,
the oil of joy
instead of mourning,
and a garment of praise
instead of a spirit of despair.
They will be called oaks of righteousness,
a planting of the Lord
for the display of his splendor. – Isaiah 61:3

5 thoughts on “Beauty for Ashes

  1. Amber,
    Thank you for writing this blog. I had no idea. The Lord has already made plans for you and I know you love and trust Him. One day at a time and your prayer warriors and this too shall be behind you. I will bring you and your parents before the Great Physician daily.

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  2. Praying for you Amber, it is crazy how God piles one more apple on the cart that already feels fragile, Asking God for safety as you get surgery and healing, xo

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  3. This is all so hard to wrap my mind around and I can’t imagine how you must feel as you face yet another battle. I know the battle is the Lord’s and that is how you will fight this: with His mighty power! I will continue to pray and ask God to give you the strength and encouragement you’ll need in the days and weeks ahead. I am comforted knowing this hasn’t caught Him by surprise and He’s already in complete control of it all. I will trust Him even when nothing seems to make sense. Praying for Mom & Dad too, as they are preparing to fight through this right by your side! I love you!

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  4. Oh, sweet cousin, how my heart breaks for you…. I wish this life was easier for you, a whole lot easier than what it is. We will continue to pray for you as you fight yet another battle. I will be praying for your Mom and Dad too as I know this weighs heavy on their hearts as well, and you will need them to help face this fight head on. I know as always that the Lord will fight for you in this battle, he already knows all about it and will guide you through this trial. I love you so very much and am so thankful for the blessing you are in my life ❤

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  5. Oh sis….thank you for sharing so badly and honestly. I’ll be praying for you and against any attacks of the evil one! 💕 I’m so sorry this is happening to you girlie…

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