Detours and Blessings: Finding Hope When Life Doesn’t Go Your Way

By Dawn Graczyk, Sunshine Mom

During our Orlando trip, I intentionally scheduled a few rest days. But one didn’t turn out quite like I’d planned. 

At 4am that morning, Anneliese woke me to tell me Marissa G-tube (feeding tube) fell out.  I was certain that what Anneliese meant was that the extension tubing was no longer attached. It would be an easy fix and back to bed.  

But it turned out the entire tube had come out. I picked it up and tried to reinsert it.  I tried several angles.  It would not go in.  

A Trip to the Emergency Room

I decided to  take her to the emergency room where they would slide it right back in. Then we would return to the resort and I would have to beg the girls to take a day off from the parks and rest.  Easy peasy.

I loaded Marissa up and we headed to the nearest emergency room. We were seen quickly and began the least stressful hospital visit we’ve ever had. However, the doctor could not get even the smallest of tubing inserted. 

She started to speak of calling the pediatric surgery team, which led to extreme anxiety in Marissa.

“I believe it’s closed up already.” she said.  I am going to call the pediatric surgery team and place an IV.  We are a small emergency room; our surgeons are at the main hospital.  We will need to transfer you by ambulance.”

Surgery is no Vacation

Never have I had such a pleasant experience in a hospital. From the first contact with staff, until the ambulance arrived I was treated as a team member; an equal; someone to be trusted and listened to.  The doctor started the IV herself (what?!) and was in constant contact. For the first time a doctor said, “I don’t know much about Friedreich ataxia.  Please teach me so I can best care for your daughter.”  

As we were leaving, I laughingly said to Marissa, “I hope they have coffee there.”  

The doctor said, “Oh.  We have coffee.  How do you like your coffee?  I’ll get you some.”  THE DOCTOR BROUGHT ME COFFEE. 

Aside from sadness, I am gripped by wonder.  Had I not been there, it would be nearly impossible for me to conceive of mothers being so calm in such situations.  I had a rough moment as they wheeled her away, but no panic.  

Certainly God had a hand in this, just as He has in the entire trip. Thousands of moms make these decisions, face these procedures, kiss their children goodbye, and hand them over to perfect strangers. It boggles my mind. How do we do this? I have no answer.  

The doctor told us, “Marissa is quite complex.  I want you to understand there is risk.  I am going to do all I can to avoid ventilation, but it is quite possible she will need respiratory support.  I have several plans should our situation change. I anticipate she will do well. The surgeon and I have discussed this thoroughly.”

I could only thank her.  I was aware of the risks.  The risk of respiratory complications hangs above us like an axe ready to drop.  Every cold, every aspiration, everytime something is “off,” I worry about her lungs.  Pneumonia is a constant and sneaky threat.  By the time we catch it, it could be too late.  

I called my friend Heather and asked her to pick up Anneliese as soon as she could.  I grabbed a smoothie and coffee, intent to return to pre/post op and wait for Marissa.  When I realized I was hopelessly lost, it struck me. 

Certainly God had a hand in this, just as He has in the entire trip.

We are having surgery in a hospital at least 1,000 miles from home, with doctors and nurses I only met an hour ago. Serendipitously, my phone rang with the nurse calling to ask me to come back. When I told her I was lost, she came and found me.  

When I returned, the surgeon was waiting.  He handed me a set of pictures and said, “This was a bit more complicated than I expected. I had to do a complete G-tube placement surgery.  The old tract was completely closed.  Did she complain of any pain at all before the tube fell out?”

“Yes … but it was so nondescript, and we’d been traveling.  I just didn’t think anything of it.”

“The tube is not in her stomach,” he said.

“And I’ve been putting 1200mL of fluids into the wrong space,” I completed.

“Yes,” he answered, “but it looks great now.  Surgery went well.  I need you to follow up with me via telehealth. I wish you safe travels.”

The Kindness of Two Strangers

Marissa began to stir, which meant it was time to move again.  She was wheeled back to her room in pre-op.  Her first words to me were, “Did Stephen King call yet?”  and “I want Panera cheese flatbread.”  And then she drifted in and out. 

During our stay at the hospital, I shared our story with a woman and later she found me and shoved an envelope in my lap and said, “Do not tell anyone. Use this for gas or something fun.”  

Inside the envelope, I found five $20 bills.

It wasn’t long before another person who’d heard our story also placed something in my hand. 

“Don’t tell anyone,” she instructed. “I found some extra cash lying in my pocket.  I hope you see everything your daughter wishes to see.  I hope she meets Stephen King.  I pray all your wishes come true.”

The crisp clean bills lie neatly in my open hand.  I stared at them incredulously.  I counted the twenty dollar bills as I unfolded them, “1, 2, 3, 4, 5 …”

I was holding $200 in my lap, given by two women who hadn’t any idea I existed when they woke up that morning, and most likely would never see me again. 

God’s Provision Reminds Us of His Presence

As I contemplated these ladies’ kindness, I was overwhelmed by God’s provision toward me. Through so many people, especially the many, many generous donors who have given through Spreading Sunshine, Marissa, Anneliese, and I have had the chance to see the US and make memories we will cherish long after we are no longer together. 

This trip is possible because of the kindness of so many strangers, and in that brief contact, God used these two particular people to remind me of His constant presence and provision.  

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