Being and Trusting – another guest post by Greg

The snotty nose that is so common to kids is common to our home as well. This past week N has had one. Nothing impressive just snotty. This kid has battled so much including RSV and influenza this winter we’ve come to recognize him as strong despite his frailties. But the frailties are there. And real. His airway that is small and floppy is a constant reality at this point. It may not be an issue all time time but it is a weakness. And this past Friday a new bug attacked that weak point. He woke up that morning and felt warm. And someone had turned on the faucet of thick junk dripping from his nose. He needed a little Tylenol and a little extra TLC that day but did pretty well. Then that night his little airway was overwhelmed at times. His baseline stridor was amplified. How could we sleep? He would struggle with big chunks of mucus. We suctioned him but it really didn’t help too much. The decision for an ER evaluation quickly turned into an ambulance ride when he briefly stopped breathing a couple of times. Kathy had to stay with M so there was no way that I could manage his airway with him in the backseat and me driving.

The paramedics were great. The ER staff was even better. The nurse suctioned him so well and their equipment was far superior to ours so he did much better soon after our arrival. They gave him steroids to reduce the swelling his airway and this helped too. The bad news is his temp had spiked to 102.6 and the doctor wanted a chest X ray. Soon we had a diagnosis of pneumonia as well. I made the best of the situation and watched a great basketball playoff game with N snuggled into my chest. I think any parent knows the best part about having a sick child is they love to sleep on you.

By 1 or 2 am both the ER doctor and I were feeling better about how N looked. She wanted to keep an eye for a bit longer so we came up with a plan to camp out til 6 am. They gave me a blanket, pillow, and even a cup of cold water. They lined the ER gurney’s sides with pads used for patients that are seizing so little N wouldn’t accidentally fall out. It was great in its own way. I was sleeping snuggled up next to one of the sweetest babes to ever grace this planet and he was hooked to a monitor so everyone would know he was all right. I got to be with my boy and be a small part of his healing.

Fast forward to Saturday night. The stridor picked up again. Fortunately they gave N another dose of the steroid to take at home the next night if needed. I really wondered if we were gonna be back in the ER. But after an hour or two the steroids kicked in and he was breathing better again. Not his norm but better than earlier that evening. Then I had a choice. I considered bringing him to bed with Kathy and I. Another option was for us to take shifts and stay up with him. But I knew the decision was to trust. I could have chosen to be with him as I had the night before. There is comfort in that and beauty. But one of my lifetime struggles is to live inside my head… analyzing the best and the safest way- even when I do take risks. Last night I needed to trust. He was not bad enough to go to the ER and he had been given the right medicine. I put him in his crib and prayed. I prayed for him and his healing, I prayed that God would let us know if we needed to get up for him or to take him back to the ER. I told him I loved him and kissed him good night. Then I took the monitor next door to our room and went to bed. I’ve heard it said that by sleeping we are trusting God. I am sure you can sleep without doing that but last night my sleep was trust. I chose to believe that God who is over all would take care of my boy whom I cherish.

Many of these thoughts came together for me this morning during worship at church. We sang Oceans which says:

“And I will call upon Your name And keep my eyes above the waves When oceans rise My soul will rest in Your embrace For I am Yours and You are mine”

These waters are way too deep and scary for Kathy and I. And just as I loved the embraces N and I have had this weekend as his sick body snuggles close to mine I can rest in the embrace of my Savior who is and always will be there for me. Even when I can’t feel it.

My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!

Also be sure to check out my list of Favorite Books on Disability!

#ER #Greg #hospital #illness

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