A Medical Mama’s Tips, Tricks and Tales

A week in the hospital battling pneumonia and my momma heart can assure you that when your kid, special needs or not, is gasping for air, you are too.

My Rynnie gets recurrent pneumonia because of low muscle tone; it’s a stupid sequelae of the genetic disorder she was born with (Trisomy 18). She was on oxygen for year 1 and most of year 2 of life. And, to be honest, we have blocked those days out of our mind, and somehow forgot how annoying the puffing of the oxygen concentrator was. Or, how I spent my days trying not to trip over oxygen tubing running around the house so my kid could breathe. Or, how I have a special diaper bag that is outfitted to hold a small oxygen tank – scuba tank diaper bag? Or, what a blessing it was to have a milk man oxygen delivery guy who would come once weekly with infinity tanks to refill the little lungs of my tiny baby.

This week, Rynnie suddenly needed oxygen again to help her breathe and even with that oxygen she looked like me post out of shape mom run. Eyes wondering around the room awaiting someone to bring more air, pursed lips hoping for easier breaths, and full body tugging, gasping, aching for more oxygen.

During our hospital stay we saw the ER team, the hospitalist team, the pulmonologist team, and the infectious disease team with brief visits from the dietitian, case management and physical therapy teams. Rynnie is a puzzle in a million ways and a miracle in even more ways.

My favorite part of the visit was when one of the Pulmonology docs came in and said, “wow, you guys must be doing a great job at home, I can’t believe I don’t know you.” (Insert shoulder wipe, we are! Because we have the bombbbbb nursing team! And because we do have a great pediatrician team willing to treat her early to avoid severe pneumonia!)

Anywho, these days, don’t we all feel like we are gasping for air a bit like Rynnie… a little exhausted, moderately annoyed by how life keeps throwing curve balls, and desperate for relief. …our current political climate is… horrendous and heartbreaking and using the name of Jesus in ways that make me wanna barf, and our work hours momming, working a day job, and paying the bills are never enough. Cold and flu season is an atrocity I can’t fight, no matter how much Lysol I spray or hand sanitizer my kids lather in. Social media keeps lying to us telling us everyone else’s go is a million times easier (ok and maybe some people do have it easier than raising a little miracle girl with 100 medical needs), and the comparison math just never adds up.

I don’t have any answers other than the deepest truth that heals my weary heart:

“Come to me all who are weary and heavy laden, I will give you rest.”

“Take my yoke upon you and learn from me, I am gentle and humble in heart.”

Jesus.

Matthew 11:28-29