A Medical Mama’s Tips, Tricks and Tales

Rynnie’s Story

A mama never wants to hear the worst, but a medical mama surely never does.  She knows too much and not enough all at once.  

In November 2021 our world was shaken when I was opening labs in my inbox, just to stumble upon my own prenatal testing.  Like most moms, we did the genetic testing for gender and for reassurance because our OBGYN recommended.  I didn’t think much about it.  I had a 3 minute lecture on Trisomy 18 in PA school and I was 32; no genetic disorders in my family history, and no known risks other than 2 prior miscarriages.  I opened the labs and saw the: high risk for Edward’s Syndrome, and immediately opened every medical journal I could find, and Dr. Google of course. 

I knew it was a real positive.  Something, maybe the Lord, told me so.  

I wept.  We live close to a Catholic monastery and while I am not Catholic, it felt good to go somewhere quiet and weep.  And I did. I wept a million tears.  Looking back, there were so many gutteral ugly tears that day.  And, it would be the start of many.  I would learn the word Lament.  Lament is crying out to the Good God who is in Control, crying, wrestling with, and asking, how in the world God can this happen, and yet, You are in Control! So have the glory God.  

Rynnie’s ultrasounds were the most doom and gloomy ridiculousness, week by week.  Why didn’t I say no to more ultrasounds?  I wanted to meet her alive so bad; her placenta didn’t have great blood supply, and I needed her to breathe.  

We chose hospice care with all non-invasive supports (feeding tube, external ventilation) and we were open to surgeries if she needed one.  She was born 4 tiny pounds via c-section and the most beautiful folded in half breech baby you will ever meet.  

We named her Rynnie Joy.  Because there is Joy even in sadness.  And, perfect Joy, running to Jesus is to come for all of us.  

Rynnie is still alive.  Usually, she is actually thriving in her own special way.  This winter has been incredibly hard, full of pneumonia and Flu and RSV… viruses the “rest of us” can kick, while some of our kids with Trisomies get knocked down hard by. 

Rynnie is learning to use a gait trainer, an eye gaze (which, she’s successfully made say mommy), and she is home schooled via our local school district two days a week. She has physical, speech, and occupational therapy and she works harder than you or I would ever dream.  She’s a fighter. 

She is both a little sister and a big sister, and truly great at both.  When she’s been in the hospital, even our 2 year old feels the lack; there is a piece of us missing when our Rynnie JOY is missing.  My other kids, heck, even the dog are obsessed with this sweet little angel.  

We still weep sometimes.  “Normal” life is gone.  And, a miraculous life is the one we live… One filled with medical equipment, one filled with praying for easy breathing, one with too many hospital stays.. one where Heaven feels way too close, and way too far away.   One where ICU doctors and staff know us by name. One where our front door should say, “Welcome to Rynnie’s therapy unit.”  

We see God providing.  Just when we feel the world spinning out of control, Rynnie gives us her famous, giant, toothless smile or her bubble-filled laugh. And, when she does, the world is a better place.  There is a little girl with perfect innocence and joy over just seeing her family, being snuggled or loved.  She is happy.  

I chronically fight for her quality of life.  I chronically pray for my own will power and peace when it comes to her medical care. I will keep fighting because she keeps fighting.  And, I will celebrate each victory she has with the proudest mama heart.  Here’s to Joy being our prize.