Acknowledge Me

Two years ago a representative from our church asked us if we would be willing to compose something brief about our experience with our Garrett. He was 9 months old at the time and Andrew and I were still adjusting to life with a medically complex baby. We were told there was no time frame whatsoever, and nothing specific we needed to write about, just anything regarding our experience with Garrett/how it may or may not have affected our faith life. Emphasis was put on the fact that we could do this at our convenience, there was no expectation on timeliness.  Here I am, two years later, finally writing.

 Garrett was officially a ward of the state for the first 5 months of his life. Legally, this is what happens when your infant lives in the hospital. His home address was the hospital, and Andrew and I spent time with him as visitors. We lived just up the street at the Ronald McDonald house and had a difficult balancing act of spending time with our other two children age 3 and 2, and sitting bedside with Garrett at the hospital, waiting for answers- any answers at all, and for him to be well enough to come to his real home.

 It was a happy beautiful day when Garrett finally discharged from the pediatric ICU. It was December 17th 2018. By this time, weary from 3 months of living in a one room bedroom in the Ronald Mcdonald house, we had purchased a house up the street from the hospital. We were able to push Garrett home in a stroller – he was leaving hospital grounds for the first time in his life. We were delirious. Our little boy was coming home!! I remember singing with my (then 4) year old daughter the song from Disney’s Frozen “For the First time in forever… Garrett’s coming home!” 

 He was coming home to us with an artificial airway in his neck (a trach) and a ventilator to help him breathe. He had a different hole in his belly (a gtube) so that we could feed him with tube feeds. He had a hole a bit lower in his belly, where his bladder held open and stitched into his tummy, so he was constantly leaking urine (vesicostomy). He had suffered two (maybe more) strokes in the hospital as a result of various surgeries, we didn’t know (and still don’t) the full impact of the resulting brain damage. There was so much to worry about. There were so many stressful details of his equipment and care needs (not the least of which the ever present nurses in our house which is a requirement of life with a trach baby) But he was coming home! Everything would be better. Everything would be wonderful. Everything would be happy.

 But it wasn’t. It wasn’t at all.

We had transformed the formal dining room of our 1920’s house into Garrett’s home ICU room. It was right next to the kitchen and the living room, so our sweetheart would be in the middle of our family life. A welcome change from him being up the street, up the elevator through locked double doors and inside the glass paneled rooms of the PICU.

His medical equipment filled our cupboards. The numerous machines required to keep him alive and nourished lined our walls. There was a constant humming and buzzing and beeping in his room from all of his machines and his alarms. There was an extra person (his nurse) in the middle of our home ever present in our private life. Privy to every little disagreement between husband and wife, any untidiness of our house. Ever present in the morning to see my make up free unwashed face- and even (this is the worst for me!) un-brushed teeth. But none of this mattered, because it was all going to be worth it, because our son was home with us.

 Ohhhh Garrett. Sweet Garrett who we loved so desperately and who had been through SO MUCH in his first days and weeks of life. Garrett was miserable. He was either sleeping or crying. This is not an exaggeration. He often slept 20 hours of the day- a concerning thing- but more concerning was his wakeful behavior. Raging. Crying, screaming, arching, thrusting his arms about, squinching his red face, constantly until he would fall asleep in exhaustion- his ventilator humming loudly.

 His was a rage we could only see. We couldn’t hear him crying, because when you breathe out of a trach, your voice box gets ignored- untouched by his exhale. I never knew how much I would long for the loud screeching sobs of an infant. It is a desperate lonely emotional thing to watch your child give silent sobs. Even more desperate when it is the only thing he does when he is awake. I would sit by him for hours doing everything I could think of to calm him. Pleading for a response. Anything. ANY response. Anything to know that he felt me. That he felt my love. I loved him SO MUCH. OH how I wanted him to know that. How I wanted him to get comfort from my arms. Or my smell. Or the sound of my voice. We knew he was hard of hearing, but he could hear some things. I would sing or talk or hum with the desperate hope I was providing familiarity or comfort.  I couldn’t nurse him (he didn’t feed orally, but through his gtube) So this simple, natural thing that most Mother’s can offer as comfort to their baby wasn’t an option.  Any of the “normal” interaction parents can expect from a baby wasn’t there- we were ready to embrace the interaction that we could. But there was none. Not even eye contact. Only sleep, or wakeful silent raging.

 Happily (so happily) we learned the reason behind this pain. Our sweet boy was suffering constant ear infections. His pain was eventually alleviated by the insertion of ear tubes, which allowed his ears to drain, and which introduced us to an entirely new baby.

But it took us two months to discover this.  Two months of this agony. An unknown pain seeming to torture our voiceless child.  How I begged for a relationship with him. How I yearned to know that ANYTHING I was doing mattered to him AT ALL. I would sing to him forever. Hold him forever. Just please PLEASE let it matter. Let me have a relationship with him. Nothing sophisticated, nothing remarkable. Eye contact would do. Maybe a small smile? Even just a shift of his body position that showed me he enjoyed my touch. The smallest tiniest acknowledgement of my presence would mean the world to me. It was through this yearning and pleading for relationship with my tiny suffering child that I came to better understand prayer.

 I have often doubted the importance of a simple, quick prayer. After all God is so great. There are so many beautiful prayers. Saints, musicians, artists, geniuses, beautiful minds capable of composing beautiful prayers and oratories- does God really have a need for an unsophisticated, simple, humble, modest prayer from me? Probably not. Will it be missed? Nope. Does my “Thank you for the sunshine, God” really matter. Do my small words of “Be with me while I sit in loneliness” hold any meaning?

 OH MY GOODNESS!!!!!! All I wanted from Garrett was EYE CONTACT. Or the TINIEST SMILE. I Could have lived on that for months. I didn’t need sophistication. I didn’t need genius or oratories. I had absolutely zero desire for this child to IMPRESS me- he was constantly urinating out of his stomach for goodness sake. I just wanted him to LOVE ME. I wanted him to know that I LOVED him. That was all. That was it.

 Reflecting on that desire, and how intense my yearning was for the slightest relationship- I no longer doubt the value of a quick “good morning” to God. Or a simple ineloquent “thank you for good things.” There is beauty in sophisticated prayer and relationship, sure. But when you love someone there is immeasurable value in any relationship at all.

This is the first time I truly got to hold him. Days after he was born.

Our tiny little warrior.

This simple hand hold was often the extent of our interaction in the early days.

He still loves to hold my hand.