Author: Elizabeth

My baby is four.

I penned the words below on Knox’s first birthday. I don’t think I’ve made much progress in processing everything our family has been through. In fact, I think I’m more stuck than ever. The additional complications he has faced since (among other things)- the breath-holding spells we endured and still struggle through, that make him look as though he’s dead…blue and unresponsive, have left me in a steady state of numb. Thankfully, he has not had one quite so severe in over a year, maybe even two. Time is elusive these days. The truth is, it happened more often than my heart can hold, and I can feel myself detaching, afraid to lose another child. But today my baby is four. We will celebrate with library friends during story hour and swim at an indoor pool. We will eat what he and Solomon call “chicken fries” with lots and lots of sauce (his favorite). Right now, he is asking for chocolate chips for “wunch” (lunch, what he calls every meal of the day). I will cuddle and spoil my birthday boy and sit in gratitude that we are blessed enough to celebrate him today.   

Knox is one year old today. One year. Part of me is not ready to process all we went through in the months leading up to his delivery, in those hours of his labor… the heroic, lifesaving efforts from his team at Children’s after birth, and the days and weeks following. Part of me wants to sit in it for a bit and let it simmer. My heart will have to sit somewhere in the middle until it is fully ready.

My baby is one year old.

Anyone who knows Knox would say that he is always happy. He is always smiling, clapping, laughing, and captivating his audience. He is always trying something- to climb into the dishwasher or his big brother’s chair- just the right size for him, or on top of the Lego table I made for Solomon- just so he can sit on it like he conquered it. He is desperately trying to walk and keep up with his brothers. He is always making music as he reaches for the piano keys or clicks his tongue. He loves independence and also cuddles, eating things off the floor before we can catch him (in puppy fashion) and carrying things around in his mouth (also in puppy fashion). He also loves playing peek-a-boo, sometimes even by himself with a towel that he found on the floor from one of Solly’s water messes. He is adored by all who know him and especially by us.

And yet, we almost never knew him. I cannot describe how it felt when we learned we might not be bringing home our baby. Only a few months after our seven-year-old passed away, we faced the possibility of burying our second son in less than a year. His birth felt like the edges of a memory, even as it was happening. My mind could not take it in as present time. The bright lights from the OR, the seriousness in it unlike any other birth I have experienced, about a dozen or more people waiting on the other side of the glass to save his life before I could really meet him.

There are things I have not processed. A lot of it I have not processed. I have not even processed losing Isaiah; I don’t know how I could possibly process what we went through with Knox. But there are glimmering moments I will never forget: The doctor working to insert my son’s breathing tube while he lay on my belly after birth. To look at the photo of the plastic tube going into my son’s throat is startling to me. It feels savage. And yet it saved his life. It makes me think of so many situations in our lives that feel barbaric and cruel in that same fashion and yet it can be the Lord saving us, shoving in that foreign tube to bring us life, giving oxygen when we otherwise would not survive. I will never forget the worship music that I had playing in the background during labor and delivery and the fact that without our planning or prompting “The Blessing” played for the entire hour at the end of my labor and while the doctor worked on resuscitating our son. I will not forget the presence of the Lord in the OR and in our NICU room in the weeks following. I will not forget the doctor taking him from my arms to give him to the waiting team while I was wheeled away, less than ten months after I had left my seven-year-old son in another hospital room for the last time.

I heard that stabilizing Knox took a great deal of effort. I don’t know what that meant. I don’t know if my heart can handle what that meant. I just know I sobbed to my sweet labor nurse that I had to get back to my baby as she tried to get my bleeding to stop and finally gave me a shot to help because she knew I wouldn’t hold out for much longer without him. I remember shaking as she wheeled me in to see him, and I cannot yet describe what it felt like to see so many things hooked up to and poking out of my son, all of it keeping him alive. None of it felt real. It still doesn’t. But I will never forget the kindness of his first NICU nurse as I sobbed beside my son, unable to breathe through my cloth mask. I will not forget how she gave me a paper one when I asked for it, because mine was soaked with tears and too thick to breathe in, though I know now they cannot just hand them out. I will not forget her kind eyes and gentle, reassuring presence then and in the weeks following… how much I looked forward to seeing her. I will not forget how hard she worked to get help for me to hold my son as soon as it was safe enough and as often as she could. I will not forget the rest of his nurses, especially his regulars, many of whom had heroic moments in the weeks following and who put up with our dumb jokes and ridiculous questions all day long for weeks on end. I will not forget his respiratory therapists who gave us much needed comic relief and especially our favorite one who saved his life twice that first night after his oscillator malfunctioned. (I could elaborate about his wonderful team, but I am only resting now in that first day.)

I don’t know how much deeper my heart can go into our experiences, and all that might have happened outside of the Lord’s protection and grace. Instead, I will sit in gratitude: Gratitude for my son’s life, preserved for us… Gratitude for his wonderful team at Children’s, for the doctors and therapists and nurses who took care of us and became our family during those six weeks… Gratitude for the incredible friends and family who supported us and held us up during that time and for the precious time with my husband in the NICU… Gratitude for this last year with our son who has filled our home with so much joy… And finally, gratitude for the future as we await all that this strong boy will someday do. We nicknamed him Knox the Ox in the NICU for the strength he had to have to endure everything, and he has certainly lived up to his name. Knox the Ox is one today and we praise God for the blessing of our precious boy.

In November of 2019, I began a tradition I had been thinking of for some time. I found a long, cream-colored table runner at a craft store and a package of fabric pens. At the Thanksgiving meal, I collected signatures, marking who joined us for the event. It was meant to be a memory maker. Twenty years down the road when we were eating with the grandchildren and in-laws, we would study this centerpiece, reading the scrawl of names. We would reminisce on the past, old customs we shed or still practiced, and new we incorporated. We would remember those who were no longer with us.

Isaiah penned his name proudly that first year, in his perfect, beautiful handwriting. He chose red, his favorite color. And I even thought he might have chosen to make it bigger than everyone else’s, just to get under my skin… one of the many quirks of his condition.   

That was the only time I would see his name on the banner.

It is a tradition I wish I could abandon or forget, if I’m honest. I don’t lay the runner on the table like I had planned. I couldn’t bear for his name to catch a stain- a splatter of gravy from an inattentive serving, a smudge of mashed potatoes ruining his perfect print. It isn’t a beautiful sentiment like I had hoped, but a deeply painful one. I keep it folded in a tote all year, hanging with our coats, not in a bin of holiday supplies, as though Isaiah was close beside me, and not in a box in the ground.

These years I don’t cook the whole Thanksgiving meal. I haven’t been able to bring myself to do that since our last one with him. We attend potlucks. I bring cheesecakes and cookies, casseroles and brie. Never the turkey. That would be too difficult. Sheepishly, I carry my cloth from family to family, asking awkwardly for autographs like a yearbook page. Usually, I manage a weak explanation of it being our tradition. Rarely do I reveal the true meaning.

Some people light a candle for their missing loved ones or keep a picture beside an empty chair. This is my way of bringing my son. It has become my tribute to him. My way of honoring him.

In public restrooms, I choose the handicap stall. It reminds me of Isaiah. With his condition, even five minutes alone in a bathroom was fodder for concerning and dangerous behaviors. He could not handle occupying a unit alone, and honestly, given the opportunity, he would have felt unsafe. We had our routine, trading privacy by facing the corner, often where the diaper station was installed.  

The last year of his life, we read a book on Louis Braille for school. Isaiah was mesmerized by his story, the way he turned a tragic childhood accident into good, helping others with his invention of the blind language. I told Isaiah that would be his legacy. He would do something amazing.  

I remember the time at his favorite restaurant when he discovered Braille etched on the side of the changing table. His eyes illuminated as he fingered the dots, gasping and showing me, so proud of his discovery. It was a good day. One of the few memories I have of the real Isaiah peeking through. 

The morning we buried him (months after he passed, when the ground finally thawed), we ate there in his honor. I sobbed when I saw the Braille he once touched and pressed my shaking fingers across the same risen bumps as though it could connect me to him and that beautiful memory of my son without the darkness. 

Later, the restaurant renovated. Breath abated when I entered the same stall, realizing they replaced the diaper station. I longed for him and that rare moment of connection. Instead, another piece of my son slipped away. Losing a child may be sudden, as it was for us. But it is also slow. The surrounding world forgets in increments, while we never could. Small things, like the swap of a changing table, strip more of him away.  

In the handicap stall, I feel awkward sometimes, hoping I’m not inconveniencing a waiting patron, but it’s one way I hold on to Isaiah. Sometimes I see him, head turned towards the wall to offer privacy, waiting for me to give the all clear while I search for Braille in his honor. 

October 2, 2022

I still keep Isaiah’s insurance IDs in my wallet and the business cards for a few of the specialists he saw over the years. I have the one from the first neurologist we took him to in search of answers when he was twelve months old, the one who diagnosed him with a behavioral disorder. She had no other words to explain his extreme and terrifying conduct, or his polar fluctuations, depending on who was in the room. The second neurologist, whose card I also keep, we saw a year later, as new symptoms emerged. This one misdiagnosed Isaiah autistic because that’s typically the first label slapped on a child exhibiting actions non-neurotypical. Not criticizing. I get it. It took a long time for me to fully understand his correct diagnosis myself.

I see these cards almost every time I rifle through the contents of my wallet to find that stray stamp, when I search the pockets for my rewards ID at the grocery store, or the cash misplaced in a hurry. They peek from random places. (Little hands in my home often dump the contents of my purse when I leave easy access, and on these occasions, I often shove everything back in, hurried.) It sucks the breath out of me when I come across one of these, and it’s usually while standing in the supermarket or some public atmosphere, where I feel it necessary to mask my reaction. Most of the time, I barely let my fingers graze the paper or allow my mind to return to those places.

There were so many hours spent driving to new doctors, months waiting to be seen, begging for earlier openings, life hinging on evaluations and expert opinions. But when I’m strong enough, I’ll pull out these small pieces of paper and let myself remember. I’ll let myself recall the offices, the faces of the physicians and the dozen or more times I placed my son on that crinkly white sheet to be examined, praying this time they would believe me. In these rooms, Isaiah fastened his best smile, donned his charming act, and the specialist who had never encountered mental illness in a child so young looked at me and rolled their eyes, told me I was being dramatic. I was taking his behavior too seriously. He was, in fact, only a toddler.

Finally, there was the psychologist who correctly diagnosed him at three years old. I keep her card, too.

I still keep my son’s Medicaid IDs in my wallet. The one he had when he first came to us at two months old from Sunshine Health, and what we received many months after moving to Colorado, both in his old last name. I also have his final one, what took me over two years of struggle to obtain after his adoption. This one named him mine.

I used to have every insurance card here; the renewals spanning the timeline of his history. Little hands playing in the contents of my purse have misplaced a few. Every once in a while, I come across one that settled at the bottom of an old diaper bag, what I missed in a hurry.

Two and a half years after his death, I keep these mementos of my son close. And though they cut me when I see them, I can’t bring myself to remove them. All of them feel like pieces of Isaiah. All of them are parts of his story, one that ended far differently than I could have imagined and obviously never would have chosen. Still, I trust the God who carries all of it and wait on Him. In the meantime, I hold on to simple tokens such as these while I wait to hold my son again.

September 18, 2022

There are moments I can still see his brown eyes looking up at me. It was always on a “good” day, when things weren’t so tenuous, when everything he did didn’t bring me to my knees. One of his brothers would say something snarky, and he would clasp my hand to get my attention, shake his head, disappointed, and give me a look like- You deserve better, Mommy. That wasn’t nice. I would know his heart was tender then. In those rare instances, I saw the real Isaiah peeking through the dark clouds of mental illness that held him and our family hostage.

Yesterday marked two years and seven months since my son passed away.

I first penned most of the words in this post months ago. Still, I sat in them, letting them simmer, as my heart was not yet ready to open. I’m still not sure it’s ready.

Last year I lived inside myself from November (possibly even October) until May, as all the big dates passed back-to-back. I fear this will be my new normal. I can feel myself getting ready to curl into it again, though I wish I didn’t have to.

The holidays are excruciating when you’ve buried a child, and most are too busy in the rat race to look up and notice. Last year, I opted for the church potluck on Thanksgiving, as even the idea of cooking holiday food felt like drowning.

Christmas was just as suffocating.

Then there was another year changing on the calendar my son will never see.

His birthday in January.

The anniversary of his passing in February.

The day his birth mom overdosed after I told her he passed. I loved her almost as much as Isaiah.

The seventh anniversary of the day she signed her rights away for us to adopt him on March 5th.

The fifth anniversary of his adoption on March 22nd.

April 1st, the day we brought him home at two months old.

Then, because it came so late this year, Easter. He told me once it was his favorite holiday. I wonder how he celebrated in heaven.

I barely made it through Mother’s Day. When it passed, I almost felt like I could breathe.

His mom’s birthday was a few days later.

In the latter years of his life, I found it ironic he had come to us on April Fool’s. The nature of his mental health condition already unfolded and was ripping our family apart. But on the first anniversary, we celebrated. We were not sure what was wrong. I was still busy rushing him to therapies almost every single day, five to eight appointments a week for well over a year. I lost count of how long, though, his thick stack of paperwork I hold on to would clarify. Physical, occupational, speech, and an ITDS, chiropractor for his torticollis, helmet shavings for his plagiocephaly, etcetera, etcetera, etcetera. I hauled all four boys with bags of homeschool and educational CDs for the car ride. The kids and I did workbooks in the waiting rooms, read Sonlight books in the doctor’s offices, and drilled for Memory Masters for our Classical Conversations class.

On the first anniversary, I was still making him the homemade baby food he threw up on me at every meal. I was cloth diapering him in his own special set of Bum Genius I bought when he came to us because I was determined to treat him the same as my other boys. I spent most nights standing over laundry piles, trying to determine if I should wash the vomit or the diaper load. As he grew, sometimes he was kind enough to lean and barf directly into the hamper, making my decision easier. But at exactly one year, the judge changed the goal of his case from reunification to adoption, and he was one step closer to being mine.

Easter Sunday marked two years and two months since my son met Jesus, and I think part of me has been stuck in the stage of shock. It seems impossible to come close to processing his death when I’m still trying to wrap my heart around the tortured life my son lived, to make sense of what happened to our family as we struggled to be his. I’m still trying to understand the image of my seven-year-old in his tiny casket, the first time I saw him at peace.

Few things sustained me in the darkness of his condition, not the least of which was the image of dancing with him on his wedding day. Like the edges of a photograph already taken, I held on to the hope of that dream. I was sure on his wedding day I would hold his hand in mine and tell him he was worth every sacrifice I made, every struggle we endured.

At the end of his life, my son loved Jesus. But the more he wanted Jesus, the greater the split in his mind and mental health became, and the more we saw the darkness vying for control.

For the rest of my life, I will remember his brown eyes looking up at me. I hope I can remember how they looked on the good days, those beautiful moments I treasure, but that also wreck me. His are the first eyes I want to see after I meet Jesus. Because of Jesus, I know my son is more alive now than he ever was on earth. Because of Jesus, I know even though I will never dance with him on his wedding day, one day I will dance with him in heaven. I will take his hand in mine and tell him he was worth every sacrifice we made.