the last photo before everything changed…

  It is late and I can’t sleep. It’s nearly impossible to rest in a hospital.  Here we are again.

Corrigan is doing well. His ammonia was 92 and then 61 and I fully expect that if they snatched some blood this very moment he would be safely hovering in the 30’s.  Another trip to the ER…another round of frustrations…another holiday in the hospital.

Each time we meet a new doctor, or nurse, not familiar with Corrigan’s case we are asked to repeat the story of his birth. The story of the start of his journey with Citrullinemia has been told to medical professionals dozens of times.  “It is fascinating” we are often told, “…such a unique disorder” and it is explored question by question until something is satisfied within them and they leave the room…leave me to the memories that they have innocently re-opened.

…and then tonight I could not sleep.

There is not much to do at 1am in a hospital and I found myself browsing through some files on the laptop to find a cute photo of Corrigan. Something to put with a “HERE WE ARE IN THE HOSPITAL AGAIN!”  blog post when I stumbled upon the photo.  The last photo before everything changed.

never printed.

never even looked upon I do not think…lonely it has sat for over 13 months…waiting to be opened, to add vivid color to the memories that each hospital visit forces us to explain.

Connor 091

I remember everything about this moment.  I remember wanting, so badly, to have some of those photos that would depict a serene mother and snuggly infant. I even wanted it to be “cheesy”, happiness wrapped in silly matching outfits. Weeks before he were born I couldn’t wait to wear this nightgown and wrap my new baby to me in matching garb. However, when Mark snapped this photo I was teetering on the edge of something close to panic. I am not sure I would say that it was some sort of motherly instinct causing me to feel like I was unraveling, some sense of impending doom…but a feeling of being so out of control for no other reason than there wasn’t any control to be had.

For two full days I lay in bed watching my baby be passed around to loving family members, trying desperately to not ask for him back. Trying not to be “that woman” that clings to her infant with fierce posessiveness, without explanation. I smiled as visitors gathered to congratulate us, to hold him gently and pass him back and forth amongst themselves.  I told myself, hour after hour, that I would have days, weeks to hold him…so much time ahead to snuggle him to my breast, sniff his head and cherish the newness of him.

For two days, nearly the only time I held him was to put him to bosom, to try and help him connect to the act of feeding while trying to be discreet around my adolescent elder boy-child and numerous other male friends and family.  Each time, the baby would furiously attempt to find suckle and then scream painfully after only minutes.  I would find myself on the verge of tears, convinced that if I only had more privacy I could get a handle on things. I could do the most natural thing in the world, to feed my baby, if only I had some control.

…but I trudged on trying to be generous and flexible…all the while the urge to grab him back from the hands of those that loved him nearly as much as I grew more and more intense.  When this photo was taken I had just asked the remaining family if they would mind going home.  Some had remarked, thinking I couldnt hear, at how tired and overwhelmed I looked and I truly was. I felt almost mad with exhaustion…with the feeling of failure.  I thought that if everyone would go home and leave me to my baby I could make everything okay.

My mother-in-law gently combed my hair before they left. My sister helped to dress the baby in the matching outfit and my husband obligingly snapped a few photos while the baby fussed and rooted and seemed so out of control himself. I wondered if I were projecting my own stress onto him…I held him tighter to me and felt the room spin…and then they were all gone.

They had tucked me tightly into bed, my loving family, and placed a suddenly calm newborn into my arms and then honored my wishes…their joyful voices and laughter echoed down the halls that evening as they left me where I thought I wanted to be…alone.

The above photo was moments before they left us to stare at each other. Corrigan and I. As tears rolled down my cheeks, I thanked God for such a beautiful creature…and I prayed that He would help me to be the best mother I could be. Then, I put him to breast, another failed attempt…and 35 minutes later I gave him away.

It sounds so dramatic…”I gave him away” but I did.  I had less than one hour alone with my precious baby boy and I handed him over to the nursery because something felt wrong. The culmination of two days worth of behaviors that never felt “right” with him…fear so crisp that it took control.  I demanded that they keep him, that they watch him, and as the nurse looked at me sideways I felt her disdain.  She wheeled him away from me…tsk-tsking that “all babies spit up…this is nothing to worry about”…and when at 4am they woke me suddenly to come to the nursery I knew that 48 hours of worry were about to turn into something worse.

This is the last photo before everything changed.

…and here I sit in the same hospital only one floor lower that that very room. Next to that very child, suffering from the same deadly disorder, feeling the same desperate way. Of not having control…of not ever had that “moment”…all of the days and weeks I thought I had to sniff him and kiss him and explore his newness were stolen away. For two weeks he lay nearly lifeless and for another week after that he slowly became “Corrigan” but those precious first days were forever gone…and I wonder if I knew.  Not the depth of what was going to happen…but that each minute that passed by, each time someone came in and took him from me to hold and shower with love, each time he was passed to another set of arms other than my own…each minute that I refused to ask for him when I so achingly wanted him…if I knew that I was about to miss something I could never get back.

6 thoughts on “the last photo before everything changed…

    • You are my favorite “babyhog” in the world. When Corrigan claps when he sees you…you know you have a piece of his heart. You’re the only one he does that for.

      *I* was the one pushing him onto people. *I* was the one trying to be generous and not seem selfish. * I * am the one that let people holh him and encouraged them to do so…but inside my body ached. It’s not that it was the wrong thing to do…it’s just that because of the circumstance I lost the opportunity. Under normal circumstances it would have been fine. Hindsight is twenty-twenty is all. Ifi I had known that I would hardly be able to hold him for three weeks I would have been SO SELFISH! I thought I had all of the time in the world and that’s what makes me sad.


  1. Oh, the cute matching mommy baby outfit! The envisioned photo – A Mary Cassat style photo of the mom cuddling the baby. There have been many times when I have thought to myself, I’ll dress the children this way and get this photo, this is the photo I want, this is the event I want, etc.

    Things rarely turn out the way we hope, expect, etc. I guess part of wisdom is realizing how little we can control, or know. Everyone on this planet faces the future as an unknown. In the blink of an eye things can change, or overnight. Hopefully the future change is a mild one, easily adapted too, but change is inevitable. Change is the one constant all humans face – even if it is only the changing of seasons, or aging. Parents face much more change – the growing of our children, their progress, their struggles, on top of everyday life’s changes.

    Sometimes I am convinced that the part of life to rejoice over, exult in, is the lulls – The steady in-between times – between illness, school disasters, problems, medical problems, etc. For me, there is the summer bliss of boring days of no vacation, no phone calls about problems at school, no schedule to be late for, no tantrums, no medical problems, no exciting events that don’t turn out like expected, etc.

    We never have all the time in the world. Embrace each moment.

    This is probably a dumb comment, touching on thoughts that I have harbored for years. Your post brought it back out, so I’ll press the submit comment instead of delete.

    God bless you. Your post brought back many memories for me also.


  2. Thanks for resharing this post. We experienced the same “this is not right” feeling with our son (OTC). I too have a “before everything changed” photo.


    • Thanks for reading Chris. Many of our UCD families report that they had concerns for many many hours before those concerns were heeded. It’s a shame as you know…minutes count.


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