We Shifted

Do you remember the last day? You know what I’m talking about. The last day of your life before everything you thought your future was going to be… shifted.

I do.

My hospital bag was packed, and I stood in my unborn son’s nursery, taking in the sight. His crib was set up, lovingly displayed with the bedding set I had painstakingly picked out for him. His changing table was stocked with custom-ordered diapers, while personalized, decorated, block letters adorned the windowsill, spelling out his name: Jackson.

I rubbed my belly out of habit, excitement, and nervousness. After tomorrow, he would be here, inhabiting all the places we’d imagined him in for months. We’d be a family of four!

My parents were in town, so my mom made us dinner, and I tried not to cry as I played with my 2-year-old daughter– the last evening she would ever be an only child. I’ll admit I cried as I put her to bed that night. She had absolutely no idea of the changes that were in store for her the next day, and I only hoped she would be able to process them and adapt.

If only I had known the changes that were in store for me, too.

I finished the evening by drifting off to sleep listening to Lock Up on MSNBC, the show that interviews inmates in maximum security prisons. Not the most cheerful thing to watch the night before you bring a human being into the world, but it was mine and my husband’s nightly ritual. It was comforting.

It was also the last day that anything would make sense for a very long time.

The next day, at 6:15 p.m., when our miracle baby arrived, our world shifted ever so slightly, and each time a doctor turned to us and began a sentence with, “It seems Jackson’s [insert whatever organ pops into your head] works a bit differently, and he will need [insert special mechanism, procedure, surgery] to fix it,” it shifted a bit more.

At this point, with his long list of anomalies, our little world–the Engels’ personal corner of existence–was completely upside down. Left was right, right was wrong, and the future was fuzzy, dim, and out of focus.

It will, eventually, become clear again. The clouds will evaporate, and we will feel the sun light up our lives once more: it will happen. We are in the middle of complete uncertainty, and are scared of the unknown… but who isn’t?

That day, though… that last day before everything changed, will be seared into my memory, forever. Before I knew what a VSD was, or before I knew the terror of researching chromosomal abnormalities. Before I knew what it was like to hook up a feeding tube to my son’s stomach, or before I felt the guilt of either leaving my daughter to stay at the hospital, or leaving my son at the hospital to see my daughter.

That last day is painful to remember, because, looking back, it’s like a pot of water on the stove. You know, at some point, the pressure will build, and explode into chaos, but the water in the pot has no idea. I was the water, stroking my belly, just ready to become a mother for the second time, while the universe shook its head, knowing the next day would be a game changer…

… a world shifter.

4 thoughts on “We Shifted

  1. jenset1 says:

    Have they done a full mri of his brain? I just wonder because of my sons presentation with his congestive heart failure, was caused by a malformed vein I’m his brain. It would be easily seen in the mri though.


    • Rachel Engel says:

      Yes, they have done TWO full MRIs. The second was just a follow-up. The only thing they found was an immature 7th cranial nerve, which is responsible for the slight paralysis in his left eyebrow and eyelid, as well as for some of the swallow function in his esophagus (hence the g-button).


  2. Julie says:

    So, I found your blog from when you just posted on the facebook group. I was reading your article about breast feeding and it was as if I was reading a story about our breast feeding journey. I remember after we did the swallow study and they walked in and said, “yep, he aspirates…” I was standing there, smile on my face, “ok…what does that mean?” Then, I went back and read on your blog and there were so many similarities…last year we had a two year old daughter, when I went for my ultrasound I was so convinced I was having a sister for my daughter that I was shocked when they said boy, my family and husband’s family pretty much had to raise her while my husband and I stayed with my son (my mom would send pics of my daughter in the pool while I sat in the hospital)… although our sons do not have the same diagnosis and your stay has been longer than ours was, we share a lot of the same events that happened. So much so that we were asked, “what…are you two related? Are you guys from West VA?” I literally laughed out loud when you wrote about the part where they said you guys must be second cousins. I can SO relate to you and I just wanted to let you know that I feel for you and I am keeping your sweet family in my prayers. My heart hurt for you as I was reading, because I would not wish our summer last year on even my worst enemy. Praying that all of this will soon be just a memory and you guys can just say, “remember when…” And roll your eyes and say, “SO glad that is OVER!” Hugs and prayers!


    • Rachel Engel says:

      Thank you. Thank you SO MUCH. Because, even on my positive days, I still hurt. I can’t believe we have spent three months of his precious life in this hospital. It’s unreal.

      Thank you for reminding me that there is an end… eventually!


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