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When You Are Always on High Alert for Your Medically Complex Child

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When Judah was born almost two years ago, I was reeling. I learned he had Down syndrome at birth. Like most parents with a fresh diagnosis will tell you, it feels like it wrecks you — some more than others, of course. At the time, I was devastated.

mom and dad with baby after birth

As I was carefully adjusting to our new normal, I was struck again when at 20 days old, my baby was rushed in an ambulance to the hospital with respiratory syncytial virus (RSV). We stayed in that hospital for 13 long days, through Christmas and Judah’s one-month birthday. We were crushed as he was intubated. We watched as his chest retracted, and we hoped and prayed as we consistently saw X-rays of cloudy lungs that struggled to clear.

You don’t walk away from that unscathed. So now I live with a watchful eye. I hold my pepper spray close, and I look for trauma that may be  lurking in the shadows.

Everyone who has a child lives with this to some extent. Whether it’s the moment they received the diagnosis or the medical challenges of the disability, there are scares. Down syndrome can come with heart defects, holes in the heart, an increased chance for leukemia, neck and spine issues, feeding tubes and aspiration. There is our familiar friend apnea, and there can be ear, eye, and thyroid problems.

baby with down syndrome with breathing tube in

Last year, around Judah’s first birthday, I started getting really anxious. I found myself reliving my old haunts, and I think it was  just because I could feel the familiar time drawing near. I had a pretty good panic attack while driving the boys to school one morning and had to pull over. My older son simply mentioned the words “car” and “crash,” and suddenly I could not catch my breath. All of the old smells and feels emptied down  on me. I was reminded of the previous year. It didn’t matter that I was now absolutely in love with my son or that I felt his Down syndrome was a gift. Still, somewhere, in the folds of my medulla, the fear that my baby might in fact die… it must’ve been stalking me and waiting to pounce. Even now, when I see photos taken just seconds after Judah was born, I can retrieve exactly how my my heart felt. I see pictures of little stickers on his cheeks and tubes through his nose, and I remember every stabbing feeling of guilt and fear. I remember these events more than any other I’ve invested in my memory’s bank. The stories of that time will always remain vivid. As Judah’s 2nd birthday nears, the anxiety is not quite the mountain I made it last year, but it is still a hill, one that winds me a little.

Way back When Judah had RSV,  he turned blue; he couldn’t breathe because of the infection. We couldn’t breathe out of fright. His breathing trouble was named “apnea,” and we were fortunate to only be introduced that one time. Recently though, the sucker punch of trauma got another good left hook in. On a summer trip, I went to check on my baby in the middle of the night, when anxiety tends to spoon me. Judah was pale. He was limp, and he was non-responsive for what seemed like eternity (but what was really less than a minute). It was scarier than any nightmare my mind could dream up, and I really did think my baby had died. I have to tuck that scare away deep. I can’t really reenact it in my mind because it’s too dark there. I can’t relive it or talk about it. I shake as I  write about it. Judah was fine after that, so I dismissed it as an overactive imagination, my own tussle with trauma, or just a very sleepy baby. Four days later it happened again and because my heart couldn’t handle one more missed beat, we took him to the ER. The doctors named it an “A.L.T.E” (acute life-threatening event). They blamed this event on another virus called adenovirus, which would be a cold to us (similar to RSV).

Still, weeks later, I wake up every two hours to check on my son. I keep a monitor next to my ear. I check the volume of that monitor every hour. I go to his room. I listen to his breath. I watch his back. I touch his back. Sometimes I cry. Most times I linger just watching him live. I know every single day for the rest of my life, trauma will keep me worrying about this little boy.

mom and little boy with down syndrome smiling at the beach

Some may feel that this is no way to live, but I am not annoyed at the sleep deprivation, sleepless nights caused by hourly wake ups to hear sweet butterfly breaths. My son’s life will never be passive to me. I hang on every breath and thank God for them. I am a hawk. I watch my child with intent. I can tell if he is just a bit unhappy, and my analytical nature looks for symptoms of stuff. I am well read on all things viruses, and I have become my own WebMD. I am well versed on all of the sides that come with Down syndrome, and I urge and advocate to his doctors. I may have saved his life twice by hovering, worrying and by keeping my eyes alerted to lurking trauma.

I do not like the panic, and I pray it will lessen as my baby gets stronger… but I like the lesson. I love that that the hard times have taught me about the good times with my boys, that they are indeed, oh so good. I let them linger like a fine wine on my tongue.

little boy in hospital gown

I don’t like looking for signs of cancer, diabetes, celiac and other finds in my baby, but I like knowing how blessed I am when they are absent. I like appreciating what my son has to deal with and feeling lucky that his challenges are not heavier. I hate every time I read about a child with Down syndrome who has gotten his or her wings, but I love holding my babies and letting tears spill because they are mine to worry about and protect. I hate the aftershocks of the trauma because the worry feels like a noose sometimes, but I sure do love the grateful mama it has made me.

Originally published: September 17, 2016
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