What To Do When Life Happens

In early June I was on a roll, in control, kicking butt and living large on the fast track. I was close to completing the second book in my Clans of Tagus series. The Gatekeeper, Book One, was doing well and received a 4 star rating from Romantic Times Book Reviews. It was holding an average 5 stars on Amazon. My daughter was pregnant and doing great. Hubby and I were considering a move back to Arizona as soon as the new grandson arrived and was settled in. Finances were looking good. The mosquitoes in North Carolina had not launched their full-on attack yet so we could enjoy quiet evenings on the patio with a glass of wine and interesting banter.

Life was good.

But then Life decided to pitch a few curve balls. Having been lulled into complacency by the string of uneventful days, I found myself scrambling to cope. Daughter announced her baby was not being nourished by her placenta and the doc wanted to take him a month early. Baby Adam arrived by Caesarian and was instantly whisked away to Neonatal ICU at the Levine Children’s Hospital. Mother was transported by ambulance a few hours later. Mother was fine considering she’d just had surgery. Little Adam was diagnosed with a rare skin disorder called Ichthyosis which was actually the culprit behind his small size. His body was covered in a dry, thick membrane resulting in painful cracks each time he tried to move and it was prohibiting his growth. Because this is such a rare genetic disorder, the local docs had no idea what to do. Specialists in other cities weren’t readily available so they had to consult with the burn unit to come up with a temporary treatment plan.

Adam was placed in a high humidity incubator and covered in a gel substance similar to Vaseline to keep his skin lubricated. A feeding tube was attached to his umbilical cord. At first we thought his nostrils and ears were closed but it was the membrane covering the openings. My daughter was adamant about being with him and within 12 hours she was walking the halls so she wouldn’t have to rely on a wheelchair. Both mother and father remained in constant vigil by their son’s side. Their older son, a six year old, spent a lot of time with me. He kept saying, “I wish things could be like they were before Mommy had Adam.” In other words, he missed his parents. Understanding the severity of the situation is tough for such a young lad.

Adam’s prognosis was not good at first. The doctors thought he might have another genetic disorder which is fatal in the first 12 months. Thank God he didn’t. I am still amazed at the outpouring of good wishes, prayers and positive energy directed toward my grandson, and I’m convinced it enabled him to overcome the overwhelming odds. Since Ichthyosis is incurable, we can only treat the symptoms. Some call it Fish Skin disease because it leaves the skin dry and scaly, like fish scales. In severe cases, the skin will become discolored leaving the host to look like a burn victim. We probably won’t know the full extent of his issues for a few months.

He’s gained almost a pound since his 6/22 arrival. The outer membrane is beginning to peel, much like a lizard. What’s underneath appears promising but only time will tell if it remains “normal” skin or exhibits the traits of Ichthyosis. We’re pretty sure his hands and arms, a little of his chest, and possibly his ankles will be affected. We pray the skin on his face will be normal simply because children (and adults) can be cruel in situations like this.  He came home this weekend. The care and treatments will continue for the rest of his life.

So yes, that episode was distracting and totally unexpected. To add more salt to the wound, my sales slacked a bit from lack of promotion and just the normal summer decline. We signed a lease on our apartment for another year while we determine if Grannie is needed on a full time basis to assist with grandson’s care. If not, we may renew our bid to move to Arizona next year. Until then, I continue to daydream. The mosquitoes and rain hit about the same time. After a ten day run of exceedingly hot temperatures, it decided to rain every afternoon. The bugs are taking over, the skeeters are big as horses, and my tomato plants are rotting from the damp. The IRS decided to be difficult with a payment plan for last year’s taxes. Let me rephrase, one agent at the IRS was difficult. I imagine her as Medusa with all seven snake heads spewing venom. Things were resolved but this egotistical sociopath needs to find a new job, like as a security guard for a rock quarry. She has no concept of how to communicate with real people.

And now it’s July, a month later. My muse is lost in the pile of papers and hundreds of emails I’ve yet to read. I’m not very focused but I’m working on it. It’s difficult to work on my manuscript and find the same momentum. I’m not sleeping nights and I’m addicted to Angry Birds and Words With Friends.

Back to my original question . . . what do you do when Life happens? Take it a day at a time, set small, attainable goals . . . and drink lots of wine.

Adam’s membrane two days after birth.
Two weeks later the membrane began to peel.
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About Debra S. Sanders

Debra is an RV nomad, traveling full time with her husband, dog and cat. She writes, hikes, star gazes and explores myth, lore and curiosities from America's back roads. She also indulges in colorful sunsets and good wine.

2 Responses

  1. cindy

    Dear Deb
    Ijust read about your grandson and I am so sorry. Please known I am praying for him and your family.

    Like

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