Our son was diagnosed with Trisomy 18 five days after birth. We were told he probably would live for two months--no more. He has managed to defy the odds placed against him. Zane is now ten.
“Every day is a journey, and the journey itself is home.”
♥♥♥
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Trisomy 18
Trisomy 18 is a chromosomal condition that occurs in 1 in 7000 births. It typically proves fatal for children within the first year of life. Fewer than 10% live to celebrate their first birthdays.
Respite was supposed to happen today. It didn’t. It feels as though it never will. The aide who was supposed to care for Zane today had to take her mother to the ER last night. I know these things happen, but I was disappointed and a bit miffed nonetheless. I had planned to work all morning, therefore I didn’t work yesterday. Now I am behind. The respite that is supposed to be helping me is a hindrance at this point. Last week, I gave up a few hours to help train the aides and they didn’t even come today. While this may not be a big deal for someone who has loads of free time (like the people who post status updates more than once per day on Facebook), it is a huge deal for me. In addition to caring for Justin and Zane, I work three jobs from home. Time is quite valuable. I must say, I loved spending the time with Zane this morning in lieu of work, but now I have to find time to fit my job duties in this week. Friday is supposed to be my next day of respite. We’ll see if it happens.
Susan is a YA and Adult contemporary novelist, as well as an advocate for social change. Her essays have been published both nationally and regionally, including a brief stint in The Daily Beast. She lives in the Southwest with her family.
Susan,
ReplyDeletePraying respite happens for you soon, I know how frustrating it can be. Happy to see Zane doing well.
Kathryn