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As I sit here reflecting on what tomorrow means, I can hear Josie upstairs singing ” ‘Cause I am a champion, and you’re gonna hear me roar” over and over. She is too young to understand how true those words are.
Tomorrow is the one year anniversary of the single worst and somehow still the best day of my life- the day my middle child, Josie, had life saving brain surgery.
I can’t remember many specifics of that day. I am sure I woke up later than I should have which lead to my eldest daughter needing to sprint from the car to her classroom. Aside from the medical stuff that was ingrained into me that day, all I clearly remember is the outpouring of love and support my family and I received.
That day my phone couldn’t keep a charge for more than an hour due to the calls and texts. My Facebook friend list was filled with “Fighting for Josie” pictures to the point that I was getting confused who was who. Friends, acquaintances, and complete strangers took pictures of themselves, their children, and even some pets wearing purple in support of Josie’s fight with a Chiari Malformation. One friend made sure that even though that day was the start of their move from the West coast to the East coast she wore her purple for Josie.
Although my husband was deployed and no family lives nearby, I wasn’t alone in the waiting room. A fellow EFMP mom, that I had only met through Facebook, came to be with me. If this gesture wasn’t touching enough, she let me know that her son was undergoing an operation the next day and so she knew how important having support was. Being a well seasoned PICU mom, she knew I probably forgot to pack things for myself and so she brought me supplies. It is because of her that I was able to snack, brush my teeth, and just generally not smell horrible. The PICU staff and I thank you, Maria.
While in the hospital, not only were Josie and I well cared for, but so were my two children back home. Teachers showed my daughter extra compassion while I was away. One went as far as letting my daughter use the teacher’s personal cellphone to call the day of surgery to check on her sister. Neighbors brought by toys and goodies to help pass the time a little more quickly. Offers came in from fellow students’ parents to help get my daughter to and from school.
The outpouring of support didn’t end when we came home. For weeks after the surgery, people stopped by with meals. Friends took Josie’s siblings to the park so Josie could have some quiet time. Even the security guard we see every Wednesday morning would ask for months following the surgery how Josie was doing. It wasn’t a quick “how is your daughter” and then he dismissed us before I answered, he took the time to learn her name and listened intently as I gave updates.
While I hope with every fiber of my being that we will never need to go through this whole ordeal again, it warms my heart to know that Josie has an army behind her, willing to support and love her every step of the way.
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A site to discuss and learn about TRICARE Philippines Policies and Issues that are often times implemented in secret by the Defense Health Agency (DHA). Policies that result in payments at about 7.7% and 3.8% of what they should be or $328 per under 65 person instead of the expected $4,261 & $328 per over 65 person instead of the expected $8,650.
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This WordPress.com site is about the ups and downs of life and autism.
Angela Moorad, MS, CCC-SLP. Over 33 years experience in AAC. OMazing Kids AAC and app consulting. Creator of several AAC Feature Matching resources (https://omazingkidsllc.com/omazing-kids-aac-resource-links/). Includes info about unique features to support Gestalt Language Processors
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