Invisible Illness Awareness Reflections by Julie Arduini

Last week I dedicated most of my personal blog posts to Invisible Illness Awareness Week. I shared our experience with our daughter, a 12 year old who has been diagnosed with congenital hypothyroidism, Hashimoto’s, and Albrights Hereditary Osteodystrophy. I also wrote a guest post for Patient Worthy describing what is typical for our daughter is her normal, but she’s starting to see that not all her friends carry the same routines.

Also during the week I attended the introductory meeting of a special needs support group our school started offering. Whether it was adoptive issues, ADD, having an IEP (that is our case,) or being on the autism spectrum, the group was a safe place to share.

As the week wrapped up, I thought about everything I’d shared and it was kind of a punch in the gut.

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Here are things that I realized:

1. This year was tougher than I wanted to think about. We’ve had a stretch of years where things have been stable. I felt the need this year to prepare for puberty, and it was wisdom. Things are changing and in June we were blindsided by news that is rare and still an issue, without any recourse. The praise is she doesn’t always comprehend what the doctor is saying or see the whole picture when I explain. So to read me write “I, I, I,” please know I absolutely understand this is her journey. But as the main caregiver who receives the results first and has to stay on top of it, this year sucker punched me.
2. In a year of revive, I’ve forgotten respite. Each year I ask God what the theme is for the year. This year is revive, and what a journey He has put me on. But as I looked back at the week and all I’ve written or discussed, I realized I have not stepped away from the daily care in months. She has several medicines to take and she forgets. I have a pill app, the pill box, a bowl where I dish out the needed meds at the needed time. It is always on my mind because sadly, I have to repeat the request every day, several times. I’d love to not need to mention it, but that helps no one. On a smaller scale schedule wise but emotionally, very hard, is the lab work and appointments. I’m trying to take little breaks. We have an inflatable hot tub that I try to make myself stay in for the full 30 minutes the bubbles work. It isn’t too hot to take, it’s the guilt. I feel bad staying in there for a half hour. I need to work on that! I don’t go out with friends unless it is ministry related. I had one lunch this year where I laughed and was pretty much free to be me and relax. One. Wow.
3. It’s scary how many people lack compassion. As I read things from the Invisible Illness page, my heart went out to the different ages and situations people have. The replies they receive hurt to read. They are accused of being lazy, making things up. They are shunned from fun events because people don’t understand the need for breaks for rest, the medicines, or extra equipment that might be involved.
For us, there is so much good news. Her situation is not terminal and we have faced death with her before. Any day that doesn’t mirror that one is a victory. The news that I had to deliver this year about her bones fusing and her height is most likely finished at 4’8″ was met by her with relief. It meant no daily shots and the understanding she’d be the shortest in a short family. She is in a mainstream classroom with some extra helps and her grades are fantastic this year. She loves to sing, worship, and act.
She’s taught me so much. I wear a lot more sparkle than I used to. Life’s short, why not enjoy it? I stay strong in those appointments because she does. As God promised me when I was pregnant, this child is an overcomer. He’s proved that over and over.
To read my post about our daughter’s Invisible Illness Journey, read here.
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About juliearduini

Julie Arduini loves to encourage readers to surrender the good, the bad, and ---maybe one day---the chocolate. She’s the author of ENTRUSTED: Surrendering the Present, as well as ENTANGLED: Surrendering the Past. The last book in the series, ENGAGED: Surrendering the Future, is coming soon. Her devotional, FINDING FREEDOM THROUGH SURRENDER, features the surrender themes and characters from the series. She also shares her story in the infertility devotional, A WALK IN THE VALLEY. She blogs every other Wednesday for Christians Read, and starting April 2017, will be part of the Inspy Romance blog. She resides in Ohio with her husband, two children, and secret chocolate stash. Learn more by visiting her at http://juliearduini.com, where she invites readers to subscribe to her monthly newsletter full of resources and giveaway opportunities.
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