There is Still Beauty in Chaos
/
Uncategorized /
28 Mar 2017
I love having this photo of my kids and their kidney donors having their photo taken a year ago. I mean, totally love it. I look at it and I remember was during a very hard time for our family because our daughter’s anxiety and depression. She was having a hard time staying in classes, she was sleeping a lot, completely unengaged in life and raging very nearly everyday. She was suffering greatly and during this photoshoot it really showed…she lashed out at all of us, including the photographer. On the way home she was inconsolable. When we got home she had trouble getting out of the car, unable to stand, her legs just didn’t work. I had to carry her tiny little body into our home while she was screaming at everything; life, me, her body, everything.
While we knew she was wasn’t eating much the couple of months, she finally yelled out – part in anger and part in disclosure – that she had been starving herself. Through her tears, she confessed she had done it as a way cover harming herself since I had instituted daily body checks for self-inflicted cuts because she’d also started some self harm months prior. She’d drop over 20 pounds of her tiny 117 lb frame by the time she painfully blurted it out.
This is the push and pull of real life. In this photo we are looking at an amazing time of having our two kidney donors who helped save our two children with our children, all together. On the flip side, our kids have suffered so much and our daughter was right in the middle of it a tormented life of pain. Both of our kids have received mental health treatment that’s helped and are still in some form of it, with treatments always being adjusted, as is going on for her right now because she is struggling still with growing anxiety since the end of January. We know anxiety can bring on more depression and more depression more despair and more despair can lead to suicidal thoughts and actions.
Organ transplants are incredible, as you probably know or can imagine. It can be hard to see the impact of a child living with a chronic illness and the fallout of the realities growing up with an illness. This is the truth about our life with the good of kidney function – depression and anxiety and the behavioral manifestations – that live among the amazing gifts we’ve been given through life-saving organ donation.
People will speculate that sharing this is harmful, but it’s not. It is shared with my resident kids’ permission. Why? They know sharing is powerful. Shame takes that power away and I refuse to let them have it as they navigate the world.
So, yesterday we celebrated 10 years of kidney function for one because of organ donation and today we talk about more life-saving treatment, in another form. With the life they’ve been dealt, my sometimes brave, sometimes scared, sometimes mad children fight on to move forward. They are an example to me to keep fighting to be better, do better and feel better. They are an incredible reminder there is still beauty in chaos.
Note: To support the site we make money on some products, product categories and services that we talk about on this website through affiliate relationships with the merchants in question. We get a small commission on sales of those products.That in no way affects our opinions of those products and services.
Share this:
About The Author
Julia Roberts
Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.