Medically Complex Children

We Have Trauma Too

We Have Trauma Too

A friend’s child is in the hospital right now due to a heart condition. As I visited for a moment with her, I was brought back to all those times my child was in the hospital. How hard that is. There are so many maybes, and what if’s, and no guarantees. A mother’s worst nightmare.

This is a nightmare those of us in the special needs community are all too familiar with.

Mental health practitioners are recognizing more and more how medical trauma affects the children being treated. But what I don’t hear about is the vicarious medical trauma that parents suffer, and a light needs to be shown on it. Because it is real, and it is important.

An acquaintance recently posted about how she was having issues with her pregnancy and was being kept at the hospital for a while. But it was bringing back so many memories, triggering so much trauma from when her three year old was being treated for cancer and then later died.

In my work as a social work case manager, I remind parents daily about self care. I remind them how important it is to take care of themselves, I recommend that they seek therapy and healing.

So I’m going to remind you today too. The trauma you have experienced as you have shepherded your children through these illnesses and disabilities? It’s real. Don’t question it. Invest the time in yourself and your care. Seek out therapy, a listening year of a friend. Practice good self care. Your children depend on it.

But even more importantly, so do you.

Take Your Medicine And Other Self-Care Tips

Take Your Medicine And Other Self-Care Tips

“As parents of special needs children, we are preached a religion of self-care. We are told repeatedly we have to make time to take care of ourselves or we won’t be able to take care of anyone else. That’s all well and good, but when I was in the thick of the worst of special needs parenting having no idea what I was doing or how to make it through?
I wanted to punch every person who said that to me.”
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How I Made It Through the Past 15 Years?

How I Made It Through the Past 15 Years?

Yesterday, I spoke via Zoom to students and medical professionals from the University of Tennessee. The topic was, “What is it like raising my child with special needs.“ This is something I volunteer for regularly because it is so important to me that these young medical professionals have a small understanding of what is going on in the lives of the patients and families they see.

One of the questions I was asked was, “What do I do to be able to make it through the really bad times.” I thought that this was a really good topic for discussion here. Because if you have a special needs child, you deal with some really heavy things. Things that if you begin explaining to people who don’t experience things similar, will start slowly backing away and have a look of a deer caught in the headlights.

Our lives are different.

But we can still find beauty, peace, hope, and love even in the midst of the heartache and storm.

There is hope.

So what do I do that helps get me through?

My number one reliance is on God. When I reach that point where I can’t carry on, he has ALWAYS been there for me. He carries me through in sweet and miraculous ways. Like the time he actually sent someone to clean my bathrooms. I’m not making this up. He sent someone to do my most despised chore of all when I was at the end of my rope.

Finding, and making sure that I have things that bring me joy in my life is another thing that I hold tightly to. Fresh baked anything will always put a smile on my face. A good book, or British TV show brings a sense of calm to my soul I really relish. Playing or singing music, working in my garden to grow things of use and beauty. It makes me feel like I’ve really accomplished something and my soul rejoices in the beauty of what I have done.

Hot, long baths. This is my staple. When my children were small my husband had a very unpredictable work schedule. We also had very little money. Things people would think of for self-care, like going and getting a massage, shopping, girl’s nights out and vacations were very rarely something I could pull off. When you have kids like ours, even if you do have the money, finding a babysitter can be extremely problematic. So as soon as my kids were safely asleep I would grab a book and take a steaming hot bath. Water cools down? No problem, just add more hot water. I’m not sure I could have made it through if it weren’t for those baths. I have been known on occasion to take 3 hour baths.

Another lifeline was finding other people who were experiencing similar things. Parents who also had special needs children who had their own brand of unusual. One mom I know wore a football helmet every time she got in the car to protect herself from things being thrown at her while driving. I’m sure there was more than one second glass as she drove the freeways to and from appointments. But this is the kind of different we live in. Knowing that there are people out there that get why we do what we do, and can even top our story? It’s a God send. These are your people and your kid’s people.

So if you are wondering, “How can I make it through another day of this?” Try a few of these out. They helped me a lot.

My Greatest Hope and My Greatest Fear

My Greatest Hope and My Greatest Fear

“Two and one half years.

That’s the amount of time I have left until my son turns 18. Every time I think about it, terror grips my heart.”

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Holding a Job and Being a Parent of Special Needs Child is Often Incompatible

Holding a Job and Being a Parent of Special Needs Child is Often Incompatible

“The first story I’ll tell you is that of a single mom. She recently discovered that her daughter had serious medical issues. All of her sick leave and vacation now go to time off for medical appointments. She has enough for this year, but next year, she will likely burn through that quickly. Vacations will now be a thing of the past while she desperately tries to balance working, being a mom, and the care of her sick child. She is lucky. She has worked with the company she works for, for over a year and therefore is eligible for the government program of FMLA (Family Medical Leave Act). This act protects her job and ensures she gets time off- though unpaid, to care for her child.”
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Making Lemonade Out of Lemons

Making Lemonade Out of Lemons

My husband is away right now studying to become a EMT for his work. Something that normally takes 6 months to do, his job is squeezing it into 2 months. That’s a lot of medical info to learn in a short time.

The night before his first test we were on the phone and we did a couple of his practice tests together.

I discovered something.

I knew most of the answers or could reason them out. I’m pretty sure I could have passed his first test without studying at all.

Earlier in the week I was out to lunch with friends and one of the woman’s sons has recently had to have an ultrasound on his thyroid. Another woman’s child had to have X-rays on her torso. We were talking over their children’s results, and I was explaining some of the things.

I’m no doctor or nurse. I don’t begin to claim to give any medical recommendations. However after so many years, and hours upon hours in doctor’s offices, therapist’s offices, and testing facilities I’ve found I have picked up quite a bit.

If your child has to undergo X-rays weekly, then biweekly, and then monthly for an extended period of time, you’re going to start knowing what to look for. Because my son had had so many X-rays as a small child of his trunk with his gastro intestinal problems, I knew what I was looking at when we xrayed him to see how bad his scoliosis was recent. I didn’t know what the percentage of curvature was, but I knew where to look and what was what on the x-ray.

So I’m going to call all of this hard-won knowledge “lemonade”. All those lemons of medical issues for myself, and my family, has brought knowledge I can put to good use. Both for myself and others. I really believe that all knowledge gained can be put to good use.

Being Held Emotionally Hostage

“I was recently talking with another mom who has a child with mental health issues. While talking she used the term “emotionally held hostage.” Those three words struck a cord with me because so often in the special needs, disability, and mental health worlds it can feel like we are being held hostage. By our children, spouses, parents, and even ourselves through our own illnesses.”
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Feeling like a fraud

Feeling like a fraud

“And so I sit here, trying to understand that because my life is not filled with trauma causing events, and has really calmed down in a lot of ways, that it makes me feel like a fraud. As mental health is my chosen field to study and eventually work in… This makes me want to dig into this further.”
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Love Doesn’t End With Death

Love Doesn’t End With Death

“He may have been old and sometimes cantankerous when I knew him but these memories coming to mind, reminded me of the deep love he had for his family and how he was always there whenever we needed him.”
Read more. . .