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My Peace I Leave With You

“My peace I leave with you. My peace I give unto you. Not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.”

John 14:27

Of all the verses of scripture, this is my favorite.

It centers me.

It pulls me forward reminding me I can do hard things.

Who doesn’t want peace? Who doesn’t need peace?

I grew up as the oldest in a very large family- 11 kids. While we ourselves weren’t a very loud family, with all those people it could get loud and chaotic. I was a teenager when I found this verse and it brought me great comfort.

A hand reaching toward the light — Image by Jackson David from Pixabay

As I have grabbed hold of my courage and pushed my way through the hard things, this verse has sustained me. As I have dealt with the things that make you fall to your knees in helpless surrender this verse has held me.

Will It Be My Fault?

I sometimes think back to the early years of my kids lives. They were born in 2006 and 2007. Until 2015 I dealt with debilitating back pain. In 2013 I had my first back surgery which didn’t work. In 2015 I had my second surgery and almost 8 years later I’m still doing well.

But those early years meant a lot of mom laying on the couch or bed, trips to doctors, emergency rooms, and chiropractors. When we were preparing for my second surgery my daughter was terrified what would happen to her and her brother. She remembered that after the first surgery I couldn’t do much. Who was going to take care of them? Who was going to feed them?

As I remembered this today, it struck me that my husband and my roles are reversed now. He is frequently in hospital, or at doctors when I can drag him there (men!)., in bed and not feeling well. Now they worry about him.

Who is going to be there for them when he cannot?

Parents are central to a child’s survival and psyche. It is from them a lot of our self talk comes from. It is from them often we learn to rely a lot on others or be very independent.

I worry that because of all the physical pain I was dealing with, which in turn greatly affected my mental health, I was not enough. Add to that dealing with other people in the family’s mental health and the strain it put on me.

Did I raise children who will sit on a therapist’s couch one day because their mother ruined them? Because she wasn’t emotionally or physically available?

As they are teenagers now, I wonder through these years of their hating me one minute and breaking down to tell you they love you the next. Did I fill their needs? They were fed and clothed.

Triggers: Because of Trauma

I haven’t been writing as much about my son and his special needs. There are a lot of reasons for that. Part of it is because as he grows older I have come to realize that it is his story to tell and he deserves to have that right to share when and if he pleases.

At the same time, I have a story too, and I think it’s important to share my story and be honest about what it is like raising a child with special needs. This story hasn’t ended even though I share less about it. This story is part of who I am now.

The end of May marked the end of school for my children and they are out for the summer. Their Dad and I both work so they are home alone and are probably loving that we aren’t there making them get up before noon as they are teenagers now.

About seven years ago, we started using doorknobs with key pads. At that time our son was really struggling. It was for safety so that when things got out of control his sister and I could escape to a room to be safe. We also use them on our pantry because he cannot control his eating. He has access to plenty of food, but having a place he cannot get into ensures there’s some food left over for the rest of us. These doorknobs have worked REALLY well for us.

As I said, my children are home for the summer, and my daughter didn’t want to get out of bed yet and get the Cheerios out of the pantry that my son wanted for breakfast. So she told him the code.

SHE TOLD HIM THE CODE!

We started using these doorknobs when the doctors were telling us to send our daughter to live with someone else so she would be safe. During a time when she was thrown into a coffee table with glass that broke and had bruising all over her torso. During a time I had to go have X-rays to ensure my back was okay after being kicked right after back surgery.

This has not been our story for the last couple of years. He’s much calmer and more in control. Food is still very much an issue, but safety is less so at this time.

But what I didn’t realize is the psychological comfort those doorknobs provided me, knowing there were places he couldn’t get to, where we could be safe. This loss has triggered my anxiety big time. It really caught me off guard. Add to that, it was during a time when my husband was out of town, the one person who could control our son when he got out of hand.

I DID NOT FEEL SAFE.

Nothing in my son’s manner caused this. He was doing his usual things and not being threatening in any way. But this was my response to the situation.

Because of trauma.

My trauma response was to immediately feel threatened. For my anxiety to spiral out of control quickly.

This is my story. My response. It isn’t wrong or right, it just is.

Knowing this, I can name my reaction for what it is. I can understand that my reaction is a normal reaction due to my experiences.

I give myself grace.

That being said, it’s also okay to know that I might have to take more of my emergency meds for a while. That things that normally don’t trigger me anymore may start triggering me again. It’s something I have to work through. Whether we get new doorknobs that he doesn’t know the code to, or I learn to let go and breathe, or something else. I will work through this.

This is my story and I choose to tell it.

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.”
Read more…

I can do hard things

Tonight when the demons in my head want to take over, I’m reminding myself that I am amazing and I have accomplished things that I dreamt about for years.

I graduated college. I have a BA in psychology. Other people had that. Not me. But now I do.

I’m getting my Master’s degree in Social Work.

I am a published writer.

Yes, my brain and other people are tearing me down and screaming at me that I can’t do anything right.

But the evidence?

The evidence is that I have survived 16 years of special needs parenting. And that is an accomplishment.

I survived 19 years of being a military spouse. Not everyone does that.

I crawled my way though years of severe back pain and 2 surgeries. And I came out the other side.

Anxiety, depression, people who don’t like me and think I’m worthless?

You won’t win.

I will get back up.

I will NOT give up.

I might have to stop and regroup. Give myself breathing room and take my meds.

That doesn’t mean I’m weak or incapable.

It means I am smart enough to recognize when I need help. I’m strong enough to get back up. My brain and the naysayers don’t get to win.

Because I am enough!

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.

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.

Are You Heard, Seen and Known?

A universal need.

That’s what my social work classes call it. The human need to be heard, seen, and known. It was a central feature of my first grad school class. It’s something that has been in my thoughts a lot over the past 7 weeks. I’ve talked about it with my Mom, my friends, and taught a lesson about it at church.

And here is what I’ve found.

It’s true.

We need to know that someone, somewhere knows the real us. That we are seen for who we are. That our wants, needs, and desires are heard by someone.

One of the hardest parts of living through the pandemic has been a disconnect from the ways we usually get those needs met. Friends and family have had to social distance. Events and celebrations were canceled. I met with the sisters in my church and we discovered that all of us had been feeling very alone. We felt like no one understood us. Many had felt that maybe church wasn’t the place for them anymore, they were isolated and felt like they didn’t belong.

I watched as everyone drew a huge sigh of relief to discover that they weren’t alone. They hadn’t been the only one person thinking these crazy thoughts. They weren’t the only one struggling to find a way to meet these needs. Our hearts ached as we listened to our sisters tell their stories that we didn’t know were hiding beneath their pasted on smiles.

So we made a plan.

It’s just in its beginning stages. But we realized that somehow, some way, it was vital that each of us felt heard, seen, and known. We made plans and commitments, both individually and as a group, to do even just one percent better at reaching out to each other and checking in. Because if we all did one percent better, that one percent multiplies like compound interest.

It is a couple weeks later and I have reached out to a few women who were on my mind. Nothing earth shattering has happened, but they now know that someone, somewhere was thinking about them, and if that helps them feel even a little less alone, I have succeeded.

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.”
Read more…

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.”
Read more…

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. . .