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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.

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.

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.

MASH and Autism

I have fond memories of laying on the living room floor watching MASH with my Dad when I was little. My husband spent 23 years in the military so he’s a big MASH fan. My kids surprisingly love it too. But what does MASH have to do with Autism?

My husband found a book written by the actor who plays Father Mulcahey in the MASH series. It turns out, he and his wife raised a son with Autism. The book details their struggles to find answers and help for him.

If you follow me on Goodreads- or even here for that matter, you’ll know I read a lot. Last year’s number of books read was 108. But there is one narrow genre of books I almost never read any more.

Books about Autism.

When our son first received his diagnoses I over indulged, and then the life that was being described within the pages of the books became all too real. I just couldn’t.

My husband encouraged me to read the book Mixed Blessings by William (Father Mulchey) and Barbara Christopher. So I read it.

Their journey started 50 years ago. I found the book both fascinating and horrifying as I read what they tried, what was recommended by professionals at the time, and how much dedication they put into trying to help their son.

But overwhelmingly? I found it unbelievably depressing to find that things haven’t changed all that much. That many of the things they struggled with- IEP’s, doctors, therapies, shear exhaustion- we are still dealing with these exact same issues 40 and 50 years later. I can’t tell you how heartbreaking this is to realize.

This is why I don’t read books on living with Autism.

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…

Judging A Right To Life or Death

“A couple of years ago, I took a college class entitled Death, Dying, and Bereavement. It was a fascinating class. We talked about different types of death, bereavement, and the act of dying. One of the topics covered was whether people should have the right to choose their death when they are terminally ill. I learned something really important from that class.”
Read more…

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.

My Christian Friends Who Have Left Church

I have seen your heartache. I know the person you are. You are people I dearly love, who I know have hearts of gold.

My heart cries out for you because of what you have been through!

This one has a child who is transgender.

Another was sexually assaulted by a man in authority and then told she deserved it.

Yet another, questions the very existence of God because of the many trials that they have gone through because why would a loving God put her through that?

Another just never felt close to God and no matter what he does, he feels nothing.

Oh, how my heart bleeds for you all!

I see your pain and anguish.

I don’t purport to know all the answers. I wish I did. I’ve had my own path to walk with things I have had to plead for help and understanding.

My path hasn’t been yours.

But with everything I have been through, with the answers I have found, this is what I know:

God knows the answers.

And even more than that, he understands.

I think one day when we are able to have a conversation in person with him, he’s going to clear up a lot of confusion for all of us. He’s going to know that one person dealt with life long depression which made it extremely difficult to feel his presence. He’s going to take that into account.

He’s knows the horrific experiences you went through and the effect they had on you. That you were blamed and told you deserved it. That for your own health you had to separate yourself from the church. I believe he has compassion and love for you and he’s going to understand that you did the very best you could.

Sometimes we get so caught up as Christians on things we think we are supposed to do, that we forget the core principal of the gospel of Jesus Christ is love.

We forget that those who have made different choices than we have, deserve love and respect.

We want to grade someone else’s sins greater than our own, and regard them as less worthy. But we don’t get to make that call. Only God does.

So when all is said and done, and judgement is given, I think we’ll see a lot more of those people who left the church, unable to walk our traditional ways, with God. Even if I’m wrong, God says to love him and love others, so I’ll keep walking that path and keep reaching my hand out to you in friendship.

Just because you left the church doesn’t mean God, nor I have to leave you.

So we’ll be right here loving you.