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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.

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.”
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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.

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.”

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.

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

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

“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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