It’s Okay to Not Be Okay: Dealing with Secondary Trauma

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It’s Okay to Not Be Okay: Dealing with Secondary Trauma

It's okay to not me okay: Dealing with the Reality of Secondary Trauma.

I’m going to be real and honest here today. If you don’t want to hear it, if you only come to this blog to read about large family organization or that time my son begged to keep a dead mole as a pet that’s totally fine, you can skip this post. I am writing it because it is cathartic to me to write and I just happen to have a built-in audience.

When Trauma Becomes Part of Your Life

I think most people who know me in real life would describe me as calm, laid back, and probably funny. It takes a lot to ruffle my feathers. I have the God-given ability to stay calm in an emergency (even if I’m freaking out on the inside). I can manage the crisis and shed my tears later.

But here’s the deal. I have been living in a state of non-stop stress for years and I have come to the point where my mind and body can’t deal anymore. The stress began in 2011 when it became apparent to Chuck and myself that Apollo wasn’t just a fussy, unsettled baby, but that there was something much deeper going on. During repeated visits to doctors (and eventually the Children’s hospital) we were told over and over he was fine. Then we were told he had a milk allergy (there was no science or testing to ever back this up) and reflux. We were brushed off over and over until I eventually began to wonder whether or not I was imagining his health issues. Was I exaggerating them due to some deep-seated need for me to have a sick baby? This made no sense, of course, but neither did our repeated visits to doctors who told us our son was just fine.

Things came to head December 22, 2011, when Apollo choked so badly I had to have my 10-year-old son call 911 and talk to the dispatcher why I repeatedly performed the Heimlich maneuver on my toddler. That night of my life was so traumatic I never wrote about it in detail on my blog (though it is detailed in the book I am writing). After that night Chuck and determined that we would not stop calling the doctor until he ordered an MRI or referred him to a cardiologist.

Answers and Escalation

On January 18, 2012, Apollo was diagnosed with a rare congenital heart defect, a double aortic arch. What should have been a quick, “non-invasive”, one-and-done surgery led us to a years-long roller coaster of surgeries, misinformation, and chaos for our family. As life would have it, just as Apollo’s health began to stabilize and things calmed down to bearable on the medical front, another son’s behavior began to escalate. I then had to coordinate visits to hospitals and specialists for Apollo with visits to psychiatrists, psychologists, and evaluations for our other son.

Our life changed. Our family changed. I changed. I was getting less crunchy by the day. I sold my cloth diapers. I bought frozen chicken nuggets. I put my kids in public school. And, of course, none of this happened in a vacuum. I still had a house full of healthy, typical kids. They went to college and got married and had appendixes rupture.

 The Blame Game

Our son with autism and FASD can no more control his behavior that Apollo could control his health issues. But you know what? Apollo’s heart defect doesn’t come with built-in judgment. No one has ever told me that I need to “get control” of Apollo’s heart defect. Nobody ever told Apollo he needed to get over it and learn to eat. No one has blamed Apollo, no one has blamed me. People have nothing but compassion for a curly-haired toddler hooked up to a feeding tube. A teen boy with autism and FASD? That’s a different story entirely. Everyone has a few words of “advice” on that topic…

What is Secondary Trauma?

Six years of non-stop stress have taken their toll on my body and mind. I am no longer the calm, laid back woman and mother I used to be. I feel like I am in a constant state of stress. If I am not dealing with an actual crisis I am anticipating the next one. I suffer from Secondary Trauma and I finally did something about it. I went to my doctor and told him I could no longer handle the stress in my life. I don’t ever feel calm any more. I go to bed feeling stressed, sleep poorly, and wake up feeling stressed. When a situation escalates, I have trouble coming back down to what used to be my “baseline”.

I don’t get time off. Chuck not only works long hours but he works out of town. This means 99% of parenting is on me. I didn’t get a break when I was in New Zeland last year. I was still fielding almost daily texts, messages, and emails to deal with crises from a world away. There is no rest for wicked they say and there is also no rest for this special needs mom.

{Let me interject, Chuck is an involved, active parent. However, working out of town means I am fielding all phone calls and emails and most meetings and appointments. I was dealing with the issues from New Zealand because I could check messages and respond to emails while Chuck was at work.}

Self-Care

I recently planned to go a walk, in the sunshine, with a friend I haven’t seen in months. After that, I was going to head to an autism support meeting (this would have been my first) and last week our church had a mom’s night out. Those are all things we call “self-care”. I missed every single one of those events due to escalated behavior. It seems the harder I try to work on a little “self-care” the less it works. And then I am even more frustrated because my plans were “ruined”.

At any rate, my doctor listened. He ran the appropriate blood tests. My fatigue is a frequent topic on this blog and I can now tell you with certainty that my thyroid, my iron levels, my everything is just fine. As you know I exercise regularly, I have started to take magnesium which is supposed to help with sleep. And now, I will add in meds for anxiety and depression. While I wouldn’t necessarily describe myself as “depressed” and I certainly don’t feel “sad” my doctor said, “I think your brain has just had enough and it’s taking a toll on your body”.

So here I am. Why am I taking the time to write this all out and share this with perfect strangers? Because, as I learned recently at Refresh, it’s okay to not be okay. And by sharing this, maybe someone else will realize that too.


You might also want to read The Stigma of Hidden Special Needs.

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16 Responses

  1. Thanks for sharing!
    I only have 2 little ones so far and I’m more than happy that they are perfectly healthy in every way. But you know how it is with little ones around who make more mess in the second you turn your back on them than you could have ever imagined. However- they’re only normal kids and act as kida their age usually do.
    Life with healthy little ones is often exhausting, but perfectly manageable.
    I can hardly imagine how it is with a whole lot more children, some with special needs, some of those even life threatening. No wonder you can’t calm down anymore 🙁

    I really hope your prescriptions help you get some rest! Take care of yourself and try to put yourself first sometimes, even if it’s just once a month!
    Hope you’ll be able to find some peace!!

  2. Marylynn Snyder

    So many mothers needed to read this! Thank you for being transparent. And speaking from experience with medicine..give it time..like maybe 2 months to see good results. Our brains and nerves need healing/rest. Be patient with yourself. Praying for you sister.

    • Thank you. I am two weeks in and the doctor said to give it a month before we decide if it is working.

  3. As I health care professional (and as a person in general) I applaud you for sharing this. I give you lots of credit for acknowledging that you were struggling and sealing help. I know that’s not an easy thing to do. What I mean to say is thank you, and I wish you the best of luck.

    • Thank you. I waited way too long before admitting to myself I wasn’t okay and even longer before I got up the nerve to go see the doctor about it. I am so glad I did, though!

  4. You are such an excellent mom and person. Thank you for sharing your journey with us all, it is so valuable.

    • You are welcome. I figured it was worth it to write this if it helps someone else admit they aren’t okay and gives them the courage to ask for help.

  5. Stephanie Mazzon

    I would like to clarify. I also do not feel depressed….ever….but the meds have helped me to cope. My son tho medically stable still suffers from life long kidney disease. I cannot imagine dealing with one son’s critical health needs and another son’s critical behavior needs. All you can do is try to take care of yourself and Pray, pray, pray……xoxoxoxoxo RENEE!!!

    ssm

    • Thank you so much. I think it is impossible to understand the toll a sick child takes on a mother unless you have lived through it.

  6. I’m in Australia but if I was in your neighbourhood I would offer to help, even if it was just sitting down and having a cup of tea with you. You do an amazing job and I hope you feel better after taking meds. I’m was also feeling fatigued, which everybody was putting down to the weather (it was a long hot and humid summer here) but my doctor tested my blood for lots of things and found I was low in iodine. Maybe that might be worth looking into. Hope you feel better soon.

    • That is so kind of you! Yes, the doctor ran a full panel on my blood. I am taking Vitamin D (everyone here is low on it due to the position of the sun) and magenesium….lets hope it helps!

  7. Hear, hear. I have two kids with special needs, too. However, I would encourage you to look deeper into thyroid and adrenal fatigue. Constant stress and trauma can damage those organs. My blood levels came out “right” everytime, but I have Hashimoto’s disease. It’s common to have a low functionning thyroid with “normal” TSH levels. If you are interested, check this web site https://stopthethyroidmadness.com/. It’s helped me a lot. I was able to find a knowledgable doctor, who did the right blood work, as well as an ultrasound which everybody refused to do before since my blood level were “fine” (turns out I have nodules *and* an enlarged thyroid!!). She gave me the right medication and I am a new person. I have also lost all the weight that would not go away (even when I spend a whole year walking 2-3 hours a day), have amazing energy, fell much more relaxed, my mind functions much better, etc.

    • Thanks for the link to the website. I have done enough reading to know that even with “normal” thyroid levels that doesn’t mean everything is okay. I am guessing adrenal fatigue is something that plagues me given my years of stress.

  8. Yes. So much yes. It’s ok to not be ok. I feel you. I’m there. Foster mom of 4 (2 trauma babies, 1 special needs, and 1 neurotypical) and a 911 dispatcher. I live in a constant state of stress. Thank you for sharing, it makes me feel normal.

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