Extraordinary

We were exhausted. Tired and emotionally raw. Our little boy was finally stable and home from the hospital. He was in so much pain that I was actually surprised and relieved he’d finally fallen asleep. He was almost two and had given us quite the scare. His feet seemed to stop working and he vomited relentlessly until it became red and streaked with blood. He had no fever and every test had yielded normal results. His discharge papers read, “Undiagnosed. Suspected underlying neurological condition.” We were given referrals to neurology and GI, prescriptions and sent home. It was a beautiful summer day and our little boy slept in the carrier as we walked to the pharmacy to fill his prescriptions. Standing on the corner waiting for the light to change, I became so lost in thought pondering what could be wrong with my precious boy that I almost didn’t hear her.

My husband’s abrupt “Excuse me!?” snapped me out of it. I looked up to see the whole street corner staring at us. I felt immediate confusion by the appalled look on the woman’s face. What happened? Did we do something wrong? I could think of nothing. We were just standing there waiting for the light. She had aggressive body language, matched only by the angry look on my husband’s face. “I said he’s old enough to walk,” she said gesturing to my child sleeping soundly against my husband’s chest. I stood looking at her my mouth literally gaping. Did she really just say that? People were staring at us, waiting to hear what we had to say. I instantly became self-conscience. I wondered if everyone felt this way? I spent the last week in a nightmare and had just been told my sweet child probably has a mysterious neurological disorder. Now I felt like the whole world was judging me for it.

We just stood there silent. It was as if we both decided simultaneously that she was not worth engaging. My husband’s jaw was tight and I could tell he was upset, but he turned his head and ignored her. But apparently our child in a carrier was too much for the woman to take. She reached out and tapped my husband on the shoulder forcing him to acknowledge her. “You are not doing him any favours treating him like that,” she snapped, “He should be walking!”

I was truly caught off guard. I was humiliated as I looked around at all the people starting at us. Was she really questioning us as parents!? Especially after all we’d been through to help him!? Could this one act of carrying our sick son be enough to announce to the whole world that we were not doing right by him? I felt so judged…so isolated…so misunderstood. It made me feel all alone and inadequate. I wanted to do more for him, but how could I? I was giving him everything I could.

Sanding on this corner looking at this woman, I tried to think of something clever to say to make her understand. But, in my emotionally exhausted state, the only thing that came was stunned silence. My husband, however, was not as lost for words as I. He said to her softly, yet firmly, “Not that it’s any of your business, but he has some neurological issues and was just released from the hospital earlier today. So no, he can’t walk right now.” There was an audible gasp amongst the audience. No one expected this response and all eyes turned to the woman to hear what she would say next.

She was stunned. Her indignant self-righteousness was fading, but not gone. She looked at my husband still holding her aggressive posture and said flippantly, “Well, I didn’t know that.” I was surprised by this response. It was as if her lack of knowledge made her actions justifiable. “No, you didn’t,” My husband retorted. “And you may want to consider that fact the next time you feel the urge to walk up to parents and publicly judge and insult them. We are doing everything possible for our sick child. The ONLY one not doing him any favours is you.” And with that she turned around and ran away.

This short interaction has had a lasting impression on me. And not just because of her audacity, but because I can relate to what she was thinking. While I have never walked up to a mom and criticized her, I have thought things to myself not too dissimilar and it made me feel awful. Here I was in an extraordinary situation wishing that others would understand and I was guilty of thinking the same things as she. My husband’s words hit me like a hammer. I had silently judged without stopping to think maybe I didn’t have all the information. The thought that I could have dismissed a mother in desperate need of support, a mother like myself, deeply bothered me.

It was not too long after, I witnessed a scene in the cereal aisle of the grocery store. A woman was standing there watching her son flip out, doing nothing to control the situation. He was maybe four and was sitting on the floor screaming at the top of his lungs with his hands over his ears rocking back and fourth. As she stood there watching, a man walked by and scoffed at her. He was trying to maneuver his cart around the screaming child. He said to her, “Lady, control your kid. People are trying to shop.” Now, personally, if this were my kid I would pick him up and leave the store. A week ago I would probably be thinking something like, “Why isn’t she removing him from the store?” But just coming off of my public judgment on the street corner, I decided to change my approach of silent disapproval. I too had something to say to her. So I walked up and said it.

“Don’t worry,” I said in my most sympathetic tone, “This was my whole day yesterday. Gotta love life with toddlers.” The woman said nothing. “Honestly,” I continued “it happens to all of us. Don’t worry about it.” I said gesturing to the man who was now further down the aisle. The woman broke into tears. She explained that her son was recently diagnosed with Autism and he would freak out for unknown reasons. Right now, in the cereal aisle, she had no idea what triggered the episode or what to do about it. She did know that touching him or attempting to move him would only worsen his hysteria. My heart sank at her story. This woman was in an extraordinarily difficult situation and doing everything she could. Sadly she was only met with judgement. As I reached for my box of Cheerios, I told her to hang in there. I reassured her that she was doing a good job and was a good mother. To my surprise she grabbed me, hugged me and said, “I really needed to hear that today.” Her words hit my heart and echoed what I have felt so many times before.

Over the years I continue to think back to those two events and they have been forever burned into my soul. Because of these two random encounters I feel compelled to offer words of encouragement to parents who I catch publicly struggling. I force myself to smile approvingly at parents who seem to be doing the odd and unconventional and I am constantly surprised. I’ve met a wide range of unexpected and extraordinary circumstances. The eight-year old girl who was saying mean things at her mom in the kitchen store was angry that her dad had just been deployed to war. The mom who was indulging her son with candy every time he fussed was fighting cancer and had no energy for a battle of wills. The dad who was on his phone at the park while his son begged to be pushed on the swing had just lost his mother. In years past, I might have silently disapproved of these interactions. But because of one mean stranger I was able to offer words of encouragement, load a tired cancer patient’s car for her and push a grieving man’s son on the swing. The more extraordinary situations I uncover, the more I realize that at one time or another, we all fight something extraordinary. Things that make us feel alone and desperate. And desperate times call for desperate measures. When these things happen, we do what we must to survive. Sometimes that means our parenting choices look strange. These are the times when the world feels harsh, but we need it to be kind. I truly believe that if anyone should have compassion for parents, it’s other parents. What we really need is support, not judgment.

So to the random lady on street, I can’t thank you enough for making me realize this. You hurt me and embarrassed me. But, you made me realize that I was guilty of forgetting that my battle is not an isolated one. You reminded me that we all struggle and that none of us have the whole picture. You changed how I see others and how I approach them. You connected me to my community and gave me compassion for the unconventional. But mostly, you opened my eyes and showed me something extraordinary.

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21 thoughts on “Extraordinary

      1. Thank you. From what I read on reblogging it should automatically credit you as it directs people straight to your site but will credit you anyhow and send you a link. I hope you and family are all ok. Take care

        Liked by 1 person

  1. Thank you for sharing this. It is a natural reaction for people to judge and try to make sense of situations, but of course we cannot know all the facts. It is wonderful that you really looked at this from so many points of view. Hope your son’s health is improving. God bless you.

    Liked by 1 person

  2. I just wanted to say thank you. A friend had this linked on Facebook. My husband and I have 2 teenage girls, and both are having different issues right now. I have one that is cutting, and that was a blow to my husband. She is a beautiful girl who is talented and wears her heart on her sleeve. But we didn’t see the signs for a while. When we finally did we confronted her. We are trying to deal with it as a family right now. But it’s hard. Our oldest doesn’t want to attend the church she was raised in. That was also a blow to us. My husband has also lost his job for the second time in 4 years. I won’t even touch my own health issues. But I worry most about the choices we as parents try to make for our family. Sometimes some of our decisions we don’t even have family support for, but our bishop helped and told us we were on the right track. That helped alot. But kids don’t come with manuals. And trying to raise them now a days is hard. They have so many more temptations than we ever did. They also have more things that are distractions. It’s something we talk about alot. We parents who are trying to do the right things for our children need support too. Not to be judged. Again thank you for your article I so needed it today.

    Liked by 1 person

    1. Athena, I just wanted to give you a hug when I read your reply. My oldest daughter has also left the church, and wants nothing to do with our family. Last year I had to rush my teenage son to the hospital after a suicide attempt. We discovered that he had also been cutting. I felt like a total failure as a parent, and didn’t know how to go on. I was afraid to ask for help because I didn’t want to be judged. Since I didn’t fill my extended family in on the details, rumors were spread, making it so much more difficult. There were times that I just wanted to hide from everyone and everything. Eventually, I was able to turn it over to the Lord, who gave me the strength to carry on. I know that He loves us, and will help you through this time. He also loves your precious daughters and will guide you through this difficult time. Trust in Him and His love. It will get better.

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  3. I appreciate this so much! I have three young children, 4, 2 and 15-months, and that in itself is a handful; But 14-months ago my husband was diagnosed with end stage renal disease and has been doing dialysis 4xs a week and in and out of the hospital a handful of times in the same amount of time. It has thrown us into full-on survival mode, and I am often found at the end of my patience and my resolve, and wishing I were in the privacy of my home when it all falls apart rather than in the “breakables” aisle of TJ Maxx!

    This post reminds me of the quote “Be kind, for everyone you meet is fighting a hard battle”. It can never be said enough. Kindness is always the best response. Bless you and your little family, I hope they have found something to help your sweet little one.

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  4. I’m a school psychologist who works with your children every day and I see my role as also one of support for you marvelous parents who are all doing the best that you can. I am going to re-post this to my page on the school’s website – I hope that some of the people who need to see it, will.

    Liked by 1 person

    1. Thank you so much! I am so glad to hear you liked it and thought it was worth sharing😊. I only ask that you credit me and provide the link to Raising Dystonia. I hope it helps those that need it. Thanks for reaching out!

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  5. Thank you so much for this thought-provoking article. As a mother whose son struggles with SPD, and has recently lost her mother (and best friend) to cancer, I could completely identify with your words. I too used to judge other moms without even realizing it. My recent experiences have opened my eyes and heart to more readily have compassion for others-especially other mothers. Thank you.

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  6. Very powerful read. I’m bookmarking it. Thank you for sharing this. As a mother of a boy with Selective Mutism and lots of sensory issues, and a suspicion of Autism, I know the feeling of being misunderstood, and judged, and isolated all too well.

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  7. Hi Heather,

    Thank you for sharing this very personal experience. It can be hard to talk about what feels like a “low” point for fear of further judgement. You really gave me a new perspective on things though. I do try to check myself on judgemental thoughts, but I never really considered that I also need to do this for people who don’t seem to “deserve” the benefit of my doubt. Carrying my resentment from interactions like this is only bothersome to myself.

    I also really wanted to ask, how is your son? Did you ever get a diagnosis? I hope things are working out for your family.

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    1. Nola, Thank you so much for you kind and supportive words. ☺️ my son is well. He (and his little brother) was diagnosed with a neurological movement disorder called Dystonia. We continue to search for answers and ways to help. Thank you for reaching out, and thank you for reading!

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  8. Wow, Heather – this left me spent. In merely a shadow of the way you must have both felt – your hubby and yourself.
    I’ve always rather likened Dystonia to Parkinson’s child-hood, but this is woefully inadequate.
    I am stunned by your candid retelling of something so brutal and, at the same time, so beautiful – it’s downright humbling, and I am sincerely grateful!

    Like

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