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Living with Anxiety

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I live in fear. Fear of my son’s anxiety. Fear that one day, the medicines won’t work anymore, and we will go horribly, helplessly backwards. Fear that I will be trapped in that never ending cycle of sensory issues, panic attacks and completely irrational screaming fits.

JD is almost twelve years old, so I know my fear isn’t rational. He has come so far in the past few years that anxiety isn’t really a part of our lives like it used to be. Thanks to the hard work he did learning coping skills with biofeedback, his amazing psychologist Dr. Fritz and finally a couple of medications, most people would have no idea he ever had OCD or anxiety issues. Yet there it sits, like a cat waiting to strike–this fear that anxiety may take over our lives again.

For years he would scream dozens of times a day. Because he has Asperger’s we couldn’t tell what was sensory, what was OCD, what was anxiety from what was just generally normal for autism. He’d scream if he was given a yellow stripe straw instead of a blue one. He’d scream if you changed the type of jelly on the bread. He’d scream if you turned on Veggie Tales at church instead of at home. He’d scream if someone or something made a noise he didn’t expect. You just never knew what would send him spiraling into a panic attack that he didn’t know how to come back out of. As parents, we lived our lives on eggshells, never knowing what would set the screaming off. I spent my first eight years as a mom going back and forth between being his chief comforter and being the bitch in his life who forced him to do things he never wanted to do. Sometimes the panic attacks and screaming would happen twenty or thirty times in a day.

The past three years have been rather quiet. Once he began taking anti-anxiety medications it was like a whole new child appeared. He was always giggly and sweet in between attacks, but now we see that virtually all day long. (He could be very Jekyll and Hyde as a young child) After a couple of years he has matured greatly, and we see a lot of growth and respect coming from him. Still, we often find ourselves walking on eggshells, waiting for the panic to come. I often describe it a lot like living with post traumatic stress disorder–only the trauma comes from your own child, the thing you love with a ferocity that will scare the hell out of you.

Last night the fear struck me with a fierce blow when we discovered JD has a large cavity on his front tooth. Now, if you’ve ever had a child with a sensory sensitive mouth, you may have some clue as to why I went into panic mode. A trip to the dentist with JD has never been anything but excruciating. We have always had to live with the aftermath for weeks after the appointment. He wouldn’t let the dentist even look in his mouth without knocking him out first. He had his first oral surgery when he was six to have a few teeth pulled and crowned, and now I’m fearful we are headed for that again. Since the first surgery he has learned to deal with his issues a lot better–even brushing his teeth nightly (though leaving a bit to be desired, he is brushing them)–so maybe his mouth isn’t as sensitive as it once was. Maybe the anxiety medications will keep him from freaking out. Maybe. Yet I sit here and shake, tears rolling down my face, envisioning the last time. When I had to carry him, kicking and screaming, into the dentist’s office. When I had to hold him down and hold his nose closed so he would swallow the pre-operative medicines. When he gagged that medicine back up all over me. The weeks of not eating and not trusting me because I’d forced him to do something he was terribly afraid of. The months of anxiety-fueled acting out in so many different areas of his life, as he worked through his own warring emotions.

I’m just not sure I have it in me right now.

I sit here and I tell myself the platitudes. God has this under his control. JD isn’t who he once was. He doesn’t freak out like he once did. If you look up at the picture at the top, you’ll see the JD I know now–happy, peaceful, smiling most of the day. And I try to hold on to those platitudes, but they are like whispers in the wind. For the fear? The fear is full of things I DO know. The fear is full of things I know to the very core of my being, the things I will never forget.

I haven’t had the courage to pick up a phone and call a dentist yet. I have gotten some excellent recommendations and I know that one day soon I will suck it up and dial that number. But for now, I am procrastinating, because I’m just not ready to face that yet. One day I will pick up that phone, ready to be the bitch he needs in his life. I will be warrior mom again, ready to fight anyone he needs me to fight–even if I have to fight him. One day I will be there. For now, I’ll have an extra glass of wine (or whiskey) and live another day in denial.

                                                            ***

This post is part of a brave blogging challenge arranged by Liv Lane for the students of her e-course How To Build A Blog You Truly Love.

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Comments

  1. Excellent at expressing where you have been and where you are. All the in between and progress has been because you are who you are. Hang in there Heather, you can do this . God is making you into an incredible woman.

  2. Martha Ann says:

    Cute picture! Thank you for sharing.

  3. What an incredible story! I give you a lot of credit for being so strong for your son’s sake. For being brave for him too.

  4. Heather you are a very strong woman, and your son is very blessed to have such a wonderful MOM to help him in his journey.

  5. What an incredible journey you’ve taken. Even if it isn’t today, you’ll have to continue to forge ahead, and I’m amazed at the bravery that takes. Stay strong!

  6. I was in awe of reading your story of what your life is like and has been with your dear child, JD. I personally think JD is blessed to have you as his mother, even when you have to be that Bitch of a mother for him. God’s love and grace will get you and your family through this.

  7. wow – I feel such a huge amount of compassion for you. Being a mom myself I can only imagine the torment and frustration you have felt. The love we have for our kids is so all encompassing it really sucks sometimes to have to be the one who “makes” them do those things that are necessary. I am sending you a HUGE hug as you work towards the courage of another battle for the cause. Thank you for being brave and sharing! Your son is lucky to have you

  8. “The fear is full of things I DO know. The fear is full of things I know to the very core of my being, the things I will never forget.” That makes a lot of sense. So often we talk about fear of the unknown. Fear of the known.. that’s a different kind of beast.

  9. I agree with Angie. Your fear of the known makes so much sense; and the dread you must feel. I hope and pray you are surprised by how your son handles the sensory stress this time around.

  10. Heather, Kudos to you for your bravery, again and again. And kudos to you for sharing your vulnerability with us.

  11. I love that… you are able to admit your human-ness
    …that you are able to admit his.
    I love that beyond medication your love and vigilance as a mom and protector is there and I am sure he can feel that.
    You are the light to his dark place and that is such an amazing roll to play.
    Thank you SO much for sharing, so bravely.

    • Someone taught me once that the greatest gift we can give to those we love is to choose to love them in their dark places. I took that to heart and have tried to do that, especially for my kids. I fall far short many days, but I try. Thank you for your words–they made an impact today. 🙂

  12. You know from the sounds of it, you may very well be experiencing some Post Traumatic Stress. Although your son has obviously come a long way, and you love him very much, I think the fear is not surprising. If you don’t already, I think talking to someone yourself might help a lot. I know I would need the extra support (and have sought help out myself at times.) We can’t forget to take care of ourselves. Care for the caregivers is important too!

    • Thanks. I have seen a counselor and handle it well most days. Yesterday was rougher than most, but blogging about it helped me process it a good bit. I recently quit my job so I could be at home and live a *slightly* slower pace of life. I’m relearning how to take care of myself! 🙂

  13. Thank you for sharing your fears so openly and bravely. Love can be so complicated can’t it when it comes to supporting the people we love by giving them what they need when it may not be what they want. Especially when clear communication can be so challenging. Your deep love for your son comes through in every word of your post. Em 🙂

  14. It sounds like your son has come a long way, and I really hope that he is able to handle the dentist now. I have anxiety and OCD, and I know how stressful it can be in an adult, it must be heart-breaking and all encompassing to see it in your child, when he has sensory and other Spectrum issues. You are a brave, brave mama. <3

  15. What a fabulous post to share! I have children with similar challenges and to some extent I think I can relate to the fear and frustration. Never knowing where the next outburst will come from. Not knowing how others around us will react… You sound like someone who has worked hard to be a powerful and effective mother and use challenges to help both yourself — and your son — move forward with strength. Wishing you a relatively uneventful dental appointment and future!

  16. You are never a bitch in his life– you are his MOTHER, which goes way beyond the always happy, smiling friend. It means being what he needs when he needs it. I’m learning this lesson every day too. I respect what you are doing. Take heart.

    • Heather says:

      LOL, oh yeah Stacey, I am. But I am okay with that role. I’ve forced him kicking and screaming into many a “normal” childhood situation, just so he could see that he can’t let fear control him. He may wear every protection device known to man, and he may not go deeper than his waist, but he gets in the pool, and that is a serious victory. It took years of me forcing him into the pool, six inches at a time, while he screamed bloody murder. He would hate me afterwards–but then he’d get back in and go just a little farther. It was worth it to see him break through and enjoy the water. Same with haircuts, eating out, riding a bike, and many others. I don’t mind the role, because I know it is what HE needs to be the most complete JD he can be. I don’t mind using that word to apply to myself when I’m forcing him through it, because that is how it feels to me. And I’m okay with that. 😀

  17. Oh, your motherhood journey is an intense one— thank-you so much for sharing— and congratulate and honour yourself for how much you have already done to help your son cope with life— bravely and strongly. love from Cheryl

  18. Heather says:

    Thank you everyone for your kind words. Being a parent of a child on the spectrum isn’t easy, and I’m sad to say there are millions of moms out there living a very similar story to mine. Yet it does come with its rewards, as I know the sweet joys of hard fought victories. Of knowing how brave and strong my boy really is. I will get a grip soon and go into warrior mode once again, but I’m not quite there yet. I did step my foot into the water today a bit, discussing his cavity with him and broaching the subject of the initial exam. He wasn’t thrilled, and there was a bit of fussing and curling up over some very minor descriptions of the exam, but no major freak outs so far. I did get treated to a very funny description of what “whacky gas” (laughing gas) will do to you, based on his YouTube research. So the big Sheldon brain of his has already kicked in and started to process it in his own way. 🙂

  19. Heather! I’m in such awe of you. You are such a strong, courageous woman. Thank you so much for sharing this part of your motherhood journey.

  20. I love the honesty and vivid details of this post. You’ve really given readers an intimate peek into your life and a sense of the toll raising a child with special needs can take on your soul. Your son is thriving because of decisions you’ve made and actions you’ve taken, but your own spirit has been understandably wounded by years of walking on eggshells with a child who holds your heart in his hands. Can you reach out for help for yourself to deal with the anxiety and fear? That was critical for me to do so when PTSD swooped into my life. I’m wishing you peace as you move forward with your wonderful child! He sounds like a total lovebug!

  21. What a glimpse into your world you have shared here. How wonderful it is that you have some resources that help everyone in your family thrive.

  22. I know your post touches a lot of people on a lot of different levels. Please feel the love you have invited in while sharing your struggles.

  23. Melanie says:

    I love how beautifully your post is written. Your fearlessnes, honesty, and heart just shine straight through. And, I so admire your strength in how you take on the world for your son. You are an amazing momma – thank you so much for sharing this part of your life with us!

  24. Heather, you are on a heroic journey with this child…you would not be human if you did not acknowledge this fear…I am so humbled by this post. And, I am so glad you are able to start taking extra time for you…JD sounds like a very very special soul, and you two are toe to toe on a huge learning curve this life time. How very brave of you to share this with us. Brava in so many ways!