Peace, also Sadness

Since I wrote that last, infamous, Costco/disaster post, several things happened.

It got shared. A lot.

Ksl.com wrote about it.

Lots and lots of people responded, and many of them were absolutely vicious in their condemnation of me. It was a level of vitriol I have never before experienced with anything I’ve written.

I sustained PTSD after reading only a sampling of the cruel comments that strangers wrote about me and Jack. I am not kidding when I say I was traumatized.

I needed resolution. I wanted to let go of the anger I felt toward the haters. The night before Easter, I took Jesus seriously. I visualized myself printing off every last mean-spirited comment, placing the pages in a shoebox that Truman is currently using for his rock collection, and wrapping it tightly with bungee cords. In my mind’s eye, I then solemnly carried that shoebox of hate and set it on the sacrament table in the chapel of my church. I put it on the altar, basically, and I left it there. When I woke up Easter morning, the burden was gone. I felt better.

I had a beautiful Easter Sunday. I felt thankful for the Savior, whose suffering paid for my trauma, Jack’s disabled life, the haters’ bad behavior, and every unfairness and sadness and wrongdoing that ever was or will be.

I thought a lot about the irony of angry, condemning people reading that post, wherein I am vulnerable in my honesty of the nature of parenting a severely disabled child, and where I also talk about this daily work as a sacred gift to Jesus Christ, who sustains me through the horror of it. The irony of the people who angry-commented is this: they couldn’t see any of that. They saw only themselves and an unwillingness to share a public space for a few moments of one day of their whole life with a person with isn’t mentally “perfect.”

I decided I didn’t want to be like them. I wanted to see past the ugly behavior and forgive the imperfect people who lashed out, condemning my family. I wanted to do what Jesus would do, not because I feel love for people who hate me, but because if Jesus loves them, then they must have the capacity for good. The atonement can heal their ignorance, as it can heal Jack’s disabilities and my shortcomings.

Jack had surgery today. This involved setting our alarms for 4:45 AM, but then actually waking up at 3:45 AM, because Jack was having a dance party in his room in the wee hours. Whyyyyy? We checked in at pre-op at 6:00 AM and were home before noon. There were no behavior problems. Jack did scratch one spot on his face when they put the anesthesia mask over his mouth, but that was the only blood. He was a good boy. Miraculously, we were able to arrange for dental work as well as his ear tube/ear cleaning.

While everything with the surgery went smoothly this morning, I am at a level of exhaustion that is stunning, even to a veteran SN mom like me. I am wasted. This is when I weep openly, pray aloud in desperation, and retrench to survival mode. Put one foot in front of the other foot. Take the day one minute at a time. Hold on through this meltdown and that aggressive behavior and all the screaming and the rigid demands. Hang on a little longer. Reduce expectations and forget about the rest of the world. Survive this day with my family, and then get in bed and thank God that He brought us through it.

A few other deeply emotional things happened too, but I am not at the point of publishing them here, particularly after last week. I’m working privately through my grief on a few issues. I feel peace, but also sadness.

You guys, I am tired of being the face of disabilities awareness. I am tired of the impatience, the judgment, the looks, and lack of concern or understanding by some. I am tired of putting myself out there, of stepping into the arena (as Brene Brown describes it), and being a perpetual vivid, visual example of imperfection and struggle.

I am weary of it.

I told Jeff that perhaps the purpose of this blog has run its course. Maybe it’s time for me to fly under the radar and just live, carrying my enormous burden without the magnifying glass of the internet and ill-mannered strangers weighing in on how I should be doing things.

Jeff, who is a deeply private person, said this, “The people who wrote those horrible things know nothing about raising a person like Jack. THEY KNOW NOTHING. Their opinion means nothing in this scenario.”

He also said, “Of course you can’t stop writing. You can definitely tell ksl to take a hike, but your blog is something different. If you do it because you feel called to do it, then carry on and share hope.”

And so, I ate an unhealthy amount of Cadbury mini eggs and I opened my laptop as I climbed into bed after this long, trying day. And I wrote about it.

 

  23 comments for “Peace, also Sadness

  1. Julie M
    April 17, 2017 at 10:44 pm

    Oh, Megan, I am so very sorry to hear about this. All of it. Because your blog has given me so much hope and encouragement and peace and solace and it has brought me closer to Christ. It really has. You deserve thanks and a whole case of Cadbury mini eggs, not judgment and hatred. I will pray for your well being and also that Jack has a smooth recovery. Love to you all.

  2. Allysha
    April 17, 2017 at 10:47 pm

    Megan, I love you. I know we don’t know each other, but I do love you. I’m so, so sorry for the mean comments. But yes, Carry on and Share hope. And thank you for doing it.

  3. hkgrobinson
    April 17, 2017 at 10:51 pm

    I do not know you. But I have also raised an autistic boy. He is an adult. And he is much higher functioning than your Jack. To hear that people responded to your beautiful writing with so little attempt at charity has broken my heart a little bit today. I, too, have lived with the people of my faith exhibiting impatience and frustration with my son. I have wanted to scream that their frustration with only the briefest contact with my son is reprehensible. I have to deal with him all the time, day and night, good behavior and bad. They will get to walk away. They could probably muster a little patience for just one minute since I was going to get to deal with this for what feels like forever. People who are critical of a mother who is wrestling with a SN child are reserved a special circle of hell. They are like those people who protested a homeless shelter ten miles from their homes out of fear of declining property values–when the values are already higher than they deserve. They are not mourning with those who mourn or comforting those who need comfort. They are making an already heavy burnden even heavier. They are not good people. You are good people. Never forget that. You are doing work that would break those people. And you are not broken. I will be praying for you and your family tonight.

  4. Sarah
    April 17, 2017 at 10:52 pm

    You’ve got a good husband there. Love and peace to you, my friend. See you next week, I hope.

  5. Allison
    April 18, 2017 at 7:21 am

    I love your writing. It’s so good for me. I have a new perspective on the Atonement of our Savior because of you. Please keep writing!

  6. Anonymous
    April 18, 2017 at 7:41 am

    PLEASE don’t stop writing. For the rest of us who also walk around in the world with people who have huge but only somewhat apparent disabilities (and spend our time explaining, apologizing, defending…), you are a source of comfort and hope. You are especially thus when things are going haywire. I need your blog to know that other people are also bearing the unbearable. I hope you need your blog, too.

  7. Pamela
    April 18, 2017 at 7:49 am

    Megan
    My husband and I are so sorry to hear about those awful people and there horrible comments to you and your family. I cried when I read your post about what happened at Costco and am in absolute disbelief about those awful KSL people. Boo to KSL for publishing those comments.
    We had a similar incident happen with our 18 year old autistic son last summer. You are not alone. There is an army of sn parents behind you.
    Your experience happening right before Easter reminds me of how many treated the Savior and how they have treated you. Your sons are Celestial people as are you and your husband.
    Thank you for sharing your blog. It gives us hope
    and reminds us of the Savior as we struggle to raise our Autistic son. I will pray for you and your family as I send you a big hug. My husband reminds me that the day will come when we will be able to talk to our son and he will talk to us and he will be healed and happy. We will be so joyful as I know you will be too.

  8. Bethan McCutcheon
    April 18, 2017 at 7:54 am

    Hi Megan!

    I have two boys. They are 13 and just shy of turning 12. I am truly hoping you are Canadian and live near us so we can get our boys together for some fun. Beside the fact that we make gorgeous boys we also have your experience in common. Been there.

    Sending prayers of strength and a lot of energy your way.
    Bethan
    xx

  9. Shana
    April 18, 2017 at 7:58 am

    This makes me sad. I’m sad that our society has so little empathy for one another that they feel it is okay to attack a special needs boy and his mom from behind the anonymity of their computer screens. But, these hateful commenters likely don’t “know” you and Jack and your family. They read one blog post about one incident and passed judgement. They don’t know what you and Jack and your family have gone through over the days and months and years. These people are sheltered and naive about life with a special needs child, and rather than educate themselves about the unknown, they throw around hate and blame. Megan, I don’t live life with a special needs child. Through your beautiful writings, you have opened my naive eyes and given at least one person much, much more empathy towards special needs parents and children. Where I truly once thought it was poor parenting and naughty children, I have learned there is just so much more to the puzzle. The knowledge I have gained through reading your blog and some like yours has made me so much better with my patients (I work in healthcare), allowed me to educate my own children on kindness and acceptance of those who may look like them but act differently, and, finally, to offer love and encouragement to parents of young members of our family who have been recently diagnosed on the spectrum. I just wanted you to know that your writing has made my little corner of the world a better place. Thank you.
    Also, I love your sense of humor.
    🙂

  10. Thelma Davis
    April 18, 2017 at 7:59 am

    I am stunned that people would respond in anger to that post. I thought it was wonderful. Your blog has helped me through an entirely different set of challenges than the ones you have, but it has spoken to my own sorrow. I’m sorry about the mean people. You deserve better.

  11. Carol R.
    April 18, 2017 at 9:02 am

    Please don’t stop writing. I am much older than you and my son is 35, but I connect with you in every way. Had there been blogs back when I was younger and my son as well, I envision that perhaps I would have written a blog. You are strong and you can endure. When we found out the specifics of my son’s condition after him having seizures starting at 6 months, people would say to me “we are never given more than we can handle”. I hated that saying. I didn’t feel special enough to be given the enormous responsibility of parenting a special needs son. I never questioned why, but I did feel as though I was not special or strong enough. Fast forward and here I am….an advocate for my son and those he shares a home with. I am strong and so are you. You have a wonderful husband that loves and supports you. You can do it! We certainly wouldn’t choose this life but it’s here and you, my dear, are doing a great job with Jack and all of your boys. Don’t stop writing. You inspire more people than you realize. You will always encounter people that haven’t walked in your shoes and feel they can judge you. Just rise above the circumstance and brush off the remarks. You know your adversity and everyday, you are conquering it. Much love and support!!

  12. Emily M.
    April 18, 2017 at 10:48 am

    I love your blog.

    I get that you might want to stop writing at some point. I think that all bloggers need to do what is best for themselves and their families and their own mental health with regards to making their personal lives more public. It’s your decision, in the end.

    But having said that, I will add that I love your blog. I’m not a special needs mom like you (ADHD + teenage depression = my own family’s challenge, but not the same. At all.) but your words have strengthened and blessed me.

  13. Jenny
    April 18, 2017 at 11:42 am

    Bless your heart…I’m horrified that people were so mean and judging and ugly about what you wrote. Please do keep writing, as long as it’s more of a blessing than a burden to you.

  14. Amy
    April 18, 2017 at 12:44 pm

    I’m truly amazed at the audacity of some people. Your writing has only ever made me MORE sympathetic, MORE compassionate, and MORE understanding, and I thank you for putting yourself in a vulnerable, scary position in order to help build bridges. You’re amazing.

  15. Sharon
    April 18, 2017 at 2:15 pm

    I just LOVE the image you shared of boxing up all that ugly stuff and taking it to the sacrament table and giving it to Jesus. I’ve shared it with several people that have really loved that perspective. Thanks for your amazing, insightful, uplifting, educational, poignant, honest, spiritually edifying posts. I look forward to reading them.

  16. Sarah
    April 18, 2017 at 3:26 pm

    I am a special ed teacher and have the greatest respect for parents with kids who have varying abilities. Few people see the quiet, gradual victories our kids make. You are the whole hearted person Brene Brown describes and I take courage from your honest vulnerability.

  17. Barb
    April 18, 2017 at 7:22 pm

    What fresh hell exists in those comment sections?? I mean, really. WHO ARE THESE PEOPLE. I just adore you and admire you and hope you keep writing. Your description of taking Jesus seriously to forgive those haters is beautiful and real and helpful. Praying for you that you will continue to feel peace.

  18. Jen
    April 18, 2017 at 8:02 pm

    Go Meagen Go! You are an amazing lady. Never let anyone dull your sparkle. I feel your pain and your joy daily in my life that is very similar to yours. I come to your blog to feel comfort on hard days and many times get a good laugh.
    You’re a beautiful person and God has given you a gift. I thank God for a woman who lives in another state whom I’ve never met! You inspire many so don’t let those dreadful haters dull your sparkle❤️ Prayers and hugs your way

  19. Jeannie
    April 19, 2017 at 11:12 am

    Megan, we don’t know one another, but you have made a big difference in my life nonetheless. My cross to bear is completely different, but still I seek your blog posts out because your struggles, your authenticity, and your beautiful writing help me go on. You’ve also inspired me to become aware of hand more compassionate to the special needs families around me.

    I hope you make whatever decision works best for you about continuing the blog, but I wanted to take the opportunity to thank you. You have helped me to refuse to be ashamed of that which is not shameful. (In our case, that’s mental illness.) And you remind me that my family–just as it is–is of God. Thank you for that.

  20. Mary
    April 23, 2017 at 5:01 pm

    I’m so sorry Megan. Of all the disturbing things in this day and age we live in, the thing that has disturbed me most is the disrespect and rudeness that people use when they can hide behind the anonymity of a screen. It certainly keeps me from being more open online or putting myself out there and I admire you for your courage and strength.

  21. Becky
    April 23, 2017 at 7:26 pm

    Megan,
    I don’t know you and you don’t know me, but I have received hope and encouragement from you and I have offered prayers on your behalf. I hope that you feel the love of those of us who are also in difficult parenting situations. Sharing your experiences will open the eyes of those who are willing to have them opened and will lift the hearts of those who are also struggling. Please don’t let the ignorance of others take away the amazing gifts that can come from reaching out.

  22. Brittney
    April 28, 2017 at 11:04 pm

    Megan,
    I am so sorry you had such a bad experience sharing your story. I have four children, all with some kind of special need. My second son, Austin, is very severe and many, MANY of your stories speak to my own personal experiences. I need your blog. I need your beautiful words and the hope that radiates through it. Take a break if you need to, but don’t stop. I don’t have your gift of writing. Your heart felt words and thoughts and experiences resonate with me in a way that nothing else has, because they are my undeveloped thoughts. I wish I could express myself the way you do, but that is not my gift. I read your posts and I say, “YES! That IS what is feels like!” or “I can completely relate to this!”. Last week, my son slapped a congregation member across the face in the middle of sacrament meeting. Thankfully, he is (and still is) a good friend, but next time…because there will be a next time…I may not be so lucky. My heart breaks that you weren’t given more support. I am so sorry. Thank you for your bravery to post your personal life and heart on your blog. I know I’m not the only one, but your blog has made a huge difference in my life. It has kept me going. I only wish I could do the same for you. Thank you. Love and prayers.

  23. Beth
    May 26, 2017 at 5:11 pm

    Please don’t stop blogging. Your honesty and beautiful words are strengthening to me.

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