Intent and Impact

If I would have known how the day was going to unfold, I would have stayed in bed. 

Wednesdays are busy but always one of my favorite days of the week!  A few highlights include a donut date with Luke while Jack is working hard for his physical therapist who we think is amazing.  Luke and I have a standing date where he gets to choose his favorite donut and I get to soak up his 4-year old self…all by myself.  Another highlight includes going to my moms group every other week and be encouraged by each other in the stages of having infants, toddlers, and preschoolers…being vulnerable, honest, and brave in our joys and sorrows with serving our littles…hardest job ever!  I LOVE my MOPS group.  

So this is where I was completely taken off guard…and this is a moment that I feared would happen after getting Jack’s diagnosis of Down syndrome.  For mamas early in this journey of Down syndrome…this will sting a bit and I am hopeful that with sharing my feelings and experience that many more people can be aware of how the intent of a person’s words and the impact it has on someone can cut deep.  

Before sharing my meltdown let me give you a little heads up…I’m 35 weeks pregnant and my allergies for the past 3 weeks have made for sleepless nights (which includes breathing heavily through my mouth…yuck…which also makes me snore :)) and extremely itchy eyes.  Like scratch your eyeballs out…itchy.

People ask me often (including the lady at Target)…

“Are you okay?   You don’t look good.”

 “It’s allergies.”  

Along with that we just moved Luke and Jack to their new bedrooms and finished three kids bedrooms in less than three weeks.  Did I mention I am tired?  Yikes.

Anyways, as I was stating about the morning…after hearing from two mamas and their personal “Be Brave” moments, which included raw emotions of heartache and hope through their unique circumstances, tears were streaming down my face.  I am so encouraged by others and the realness of motherhood.  God is so good, sustaining us all in our good and bad moments, strengthening in our times of weakness, and faithful in His promises.  

As the guest speaker was welcomed, I anticipated a wonderful hour of encouragement and it was very short lived after her introduction.  As she started to describe her first child, a girl, stating how quiet and reserved she was and then years later having a boy and how different the experience of having a boy was, she was in disbelief of the things he was doing.  After explaining he was into guns and finding him doing what sounded to me like typical boy behavior…along with other examples she referenced him sitting on the table, and doing strange things like digging in peanut butter jar and then proceeded to explain that she thought she would call her friend that had five boys for advice.  The speaker shared, “I told her he is doing all of these strange things and then asked her…is this like Down syndrome or something?”  And then proceeded to laugh about her comment.  

Ah, did she just say Down syndrome, as if that was suppose to be funny?  I stared forward, then looked around the room, just in complete disbelief that this women was going on about crazy behavior her young boy was displaying, saying he was out of control, and then insinuating he had Down syndrome.  Just for the record, Jack has never dug out of the peanut butter jar and we don’t and will not allow him to sit on the table.  

Honey, your comment was not funny and to be quite honest, I couldn’t listen to another minute of your speech.  You started to sound like Charlie Brown’s teacher…whaaaaa, whaaaaa, whaaaaa…whaaaa…

 At that point I completely disengaged and could start to feel the anger rise in me.  Why did she think it was funny to make a reference to someone with Down syndrome when it was completely irrelevant to what she was saying?  Why do people continue to say things about others with a disability and find humor out of it?  I thought, I’ll wait this out, go get Jack after the discussion time and introduce her to him, and politely explain to her that my son doesn’t do anything of the things she described her son to be doing when she was explaining his behavior.  

I kept telling myself, I can do this, I can get through these feelings.  Calm down.  Come on Carissa, get your emotions together.  Don’t be so sensitive.  Get some thicker skin.  I would like to think I can take a lot but honestly, this morning, I wasn’t having it.  My anger started to turn to hurt and the tears started coming.  This woman has a platform, a place of power, and she speaks for a profession.  Does she use this reference always?  Does she understand the impact of her words?  

I got a text from one of my closest friends who is also in the group who knew I would be hurting, and it said that she was having a hard time concentrating after her rude comment.  The flood gates opened as I knew that the speaker’s comment didn’t just affect me but also those that love my Jack.  I tried hard to wipe up my tears and found a post-it note on my sheet that was from another mom that said, “I am so sorry for the comment that the speaker made.  That’s not okay.”  Another mom placed her hand on my shoulder and said she was so thankful for my Jack.  Another asked if she wanted me to have her go out of the room with her.  I knew my fellow moms were hurting with me and I couldn’t get myself together.  I DID NOT WANT TO MAKE A SCENE by my tears and was hoping they would stop flowing but they didn’t.  After about ten minutes, I got my purse and quietly exited hoping that it would not be so evident that I was hurting.  

I haven’t cried this hard in so long.  To let my emotions show like that was hard.  To show the vulnerability of being hurt by an insensitive comment, to show I don’t have it together.  I try hard to be strong for Jack.  I think we as moms try hard to have it together for many different reasons, especially for our kids.  

But my tears are not because Jack has Down syndrome, the tears are because of the ignorance of these comments.  I said it before, and I’ll say it again…I would not change Jack.  I wouldn’t take Down syndrome away from Jack if I could.  I would change the way people view my son and his life.  Now, I would consider myself an optimist, most of the time, but I do realize that this will probably not be the last time someone makes a negative connotation about people with Down syndrome.  I guess I was more imagining it happening on a playground with Luke, knowing how kids talk, and then imagining how I would respond to hearing how he defended his brother.  I wasn’t expecting a professional woman in the setting we were in today.  

 

Times like theses make mamas of kids with special needs exhausted, having to constantly advocate for their child, sharing that their lives are to be respected and valued, and most importantly loved like any person.  Not be the joke in someone’s introduction.  EVERY LIFE IS A GIFT.  EVERY PERSON IS SOMEONE’S CHILD.  

I know that good can come out of this situation and it already has.  In a group of 56 moms, I have gotten countless emails, texts, and messages from moms that said that they were completely hurt by the comment the speaker made.  That they were praying for me, that they understood how I was hurt and explained they hurt right along with me.  This means much more than I can explain.  Some of them referenced that Jack’s life has impacted them in so many ways and that they are more aware of the impact of comments and people with Down syndrome.  These mamas will teach their children to speak differently about people with disabilities.  They will teach their children that the intent behind a comment and the impact of it can be so different.  They will teach their children that their words either help or hurt others.   

Although I left early, I am grateful for the friends that spoke up to give the speaker constructive feedback that her message was impacted by the flippant comment.  Her impact could have been much more influential in a positive way and the intent of her message delivered. 

I am humbled and beyond grateful for the positive impact Jack has had on others. Thank you for loving him the way you do!   When I went in to pick him up from the childcare he greeted me with the biggest wave and grin. I can’t express how much he means to me…and so many others.  

Thank you God, for the gift of who You uniquely created Jack to be.  

 

And with that…I’m headed to bed, to end this day.  Onward and upward. 

8 Comments

  • Linda Moeller

    This made me so angry. But then I prayed about it, and realized that God turned it around to good. Your friends’ children will grow up more accepting and more loving. Hugs from Hardwick.

  • Michelle Nath

    My heart goes out to you. A few weeks ago my teenage daughters were helping a friend of mine with yard work. As they were "volunteered" to do this due to an ongoing struggle with responsibly skiing their chores at home in an effort to get them to see how easy their chores really are, suffice it to say that they were not in good moods so I wasn’t to surprised to see my more emotional one at one point look close to tears ad she cried when she’s mad, tired, hurt, happy, breed, etc. When I saw her turn away looking on the verge of an emotional breakdown breakdown, I quickly pulled her aside to provide her privacy in case she started crying. And boy did she ever. Complete meltdown. When I said something to her about it in an "I know you are tired and sore but this is a bit overdramatic sing you think?" kind of way, she mashed to get out through the tears, that’s not why I’m crying. Confused over what else it could have been (is not like they were doing a ridiculous amount of work, just enough to realize that dishes and laundry weren’t as bad as they thought) she said, "Caitlynn and I were arguing and she threw dirty at me. Justin said that it was like watching a couple of special needs kids and that it out was an honor to be able to watch us go full retard on each other. That’s so mean to Logan!" My heart felt shattered, not only by the ignorance, but that an adult would say those words to a child. I pulled him aside the next day and explained what had happened. He didn’t even remember saying it (but did acknowledge that it sounded like something he’d say) and apologized to me and later to her. I’m happy to report he’s making an effort to change. He slipped up once and she called him out on it so I’m glad it turned into a teachable moment but it was certainly at a cost to my daughter.

  • Stacey

    I’m so glad that others gave you support and also gave feedback to the speaker. She clearly didn’t understand the weight and impact of her words. Thank you for all that you do to educate others and make the world a less ignorant place.

  • Abby Lance

    Carissa:

    I just found out about your blog and read the article where you had been on Good Morning American speaking about Jack’s Baskets. I know you are an encouragement and an inspiration to those parents that have heard or will hear the words, "Your child has Down’s Syndrome."

    I have some information that I think you will find interesting. I have a friend that has written a book about her journey with her daughter, Windy. Windy is now 41. Vicki and her husband were told that Windy would probably never walk or talk. God had different plans. Not only did she learn to walk and talk, but she walked into the Oval Office to meet President George Bush, spoke to over 38 million people on national TV, spoke before Congress and competed in the International Special Olympics.

    Vicki’s book entitled, "Born for This: From Disability to Destiny," can be found on Amazon.com. I believe you will find it most inspiring and uplifting as you continue your journey with little Jack.

    I’m sure Vicki would love to talk with you directly. She and her husband, David, are on Facebook. I am also on Facebook, if you want to send me a private message. Vicki will probably post something on your blog as well.

    Blessings,
    Abby Lance

  • kathy

    I just can’t imagine what I would have done if I had been sitting there- I don’t EVER want to be anywhere and hear someone talk like that…but I know at some time that will happen..Im just so sorry you had to be there….. Hopefully it helped to write this post for others to learn from

    Love
    Kathy

  • Priscilla

    Psalm 139:13-16
    “For You formed my inward parts; You wove me in my mother’s womb.
    I will give thanks to You, for I am fearfully and wonderfully made;
    wonderful are Your works, and my soul knows that very well.
    My frame was not hidden from You, when I was made in secret,
    and skillfully wrought in the depths of the earth.
    Your eyes have seen my unformed substance;
    and in your book were all written the days that were ordained for me,
    when as yet there was not one of them.”
    This was the verse we wrote on our son’s birth announcements. We’re so blessed to have an "extra special chromosome" boy like you. He’s truly a gift from God to our family and all who meet him!

  • Jennifer O'Daniel

    Please send this post to the woman who was speaking to your group. It would be wonderful for her to see it and know that she shouldn’t say things like that. She may be telling this story for years so she needs to know.

  • Vivian Rinaldo

    Yeah, I would not have left the room without calling her out in front of the audience. I’m an older mom, and I don’t give a damn any more about making a scene. When someone says something like that in my presence, I do not hesitate to confront them. I generally do it loudly so that others can learn that this type of thing is NOT acceptable. I’m sorry you went through this, and I’m glad you have other moms to support you. I feel, however, that if we don’t shame ignorant and thoughtless people like this, they will just go on blissfully unaware of what jackasses they are being.

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