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."
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.