Losing “It“ and Finding Grace

I lost “it” this morning.

By “it”, I mean my patience, my mind, my cool, my sanity, my control.

Josie has been struggling for several weeks with going to to school. Part of it has to do with having separation anxiety, which she also went through last year. Part of it apparently has to do with having a fear of people dying and being sad when they are in Heaven. Part of it has to do with wanting things to be the way she wants them to be but not getting her way. Part of it has to do with the fact that she’s always been an emotionally intense child.

A lot of it has to do with her being five and having a lot of big thoughts going on that her brain just isn’t ready to make sense of yet.

As a school counselor, I’ve done my best to go through all of the techniques and strategies I can think of to figure out what would best help her.

As a mom, I have been doing my best to practice things like taking deep breaths and expressing gratitude to help her through this season of challenge.

Every day I have prayed for her to find peace and happiness. I have prayed for myself to have the patience and ability to help her.

Today I failed her. Big time.

As I was yelling and slamming doors and stomping and crying, I knew it was the absolute wrong thing to do. But her five-year-old tears and whining and ungratefulness coupled with my own personal stressors and frustrations resulted in me losing it.

By the time we got to school, I had calmed down enough to apologize to her. To try to explain that my reaction was in response to my frustration at her behavior.

When I got an email from her teacher letting me know that she had a couple of rough moments during the morning, including yelling and stomping her feet, I had to admit to my role in that. That it was my fault she acted that way, not Josie’s. Let me just tell you that admitting to a co-worker that you failed your own daughter and caused hardship for both of them is a very humbling experience.

Throughout the day, I cycled through feelings of disappointment, anger and guilt for my behavior; frustration at not knowing how to help my daughter; fear of how my words and actions may have affected her.

By the end of the school day, I was drained. Physically, mentally, emotionally.

It was when I got downstairs to pick Josie up that I found what I didn’t expect but so badly needed.

I found grace.

When she saw me and broke out in a huge smile, she gave me grace.

When she hugged me tight and told me she had a great afternoon, she gave me grace.

When I apologized to her again for the way I acted this morning and she said, “You already told me that.”, she gave me grace.

When she told me, “It’s hard for both of us.” after I apologized again and told her of my plan to do better tomorrow, she gave me grace.

I didn’t deserve this child’s forgiveness and grace today, but it’s what I got because it’s what I needed.

I pray that this reflection of my own shortcomings might serve to remind you of the importance of seeking forgiveness and accepting grace. Especially when you feel you least deserve it. In turn, be ready to give forgiveness and grace to those who may not deserve it but desperately need it.

Extra Chromosome = Extra Awesome. It’s That Simple.

Josie was a fresh-faced little two-year-old when Moses was born. With her, my focus was more on helping her adjust to having a new baby invading her space than explaining that her new baby brother had Down syndrome. At that point in her young life, telling her that would’ve meant absolutely nothing to her anyway. Still, part of me wondered when the time would come to explain it to her.

While we didn’t explicitly tell her that he had Down syndrome, we didn’t hide it from her, either. When she asked why people were coming to see him, we explained that they were there to help him get stronger and learn how to do things. That explanation was good enough for her, and she quickly began to interject herself into his physical and speech therapy sessions. In fact, there are still times that I have to remind her that the therapists are coming to see Moses, not her.

My question of when I would have to explain what Down syndrome was and that Moses had it was answered this past spring. Josie had found a medal from the Step Up for Down Syndrome Walk we did in St. Louis the previous spring. She had been wearing it around the house for a while when she came to where I was sitting on the couch and asked me to read what it said. I told her it read “Step Up for Down Syndrome”. She looked at the medal again and said, “I don’t cheer for Down syndrome.”

“Oh, yes you do, sister.” was my immediate reply. Of course, her next question was promptly, “Why?”

Taking a deep breath, I said, “Because Moses has Down syndrome. We cheer for him all the time, right?” (As a matter of fact, we cheer for him so much that when he has even the smallest of accomplishments, he looks at whoever is around to make sure they’re properly cheering for him.)

Here came the hard part. Not because I thought that it would somehow change how she looked at him or felt about him, but because explaining the science and complexity of Down syndrome is hard. Explaining it to an adult who has at least heard of a chromosome is hard enough. Explaining it to a 4-year-old is downright difficult.

I did my best to break it down so she could maybe understand part of it. I told her how we all have chromosomes in our bodies and that most people have two of each chromosome in our cells, but Moses and others with Down syndrome have an extra chromosome that changes some of the things in their bodies and makes it harder for them to do somethings. Thankfully, I could tell that she was losing interest and that she was ready to go about her business, so that extremely over-simplified explanation was all she needed.

After that, Josie didn’t ask any more questions or say anything else about Down syndrome.

Until last week.

While I was getting Moses ready for bed one evening, Josie came in his room and asked, “Why doesn’t Moses talk yet?”

“Well,” I started, “It’s because he has Down syndrome and that makes it harder for him to learn how to talk.”

“Oh. Will you tell me about Down syndrome and those chromo-somes again?”

Impressed that she had apparently really been listening to me when I had tried to explain it the first time, I reminded her that most people get two of each chromosome but Moses got extra of one of them which makes it harder for him to do some things, like learn how to talk. This time I added, “But it’s also part of what makes him awesome.”

Without missing a beat, that smart-mouth came back with, “But you don’t have an extra one so you’re not awesome.”

I swear it was all I could do not to come back with, “Well, little girl, neither do you, so what’s that say about you, too?” Instead, I returned the playful smirk she was giving me and told her to go get ready for bed.

What I love most about telling Josie and other kids about Down syndrome and what it means for Moses is their reaction. It’s almost like a healthy indifference. Having that information doesn’t make or break anything in terms of how they feel about him. There’s no looks of pity towards him or me. They don’t say, “I’m sorry.” There’s no uncomfortable pause or change in conversation. There is simply acceptance.

For Josie, beginning to understand why some things are different about and for her little brother hasn’t changed a thing around here. She still loves him because he’s her Mo Mo. It’s that simple.

Normal First Impressions

A couple of weeks ago, I got the chance to meet a family that had just welcomed a beautiful baby with Down syndrome. While the mom and I had talked on the phone and had been texting for a few months, we had never actually met in person.

When Moses was a baby, I can remember almost desperately looking to other families with kids with Down syndrome for reassurance that everything really was going to be okay. Normal even. I was so excited that now it was my turn to make a great impression about having a child with Down syndrome and show her what an amazing, normal family we really are.

When we got to their house, Moses had decided to take off his shoes, braces, and socks on the drive over. While I was putting them back on, Josie had taken the baby’s gift and gone up to the front door. After I got Moses situated and out of the van, I got the coffees I had picked up on the way and started herding him towards the door where Josie was semi-patiently waiting. When Moses and I got to the steps on the sidewalk, I put the coffees down to get him down the steps a little quicker. Of course, he wasn’t having any of that since he can do it on his own, so I picked the coffees back up and semi-patiently waited for him to get down the first step.

By this point, Josie can hardly stand that she hasn’t gotten to meet the new baby yet, so I told her she could go ahead and knock on the door. Moses was making his way towards the second step, but his progress was slowed by the leaves and sticks that needed to be examined on his path. When the door to the house opened, a sweet yellow lab came barreling out, right past the child that loves animals and straight to the one that has a healthy dislike of them. So now Moses is not moving at all, my hands are full with the drinks, and Josie’s welcoming herself into this new home.

The mom came out and got the dog, but Moses wasn’t making any effort to continue his trek down the steps. So I walked to the porch, put the coffee cups down, went back to pick him up before he could head back to the van, and got him to the front door. After I put him back down and picked up the coffees, I was ready to meet that baby and hopefully calm any reservations or fears the mom might be having about having a child with Down syndrome, if she was having any at all.

After introductions were made, Josie and I went right over to where that sweet baby was sleeping and we ooh’d and aww’d over her perfect little eyes, nose, mouth, and hands, and we giggled at how her hair stood straight up. Standing up, I said, “Moses, come see the baby!” and looked over to where I thought he was.

He wasn’t there.

“Moses?” The mom said she thought he was in the middle of the fort her other kiddos had been working on. I walked over and looked. Nope, not there. I stuck my head around the corner into the playroom.

Not there, either.

“Moses?” Nothing.

“I brought him inside right?” As I said those words, I was inwardly cringing at what this mom must be thinking of me. Pretty sure losing your kid within the first three minutes of meeting does not elicit feelings of confidence and normalcy. The mom said she was pretty sure he came inside, but as I was opening the front door to make sure, I heard him.

“Moses! Where are you?” And then he appeared at the top of the steps. While Josie and I had made a beeline for the baby, Moses made himself at home and went straight upstairs. Apologizing, I ran up the stairs and carried him back down. The mom assured me he was fine and that there was nothing up there that he could hurt.

Now, I’m the type of person that doesn’t say such things if I don’t mean them, so when others say such things to me, I go with it. So after he looked at the baby for about 7 seconds and walked away, I wasn’t worried about where he was going since I knew he was at least safely inside.

As the mom and I talked and got to know each other, Josie went off to play with the other kids for a few minutes, but then she was back to ask if she could hold the baby. Josie loves babies. She pretends like she’s pregnant at least once a week and then loves those babies after they magically get out of her stomach. Getting to hold a real baby is like holding a little piece of heaven for that girl.

While Josie sat on the couch and held the baby, the mom and I continued chatting while I made sure that Josie was supporting the baby’s head and kept an eye out for Moses. After a few minutes, it was becoming clear that the baby was hungry, so I took her from Josie to give her to her momma. As the mom got settled in to nurse her, Josie went over and sat right next to her. Like she wanted to watch to see exactly how this baby was getting fed since as there was no bottle in sight.

“Josie, go play.”

“But…”

“Josie, go check on your brother. Now.”

Reluctantly, Josie left the room and thankfully didn’t come back until after the baby had finished nursing.

In the time that we were there, I could tell that this was a mom that I could totally be friends with. She was easy to talk to, and we talked about several things in addition to some questions she had about my experiences with Moses and Down syndrome.

As we talked, it was kind of cool for me to realize how normal Down syndrome really has become for me and my family. I vividly remember being in her shoes with a newborn and learning about First Steps, therapies, health screenings, etc. I did my best to assure her that while I know it can be overwhelming at first, there really are great supports available and it doesn’t take too long to settle in to this new normal place.

And then the hour I had given us to stay was up. I called for Josie and walked over to call Moses to come downstairs only to find that he had thrown no less than 15 stuffed animals and a couple of books down the stairs.

“Moses Alexander!”

He appeared at the top of the steps with a huge smile and another stuffed animal to chuck down the steps.

Apologizing, I told Josie to help me clean up the carnage, but the mom stopped us and assured me it was no big deal and that her other kids would take them back upstairs. Praying that she meant what she said and that she wasn’t crying on the inside, I went to gather up Moses who had wandered into the playroom. Before he could make any more of a mess, I told him to come say goodbye. Carrying a toy with him, he came over and said, “Bye.”

Josie, seeing an opportunity to be helpful, grabbed the toy and when Moses tried to pull it back, he fell and hit his head pretty hard on my knee. I prayed it would play it tough, but he promptly started wailing. Doing my best to act like this was nothing, I gave the mom a quick hug, told her how amazing it was to meet her and her kiddos, and told her to call or text me if she needed anything.

Moses cried the whole walk back to the van then promptly stopped and smiled when I told him he could watch Elmo on the way home. By the time we pulled away, he was happy watching Elmo, Josie was talking about the sweet little baby, and I was thinking that I had absolutely failed at making a great first impression. I wanted to say to her, “I promise we’re totally normal!” But as I drove, I started laughing at the whole ordeal and decided that while it may not have been a great impression, it definitely wasn’t a boring one!

We may not have made the impression I had hoped to make, but I do pray that she saw that we are more or less an amazing, normal family. I think when some parents have a baby with Down syndrome, there is an apprehension that there will be a lack of normalcy – with the baby and life in general. The awesome thing is that life with a baby with Down syndrome is totally normal. If anything, the only way it’s abnormal is that it’s better than you could have ever imagined.

Finding Santa

“Mommy, why do you have to work so hard?”

“What do to mean?”

Today had started off relatively slow and relaxed. At least I thought it had. All I had done since the kids had gotten up was strip their beds and washed their sheets, make breakfast, clean up from breakfast, put the sheets in the dryer, fill up the water table and kiddie pool for them, change two poopie diapers, fix lunch, clean up after lunch, read a couple of books for Moses and then put him down for a nap.

As I was taking a shower while Josie was also “resting”, I had actually thought that it has been a nice, quiet morning before a busy afternoon of swim lessons and physical therapy and knowing that I was on my own with the kids for the evening while Tyson was at a meeting.

So when Josie asked me that question as we were laying in my bed chatting a little while later, I was genuinely confused where it was coming from and asked her what she meant.

She said to me, “Why do you always have to work so hard at home and at your job? …You need someone to help you.”

“Someone like who?”

“Someone like…Santa.”

I smiled at her and told her that I worked hard because I wanted to do a good job at home and at my work. Because I had things that I was responsible for doing, and because if I didn’t do them, then they wouldn’t get done. I also told her that I did have people that helped me, but there were some things that were just my job to do.

I don’t identify as a feminist, but I think that’s because I never saw myself as unequal to my male counterparts. There was never anything that I aspired to be that my gender would hinder my chances. However, I’m also not blind to the fact that there are political, economic, and social inequalities based on gender that do exist.

Marriage has opened my eyes to that more than anything.

The “traditional” roles of marriage are largely outdated. The idea that the man is responsible for working and the woman is in charge of all the things at home applies to fewer and fewer families today. (And God knows that the idea that “children should be seen but not heard” is dead and gone.)

Thankfully, my marriage has more or less been one in which my husband and I have our fair share of duties. At the same time, we both acknowledge that I do more on a day-to-day basis around the house, and, as I once told him, I’m okay with that because I take pride in making sure that my family has a clean house, food in the fridge and on the table, etc.

I’m also very much aware that I assumed those responsibilities because that’s what my mom did for her family, and it’s what her mom did for hers. I’m sure Tyson didn’t question it because it’s what his mom did for her family and what her mom did for hers.

The difference between our moms and me is that other than 8 weeks of maternity leave, I didn’t leave the workforce while my children were young. Yes, I am off work for a couple of months in the summer, for the other 10 months of the year, I have a pretty mentally and emotionally demanding full-time career, too. Much like many other wives and mothers of today’s society.

It’s a choice, sure. I suppose I don’t have to work. I could’ve stayed home while Josie and Moses were little. We wouldn’t be able to afford the lifestyle we enjoy now, but we could make it work. But I want to work. I don’t want to be a stay-at-home mom. I’m super thankful I don’t have to. (Seriously, you SAH moms are saints on earth.)

However, for many families, there’s no choice of whether or not one of the parents will work. The chances that my daughter will also be a working mom are fairly high, I’d say.

In a way, I’m happy to be setting an example for her to work hard. Not because I’m a woman, but because I believe in the value of working hard and doing things to the best of my ability.

However, there’s a part of me that is fearful that I’m setting her up to feel like she has to do it all. That she has to work hard at work and at home without any help. That she has to do what she saw her mom do. Or what she thought her mom did.

The thing is, I do have help at work and especially at home. However, a lot of the things her dad does at home are things she doesn’t see. She doesn’t see him scheduling payments and writing checks. She doesn’t understand how much time goes into maintaining the yard. When he’s doing the dishes, she’s usually off playing. She doesn’t understand that he does his own laundry. She doesn’t understand that his job simply keeps him away from home more than mine so he is limited in how much he can do at home.

I definitely want to set the example that as a female, she CAN do it all. But that doesn’t mean that she has to do it all by herself. I am encouraged when I read or hear about couples that share equally in managing their household. I pray that she finds a partner that will be just that – a partner. A person that she can depend on and knows work hard with her.

I hope she finds her Santa.

Teaching Kind

The other morning while going for a walk, Josie asked me, “Mom, what should I be when I grow up?”

After going through a couple of suggestions and explaining what they were, I said to her, “Do you know what I want you to be when you grow up?”

“What?”, she asked.

“Kind.”

After the sass and arguing I’ve been getting from her for the past two weeks of summer break, along what happened a couple of days ago, I find myself focusing on being kind and respectful more than anything with her.

Earlier this week, we were at AT&T getting some help with our phones, which of course meant we were there for an hour. Moses had been doing his thing – making his rounds, telling people “Hi”, tagging some people on the leg as he walked by and giving others hugs. At one point, he wanted something in my purse, so I gave him my tin of Altoids. He walked away shaking it happily, and then came walking back to me empty handed. As I got up to find where he had put it, a woman who had been sitting by the door was coming toward me holding my Altoids. We laughed as I thanked her for giving it back and I told Moses to stop giving my things away.

Moses was smitten. He kept going back to where she was sitting on the ledge by the door and would wait for her to put her hand out and he would touch it as if he was touching a cloud. Seriously, I wanted to ask her if I could feel how soft her hand must be with the way he kept going back to to touch it.

After a bit, he walked away and I followed him. When I looked back a few seconds later, Josie was standing about 10 feet away from the woman and other woman who was with her, and she was just looking at them with a weird, shy smile on her face and had her fingers in her mouth, which she never does. I told her she could go say “hi”, which I normally don’t have to tell her, but she stayed put. I could tell the women were getting a little uncomfortable with the way she was acting towards them, so I told her to stop acting weird and either say “hi” or go sit back down. She walked back toward the bench and I went to go after Moses again. When I came back around, she was staring at a man wearing a safety vest. I took her over to the table where Tyson was and told her that it wasn’t nice to stare at people and asked her why she was acting weird. She said she didn’t know. Thankfully, we left a couple of minutes later.

Later that evening, we were outside and she came over and sat next to me. It was my turn to ask her a question.

“Why wouldn’t you say hi to those ladies at the store?”

“I don’t know. I didn’t know them.”

“You didn’t know the lady that was talking to Moses, but you went right up to her and even gave her a hug. What was different that you would talk to her and give her a hug but you wouldn’t say hi to the other ladies?”

“Well…it’s because their color wasn’t this.” She pointed at her arm.

Thank God I’m in education and could recognize that this was about to turn into an important teachable moment. I was able to take a deep breath and think about how to best respond to the answer that broke my heart.

I asked her, “Why does that matter?”

“Because I don’t like when people have brown or black color. I don’t like to talk to them.”

In my head, I was screaming “THAT IS NOT TRUE! YOU’VE TALKED TO PEOPLE WITH BROWN OR BLACK SKIN! WHERE IS THIS COMING FROM???”

Taking another deep breath, I responded to my daughter as calmly and clearly as possible.

“Josie, do you know what this is?” Pointing to my arm and to hers. “This is skin. Skin comes in all different colors, and the color of peoples’ skin is never a reason to not talk to them. Skin color does not matter. What matters is how people act and treat other people. Does that make sense?”

Josie nodded. But I wasn’t finished.

“Those ladies at the store were very nice. They were being kind to your brother and were trying to be nice to you. Were you being nice to them?”

She shook her head no.

“Remember that man in the safety vest? He had your color skin, but guess what? He wasn’t nice. He said something very not nice about you and your brother. That’s why I wanted you to stay away from him. It had nothing to do with the color of his skin but because of how he was acting.”

We then talked about one of her friends at school that has brown skin and how they’re friends because she’s nice. I ended the teachable moment by telling her, “You better never not talk to someone again because of the color of his or her skin, do you understand?” Thankfully, she nodded her head yes.

By the end of our conversation, I felt a sense of relief even though it wasn’t an easy conversation to have. It would’ve been easy to excuse Josie’s behavior to she was feeling shy. But in my heart I knew that wasn’t it. It would’ve been easy to just ask her if she wasn’t talking to those women because they had black skin. But as I’ve learned in the last almost 5 years, this parenting thing isn’t always easy.

More than anything, I want to raise my daughter to be kind. In a world in which people are still judged based on skin color, socioeconomic status, religion, number of chromosomes, etc., I want my daughter to simply show kindness and respect to all people. I want her to choose friends based on whether or not they treat her and others with kindness. I want her to choose a husband that treats her and others with love, kindness, and respect. I want her to be chosen to be a friend and wife for the same reasons.

I think of the people in history who have worked to teach people that gender doesn’t determine jobs, skin color doesn’t determine where you sit on the bus, and the answer to an extra chromosome is not institutionalization. While incredible progress has been made, it doesn’t mean the lessons don’t still have to be taught.

So at this young, impressionable age of almost-five, I find myself in a position as her mom to make sure that I’m not turning a blind eye to or excusing her behavior because of her age. I have to remember and understand that she is learning every day. I have to have tough conversations with her. I have to listen to her and help her see the errors in her thoughts and behaviors. Above all, I have to make sure that I am teaching her not just through words but by my own actions. I know that not everyone is going to show Josie or even myself kindness and respect. But I know from experience that I sleep much better at night when I can look back on the day and know that I did my best to be kind and respectful. I look back at how I’ve treated others, and at how I have been treated, and know that kindness and respect are not often regretted.

Back to our walk, Josie ended up saying she wants to be a doctor when she grows up. My response? “Be a kind one.”

 

Running On E

You can’t pour from an empty cup.

That’s the thought that has been running through my head.

Because mine is about empty.

Tonight I have gotten to work on refilling it.

This kids are at my in-laws. My husband is out celebrating the end of his school year.

I am ignoring the piles of clothes covering the dining room table that need to be put away and the mess of papers littering the kitchen counters. I’m going to let the dishes stay in the dishwasher until tomorrow and not care that the bathrooms haven’t been cleaned this week. I decided against going shopping for a new swimsuit or flowers that would’ve likely died before I could plant them. The top of my dresser has been collecting papers and pictures and dust for months, but I’m not going to clean it tonight.

Instead, I took this evening for me. I have gotten to sit on the couch and eat too many chips and french onion dip while watching TV. I got to finally take full advantage of the free vacuums at the new fancy car wash. (I don’t even want to know how many Cheerios, Fruit Loops, and penguins were in the cracks of those car seats…). I was able to turn off my phone and sit quietly with my thoughts for 45 uninterrupted minutes. I’ve taken the time to write.

I know that I’m in the season of life that requires me to take care of others in a big way, both at home and at work. But that doesn’t mean that I have an unlimited reserve of mental, emotional, and physical energy to unceasingly meet the needs of those who depend on me. That I don’t need to have my own needs met.

Right now, I’m tired.

Mentally.

Emotionally.

Physically.

Which is why I need time like this to myself. It’s quiet times like this that I am able to think, reflect, and pray for direction.

Some may think it selfish for me to be as thankful as I am to be at home alone this evening. I know there was a time I thought it was a selfish thing to want to do, let alone actually do it.

But even Jesus needed time alone to think, reflect, and pray, right? There were times that he told the twelve guys following him to leave him alone. I think that’s pretty understandable considering he spent his days being sought out to heal the sick and raise the dead, feed the masses and turn water into wine, and somehow also find the time to teach life-changing lessons in ways his students could understand. He knew there were times that He needed to take time for himself up on a mountain or in a boat in the middle of the sea. So He did. And then He was able to come back and continue serving others.

I know that doesn’t quite compare to what I do on a daily basis for my husband, children, geriatric dog, friends, students, etc. But like Jesus, after spending my days serving others, there comes a time that I need to stop.

Be still.

Be quiet.

Pray.

Tomorrow when I wake up, my cup will be refilled. It may not be overflowing. It may not even be to the top. But at least I will feel like I have something in there to pour out for others. Because you can only run on empty for so long.

I hope that you will make the time and take the time to make sure your cup is filled, too.

The Other R-Word, Part 2

A few months ago, I wrote about my desire to put an end to associating an unborn baby with Down syndrome with the word ‘risk’. Because I feel strongly about the power of words and their ability to change (or even save) lives, I decided to follow-up with Healthline about the fact that it used the word ‘risk’ twice as much in reference to Down syndrome than several other birth defects and disabilities. (You can read the email I sent to them here.)

I sent that email on February 24. In my head, I had a grand vision of making a post on March 21, which is World Down Syndrome Day, to share that Healthline had made revisions to reduce the number of times that R-word was used on its webpage.

Like many visions, it didn’t happen. Disappointed, I wondered if I should really even pursue it further. I mean, I even had someone tell me, “It’s just the way it is.” when I was talking about how I didn’t think it was right that ‘risk’ was used so much more to describe Down syndrome than other conditions.

But then I remembered my response to that. “That doesn’t mean it has to stay that way.”

So on March 26, I wrote Healthline again. (You can read the email here.) This time, I gave suggested revisions using words like ‘chance’ and ‘probability’ – both of which honor the unknowns pregnancy bring in reference to having a baby with Down syndrome but that don’t carry the negativity of the other R-word.

On March 27, I had this reply in my inbox:

Dear Jenny,

Thank you for writing again and I apologize for not resolving this sooner. I had spoken with our social media editor last week (who had also received a message on this issue) and I had mistakenly thought that our production team was already making the changes you requested, which turned out not to be the case. So I have gone in again myself and made further edits on this article with the help of your recommendations. I hope that the change of language is more appropriate now. Apologies for the delay and thank you for your communication. Please do not hesitate to contact us in the future.

Best,

John Bassham
Editor II, Feedback and Updates
Healthline Media

Of course, this email got totally buried in my inbox and I didn’t see it until last week. As soon as I finished reading it, I went to the Healthline page about Down syndrome. sure enough, John had made the changes! Not only did he use some of the suggestions I had given, he made a couple more, including changing the heading that once read “Risks” to “Statistics and considerations”.

I finally replied to Mr. John Bassham today:

Dear John,

Thank you for your email and especially for the changes you made to the Healthline article about Down syndrome which reduced that the number of times the word ‘risk’ was used in the article from 11 to 4. When I read through it with the revisions, it definitely sounds much more informational and neutral in providing information about Down syndrome. I also appreciate your attention and revision to the previous heading of Risk, and that you renamed it Statistics and Considerations.

I hope that future readers will find and appreciate that your website’s article promotes an understanding of Down syndrome but that it does not make it sound as though it is a risk to be avoided. Again, thank you.

Sincerely yours,

Jenny Moyers

Like so many other social issues, just because something has been a certain way for however long, it doesn’t make it right and it doesn’t mean it has to stay that way.

For me, I will continue fighting for the Down syndrome community, especially for those that haven’t even had a chance at life yet. I will continue to work to educate people that a baby with Down syndrome is not a risk to be avoided. An unborn baby with Down syndrome is not a cancer to be cut out. A baby with Down syndrome is a person with the potential to make world a better place when given a chance at life.

(Click here to read the original ‘The Other R-Word’ post.)