Refusing to Stay Silent

This morning while at the doctor’s office for my yearly checkup, I was enjoying the conversation of my nurse and we got to laughing about different things, and then somehow the conversation took a turn for the worse and somehow led to her saying something along the lines of “People get offended by anything these days.” 

In my mind, I was disappointed that the conversation took that turn because I don’t believe it has anything to do with “these days”. I believe that people are actually getting offended by the same thing that has been offending people for decades, if even centuries. The difference is that now people are not willing to let the offensive words, pictures, or remarks slide. People are not willing to be silenced by the accusation or fear of being accused that they are “too sensitive”. People are not willing to continue to be offended by others simply because they personally do not see the offense.  

But what really had my mind spinning was after she said something about a current topic people are finding offense with. She followed her commentary up with, “It’s so retarded.” 

My first thought was, “No, she didn’t.”

But she did. And as I sat there half-listening as she continued to talk, my mind was racing trying to decide if and how I should address her use of the r-word:

“She just said that people these days are too easily offended, and did I want to be one of those people, did I?”

“Should I even still bother saying something? She’s talking about something else now.” 

“WHY DIDN’T YOU JUST SAY SOMETHING???” 

“I have to say something, but at this point, how?” 

“I don’t want to upset her or make her uncomfortable, but her words upset me and I’m uncomfortable that she used them. Is her comfort more of a priority of my own? Of my son’s and others with developmental and intellectual disabilities? Of their parents?” 

“She’s been so nice. Do I really want to call her out on this?”

When she moved to take my blood pressure and there was a brief pause, I said to her as calmly and respectfully as possible, “You know when you said something about people being offended so easily? Well, then you used the word ‘retarded’ and that actually does offend me because my son has Down syndrome.”

As was illustrated for me today, I know that there are people who continue to use the word retarded despite knowing it’s offensive. Much like the n-word. I would say that perhaps they continue to freely speak it because they haven’t heard that it’s offensive and believe it’s still an appropriate adjective to use in describing something, but I just have a really hard time believing that. (Unless they’re like 100-years-old, then maybe. Otherwise, no.)

I also know that there are a lot of people who recognize and agree that using the word ‘retarded’ is offensive and shouldn’t be used. These are the people who have likely erased it from their vocabulary. I would also venture to guess that a lot of these people cringe when they hear someone else say it and do exactly what I’ve done so many times in the past:

Nothing. Keep your mouth shut. Silently congratulate yourself for not using that word.

I get it. Addressing the use of an offensive slur can be hard and uncomfortable no matter if it’s a loved one or a stranger. There’s a chance that you could find yourself on the receiving end of some more offensive language when you’ve done nothing to deserve it. There’s a chance that you could be ridiculed or even ostracized. There’s a chance you could jeopardize a relationship.

However, not addressing it is giving your silent approval. Yes, in some cases, silence can speak volumes in letting someone know you have been wronged. However, in a situation like this, silence is the equivalent of saying,”Hey, you used the r-word and I find that really offensive, and a lot of other people do, too, but it’s okay if you want to keep saying it.” 

Silence is complicity.

– Albert Einstein

I have to admit that one of the reasons I was able to speak up today is because I’ve been mentally preparing myself since the last time I didn’t speak up. I’ve literally been practicing different ways to respond in my head for a couple of years now because I refuse to stay silent about it ever again.

How can you prepare yourself for speaking up and calling someone in when they have said or done something offensive?

  • Commit to speaking up the very next time it happens.
  • Practice some things you could say: “Don’t you think it’s time to find a new word?”; “You know, that’s a really offensive word to a lot of people and I don’t think you’re wanting to offend anyone, right?”; “Using that word makes you sound really insensitive/uneducated.”
  • Show a picture of Moses or another person with Down syndrome or intellectual disability and ask, “Would you say that to this person’s face? If not, you might want to consider saying it at all.”
  • Have an exit plan. Be ready to say that you’re not comfortable being in a conversation with someone that uses that word and excuse yourself from the conversation.

In the end, you have to just rip the bandaid off and say or do something. A wise person recently reminded me that how the person or people respond to you standing up for an issue is not your concern. You have no control over whether or not she will listen respectfully or fly off the handle. And whatever her response is really isn’t about you, anyway. It’s about her. Her values, her respect of others, her willingness to listen to understand, or a lack thereof. 

I have to give the woman today props for her response today. Did she apologize? No, she didn’t. She also didn’t shut down or get defensive. She was a quiet for a moment while she finished taking my blood pressure, and then our conversation resumed. She even asked me if I knew Moses had Down syndrome before he was born, and I was more than happy to answer her question.

As I left there today, I like to think that she’s going to reflect on our conversation today and reconsider her use of the r-word. She might, and she might not. What I know for certain is that I left there today having advocated for my son and others who are not always able to speak up for themselves. And I have to say, refusing to keep my mouth shut feels really, really right.

Morals, Not Politics

“But we have retards…I’m sorry, I know that’s an offensive word, and I’m not trying to talk down on people with Down syndrome, but that’s what these people are. These people are so stupid and ignorant they cannot put something common sense in place…”

Marjorie Taylor Greene, United States House of Representatives (GA)

This comment was made in a video by this person a few months ago. I first learned of it a few days ago. After I watched and listened to it a couple of times, I decided I wasn’t going to say anything because I don’t like getting into politics. I don’t even know this woman and she doesn’t represent me or my state so why bother, right?

But the more I’ve thought about it, I know I have to say something.

For me, it has nothing to do about politics and it has everything to do with morals. It has nothing to do with being a Republican or a Democrat and it has everything to do with the standard of what is and is not acceptable in our present-day society.

First of all, I don’t care who you are and I don’t care what you are talking about. If you know a word is offensive and you choose to say it anyway, saying ‘I’m sorry’ doesn’t remove the insult from the word you said. For example, if I said to you, “No offense, but you’re really ugly.” Does the first part cancel out the second? No, it doesn’t. The words ‘retard’ and ‘retarded’ used in relation to describing a person or group of people have been recognized as extremely offensive for well over 10 years. I’m pretty sure that’s an ample amount of time for anyone born before 2009 to remove it from their vocabulary when referring to a person or group of people. Let me be clear: Saying “no offense” before or after the word ‘retard’ or ‘retards’ does not make it inoffensive. Ever. Pointing to a group of people who are still fighting to have their worth as human beings recognized to illustrate who you think of when you say the word ‘retards’ only serves to compound the offense.

Secondly, did you notice that she went on to identify a group of people that comes to her mind when referring to ‘retards’? Who she compared those who are “so stupid and ignorant they cannot put something common sense in place…”? Yep, people with Down syndrome. Someone like my son. Someone like my Goddaughter. People like our friends that have Down syndrome.

Moses Moyers, a 4-year-old with Down syndrome as well as common sense.

Here’s where I’m going to bring in politics. I am so tired of hearing people say things like, “Well, he said that because he’s a Republican/Democrat.” A political party doesn’t speak, people speak. A political party has ideals and views, but people choose what words come out of their mouths. This person didn’t say what she said because she represents a certain political party. She said it because she is a human being who thinks it’s okay to demean one group of people by referring to another group of people to serve as an example of her offensive slur.

What bothers me the most, though, is that there are going to be some people who know me and claim to care about my son yet will stay quiet about this elected official using the word ‘retards’ as well as calling out people with Down syndrome to give illustration to the word. They will stay quiet because they identify with the same political party that she is a part of or because they agree with the issue she was trying to make a point about. I honestly don’t care if they are a member of her party or if they agree with her stance on the issue she was talking about. I don’t care. What I care about is excusing and/or agreeing with her use of words and her belief about people with Down syndrome.

During the past few months, I have witnessed an alarming number of people who excuse or even support immoral and unethical behavior in the name of a political party. It frightens me that people would allow a political party affiliation to come before God’s commandment to love thy neighbor as thyself. On both sides of the political spectrum I have seen and heard so much hate and disrespect which is somehow deemed acceptable in the name of party loyalty. It’s as though somehow political parties have come to set the moral standards for their members instead of vice versa. I personally choose to stay out of political discussions because of their negative nature, even among people who identify with the same party. However, when that hate and disrespect extends to people who didn’t ask to be involved in the narrative, I am going to speak up.

I’m not asking for anyone to jump party lines to denounce the words of this person. What I am asking is that you understand that on a moral level what she said was so incredibly wrong and offensive to so many people. Some of which I’m going to guess she’s claiming to care about or represent. But without words and actions to back that up, then her claim is only that. You can be a member of a political party and not support some of the people and practices associated with it. (Trust me, I know this from experience.)

Last night I prayed for the person who said these words. I also prayed that others would not see her as an example to follow. I prayed for the words to address this issue in a way that was respectful yet firm in repeating myself and countless others in saying that using the words ‘retard’ and/or ‘retarded’ to describe a person is offensive and inexcusable. I pray that you and your sense of morals will not support that.

Friends and Buddies…Bro Dogs

I finally watched The Peanut Butter Falcon yesterday.  

If you haven’t heard of it, it’s a movie that features a young man with Down syndrome pursuing his dream of going to a wrestling school run by his favorite wrestler. And by pursuing, I mean running away from the retirement home he was confined to. 

Since it came out last summer, I had heard good things about the movie and how it promotes inclusion of people with Down syndrome. 

(In the educational world, inclusion is one of the current buzzwords. I really like this definition of inclusive mindset: “A non-judgmental belief that all individual experiences are valuable and are met with empathy, compassion and emotional intelligence.”) (https://images.app.goo.gl/5ypPJ96WrXCLWqcT8)

The thing that I absolutely loved about the movie was how Zak, the person with Down syndrome, was treated by Tyler, his travel companion. 

It was not what I expected. 

I figured it would be one of those stories in which the typically-developing person went through a personal transformation and changed his perception of people with Down syndrome by the end of the movie.

To my surprise, Tyler had an inclusive mindset. 

He treated Zak like a normal person from the get-go. 

Yes, he saw that Zak had Down syndrome. He also saw that he was alone. He literally had nothing other than his underwear and a goal. 

Tyler could empathize with that. He didn’t have anyone or much of anything, either.

He showed Zak compassion rather than pity or disdain. 

He showed emotional intelligence in that he developed a relationship with Zak for the person he is. He acknowledged Zak’s Down syndrome but it wasn’t what he focused on. 

One of my favorite lines in the movie was early on when Tyler told him,

“I ain’t doing no charity shit, it’s just on my way.”

(The Peanut Butter Falcon)

People with Down syndrome are not charity cases. They are not tickets to viral internet videos and 5-minutes of fame. They are not a means to help yourself feel good by befriending them. They are not accessories to invite to parties to boost your reputation as being “inclusive”. 

The relationship that developed between Zak and Tyler is what I pray for Moses to have in his life. 

That he has friends who want to hang out with him and include him because he’s an awesome, fun kid. Not because he has Down syndrome and they’re supposed to be nice to kids with disabilities. 

That he has friends who talk to him like a person. That they don’t dumb things down and insult his intelligence. That they don’t take advantage of the times when he doesn’t understand fully what they’re saying and mock him. 

I pray that he has relationships with people who love and care about him for who he is wholly. Not only because he has Down syndrome. 

I know it was a movie, but the relationship that Zak and Tyler had is what I want for Moses in real life. 

I pray that he finds his own  “…friends and buddies…bro dogs…” (The Peanut Butter Falcon)

The Peanut Butter Falcon. Directors Tyler Nilson and Michael Schwartz. 2019. Film.

Early Education in Down Syndrome

This week I got to Zoom with my 4th grade students during their Counseling time. It was so great to get to see their faces and hear their voices! We weren’t Zooming just so they could sing ‘Happy Birthday’ to me, though. We were Zooming so we could talk about Down syndrome.

October is Down Syndrome Awareness Month and it’s also the month my school district celebrates Disabilities Awareness Week. It’s one of my favorite weeks/months of the school year because I love getting to teach my kids that having a disability does not mean there is something wrong with a person. It means that there is something different with the way a person’s body or mind, or sometimes both, work. We learn about different types of disabilities while always keeping our focus on the fact that a person with a disability is a person that deserves to be treated with kindness and respect.

For each class I gave them a basic explanation of the chromosomes and the extra copy people with Down syndrome have, some of the differences that causes for their brain and body, and how much they are able to learn to do when given the chance. Then I asked if anyone had questions about Down syndrome.

The students in the class I Zoomed with on Tuesday morning were either still half asleep, bored to tears, and/or experts on Down syndrome already so none of them had questions.

By Tuesday afternoon, I was questioning whether or not it was worth doing the next two days. If the information I was sharing with them was appropriate and meaningful or just falling on deaf ears. If spending the time talking with them would even make a difference.

As I Zoomed with another class on Wednesday morning, I could tell the students were a little more engaged as I went over the same basic information. When I invited them to ask questions, hands quickly went up into the air.

“Is it similar to autism?”

“Can you catch Down syndrome from someone who has it?”

“Is it rare?”

“Can it be cured?”

It was awesome! I answered their questions the best I could and loved the effort they were giving in trying to understand Down syndrome.

Today’s session was good, too. One student asked if kids with Down syndrome behaved worse than other kids, and another asked if kids with Down syndrome could breathe okay.

It was yesterday’s session, though, that helped me to know that doing this wasn’t a waste of time.

Down syndrome isn’t rare. It’s the most common chromosomal condition that occurs in babies. About 1 in every 700 babies are born with Down syndrome. That number would be higher but unfortunately approximately 67% of women choose to terminate their pregnancy following a prenatal diagnosis.

There is no cure for Down syndrome. And as I told my students, I wouldn’t want there to be one. Because if Moses didn’t have that extra chromosome, he wouldn’t be Moses. Same goes for a lot of other awesome people with Down syndrome.

My hope is that one or more (or all) of those amazing young kids will grow up and make a difference in the life of someone with Down syndrome.

Maybe one of them will be a doctor who tells expectant mothers, “Your baby has Down syndrome. I know this news is unexpected and not necessarily what you wanted to hear, but I want you to know that there is no reason to believe that your child won’t lead a very fulfilling life.”

A nurse that says, “Congratulations! You baby is beautiful and perfect.”

A teacher who says, “Let’s see what works best for you so that you can learn as much as you can while you’re in my class.”

A policy maker that understands people with Down syndrome deserve fair access to things like life insurance and organ transplants.

An employer that welcomes people with Down syndrome to work at their business in a capacity that is appropriate for them. That provides the training and opportunity for them to be successful and contribute to the success of the business.

A friend who accepts a person with Down syndrome for who he or she is. Who isn’t nice because you’re supposed to be nice to people with disabilities but because she truly enjoys being around him.

A partner or spouse who resists the urge to bail upon hearing the diagnosis. Who chooses to stay and love and support the mother and child through all the ups and downs.

A mother who refuses to abort the life growing inside her. Who chooses to love her baby unconditionally regardless of the number of chromosomes it has. Who chooses to focus on all that her child will be able to do when the world wants to tell her all about what it won’t be able to do. 

In the world of Down syndrome, we are taught that early intervention is key for the successful development of our children.

I believe that early education is also essential for progress to continue to be made when it comes to the Down syndrome community. Talk to your kids. Teach them about Down syndrome and other disabilities so that when they find themselves around someone who has an extra chromosome, who might sound a little “funny” when he talks, who needs a little extra time to understand what she’s hearing, or whose brain or body works a little differently in other ways, they know what to do.

Be kind. 

Show respect. 

Choose love.

A Letter to Mrs. Cordelia

In honor of Down Syndrome Awareness Month, I want to share about one of my special role-models, Mrs. Cordelia Conn, through a letter I’ve written countless times to her in my head: 

Dear Mrs. Cordelia,

You had no idea, but you were one of the early pioneers and advocates for people with Down syndrome and a personal role model for me. And you did it simply by being the best mom you could be to Patrick.

When I was younger, I always admired you. You had a confidence about you that even a young girl like me could pick up on. You had the sense of humor that was essential in being a mother of seven. There was a genuineness and openness about you that just felt safe. You told it like it was without a cloud of anger or judgment hanging over your statements. 

What I remember most, though, was how you were with Patrick. How you acted like he was a normal human being that belonged anywhere he wanted to be and especially belonged wherever you were – church, parties, Boomland, etc. You didn’t try to hide that he had Down syndrome, and you didn’t emphasize it, either. You made it clear that Patrick was not a person to be pitied or coddled. You had expectations of him and didn’t make excuses for him when he did or said something you didn’t approve of. Most importantly, you treated him with respect and love, and I saw that. 

Neither one of us knew it yet, but God did. He knew that I needed a role-model to look to when I had my own son with Down syndrome. He knew that I needed more than to just know Patrick and see all that he was able to do. He knew I needed to know you. To see you as a mom to Patrick so I would know what kind of mom I would want to be to my own son. 

When I got to sit down and talk with you last September, you told me that you didn’t know that Patrick had Down syndrome until you took him to your family doctor for his first round of routine immunizations when he was two-months-old or older. 

After I picked my jaw up off the floor, I asked you if you thought the doctors and nurses knew he had Down syndrome when he was born, and you said, “Supposedly they did, but they thought maybe I couldn’t handle it. Who knows what their feelings were?” When I asked if he was healthy as a baby, you again just said, “Supposedly.” To say I was shocked to hear these things is a gross understatement because in the world of information overload we live in today, the chances of a baby being born with Down syndrome and it not being communicated to the mother is virtually unfathomable. To not know if he or she had any medical conditions that would need additional medical attention or care. 

But that’s what makes you so incredible. I honestly don’t think it mattered that you didn’t know right away that Patrick had Down syndrome. Because Down syndrome or not, he was your baby and you were going to love and provide for him the best you could. 

You may have only met Moses a handful of times, but your impact on him is much more than the sum of your brief meetings. Because of you, he had a mom that was ready to accept, respect, see, and love him for the person he is and will become. 

As we talked, you were amazed that Moses has been receiving therapies since he was 6-weeks old. That he was about to start preschool and would be going to school just like any other child. Those things were not available for Patrick, but yet you still made sure that he wasn’t just tucked away and dismissed. You gave him the opportunities to grow. To be seen. To be known. 

Along with a journal and some of Patrick’s old books, you gave me an angel to take home to Moses. You told me to put it up so that he couldn’t reach it and so that it could watch over him. I’m thankful to know that he has another even better angel looking over him now. 

Thank you, Mrs. Cordelia. With my whole heart I thank you for being the mom you were to Patrick so I could be the mom I am to Moses. 

Love, 

Jenny (a.k.a. Moses’ mom)

In loving memory of Mrs. Cordelia Ann Rock Conn (1928 – 2019)

Seeing Him

Over the last four years, I’ve heard or read about parents who say “I don’t even see my child’s Down syndrome anymore.” 

Me?

I’m still waiting.

I’ll be honest, in the last 3 years and 11 months, not a day has gone by that I don’t see something about Moses and think about him having Down syndrome. Sometimes it’s a facial expression. Sometimes it’s because I see him working to master a new skill or doing something I’ve never seen him do before. Sometimes it’s because of something totally random and I find myself thinking about Down syndrome and him.

There have been days that I’ve wondered, “What’s wrong with me?”. Why is it that these other parents can look at their child for an entire day and not once think about the fact that he or she has Down syndrome, yet somehow I can’t? 

Then last night it hit me that there’s absolutely nothing wrong with me. There is nothing wrong in me seeing my son for who he is. Seeing all of who he is. Including the extra chromosome that makes him so wonderfully and uniquely him. 

Yes, in so many ways, he really is like any other nearly 4-year-old kid. He makes messes, gets into his sister’s things, throws fits, says “Mom” on repeat throughout the day, and resists going to bed. 

I see that.

I also see his beautiful almond-shaped eyes that all but disappear when he laughs. I hear his muffled speech and celebrate when he says another word more clearly than he did yesterday. I see him work hard to open his yogurt by himself and cheer for himself when he succeeds. I see his smile that can get so big it takes up his entire face. 

Why wouldn’t I want to see those things? 

To say “I don’t see his Down syndrome.” is akin to saying, “I don’t see him.” 

As if having an extra chromosome is wrong. As if there is something wrong with him being fully and completely him. 

I’m no longer going to wonder when the day will come that I won’t see that he has Down syndrome. It’s a part of what makes him my Moses Alexander the Great, and he deserves to be seen.

Stepping Up Awareness

When I let people know that it’s time for the Step Up for Down Syndrome Walk either in St. Louis or Cape Girardeau, I always get such an overwhelmingly positive response from family members and friends wanting to show their support for Moses and the Down syndrome community. 

When it’s getting close to World Down Syndrome Day (March 21) and I ask people to wear a blue and/or yellow shirt (the colors for Down syndrome) and/or crazy socks (because chromosomes have a shape similar to socks), I again get a fantastic response of people showing their love for Moses and others with Down syndrome. 

Last October, in honor of Down Syndrome Awareness Month, I posted pictures and information about Down syndrome almost daily, including its history, quotes, challenges people and families with Down syndrome face, etc. Some of the things were pretty common knowledge, such as Down syndrome is caused by the presence of three number 21 chromosomes in each cell. Some of the information was a little lesser known, like that from 1946 until 1979 many children with Down syndrome were institutionalized because according to Dr. Benjamin Spock they existed at a level that was “hardly human”. Once again, the supportive and appreciative feedback was amazing. 

Since Moses was born, I have learned so much about Down syndrome not just by watching and observing him as he’s grown and developed, but also from talking to other people that have family members or friends with Down syndrome. From reading and learning about its history which paints a sometimes horrifying picture of how individuals with Down syndrome were treated. Early on in our country’s existence, people with Down syndrome (including children) were treated very inhumanely. The institutions many of them were sent to denied people with Down syndrome everything from healthcare to plumbing. They were forcibly sterilized. Feeding a baby with Down syndrome was considered a lifesaving procedure so many doctors refused to allow that type of “treatment”. These types of things were still happening in recent history. For example, in 1981, when a baby was born in Bloomington, Indiana with a blocked esophagus (the tube that connects the throat and stomach), the doctors advised the parents to decline the life-saving surgery the baby needed to survive. Because the baby had Down syndrome. Unfortunately, the parents took the doctors’ advice and the baby starved to death (Global Down Syndrome Foundation). I was born in 1980. That means that these discriminatory, and at times lethal, practices were happening within my lifetime.

Sickening, right?

Which is why having those different events and opportunities to increase awareness and support for individuals with Down syndrome is so important. Otherwise, the history of they have endured may be forgotten, or worse, repeated. The progress that has been made and the work that continues to be done may lose ground. None of these options is acceptable which is why I will continue to work hard to advocate for my son and the Down syndrome community.

Even though it’s not time to Step Up for Down Syndrome or for any other awareness event, a thought struck me today that I haven’t been able to get out of my head. I realized that when I put information out about any Down syndrome awareness events or anything about Down syndrome in general, there is one thing has never happened. 

Not one person has ever asked, “Why aren’t you walking for ALL disabilities?” or “Aren’t ALL people with disabilities important?” or “Shouldn’t you be raising awareness for ALL disabilities?” 

Each of those would be fair questions because the history of how people with Down syndrome have been treated is a history that is shared by all people with intellectual and developmental disabilities. The killing, institutionalization, sterilization, discrimination, etc. were practices extended to all types of disabilities. 

So do I think that all types of disabilities deserve efforts to raise awareness?

Absolutely. 

But my son has Down syndrome. And Down syndrome is different in many ways than other types of disabilities. To group all disabilities together always would hinder the goal of increasing knowledge and awareness about not just Down syndrome, but other disabilities such as congenital heart defects, autism, spina bifida, cerebral palsy, and the list goes on and on. When I’m advocating for Moses and the Down syndrome community, I’m not saying that those other types of disabilities are less important. That the people with those disabilities are less important. I’m just working to raise awareness about issues and challenges individuals with Down syndrome face, some of which are unique to Down syndrome. Just as there is unique information about each different type of disability. Which, interestingly enough, seems to just be understood. It has never required an explanation from me or anyone else that I know of. 

I understand there are some people that don’t understand or are opposed to the Black Lives Matter movement. I’m not proud to admit that six years ago when Michael Brown was killed and I first heard that phrase, I didn’t understand or support it. 

However, having a child that belongs to a group that has been subjected to unfair practices and still has to fight for certain rights and opportunities helps me to understand. Having a child that isn’t able to advocate for himself but still has needs and rights that deserve to be met helps me to understand. Having Moses has helped me to develop empathy for another group that has been subjected to unfair practices and still has to fight for certain rights and opportunities.

Yes, all lives matter. But all lives are not being subjected to individual-level and systemic-level racism and discrimination in various forms every single day, and have been for hundreds of years, all because of skin color. (Which, in my humble opinion, is extremely immature. It’s like Josie saying she doesn’t like pesto because it’s green.)

Saying “Black Lives Matter” doesn’t diminish the importance or value of any other lives any more than Stepping Up for Down Syndrome doesn’t mean that other disabilities aren’t worthy of an awareness event. Some may say I’m comparing apples and oranges, but I honestly don’t see it that way. Here’s how I see it: There is a group of people in our country that need and deserve our love and support right now to show that all lives really do matter by understanding and saying “Black Lives Matter”.  I hope you’ll join me in stepping up to do just that.

Communication: More Than Just Talking

“Mom, when is Moses going to start talking?”

That’s the question Josie asks me every so often.

My usual answer is, “When he’s ready.”

That answer does little to satisfy her. And I get it. She knows he’s 3-years-old. She knows that Moses’ best friend next door is three and has been talking up a storm for a while now. She sees videos of herself talking when she was younger than three. She also sees that physically, Moses is doing what most other three-year-olds are doing as far was walking, playing, eating, etc. So I get it that it’s hard for her to understand why Moses can do some of things that other kids his age are able to do but not others. Like talk.

To be fair to him, he does talk. I compare it to the babbling that babies do as a precursor to talking. And to be honest, it’s pretty freaking cute. Sometimes it’s just one or two sounds in response to something. Other times it’s a long-winded lecture about something that is not to his liking. My favorite is when he gets really excited and does this high-pitched cheer with a huge smile on his face.

He does know some actual words: Ma, Da, ball, Alexa, yes (with an emphasis on the ‘s’), and no.

But there are many more that he knows but isn’t able to pronounce accurately. For example, “de” is “thank you” and “come” is “welcome”. For the most part, when he says certain things I know what he’s saying. I know that when he says “ble” he wants a cutie, “Bo” is “Elmo”, “Ca” is “Cookie”, and “Gar” is “Oscar”. He also knows the signs for “more”, “please”, “thank you”, “milk”, and a few more.

His go-to form of communication is to either say “c’mere” or grab my hand and walk me to what he wants. If it’s something in a cabinet or the refrigerator, he’ll point to and guide me with “yes” and “no”.

Besides, he communicates in so many other ways.

Is it always easy? No. There are times when, despite both of our best efforts, I cannot figure out what he wants or is trying to tell me. There are times that I know he knows exactly what I’m telling him to do or not to do, like pick up the apple he threw down, and he openly defies me. There are times that I need him to understand what I’m telling him to do or not do, like go outside by himself, and I know he just doesn’t understand yet. There are tears and shouts of frustration for both of us at times.

But overall, I don’t consider his delay in speech to be a major issue.

Besides, he communicates in so many other ways that are even better than words.

Like the way his face lights up when he sees me walk in the door. The way he gets up, does his little preparatory dance, yells “Ma!”, and then runs to hug me. The way he giggles when I chase him around the kitchen. The way he watches and mimics Josie, especially when she’s dancing. The way his lower lip sticks out and he tucks his chin down when he gets hurt or sad. The way he pats my back as I hold him and hug him tight. The way he cuts his eyes to the side before he makes a break for it when I’m trying to get him dressed.

One of the most common questions I see posted from mothers who have just found out their baby will have or does have Down syndrome is, “What can I expect?” And I know from experience that what they’re really asking is, “What hardships or challenges can I expect?” It’s no secret that a person with Down syndrome will have physical and cognitive delays to some degree. However, what I feel like it is virtually impossible to help those new or expecting parents to realize is that those delays will actually serve to highlight strengths not only within their child but within themselves.

Josie started talking when she was a year old and hasn’t looked back. Knowing what she was thinking, needed, or wanted has never been hard to figure out. To be honest, I feel like we were quite spoiled in regards to the ease in which we were able to communicate with her early on.

However, with Moses, I feel like we have actually been given the gift of realizing that communication goes much deeper than words. With him, his communication might be more underdeveloped for his chronological age, but in that I find that it still has more of the simplicity, authenticity, and genuineness of that of a younger child. With him I don’t have to wonder if he truly means what he’s communicating because he is still so genuine in what he feels, needs, and wants. Sure, I may have to pay more attention to his nonverbal cues, but is that really such a bad thing? Especially if it means that I am more in tune with my child and it also helps me to be more in tune with others that I communicate with?

The next time you’re talking with someone, take the time to pay attention to how her eyes light up when she’s talking about something she’s passionate about. Or how his body language changes as he searches for the right words to explain what he’s thinking and feeling. Think about whether or not her facial expression and tone match up with the words she’s saying. Pay attention to these things within yourself, too. Are you fully communicating your honest thoughts and feelings?

Moses has taught me that when it comes down to it, while spoken words are important and meaningful, the true beauty of communication goes far beyond words. The beauty is found in the genuine and raw thought and emotion that children are so artful at showing. Adults are capable of showing the same thing but learn to mask it for a variety of reasons. Moses communicates in his way without malice, without ridicule, without hidden meaning or agenda. I never knew that my child with a speech delay would be teaching me lessons on communicating. But then again, I shouldn’t be that surprised. He is pretty extraordinary.

Letting Faith Be Bigger Than Fear

When Josie was a newborn, every night that I would lay down to go to sleep after putting her down to sleep, I would immediately begin to panic. I can remember craving sleep so badly but being scared to go to sleep because I might not hear her if she needed me. That’s when I learned to turn my worries into a prayer. I would fall asleep while repeating “Worry about nothing, pray about everything…God, keep my baby safe” in my mind.

After a while, my fears began to lessen as I grew more confident in being a mom and Josie continued to grow bigger and stronger. When Moses came along, I had the familiar sense of panic set it at night during the first couple of weeks, but so did the familiar prayer.

For the past few days, I’ve been wearing a bracelet a former student gave me when Moses was about to have surgery to repair the hole in his heart. The bracelet simply says “Faith, Not Fear”.

That has been a struggle for me during the last couple of months.

I keep going back to a flippant comment I made back in early March when concern about this virus really began picking up. It was basically along the lines of “natural selection is still a thing and unfortunately some people are just going to be too weak to survive this”. Obviously, at the time I had no idea about the horrific, grim realities of this virus or that my son is included in the category of the weak. I also remember casually commenting that “ultimately God is in control despite our best efforts”. (I would seriously like to go back and slap myself across the face for being so nonchalant about it all.)

Because of Moses’ history with complications from RSV (aka “the common cold”), he is considered high risk. Also, there is some research coming out that the extra chromosome Moses has carries immune system genes that are overexpressed and may increase the chances that the virus will result in serious complications or death. So yeah, there’s that.

Earlier this week, he had a cardiology appointment to make sure the device that fixed the hole in his heart was still in place, not blocking any veins or arteries, and that there was no enlargement of his heart or increased pressure on his lungs. Thankfully, he got a glowing report from his echocardiogram and EKG.

So the good news is that his heart is healthy and strong.

When I talked to the cardiologist as well as the nurse practitioner from the Down syndrome clinic at Children’s Hospital, they both said that while it’s good news about his heart, there’s no way to predict how his body will respond when he is exposed to COVID-19. Their recommendation was to continue limited social contact and practice social distancing guidelines when we are around people.

As Tyson and I were talking about starting to see people again socially that evening, I could feel my heart beating faster. I can feel it now as I type just thinking about exposing Moses to the virus.

The thing is, the logical part of my brain (the “upstairs brain” as Dan Siegel would put it) knows that I can’t protect Moses from being exposed to COVID-19 any more than I can protect him from being exposed to the flu or RSV without completely isolating ourselves from the world. That’s just not possible for so many reasons, but one of the main ones is that it’s not fair to Josie. She’s a people person. She misses her friends. She misses her grandparents. She misses her cousins. She needs social interaction.

I also know that we simply don’t know how Moses will respond to COVID-19. He could be asymptomatic. He could have mild-to-moderate symptoms. He could require hospitalization. He could require ventilation. He could recover. He could not.

This is when the logical part of my brain is overtaken by the emotional part. The “downstairs brain”. The part that drowns out “Worry about nothing, pray about everything”.

Did you know that when a person is on a ventilator, the monitor that it’s hooked up to shows how much work the patient is doing as far as breathing? I didn’t know that until about 3 days after Moses had been on the ventilator. I noticed that the second wave form had two colors instead of just one. I want to say that it had been solid red, but then I noticed a little purple at the bottom of the wave. (I could be wrong about the colors, but it’s really beside the point.) The point is, I had been staring at that monitor, watching the waves, watching his heart rate, oxygen saturation level, and blood pressure numbers for 3 days, and I didn’t know that the middle wave, the red one, was showing that the machine was doing all the work for Moses. He was not doing any work to breathe. The ventilator was doing it all for him.

For three days.

Did you know that being on a ventilator means that you are on life support? I didn’t know that until about 3 months after Moses had been home and a friend mentioned how scary it must have been for him to be on life support. I remember shaking my head and telling her he hadn’t been on life support, just a ventilator. She gently told me that being on a ventilator was life support. When I looked it up later and saw that she was right, I was horrified.

Did you know that my worst fear is that I would have to watch my sweet boy be on life support again? To stare at the monitor and will him to do some of the work to breathe. To know that if he wasn’t on that ventilator, his body would grow too tired and too weak and his organs would begin shutting down.

Did you know that my absolute worst fear is that this time I wouldn’t get to bring him home?

To even think about it makes me want to hole up in my house with just the four of us until there is a vaccine and/or a proven, effective treatment for this stupid virus.

But I know that’s not healthy or fair for us. Even Moses. He needs more social interaction just as much as Josie does. Even staying home doesn’t guarantee he won’t somehow get it.

In short, I am not in control here. And that scares the shit out of me, more now than ever.

Trust me, I’ve been praying.

Every day.

For the health and safety of my whole family.

I’m doing my best to turn my worries into prayers and then trusting that God will hear and answer them the way I want him to.

A few weeks ago, I read an editorial by Bishop Edward Rice in which he reminds us that “faith is easy when everything is going well” and that some people think “…if I believe, then nothing bad should ever happen to me”. I agree with the first statement, and I know the second statement is not true. I also know that just because bad things do happen, it doesn’t mean that God has left me. It’s then that He’s with me the most. That He’s going to help me through the trials, heartbreak, and pain that come with life. That He’s going to hold me when I’m worn down and need to rest. And that He’ll give me the strength to keep moving forward.

As hard as it might be, I know it’s time to live by the words “Faith, Not Fear”. It’s time open our doors and begin to venture back out into the world. I’m not saying I’m ready to throw caution to the wind, start shouting “QUE SERA, SERA!”, and go hit up the next massive pool party. But I am ready to let my faith be bigger than my fears. To know and to trust that whatever God’s will is, whatever He has planned for Moses, Josie, Tyson, and me, He is in control and will be with us the whole time.

Fear can be paralyzing. Especially when the thing you fear is something you’ve experienced before. Faith is what allows you to be able to move again. It’s not always easy for us humans to let our faith be bigger than our fear, but thankfully we have a patient, understanding God who is always with us to help us get moving again.

Trust God…But Don’t Stand Up in a Small Boat

Here in our little corner of Southeast Missouri, things are going to start returning to a new version of “normal” tomorrow.

The way I understand it, the guidelines set forth by the Stay at Home Order will be lifted to a certain extent. Businesses are expected to follow certain guidelines to ensure the healthy and safety of their customers and employees. However, there is no restriction on the size of social gatherings although the 6-foot social distancing practice is still being encouraged.

For small business owners, I’m happy for them. Especially the ones that have been completely closed for the past four weeks.

For those who have felt any personal strain of the Stay at Home Order, I’m hopeful they will find some relief, too.

As for me, my anxiety is back and I am dreading May 4th.

Believe me when I say I am ready to be able to see and hug my parents. To have a glass of wine (or three) with my friends in person. To go to the grocery store without wearing a mask or fearing I’m going to infect my family despite my best efforts to sanitize everything before it goes into the house.

Today I have cried as I’ve grieved not getting to hug my parents when they came to visit us through the window and bring the kids cookies.

I’ve cried because I’m scared this virus is going to come back if businesses don’t adhere to the guidelines for keeping their customers and employees safe. If people don’t continue to practice social distancing as they are being encouraged to do.

I’ve cried because I miss my family. I miss my friends. I miss my students. I miss my work family.

But I also know that for my family, we have to continue staying home. We have to continue doing everything we can to stay healthy.

As I wrote before, Moses is considered high-risk not so much because he has Down syndrome but because of his history of respiratory complications. If RSV, a common cold for most people, could put him in the hospital requiring oxygen less than 5 months ago, I don’t want to know what COVID-19 could do to him. But I do know that I never want to have to relive watching him be kept alive by a ventilator, which is what I had to do for 6 excruciating days when he was just 3 months old. And which is what could very well be what would have to happen again if he had complications from COVID-19. Trust me when I say that if you’ve never sat by the hospital bed where someone you loved more than life itself was laying, watched the monitor, and prayed that their oxygen level stayed above 90 so that the alarm wouldn’t go off again, it’s not something you ever want to do.

It’s not just Moses that I want to keep safe, though. Over the last month, I’ve read stories about seemingly healthy children and adults in their 20s, 30s, and 40s who have fallen victim to this relentless and unforgiving virus. So while Josie, Tyson, and I are not considered to be in the “at-risk” population, it doesn’t magically grant us immunity from the virus and it’s possible ramifications.

There’s a sign in my in-law’s cabin at the lake that says “Trust God but don’t stand up in a small boat.” I fully trust that God is watching over my family and hears my prayers to continue letting us stay healthy. But when tomorrow comes and others open their doors and go back to “normal”, we’re going to go ahead and sit tight at home a little while longer.