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.

Stop Comparing, Start Working

In the past several weeks, I’ve had several conversations with people who are going through a hard time, and each of them has said, “I know this is nothing compared to what others are going through.” Or even, “I shouldn’t even be saying this to you because you have it even harder.”

I think most of us can say that we’ve been there, said that. We’ve tried to silver-line our situation by comparing our situation to one that seems harder. One of the last times I remember saying something along those lines was to my counselor. And she immediately said, “You’re not going to feed me that line, are you?”

Life is full of struggles. No one is exempt. Some are small, some are huge. Some come and go relatively quickly, and some might actually last a lifetime. There is no avoiding hard life experiences from time to time. And when they arise and we want nothing more than to make them disappear, the very last thing that’s going to make that happen is playing the comparison game. You comparing your struggles to mine or me comparing mine to yours at best provides temporary “relief”, but in the end is essentially as effective as trying to put toothpaste back in the tube once you’ve squeezed it all out.

You are not me, and I am not you. You do not have my past experiences, mindset, or perspectives nor do I have yours. What is a struggle to you may not be as much of a struggle to me. What’s a struggle to me might not even register as a hiccup in your day.

No testing has overtaken you that is not common to everyone. God is faithful, and He will not let you be tested beyond your strength, but with the testing He will also provide the way out so that you may be able to endure it.

(1 Corinthians 10:13)

We may all struggle in common areas of our life, such as relationships, work, and even faith, yet our struggles are unique to each of us because we are simply unique beings. You and I may be in the exact same difficult situation and perceive it much differently. As individuals, we are bound to perceive and process experiences differently for so many different reasons.

Take, for example, receiving constructive criticism at work. If we both work for the same organization in the same position, let’s say sales, and we are both told that our work performance has subpar and are given suggestions on how to improve, there is a really good chance and you and I will not have the same response. You will be able to listen openly to the feedback and be genuinely grateful for the suggestions. That’s because you have a beautiful growth mindset that helps you view mistakes as opportunities to learn and the confidence to know that, despite this current critique, you are still good at what you do and are going to just keep getting better. I, on the other hand, will be so devastated that I will barely be able listen to the words being spoken about me. That’s because my fixed mindset has taught me that mistakes mean I’m clearly not smart or good enough to do this job. I’m also a perfectionist and my main goals in life are to 1) never fail; and 2) never let anyone down. The constructive criticism has let me know that I am both failing and letting my boss down. I will likely give my two weeks notice tomorrow.

When you’re faced with a challenge, whether it be a poor work performance review, trouble within a relationship, the loss of a loved one, whatever it may be, comparing it to another’s situation isn’t going to help you. Even if you decide that his situation is worse or her challenge is greater than yours, it’s not like yours is going to magically stop being hard. That everything is going to *POOF!* be all better.

Since my counselor put me in my place, I have learned to stop comparing the tests that I experience in life to those of others.

For example, my son has Down syndrome. Yes, he can not only eat food, he also feeds himself. Yes, he can walk and run. Yes, he can do so many things that other kids with Down syndrome or other disabilities can’t. Yes, he brings an insane amount of joy and light to my life. Yes, there are still times when being his mom is hard. Yes, there are still things that he can’t do yet that I wish he could because it would make my life easier.

Comparing all this to someone else whose child has more or seemingly more difficult limitations doesn’t make the hard stuff go away. It also doesn’t help me to mentally or emotionally feel better.

Over time, I’ve learned to say, “This is hard for me right now.” For me – for my brain, for my emotions – this is hard.

There are no comparisons. No feelings of guilt. No excuses for why it gets to be hard for me.

Just acceptance that it’s hard. For me. Period.

I’ve learned to pray about what’s hard. Sometimes I even ask “Why, God? Why me? Why my family?” I ask for guidance and strength and patience and whatever else I need to get me through whatever situation I’m facing at the time. And then I trust that God knows my heart and He knows my mind. He knows my strengths and He knows my weaknesses. And He knows “why”. Which is why I know that He’ll give me who and/or what I need to be in the challenge or get through it.

I’ve learned to ask for help from others.

I’ve learned to say, “No.”

I’ve learned to accept that I am not in control.

I’ve learned to rest – physically, mentally, and emotionally.

I’ve learned to call my counselor when I need an unbiased ear to listen.

I’ve learned that my way is not the best nor the only way.

I’ve learned to keep my heart and my mind open to possibilities that I haven’t even thought of yet.

This is what has worked for me. Maybe some of it will work for you. Maybe it won’t. Because you are not me, and I am not you.

In the end, however, comparing ourselves and our troubles will not work for either of us. Let’s stop comparing and start working to figure out what will actually help us and do that instead.

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.

When He’s Ready

Last week, I took my kids to their pediatrician for their yearly wellness checks. 

Josie went first and got a clean bill of health with instructions to eat more fruits and veggies. 

Moses went next and squirmed like the wiggle worm he is while the doctor checked his heart, ears, and throat. 

When the doctor had Moses lay down with his head on my lap so he could check whatever needed to be checked in his nether regions, Moses put up a little fight and about kicked the doctor in his own nether regions. 

When the doctor pulled Moses’ pants down and saw his diaper, he said something to the effect of “I see potty training isn’t going well.” 

I was a little taken aback and explained that we’ve gone through spurts of Moses being interested over the last year and have had off-and-on success with getting him to go on the potty, but overall, he’s not really into it yet. 

The doctor’s response?

“So he’s lazy.”

This time I was a lot taken aback and said nothing. 

But just because I didn’t say anything doesn’t mean I wasn’t thinking plenty of things, including that I wish Moses would’ve kicked a little harder a few seconds before. I almost asked, “Do you mean he’s lazy or I am?” Because let’s face it, Moses isn’t going to take potty training matters into his own hands. 

So what did I do?

I came home, felt guilty that my kid wasn’t potty trained yet because I had allowed him to be lazy, and began mentally preparing myself to have him potty trained by Christmas. 

Monday morning I got the pull-ups out and started making Moses sit on the toilet every 10 – 15 minutes. One time he peed. The other times he yelled and made it clear he did not appreciate being on the toilet. By the end of the day, he was happily in his diaper and I was feeling sane again.

Here’s the thing. I know my son. I know him much better than this man who sees him a handful of times a year. I know that him not being potty trained has more to do with him not being ready than either of us being lazy. Could I put him through potty training boot camp and force him to become potty trained? Probably. But again, I know my son and I know that this approach is not the best for him. (Or for me for that matter.) 

He’s just not ready. 

Would I love for Moses to be potty trained? 

Well, yeah. I’ve never met a parent who says, “Changing diapers is my favorite.” Especially when the child can contort and twist and put up a fight like none other. 

From what I’ve learned about potty training kids with Down syndrome, it’s pretty common for them to be closer to 5 or 6 before it really clicks for them for a variety of reasons: cognitive ability, bladder control, realizing the sensation of needing to go, etc. 

Some kids with Down syndrome are successfully potty trained by the time they’re 3 or 4. Which is fantastic for them! And another piece of evidence that God didn’t use a cookie cutter when making our kids. I’ve also read accounts of parents in which their child with Down syndrome was seemingly potty trained for a while and then suddenly reverted back to being in diapers. 

I know that other parents have different theories and ideas about potty training for kids with and without Down syndrome. And I hope that those work well for them. 

This experience has once again reminded me that while books and doctors may say what my child “should” being doing by certain ages, and that other people may have opinions about what he’s ready for, I know him best. He depends on me to do what’s best for him, not what’s best in the eyes of or for the convenience of others. I hope other parents remember that, too, whether their child has a disability or not. 

I know he’s going to knock potty training out the park. Just like he’s done for learning to drink out of a straw, crawl, walk, go up and down the stairs, use a spoon (and a fork when he feels like it), and a whole host of other things. Just like he will do with talking, reading, writing, riding a bike, and whatever else he sets out to accomplish.

It will happen.

When he’s ready.

Words Matter

suffer (verb – used with object): to undergo, be subjected to, or endure (pain, distress, injury, loss, or anything unpleasant)

Dictionary.com

This afternoon I was somewhat paying attention to the Philadelphia Eagles v Green Bay Packers game that was playing on the TV while I was in the kitchen. When the sportscasters began talking about the different cleats players were wearing to raise money and awareness for different causes, I paid a little closer attention. When the reporter for the game focused on the cleats worn by Alex Singleton of the Eagles, I thought it was pretty cool that they were for the Special Olympics. The reporter went on to explain why he chose to support that organization:

Because his older sister “suffers from Down syndrome.”

The advocate alarms instantly went off in my brain.

I immediately went to work looking up who was announcing that game, and I learned the reporter’s name.

Next, I Googled the reporter’s name and found the links for her social media accounts.

I’ll be honest in that as I was doing my research, my first impulse was to blast her on her social media accounts and mine. I was even going to sign up on Twitter for the occasion.

However, by the time Google had given me the information I was looking for, I had calmed down (a little) and had decided that I wouldn’t blast her on her social media accounts. Instead, I would just send her a message on Facebook and hope that she saw it and took it to heart.

Hi Ms. Wolfson,

I was watching the Green Bay v Philadelphia game, and I heard you commenting on Alex Singleton wearing Special Olympic cleats today in honor of his sister, Ashley. You said that she “suffers from Down syndrome”. As a parent of a child with Down syndrome, I am going to encourage you to refrain from using that phrase ever again. My guess is that Ashley, like my son Moses, does not suffer at all from having an extra chromosome. She is a person with Down syndrome, living with Down syndrome, and from the sounds of it, thriving with Down syndrome. There is no suffering about it. My guess is that you meant no harm or offense by your choice of words, but please take into consideration that your choice of words impacts how others may view Down syndrome. Seeing as how 67% of parents choose to abort a baby upon learning it has Down syndrome, we have to work intentionally to highlight the beauty and value people with Down syndrome bring to our society. 💙💛

Respectfully yours,

Jenny Moyers

I also sent her a picture of Moses and me from a recent trip to the zoo in which we were both smiling and clearly not suffering.

Riding the train at the St. Louis Zoo

There is no pain, distress, injury, loss, or anything unpleasant being endured here simply because Moses has an extra chromosome.

The only time I would say any of us have come close to suffering as a result of Moses having Down syndrome was when we feared we were going to lose him as a baby to RSV.

I don’t expect to get a reply from Ms. Wolfson. I don’t expect her to publicly acknowledge her error in speaking about a person with Down syndrome.

What I do hope is that she never says it again.

I hope she understands how much words matter.

In some cases, they can literally mean the difference between life and death.

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.

Living with Healthy Fear

When Moses was 3-months-old and on a ventilator because of complications from RSV, a common cold to most people, I remember one of the nurses in the PICU telling me, “We have a healthy fear of RSV.” He said that even though they knew how RSV progresses and what it can do to a person’s body, they also know that they have to be diligent while taking care of a patient in Moses’ situation because things can go from bad to really bad very quickly. Case in point: The first time Tyson and I went to the cafeteria together to get lunch, leaving Moses alone in his hospital room for the first time since being admitted, the alarms in his room went off to signal that the thick mucus was clogging up the ventilator tube. When we got back upstairs, the nurse explained that they had to suction his tube out pretty forcefully so that the oxygen could flow through the tube. This happened a couple more times while Moses was on the ventilator. Hence the need for that healthy fear.

When we started to learn of the coronavirus and how it affects the respiratory system, Tyson and I immediately started thinking about how to keep Moses safe. Yes, for the most part, COVID-19 does not affect children as severely as older people. However, from recent reports, it can and has seriously affected children. Because of Moses’ history of having respiratory complications from RSV, he is considered to be ‘high risk’ for COVID-19.

So while we have been practicing social distancing for the past two weeks, I have felt fairly confident that we’re keeping him safe. Of course, there is a part of me that understands that I am not in control of the spread of this virus. None of us are. Despite our best efforts, he could still get it. Because of his age, he could get over it with little to no complications. I’ve read accounts from parents that their children with Down syndrome have gotten COVID-19 and recovered fully from it.

He could develop severe respiratory complications. He could require a ventilator again to save his life again.

And because he has Down syndrome he could be denied that life-saving intervention.

Two states – Washington and Alabama – have already released medical guidelines that more or less outline who gets priority when it comes to being put on a ventilator. Individuals with intellectual disabilities are included in the group that is not given high priority.

To some in the medical field, Moses’ life is viewed as less valuable than a three-year-old with typical intellectual abilities.

I am not okay with that.

I’m not saying that Moses’ life is more valuable than any other three-year-old’s. I am saying that his life is just as valuable as any other person’s on this planet.

In three short years, Moses has impacted so many lives in ways that I may never even know about. But I do know how much awareness and understanding he has brought to our family and friends about Down syndrome and respecting the dignity of his existence. I know how much happiness and laughter he spreads with his wicked sense of humor and his amazing hugs. I know that he has taught me to slow down and remember to find the joy in life’s simple moments and to not let society dictate what is important in my life.

But because he naturally has a shorter life expectancy (60 years) and is prone to have more medical issues, he’s low priority. That means that if the resources were available, he would likely be denied access to them. Because somehow those experts in the medical field are also experts in predicting the impact of a person’s life based on a diagnosis of, oh, let’s say Down syndrome.

I am not okay with it being decided beforehand that people with Down syndrome or any other type of physical or intellectual disability could be denied life-saving measures in the event they develop respiratory complications from COVID-19. I understand that hard decisions have to be made in these uncertain times. However, I don’t believe that when it comes to medical care, especially involving life-saving measures, those decisions should be made without input from the patient or the patient’s family. As his parents, Tyson and I have the right to be part of the decision of whether or not to put him on a ventilator if that resource was available.

When the Declaration of Independence was written, it included this little piece:

“…that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”

Declaration of Independence: A Translation. National Archives.

Notice that it doesn’t say “except for…”

Also, the Americans with Disabilities Act states:

“The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act require that health care providers provide individuals with disabilities full and equal access to their health care services and facilities.  Title II of the ADA applies to public hospitals, clinics and health care services operated by state and local governments and Title III of the ADA applies to privately-owned and operated hospitals, clinics and health care providers.

Accessible Health Care. ADA National Network

It saddens and angers me that when I pray for Moses during this time, I not only pray that he stays healthy, but I also have to pray that if he does get this virus, that he will receive the necessary care and resources to restore him to health. That the doctors and nurses at the hospital will see the value in his life without me having to fight to convince them of that. That the principles and laws of our nation will be upheld.

Are my son’s medical rights protected?

Theoretically, yes.

In reality? Let’s just say I have a healthy fear of those people who are making decisions about who gets priority when it comes to saving lives.

Falling Through the Ice

I’ve been trying to figure out how to describe what the last two days have felt like. As I was putting things away, it finally came to me.

For me, going through life is like walking on a frozen lake. There are times when the ice is thick and solid, and I can walk with confidence. Then that step comes and you hear the crack. Sometimes it’s so soft it’s barely noticeable and it creates the smallest of lines. Other times it is thunderously loud and the break in the ice comes quickly and forcefully.

Over the years, there have been times that the ice breaks enough that my foot goes through and into the icy water. There have been times where I’m able to step over the crack and find my way back to solid ice with reasonable ease. Sometimes, the crack is so small I forget about it with the next step.

Yesterday felt like the ice under my feet simply disappeared and I was plunged into the freezing water.

Dr. Brené Brown, a research professor at the University of Houston, has an amazing video in which she illustrates the difference between empathy and sympathy. (If you haven’t seen it, you can watch it here.) In it, she describes how many times people who are showing sympathy draw a nice silver line around another person’s problem or emotion. I think people try to put the silver lining around a person’s problems and emotions for a variety of reasons: they want to “fix” it; they are uncomfortable with the strong emotion of the other person; they don’t understand the intensity of the level of the feeling for the person; or maybe for them, the same situation wouldn’t result in the same feelings or response and so they don’t understand why it’s happening for this other person.

I think that some people accept silver linings because it’s easier than to stay with the current feeling. Or maybe the person having the strong, hard feeling can tell that the other person is uncomfortable with how she’s feeling and wants to help that person feel better. Or maybe it’s because he’s just not ready to deal with the situation or feeling. And sometimes the silver lining puts things in a different perspective for the person and she is ready and able to move on.

I can be a master silver-liner. In most situations, I can find the bright side and do my best to convince the other person to see the pretty silver light. In fact, I do it to myself all the time.

Worn out after a hard day at work? At least I have a job.

Frustrated at the sight of a dirty house that was literally clean five minutes ago? At least I have a house.

Another medical bill in the mail? At least you are able to access healthcare.

Tired of listening to Josie get anxious when she doesn’t have her note saying that I’m going to pick her up at the same time as I always do? At least she is using her words to express her feelings.

Annoyed at the extra time it takes to put Moses’ socks, braces, and shoes on? At least he can walk.

For any hard situation I may be going through, there is always someone who seems to be going through something harder. But does that mean that my situation magically ceases to be hard? Does it become less important?

Many times, it seems that the answer is “yes”. Get over yourself and your “hardship” and be grateful for what you have. Or at least leave it at the door when you leave your home.

Like in Dr. Brown’s video, I feel like the ice I was standing on – ice that I thought was solid – wasn’t so solid after all. As I kept marching forward on my path, my foot hit a weak spot and I fell through. When I hit the water, many of those hard situations and feelings that I thought I had perfectly silver lined were there waiting for me. I’m pretty sure they are what weakened the ice below me in the first place.

I have been silver lining things in my relationships.

I have been silver lining things in my family.

I have been silver lining things in my job.

I have been silver lining things about myself.

Instead of allowing myself to feel the sadness, disappointment, frustration, annoyance, irritation, hurt, etc., I’ve silver lined it, pushed it down, and went on my way. Sometimes the silver lining works, sometimes it doesn’t. When it doesn’t, that feeling lies dormant until the ice cracks and allows it to come to the surface once more.

I took another mental health day today. I felt better than I did yesterday, but I knew that I wasn’t on solid ice just yet. As I was cleaning off my dresser this afternoon, I finally pulled out a bag that has been hiding underneath it for a little over three years.

It’s a bag that I received from the Down Syndrome Association of Greater St. Louis shortly after Moses was born. In it were resources that gave information about Down syndrome, tips for raising a child with Down syndrome, brochures for agencies that provide assistance for kids with Down syndrome, and a couple of books about having a child with Down syndrome.

As I went through the contents, I broke down. Much like I did when I looked at Moses’ first goal report for his IEP.

For three years, I’ve worked really hard at drawing that silver line around the challenges that come with a child with Down syndrome.

He has Down syndrome? At least he’s healthy.

He spent 6 days on a ventilator because of RSV? At least it wasn’t 7 days of watching a machine keep him alive.

He has an ASD in his heart? At least it was able to be repaired by a cardiac catheterization instead of open heart surgery.

He can only recognize and match 10 pictures? At least it’s more than none.

I am fully aware that Moses is doing more physically and cognitively than a lot of other three-year-old kids with Down syndrome. But it’s still hard to see his limitations, especially when it’s in black and white.

As I read through his goals, I was disappointed. I tried to silver line my disappointment with At least he’s making progress.

This place where I’m at is nobody’s fault and it’s not because of one certain thing. It’s a culmination of silver lining my feelings and situations, not taking care of myself consistently, and trying to keep up my facade of strength.

I don’t think that humans were designed to be dismissive of their situations or feelings. I don’t think that humans were designed to be physically or mentally strong all of the time. I think that we were designed to experience life, feel the feelings, rest when we feel weak, and hold others up when we feel strong. And when we find ourselves in that icy water, we can be at peace knowing that God doesn’t want us to stay there and He will help us find our way back to the solid ice.