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.

Where I’m Supposed to Be

I’m where I’m supposed to be.

This is the mantra that has gotten me through this week as I’ve found myself struggling to make sense of life these days. 

This isn’t new territory, either. A couple of months ago, I was going through some old things and I came across a letter I had written to God. I can remember writing it like it was last week instead of 12 years ago. At that time, I was definitely not where I wanted to be. To be honest, I felt like I was on the road to nowhere and I was lost even trying to find my way there. Not exactly what I had pictured my life looking like at 27. 

In the letter, I poured my heart out to God. All the thoughts and feelings of anger and frustration, sadness and loneliness, confusion and fear. I asked Him to help me know what to do to help myself. 

Here I am 12 years later in a much different season of my life yet feeling those same emotions and a little lost again. And this time it’s not just myself I have to worry about. The stakes are definitely much higher now, and my sense of urgency to know what to do to help myself and my family is much more intense.

Where am I? 

I’m at home.

I’m serving my family. I’m cooking meals, washing dishes, doing laundry, and cleaning up messes. I’m cheering for my daughter as she learns to make a lowercase ‘a’ and for my son as he correctly identifies objects when given two choices. I’m rocking outdoor recess duty. I’m snuggling with Josie when she crawls into bed with me each morning and rocking Moses at naptime because he wants me to. I’m taking deep breaths so I don’t completely lose my temper and reminding myself to keep small problems small. I’m asking for hugs and forgiveness when I fail to do both. I’m excited to see my husband when he gets home so I get to talk to an adult and hear about the outside world. 

When I was at work, I would often announce “I’m going to go change lives!” Now I feel like the only thing I’m changing is diapers. 

Believe you me when I say that I NEVER saw myself as a housewife and definitely not as a stay-at-home mom. I’m not saying there’s anything wrong with either of those by any means. It’s hard work and the pay is horrible. I’m one “official” week in and I’m ready to turn in my two-week notice. 

But I’m supposed to be here. Even when I don’t want to wash another dish, it feels right. I don’t have the luxury of knowing why I’m doing exactly what I never wanted to do, but I do have the luxury of trusting that God knows why I’m here and will help me to understand when I’m supposed to. 

Over the last 12 years I have learned that life isn’t about getting where you want to be and staying there. It’s about continuing to live and experience and learn and grow, and that still includes going through some growing pains at times.

I’m where I’m supposed to be

And who knows? This may end up being the best place I’ve been to yet.

The Next Right Thing

A couple of years ago, my church was offering a book to the parishioners called Perfectly Yourself by Matthew Kelly. As a person who spent the first half of her life striving to be perfect in various ways, there was no way I could pass up this book. 

As I began reading, I appreciated how the author described our quest here on Earth as to become the best version of ourselves. And how that might look different from day-to-day. It was as if I was being given permission to be less than perfect. To be human. And for that to be okay as long as I did my best every day to be the best version of myself. 

One of the guiding principles to achieving that goal was to always look to do the next right thing. That sounded simple enough, and it proved very helpful in guiding my decisions at home and at work. Looking back, the season of life I was in was relatively calm (as calm as life can be with two toddlers) and I wasn’t faced with many difficult situations and the concept made its way to the back of my mind. 

I never finished the book even though it stayed right there on the table by my bed. Then a few months ago, I decided to revisit it. 

This time I took my time reading through it and underlining parts that stuck out to me. Today I looked back and found two passages that I had underlined: 

“We seem to spend endless hours planning and worrying about some distant future that is promised to none of us, and yet effortlessly overlook the fact that how we deal with the here and now will determine what the future looks like.” (p. 48)

Little did I know that just a few short months later, I was going to find myself in this exact situation. Where not only was I constantly looking ahead and trying to prevent my worst nightmare from happening, I was focused more on what I could not control (i.e. other people) than on what I could (i.e. myself). The result was that I was mentally and emotionally drained. I felt lonely and frustrated and defeated at almost every turn. And then I came to the point where I couldn’t go on like that. It wasn’t healthy for me, and it wasn’t healthy for my family which I was desperate to protect. 

Which brings me to another passage I had underlined:

“The truth is that we almost always do [know what the next right thing is]. More than 99 percent of the time, you will know what the next right thing for you to do is if you quiet yourself for a moment and go to that place deep within you.” (p. 49) 

In my efforts to try to control the situation and appeal to others to see and do things the way I needed them to, I found myself in the midst of so much noise that I couldn’t hear that place deep within myself that was pointing me towards what was truly the next right thing. To me, giving up fighting for others to protect me so I could protect my family was akin to failing my family. Failing my son. Even though I was exhausted, I faced each day ready to continue my fight. My motto became “I trust God but I don’t trust people”. I spent my time and energy finding people who understood and supported me and growing more and more resentful of those who didn’t. 

Until I stopped. 

Last Saturday morning, I told my husband that I needed ten minutes of quiet before he left for a few hours. I went outside and sat on the steps and asked God to help me to know what to do. What the next right thing was. Because what I thought was the right thing for me to do wasn’t working. 

I wish I could say that the clouds parted and I heard a voice from above telling me exactly what I needed to do. How cool would that have been? In reality, after my ten minutes were up, I muddled my way through the rest of the morning most of the afternoon. 

It wasn’t until later that afternoon when I was taking some more time to sit in the quiet after talking to Tyson that I was able to start getting an idea of what the next right thing was for me to do. Somewhere in that quiet, I was finally able to hear the answer. Somewhere in the quiet, my heart and mind were open to the possibility that the next right thing for me was not at all what I had in mind. 

At this point I wish I could say that all felt right with the world and it was smooth sailing from there. Unfortunately, knowing and doing the next right thing isn’t always easy. Even though I did feel a calming sense of peace knowing that I was going to be heading in the right direction, there was still a certain level of anxiety that things were not going to work out the way I wanted and the consequences of that. Especially knowing that other people other than myself and my family would be impacted. 

Now that decisions have been made and action has been taken, there is a part of my heart that is hurting and disappointed while a part of it is relieved and contented. But in the end, doing the next right thing has put me where I’m supposed to be. It is not what I had envisioned or hoped for, and what lies ahead is still unknown. However, I can already see signs of how God has prepared me and my family for this exact season of life I now find myself in. And it’s all because I had the courage to be quiet, listen to Him, and do the next right thing.

My hope for you is that when you’re faced with a choice, you will choose the next right thing for you. Sometimes it’s easy to know what that is, and sometimes is incredibly difficult. In those times, I hope you will be able to find some time and space to be quiet (even if it’s just ten minutes) so you can listen deep down for the answer that will guide you in the right direction.

Source: Kelly, M. (2017). Perfectly yourself: Discovering God’s dream for you. North Palm Beach, FL: Beacon Publishing.

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.

Racism: A Pro-Life View

One of my favorite books is A Time to Kill by John Grisham. I’ve been thinking about it a lot lately.

If you’ve never read the book (or seen the movie), it’s about the trial of a black man who killed the two white men that raped his 10-year-old daughter.

The specific part of the movie that keeps coming to mind is the closing statement by the defense lawyer. He asks the jury to close their eyes as he tells the horrifying story of what happened to his client’s daughter. He asks them to picture the little girl. To see her.

And then to imagine that she was white.

I think about the stories of Ahmaud Arbery and George Floyd.

Would Ahmaud’s murder been recorded and deemed acceptable under the state’s citizens arrest and self-defense statutes if he had been white and the other three men had been black?

Would George Floyd have been confronted while sitting on his car, placed under arrest, and then have the officer kneel on his neck to the point of death because he was “resisting arrest”, or perhaps more accurately “struggling to stay alive”, if he had been white?

In my mind, answer to these questions isn’t even “Probably not.” I truly believe that if these two men had white skin, they would both still be alive today.

And that is not okay.


To be pro-life is to respect the dignity of all lives from natural conception to natural death. There is no inbetween. There is no exception made for any level of physical or cognitive ability, gender, race, ethnicity, etc.

All lives.

All people.

I can’t call myself pro-life and only limit that to the unborn and disabled. I can’t speak up for the worth and rights of my child and other people with Down syndrome or other disabilities but stay silent when it comes to the worth and rights of people of color.

Have I been granted access to certain advantages, opportunities, and privileges because of the color of my skin? Absolutely. Most of the time, I was very unaware of it, and I’m sure there are times that I still am.

I think that one of the things that people with white skin are being asked to do is to not necessarily deny themselves access to opportunities, but to acknowledge being white almost guarantees certain advantages, opportunities, and privileges from the start. It’s not to say that all people with white skin have access to the exact same advantages, opportunities, and privileges, but for the most part, people with white skin do have access to a certain level of those things.

And then to acknowledge that people of color are not.

To acknowledge that for people of color, it’s usually the exact opposite.

To be born with brown or black skin is to be almost automatically excluded from certain advantages, opportunities, and privileges.

That is not okay.

I have been involved in conversations about race and racism in which people who are white get very defensive. I’ve gotten defensive myself. BAs Tarana Burke, the founder of the “Me Too” movement, stated on Brene Brown’s podcast Unlocking Us,

I think that because we’re interconnected as people, as human beings, that when one group of human beings talk about the ways that…the world has failed them, the way that these systems of oppression have failed them…other groups of people feel like it’s an indictment of them or that they are somehow personally responsible for each individual life.

Brown, Brene. “Tarana Burke and Brene on Being Seen and Being Heard”. Unlocking Us. Podcast audio. March 23, 2020. https://brenebrown.com/podcast/brene-tarana-burke-on-empathy/

I think what people who are white have to remember in this conversation is that it’s not about us. It’s not about going back and confessing every time we experienced an advantage because of having white skin or every racial slur or comment we may have made. It’s not about going on the defensive and trying to present evidence that we’re not racist. It’s not about trying to disprove or downplay the experiences people of color have had.

It’s about using our empathy and compassion to understand that these are people who are experiencing unfairness, oppression, and injustice in ways and on levels that many of us cannot imagine.


So what will I do about this?

I will commit to taking steps to do better. To be better.

I will teach my children to see and appreciate the different colors of skin but to remember that it’s just skin. No matter what color, skin is not the person. Skin isn’t kind or unkind. Skin doesn’t love or hate. Skin doesn’t help or harm. Skin just holds all our bones, muscles, veins, etc. in. That’s it.

I will listen, truly listen, to the experiences that people have had because of the color of their skin. I may not be able to empathize based on experiences, but I’m sure I can empathize based on feelings. I know what it’s like to be hurt, scared, angry, confused, sad, so I can absolutely listen and do my best to understand based on that.

I will stop describing people by their skin color. There are tons of other characteristics that can be used to describe a person other than skin color.

I will use people-first language. I’ll be honest, ever since having Moses, I have become hyper-aware of using people-first language. Using people-first language does exactly what it says it does – it puts the person first. Moses is not his diagnosis. He is not defined by Down syndrome. He is not a “Down syndrome boy”. Down syndrome is a part of him, but it is not all of him. Similarly, a person is not a skin color. Skin color is a part of a person, but it is not all of a person. I will refer to a person as a “woman with brown skin” or a “man with black skin” if there is a reason to use skin color as a descriptor of that person.

I will be an upstander. I will speak up and stand up against racism and discrimination.

I will continue to learn and educate myself about more things that I can do to make this world a better place for everyone.

There is still so much inequality in this world based on race, gender, and ability, just to name a few. I may not be able to fix it all, but I can and I will stand by my pro-life beliefs and continue to work respect all people.

What can you do? What will you do?

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.

Finding Forgiveness

On March 17, what was supposed to be the first day of my leave of absence, I drove up to Ste. Genevieve to meet my sister to get a playhouse for the kids from her and to just spend some time with her. Usually when I’m driving by myself, I have the radio on, the volume turned up, and I sing as loudly and out-of-tune as I please. However, on this drive, I ended up listening to a Catholic radio station. I can’t remember what was on when I first started listening, but what came on next ended up being the starting point on my path of healing and recovery from the icy waters I kept finding myself falling into.

I can’t tell you if the person on the radio was a priest or a guest speaker or what, but whoever it was, he started talking about forgiveness. He spoke about what forgiveness is and what it’s not. About how important forgiveness is to our own mental, emotional, spiritual, and physical well-being. Honestly, most of what he said were things I had heard before. (Although, I did learn that there’s an International Forgiveness Institute and thought that it was pretty interesting.)

As I listened to the speaker go on about forgiveness, the names of different people who had hurt me somehow started popping into my head. As I would think of what I had gone through with each one, I found myself getting angry and feeling hurt all over again. This surprised me a bit because I thought I had forgiven those people and moved on. Clearly, that was not the case.

Coincidentally, just a few days earlier, Tyson had shown me a website he had found with prayers for healing that he thought may help me. I scrolled through the page and saw some prayers that seemed fitting to what I was experiencing, some that didn’t, and an emotional healing exercise at the end of the page. The exercise was all about forgiveness, letting go of people and/or experiences that had hurt you, and finding peace. Some of those same people had come to mind then, too.

Back to the person on the radio, as I listened to him talk about how giving and receiving forgiveness looks different for different people and different situations, I realized that for some people, I hadn’t fully forgiven them. I had said the words in my mind, but they hadn’t reached my heart. Thinking back to the emotional healing exercise, I knew that was something I needed to do for myself.

I wish I could say that when I got home that afternoon, I immediately got to work and felt better by that evening. In reality, it took me about a week to feel ready to do the exercise because the first thing you had to do was go back. Go back and feel the hurt, sadness, heartache, disappointment, anger, shame, and guilt that I thought I had let go of but had apparently just pushed down.

Here’s a basic rundown of how the exercise works:

  • You begin by writing a letter to the person telling him/her how angry you are at them for hurting you. You write all the ugly parts of what you experienced with that person and describe how you felt and tell him/her that you are angry at them for that. You tell them how it affected you then and now. You tell them what you wish had been different.
  • Next, you write a letter to yourself from that person apologizing for the way he/she treated you and acknowledging that you did not deserve to be treated like that. You write the words you need to hear from that person.
  • After that letter, you write a prayer. In your prayer, you release the person into the Lord’s hands. You pray for Jesus to wash away the negativity left by the relationship with that person.
  • Finally, you write a letter to yourself from God. You let him tell you what you need to hear from him.

After I finished going through the exercise the first time, I could not believe how amazing I felt. It’s hard to describe the lightness I felt in my mind and in my heart. Yes, it was hard to revisit the pain of the past, but it was also necessary to find this peace in the present. Each time I completed the exercise for a different person and experience, I felt so much relief in the end.

While none of the letters were easy to write, the one that was the hardest was to myself. Writing about the ways in which I had contributed to the hurt and pain I had gone through that was weighing me down so heavily was extremely difficult and even mortifying at times. But to be able to finally forgive myself for all that – especially the guilt and shame I felt for allowing others to hurt me and for hurting others – I had to do it. And I’m so glad I did.

Once again, God knew what I needed. Forgiveness, for myself or anyone else, was not a part of my plan to heal and restore my mental and emotional well-being. Thankfully, God knew that finding forgiveness was exactly where I needed to start.