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.

Change in Plans

A month ago today, March 17, was supposed to be the first day of a voluntary three week leave of absence from my work. After finally recognizing I was in the throes of burnout in various areas of my life, I made the decision to take the time to rest and restore myself to a place mentally, emotionally, and physically so that I could find a way back to being the person I wanted to be.

Burnout is one of the things that we are taught to watch out for when entering into the field of school counseling. This is one of the best descriptions I have found for burnout:

Burnout is a state of emotional, physical, and mental exhaustion caused by excessive and prolonged stress. It occurs when you feel overwhelmed, emotionally drained, and unable to meet constant demands. As the stress continues, you begin to lose the interest and motivation that led you to take on a certain role in the first place.

Burnout reduces productivity and saps your energy, leaving you feeling increasingly helpless, hopeless, cynical, and resentful. Eventually, you may feel like you have nothing more to give.

HelpGuide, 2019

I found an online burnout self-test, and when I took it over a month ago, my score was 59 out of 75. Based on that score, I was at “severe risk of burnout” and encouraged to do something about it “urgently”. The next level would have been “very severe risk” as opposed to “severe”. I also filled out a compassion fatigue questionnaire and scored at-risk on it, too.

There was a time in my life where I would have looked at my scores and thought, “Oh, you’re okay. You only scored 59. If you were really burned out, you’d score 75. Maybe you’re not working hard enough.” Like many others, I had been conditioned to wear stress like a badge of honor. That if I wasn’t filling every second of my day with something productive, then I was lazy. That while I might be going through a hard time, others were going through even harder times so I should suck it up and quit whining.

Thankfully, in my 39-year-old wisdom, I was able to recognize that I had to stop going down the path I was on. Actually, I don’t know if it was wisdom so much as exhaustion – mental, emotional, and physical exhaustion. Either way, I was able to recognize that I was not okay and that I needed a break. A break that would allow me the time to figure out what was going on, how to handle it, and work on creating new habits for both my personal and professional life.

So I made a plan.

As I have often found throughout my 39 years on this Earth, when I plan, God laughs.

Actually, I don’t think He laughs. I think He shakes His head and says, “That’s not quite what I had in mind.” And then the whole “Thy will be done” thing comes into play.

Here’s how it happened:

  • February 26: I hit bottom. That’s the morning I woke up and thought to myself, “I can’t do this today.” I ended up taking two days off work.
  • March 4: I spoke to my husband and then principals about taking some time off of work. A three week leave of absence was scheduled to begin on Tuesday, March 17 and I would return to work on Monday, April 6. During my time off, I was going to go to church, get a physical, see my counselor, go to the dentist, read, write, exercise, get good sleep, clean, get a skin cancer check. I couldn’t wait.
  • March 5 – 13: I got my last rounds of classroom lessons in for my students and teachers. Some small groups were met with one last time and arrangements were made for other small groups to continue in my absence. Practice MAP tests were ready to go for 3rd & 4th grades. I met with some of the students I saw on a regular basis to make sure they were well-equipped for my hiatus.
  • March 15: While at my parents for an early St. Patrick’s Day dinner, rapid updates were coming in about steps being taken, including school closures, to combat the spread of the coronavirus in Missouri. The reality that I wasn’t going to get the leave of absence I desperately needed and wanted began to hit me and panic began to set in. As I drove my family home that evening, I felt defeated. I drove home in silence. When I went to bed that night, I cried. I’m talking about full-body sobs. The hope I had been carrying that I was actually going to get better was gone.
  • March 16: My school district announced that schools would be closed beginning Tuesday, March 17 through Friday, April 3. Classes were to resume on Monday, April 3.
  • March 17: I spent the day at home. With my children.
  • March 19: My day was spent at school preparing for distance learning.
  • March 20: I spent the morning running errands, stocking up on food and supplies, and beginning to experience real anxiety about the reality of how the coronavirus could affect my family, especially Moses.
  • March 27: My school district announced the school closure was extended through April 15.
  • April 9: Governor Parson announced that public schools will remain closed through the end of the school year.
  • April 17: We’ve settled into somewhat of a routine here at home. We are muddling through homeschooling two preschoolers at best. The children are living their best lives. We may not be able to convince them to go back to school, whenever that may be.

During this month, I have been able to take time for myself to rest and find some peace mentally, emotionally, and physically. I took the online burnout self-test again today and my score is now 46, which indicates I’m still at risk of burnout and that I still have work to do. But it also shows that I’m on the right track.

This last month definitely hasn’t gone the way I envisioned on so many different levels. Again, my plans and God’s plans don’t often seem to mirror each other. Thankfully, I learned to let go of my plans and trust in His a long time ago. Even though I still don’t understand why this has worked out the way it has, I trust that one day I will understand and maybe even be grateful.

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.

Giving Up and Giving In: Taking Care of My Mental Health

When my alarm first went off this morning, my first thought was, “I can’t do this today.” Then I hit the snooze button.

When it went off the second time, I thought to myself, “I can’t do this today. But I have to because I have groups to meet with, students wanting to talk with me, classes to teach, teachers to meet with. I have too much to do, too many people counting on me, so I have to do it.” And then I hit snooze again.

The third time my alarm went off, my thought was, “I can’t do this today. I don’t have it in me to give to others the way they need me today. I’m not okay. But I have to.”

If I were a superwoman, this is where I would tell you about how I got up, showered, put my big girl panties on, and mustered up the strength and energy to face the day.

But I’m not superwoman.

I’m just a human.

The truth is, I hit snooze. Again. And when my alarm went off for the fourth time, I gave up and gave in to the understanding that I wasn’t well enough to go to work today.

At that point I got up and met my husband in the kitchen as he was about to come check on me and tell me how late it was getting. When he saw me, he asked if I was okay, and I told him, “I think I need to take a mental health day.” Then he listened as I stumbled through my thoughts and held me while I cried.

I sent my principals a text saying “So I’m going to take a mental health day today. I can’t really explain it, but I just know that I need to take it.” Thankfully, the only question that was asked was if there was anything they could do to help.

I know that there are some people who don’t understand the concept of taking a mental health day. They are probably the same people who don’t quite understand mental health. They might even be some of the same people who don’t understand taking a physical health day (aka “sick day”). They may believe that unless you’re in the hospital, you should go to work.

We encourage people who are running a fever/throwing up/sending germs into the air with every cough/spreading germs by touching all the things after blowing their green-snotty nose to stay home to get well and keep others from being affected. We understand that when a person pushes himself too much physically when he is sick, it can turn into an illness that is even more serious. That makes sense, right? We understand that, right?

The thing is about understanding when someone is experiencing poor mental health, you don’t have to have experienced it yourself. Just like someone who is physically sick – it’s not about you and how you feel. It’s about understanding that she isn’t well and needs to take steps to get better.

Maybe you’ve never experienced depression, anxiety, posttraumatic stress disorder (PTSD), or compassion fatigue. But it doesn’t mean they aren’t real experiences for others. Perhaps you know what it feels like to be extremely sad, extremely worried, or mentally exhausted after going through a difficult time for you or your family.

For example, I’ve personally never had the flu, but I don’t need to have had the flu to understand that a) it’s real, and b) the person who does have it needs time to rest, recover, and feel strong again. I’m certainly not going to tell a person who has the flu to suck it up, maybe take a nap, and just try to be positive. I wouldn’t do that because I have been sick before and know what it’s like to need to take the time to rest, let my body recover, and regain my physical strength.

Likewise, you don’t need to have experienced a certain state of mental unwellness to be able to understand a) it’s real, and b) the person needs time to rest, recover, and feel (mentally) strong again.

It’s called having empathy.

It’s called having compassion.

Instead of questioning or making judgments about a person who is in poor mental health, just understand that she is not okay. Ask what you can do to help. Send her a message or Bible verse that might bring some peace. Understand that he may just need some time to regain a state of mental strength wellness.

Was it easy to take a mental health day today? No, it wasn’t.

As I sit here typing there’s a part of me that feels guilty that I’m missing work and inconveniencing people even though I’m not running a fever, puking my guts up, hacking up a lung, or blowing my nose a thousand times an hour. Part of me is uncomfortable thinking about people who may not understand or judge me because of this.

But I also know that because I took today to rest, cry, pray, and just let God hold me, tomorrow will be better.

I will be better.

Take care of yourself.