Stop Comparing, Start Working

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

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

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

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

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

(1 Corinthians 10:13)

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

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

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

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

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

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

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

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

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

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

I’ve learned to ask for help from others.

I’ve learned to say, “No.”

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

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

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

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

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

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

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

Morals, Not Politics

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

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

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

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

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

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

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

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

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

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

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

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

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

Three Hundred Eighteen Days

Almost a year ago, three hundred eighteen days to be exact, I shared about reaching my breaking point. Physically, mentally, and emotionally I was exhausted. I was burned out from investing too much time and energy into people and things outside of myself and not consistently investing enough quality time and energy in myself.

I didn’t get to that place overnight, and I knew that getting back to a place of health – physically, mentally, and emotionally – would take time. Sure, I could have gone to my doctor and asked for an increase in my antidepressant medication, and I’m sure that would’ve “helped”. However, deep down I knew that what I was experiencing wasn’t depression (although it was definitely part of it), and putting the band-aid of more medication wasn’t going to get down to the root of the issues I was experiencing.

There was no magic formula I followed to improve my overall health. I didn’t follow a particular program or introduce anything radically new into my life (other than planning to take a leave of absence from work which got the Covid-wrench thrown into it). Instead I found that what I needed was already in my life…I just needed to utilize my time, energy, and resources differently.

First off, I prayed. A lot. I’m not just talking saying a few extra Our Fathers. There were a lot of big conversations between God and me happening. Some of them were a lot of me asking “Why?” about a multitude of different things; others were of the begging nature in which I pleaded with him to just make it all go away and show me the fast, easy road back to “normal”; then there were the ones in which I surrendered to Him and just asked Him to hold me because I couldn’t hold myself up any longer. 

The weekend before I was supposed to begin my leave of absence, I was invited by a couple of friends to join them in a 40-day yoga and personal growth challenge. Through that, I did find that doing yoga daily helped me improve my physical health. I don’t know if you’ve ever done yoga, but some of those poses are hard. And then you have to hold them for forever. Even though I wanted to give up pretty much every day in the beginning, I stuck with it and found myself getting stronger and not hating all the hard poses so much. I also found that my mental health was improving from both the nature of yoga and being focused as well as being pretty proud of my progress.

Sleep became a priority. I found a sleep app that tracked not only how long I slept but also how much light and restful sleep I got. I have learned that: a) I feel best when I get 7 hours of restful sleep; b) too much alcohol before I went to bed decreases my restful sleep; c) exercise typically increases my amount of restful sleep; d) not enough sleep usually mean I’m not going to be as peppy and patient throughout the next day; e) the less sleep I get directly affects my eating habits the next day (and not in a healthy way). Overall, I learned that sleep is essential to my overall health.

I started watching The Office. As a school counselor, I have learned about the science behind how laughter affects the brain and can improve your mood and mental health, which is why I knew that if I was going to watch something, it had to be my kind of funny. Michael, Dwight, Jim, Pam, Stanley, and the rest of the crew at Dunder Mifflin are my kind of funny!

With the help of my husband and my counselor, I began to reconcile with things from my past that were still affecting me even though I thought I had put those people and things behind me. I learned the true meaning of forgiving and letting go of the pain of the past. I learned how to finally forgive myself for the hardships and the mental and emotional pain I had inflicted upon myself and endured from others.

I rediscovered the importance of not comparing myself to others. Although I am nowhere near the perfectionist I once was, I still fell into the trap of comparing myself to other women in various ways – physically, spiritually, intellectually, professionally, etc. I stopped following people and groups on social media that served to be a source of unhealthy comparison rather than positive inspiration.

I experienced the beautiful power of relationships. Throughout my life, I have had the opportunity to meet and know some truly amazing people, and firmly believe in the idea that people have come into my life for “a reason, a season, or a lifetime”. I have been especially thankful for the people in my life who have supported me and cheered me on during this turbulent season of life. These people have helped me to remember who I am and who I wanted to get back to being. For their love, support, and encouragement, I am forever grateful.

Finally, and most importantly, I was patient with myself. As fantastic as it would’ve been if I had woken up after the end of the first week or even the first month, thrown off the covers, and announced, “I’m baaaack! All better!”, that didn’t happen. Sometimes it seemed like I was moving backwards and sometimes I felt like I wasn’t moving at all towards feeling better. Then there were the “A-HA!” moments and days that I could feel myself moving forward that helped me to know I was on the right track. There were the glimpses of the “me” that I had been missing that motivated me to keep working.

Three hundred eighteen days and counting. (Because I’m working every day to maintain my progress…I haven’t put in all this work to go back to where I was!)

Why have I worked so hard to gain control over my overall health for the last three-hundred eighteen days?

Simple. (Kind of.)

I did it for me.

Because I deserve it. I deserve to feel good physically, mentally, and emotionally. Because God didn’t create me to lead a life of sadness, hopelessness, frustration, and gloom. Taking care of myself – mind, body, and soul – has helped me to love who I am again. It’s helped me to be a much better wife, mother, daughter, sister, friend, and advocate. Taking care of myself benefits everyone in my life. 

I know that I’m not alone in feeling lost, alone, unhappy, burned out, etc. My hope for anyone reading this thinking, “Where do I start?” Start where you’re at. Make today your Day 1. Your journey will most likely look very different from mine, but you’ll never know what yours looks like until you start. Once you start, take it day-by-day, hour-by-hour, minute-by-minute. You’re worth every second.     

For Those In Education

I have a favor to ask.

It’s no secret that our healthcare workers are overwhelmed and exhausted – physically, mentally, and emotionally. They need our support and prayers now more than ever.

I want to ask that you remember to also support and pray for those in education right now.

There are so many people in education that are also being tested day in and day out during this time.

Teachers

Administrators

Administrative assistants

Counselors

Social workers

Custodians

Cafeteria staff

Athletic directors

Therapists

Literacy aides

Paraprofessionals

Classroom aides

Coaches

There are so many people who are on the front lines in education that are working tirelessly to continue to provide not just an education but also a safe place for students and staff to go to every day. These men and women are being asked to put the welfare of others before their own.

It’s not easy, but they’re doing it.

Just like those in healthcare, these people need support and prayers now more than ever, too. And just like those in healthcare, they’re also often the least likely to ask for help.

It doesn’t have to be much. Just something to let them know that you know they’re in the trenches, that you’re thinking of them and supporting them.

Send an encouraging message. Or a funny one. A smile can literally change the way your brain feels, and laughter is good for the soul.

Drop off a snack or meal that they don’t have to prepare. Or booze.

Send a card. Homemade ones are best.

If anything else, pray for them. Pray for them to have the health and strength to continue showing up and serving the students they love.

Early Education in Down Syndrome

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

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

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

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

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

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

“Is it similar to autism?”

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

“Is it rare?”

“Can it be cured?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Be kind. 

Show respect. 

Choose love.

A Letter to Mrs. Cordelia

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

Dear Mrs. Cordelia,

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

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

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

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

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

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

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

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

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

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

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

Love, 

Jenny (a.k.a. Moses’ mom)

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

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.

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.