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.

Letting Faith Be Bigger Than Fear

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

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

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

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

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

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

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

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

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

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

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

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

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

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

For three days.

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

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

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

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

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

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

Trust me, I’ve been praying.

Every day.

For the health and safety of my whole family.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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