A Letter to Mrs. Cordelia

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

Dear Mrs. Cordelia,

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

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

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

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

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

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

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

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

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

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

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

Love, 

Jenny (a.k.a. Moses’ mom)

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

Seeing Him

Over the last four years, I’ve heard or read about parents who say “I don’t even see my child’s Down syndrome anymore.” 

Me?

I’m still waiting.

I’ll be honest, in the last 3 years and 11 months, not a day has gone by that I don’t see something about Moses and think about him having Down syndrome. Sometimes it’s a facial expression. Sometimes it’s because I see him working to master a new skill or doing something I’ve never seen him do before. Sometimes it’s because of something totally random and I find myself thinking about Down syndrome and him.

There have been days that I’ve wondered, “What’s wrong with me?”. Why is it that these other parents can look at their child for an entire day and not once think about the fact that he or she has Down syndrome, yet somehow I can’t? 

Then last night it hit me that there’s absolutely nothing wrong with me. There is nothing wrong in me seeing my son for who he is. Seeing all of who he is. Including the extra chromosome that makes him so wonderfully and uniquely him. 

Yes, in so many ways, he really is like any other nearly 4-year-old kid. He makes messes, gets into his sister’s things, throws fits, says “Mom” on repeat throughout the day, and resists going to bed. 

I see that.

I also see his beautiful almond-shaped eyes that all but disappear when he laughs. I hear his muffled speech and celebrate when he says another word more clearly than he did yesterday. I see him work hard to open his yogurt by himself and cheer for himself when he succeeds. I see his smile that can get so big it takes up his entire face. 

Why wouldn’t I want to see those things? 

To say “I don’t see his Down syndrome.” is akin to saying, “I don’t see him.” 

As if having an extra chromosome is wrong. As if there is something wrong with him being fully and completely him. 

I’m no longer going to wonder when the day will come that I won’t see that he has Down syndrome. It’s a part of what makes him my Moses Alexander the Great, and he deserves to be seen.

Living with Healthy Fear

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

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

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

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

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

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

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

I am not okay with that.

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

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

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

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

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

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

Declaration of Independence: A Translation. National Archives.

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

Also, the Americans with Disabilities Act states:

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

Accessible Health Care. ADA National Network

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

Are my son’s medical rights protected?

Theoretically, yes.

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

Falling Through the Ice

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I have been silver lining things in my relationships.

I have been silver lining things in my family.

I have been silver lining things in my job.

I have been silver lining things about myself.

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

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

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

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

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

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

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

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

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

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

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

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

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

Changing the Lens of Down Syndrome

A while back, I wrote about a conversation I had with a woman wherein she told me that her daughter was not likely to have a baby of her own because of her age and the higher probability of the baby having Down syndrome. (You can read it here.)

This past summer, I ran into a woman that I had known growing up but hadn’t seen in years. She and I were catching up when she told me that her daughter had one child and was thinking about having another one. The woman said that she hoped her daughter would just be happy and thankful for the one she had because there had been a “genetic scare” and they got lucky the baby was born “normal”.

As with the other conversation, my mind was racing as I tried to listen respectfully while trying to figure out how I was going to enlighten this woman. My chance came when she asked if I had any kids of my own, and I told her that yes, I had two children, Josie and Moses. For some reason, I didn’t come out right then and tell her that Moses had Down syndrome. That didn’t come up until she asked about their ages and school.

I explained to her that we had decided to wait another year before sending Josie to kindergarten because of her late birthday and that Moses would be starting the early childhood program, too, when he turned three in October. That was when I told her that he had Down syndrome and would be going through the evaluation process to have an IEP developed to make sure he was getting what he needed at school.

To be honest, there was a part of me that got a teensy bit of satisfaction from seeing her reaction and scrolling back to her earlier comments to make sure she hadn’t said anything outright offensive. But what really brought me joy was getting to tell her about how amazing Moses is and what a beautiful relationship he has with his big sister. To get to tell her with 100% honesty that I wouldn’t change Moses having Down syndrome for anything because he has brought so much happiness and richer insight to our lives.

A couple of months ago, I was talking with another older-ish woman about a close friend of mine who won a state-level award the same week that she gave birth to her beautiful daughter who has Down syndrome. I watched as her the look on the woman’s face transformed from one of sadness to pure confusion when I went on to say that my reaction was, “How amazing is that?! She hit the lottery! She was named Missouri School Counselor of the Year AND her daughter was born AND she has Down syndrome!” I would say it’s safe to bet that she thought I was saying that to be nice. But I truly wasn’t. I was honestly so incredibly excited for my friend because of her good fortune on all accounts.

Even though it’s the year 2020 and we have amazingly advanced technology and an abundance of information at our fingertips, it is apparent to me that when it comes Down syndrome and other disabilities, it can sometimes seem like we’re still in the Dark Ages. Down syndrome is still viewed through a very negative lens. I know we’ve come along way from the viewpoint that Dr. Benjamin Spock held and published in his best-selling book Baby and Childcare where he recommended that babies born with Down syndrome should be immediately institutionalized because “If [the infant] merely exists at a level that is hardly human, it is much better for the other children and the parents to have him cared for elsewhere.” (Globaldownsyndrome.org) That suggestion was held as true until research was published in 1979 that showed that the IQ of children with Down syndrome that were raised at home both with and without specific attention to stimulation was higher than children with Down syndrome that were raised in an institution.

Nevertheless, we’re still facing a generation of mothers encouraging their daughters NOT to have a baby out of fear it will have Down syndrome. There are still doctors who recommend aborting a baby that has Down syndrome as if they have a crystal ball and somehow know the deficiencies and limitations the child might have will overshadow and negate the child’s strengths and abilities.

Anyone can be a part of helping others change their views and see the beauty and value in the life of a person with Down syndrome. Be excited for a woman who gives birth to a baby that has Down syndrome. Share in a family’s excitement when its child with Down syndrome reaches another milestone. See the beauty in the perseverance and strength of a person with Down syndrome working to overcome one of life’s challenges.

Let’s work together to change the view of Down syndrome from a lens of doom and gloom to one of celebration and possibilities.

Letting Go of the Guilt

The first time I felt it was after getting the results of the fetal echo at St. Louis Children’s Hospital about 2 1/2 months before Moses was born. Hearing that his heart looked perfect sent a huge rush of relief through my mind and body, but instead of walking out of the hospital feeling light as 7-month-pregnant feather, I felt the heavy weight of guilt. 

You see, as Tyson and I walked through Children’s and saw kids with various forms of illnesses and severe disabilities on the way to get the echocardiogram of our baby’s heart, I was prepared to join their club. Even though the ultrasounds up to that point indicated the baby with Down syndrome I was carrying was healthy, I was sure that the other shoe would finally drop and we would find out that we were in for a rough time in the form of an unhealthy heart. 

As happy as I truly was to know my baby’s heart looked healthy, I couldn’t help but to feel incredibly guilty that we were getting off easy. 

Over the past three years, I’ve had that “my son with Down syndrome is very healthy” guilt quite a bit. Yes, we’ve had health issues with him: the scary RSV at 3 months; a heart catheterization procedure at 1 year; two sets of ear tubes; slightly elevated TSH (thyroid) levels. But on days like today when the only “bad” news we get from the doctors is that his TSH level is still slightly elevated and that he’s slightly far- or near-sighted (I can’t remember which!) and has a slight astigmatism in his right eye that will be rechecked at his ophthalmology visit next year, I feel guilty. 

He is healthy. Period. 

While we were at Children’s today finding out that Moses is pretty much the picture of health, I once again saw children with various disabilities and illnesses. I met a couple who’s 1-year-old son with Down syndrome had heart surgery several months ago, coded about 8 hours post-surgery, and are now “back at square one” with his heart and he is still on a feeding tube. I saw another little girl with Down syndrome who was in a modified stroller that could hold her oxygen tubes. I watched as her mother did something to the tube that was connected to her trachea. I saw a couple of kids with Down syndrome with glasses. I saw another boy with Down syndrome who was wearing a mask so as not to either spread germs or contract them or both. 

That’s not even mentioning all the other kids without Down syndrome that had different disabilities and health conditions that I saw as we went from doctor to doctor. Then there’s the infants in the NICU, and the kids in the PICU. The children in the Heart Center and the ones that are there being treated for cancer and other illnesses.

Since we left the hospital today, I’ve once again been experiencing that heavy weight of guilt of having a healthy child where so many others are not. As silly as it might sound, I’ve been asking God “Why?”. 

“Why does my son get to be so healthy?”

“Why does my son get to be so strong?”

“Why does my son get to be so cute?” (Obviously the answer to that is genetics, right?)

And then I had to stop myself from asking “Why?”. I had to give myself permission to let go of the guilt and just be thankful. Feeling guilty isn’t going to do Moses, those other kids, or even myself any good. Instead I should be telling God “Thank you.” 

“Thank you for letting my son be so healthy.”

“Thank you for letting my son be so strong.”

“Thank you for letting my son look so much like me and be so doggone cute.” 

I don’t know what God’s plan is for Moses. I don’t know what God’s plan is for those other kids. I just have to remember to trust that He’s in control. 

Remember to trust that His plan is always right. 

Remember to tell Him “Thank you.” 

Extra Chromosome = Extra Awesome. It’s That Simple.

Josie was a fresh-faced little two-year-old when Moses was born. With her, my focus was more on helping her adjust to having a new baby invading her space than explaining that her new baby brother had Down syndrome. At that point in her young life, telling her that would’ve meant absolutely nothing to her anyway. Still, part of me wondered when the time would come to explain it to her.

While we didn’t explicitly tell her that he had Down syndrome, we didn’t hide it from her, either. When she asked why people were coming to see him, we explained that they were there to help him get stronger and learn how to do things. That explanation was good enough for her, and she quickly began to interject herself into his physical and speech therapy sessions. In fact, there are still times that I have to remind her that the therapists are coming to see Moses, not her.

My question of when I would have to explain what Down syndrome was and that Moses had it was answered this past spring. Josie had found a medal from the Step Up for Down Syndrome Walk we did in St. Louis the previous spring. She had been wearing it around the house for a while when she came to where I was sitting on the couch and asked me to read what it said. I told her it read “Step Up for Down Syndrome”. She looked at the medal again and said, “I don’t cheer for Down syndrome.”

“Oh, yes you do, sister.” was my immediate reply. Of course, her next question was promptly, “Why?”

Taking a deep breath, I said, “Because Moses has Down syndrome. We cheer for him all the time, right?” (As a matter of fact, we cheer for him so much that when he has even the smallest of accomplishments, he looks at whoever is around to make sure they’re properly cheering for him.)

Here came the hard part. Not because I thought that it would somehow change how she looked at him or felt about him, but because explaining the science and complexity of Down syndrome is hard. Explaining it to an adult who has at least heard of a chromosome is hard enough. Explaining it to a 4-year-old is downright difficult.

I did my best to break it down so she could maybe understand part of it. I told her how we all have chromosomes in our bodies and that most people have two of each chromosome in our cells, but Moses and others with Down syndrome have an extra chromosome that changes some of the things in their bodies and makes it harder for them to do somethings. Thankfully, I could tell that she was losing interest and that she was ready to go about her business, so that extremely over-simplified explanation was all she needed.

After that, Josie didn’t ask any more questions or say anything else about Down syndrome.

Until last week.

While I was getting Moses ready for bed one evening, Josie came in his room and asked, “Why doesn’t Moses talk yet?”

“Well,” I started, “It’s because he has Down syndrome and that makes it harder for him to learn how to talk.”

“Oh. Will you tell me about Down syndrome and those chromo-somes again?”

Impressed that she had apparently really been listening to me when I had tried to explain it the first time, I reminded her that most people get two of each chromosome but Moses got extra of one of them which makes it harder for him to do some things, like learn how to talk. This time I added, “But it’s also part of what makes him awesome.”

Without missing a beat, that smart-mouth came back with, “But you don’t have an extra one so you’re not awesome.”

I swear it was all I could do not to come back with, “Well, little girl, neither do you, so what’s that say about you, too?” Instead, I returned the playful smirk she was giving me and told her to go get ready for bed.

What I love most about telling Josie and other kids about Down syndrome and what it means for Moses is their reaction. It’s almost like a healthy indifference. Having that information doesn’t make or break anything in terms of how they feel about him. There’s no looks of pity towards him or me. They don’t say, “I’m sorry.” There’s no uncomfortable pause or change in conversation. There is simply acceptance.

For Josie, beginning to understand why some things are different about and for her little brother hasn’t changed a thing around here. She still loves him because he’s her Mo Mo. It’s that simple.

Normal First Impressions

A couple of weeks ago, I got the chance to meet a family that had just welcomed a beautiful baby with Down syndrome. While the mom and I had talked on the phone and had been texting for a few months, we had never actually met in person.

When Moses was a baby, I can remember almost desperately looking to other families with kids with Down syndrome for reassurance that everything really was going to be okay. Normal even. I was so excited that now it was my turn to make a great impression about having a child with Down syndrome and show her what an amazing, normal family we really are.

When we got to their house, Moses had decided to take off his shoes, braces, and socks on the drive over. While I was putting them back on, Josie had taken the baby’s gift and gone up to the front door. After I got Moses situated and out of the van, I got the coffees I had picked up on the way and started herding him towards the door where Josie was semi-patiently waiting. When Moses and I got to the steps on the sidewalk, I put the coffees down to get him down the steps a little quicker. Of course, he wasn’t having any of that since he can do it on his own, so I picked the coffees back up and semi-patiently waited for him to get down the first step.

By this point, Josie can hardly stand that she hasn’t gotten to meet the new baby yet, so I told her she could go ahead and knock on the door. Moses was making his way towards the second step, but his progress was slowed by the leaves and sticks that needed to be examined on his path. When the door to the house opened, a sweet yellow lab came barreling out, right past the child that loves animals and straight to the one that has a healthy dislike of them. So now Moses is not moving at all, my hands are full with the drinks, and Josie’s welcoming herself into this new home.

The mom came out and got the dog, but Moses wasn’t making any effort to continue his trek down the steps. So I walked to the porch, put the coffee cups down, went back to pick him up before he could head back to the van, and got him to the front door. After I put him back down and picked up the coffees, I was ready to meet that baby and hopefully calm any reservations or fears the mom might be having about having a child with Down syndrome, if she was having any at all.

After introductions were made, Josie and I went right over to where that sweet baby was sleeping and we ooh’d and aww’d over her perfect little eyes, nose, mouth, and hands, and we giggled at how her hair stood straight up. Standing up, I said, “Moses, come see the baby!” and looked over to where I thought he was.

He wasn’t there.

“Moses?” The mom said she thought he was in the middle of the fort her other kiddos had been working on. I walked over and looked. Nope, not there. I stuck my head around the corner into the playroom.

Not there, either.

“Moses?” Nothing.

“I brought him inside right?” As I said those words, I was inwardly cringing at what this mom must be thinking of me. Pretty sure losing your kid within the first three minutes of meeting does not elicit feelings of confidence and normalcy. The mom said she was pretty sure he came inside, but as I was opening the front door to make sure, I heard him.

“Moses! Where are you?” And then he appeared at the top of the steps. While Josie and I had made a beeline for the baby, Moses made himself at home and went straight upstairs. Apologizing, I ran up the stairs and carried him back down. The mom assured me he was fine and that there was nothing up there that he could hurt.

Now, I’m the type of person that doesn’t say such things if I don’t mean them, so when others say such things to me, I go with it. So after he looked at the baby for about 7 seconds and walked away, I wasn’t worried about where he was going since I knew he was at least safely inside.

As the mom and I talked and got to know each other, Josie went off to play with the other kids for a few minutes, but then she was back to ask if she could hold the baby. Josie loves babies. She pretends like she’s pregnant at least once a week and then loves those babies after they magically get out of her stomach. Getting to hold a real baby is like holding a little piece of heaven for that girl.

While Josie sat on the couch and held the baby, the mom and I continued chatting while I made sure that Josie was supporting the baby’s head and kept an eye out for Moses. After a few minutes, it was becoming clear that the baby was hungry, so I took her from Josie to give her to her momma. As the mom got settled in to nurse her, Josie went over and sat right next to her. Like she wanted to watch to see exactly how this baby was getting fed since as there was no bottle in sight.

“Josie, go play.”

“But…”

“Josie, go check on your brother. Now.”

Reluctantly, Josie left the room and thankfully didn’t come back until after the baby had finished nursing.

In the time that we were there, I could tell that this was a mom that I could totally be friends with. She was easy to talk to, and we talked about several things in addition to some questions she had about my experiences with Moses and Down syndrome.

As we talked, it was kind of cool for me to realize how normal Down syndrome really has become for me and my family. I vividly remember being in her shoes with a newborn and learning about First Steps, therapies, health screenings, etc. I did my best to assure her that while I know it can be overwhelming at first, there really are great supports available and it doesn’t take too long to settle in to this new normal place.

And then the hour I had given us to stay was up. I called for Josie and walked over to call Moses to come downstairs only to find that he had thrown no less than 15 stuffed animals and a couple of books down the stairs.

“Moses Alexander!”

He appeared at the top of the steps with a huge smile and another stuffed animal to chuck down the steps.

Apologizing, I told Josie to help me clean up the carnage, but the mom stopped us and assured me it was no big deal and that her other kids would take them back upstairs. Praying that she meant what she said and that she wasn’t crying on the inside, I went to gather up Moses who had wandered into the playroom. Before he could make any more of a mess, I told him to come say goodbye. Carrying a toy with him, he came over and said, “Bye.”

Josie, seeing an opportunity to be helpful, grabbed the toy and when Moses tried to pull it back, he fell and hit his head pretty hard on my knee. I prayed it would play it tough, but he promptly started wailing. Doing my best to act like this was nothing, I gave the mom a quick hug, told her how amazing it was to meet her and her kiddos, and told her to call or text me if she needed anything.

Moses cried the whole walk back to the van then promptly stopped and smiled when I told him he could watch Elmo on the way home. By the time we pulled away, he was happy watching Elmo, Josie was talking about the sweet little baby, and I was thinking that I had absolutely failed at making a great first impression. I wanted to say to her, “I promise we’re totally normal!” But as I drove, I started laughing at the whole ordeal and decided that while it may not have been a great impression, it definitely wasn’t a boring one!

We may not have made the impression I had hoped to make, but I do pray that she saw that we are more or less an amazing, normal family. I think when some parents have a baby with Down syndrome, there is an apprehension that there will be a lack of normalcy – with the baby and life in general. The awesome thing is that life with a baby with Down syndrome is totally normal. If anything, the only way it’s abnormal is that it’s better than you could have ever imagined.

The Other R-Word, Part 2

A few months ago, I wrote about my desire to put an end to associating an unborn baby with Down syndrome with the word ‘risk’. Because I feel strongly about the power of words and their ability to change (or even save) lives, I decided to follow-up with Healthline about the fact that it used the word ‘risk’ twice as much in reference to Down syndrome than several other birth defects and disabilities. (You can read the email I sent to them here.)

I sent that email on February 24. In my head, I had a grand vision of making a post on March 21, which is World Down Syndrome Day, to share that Healthline had made revisions to reduce the number of times that R-word was used on its webpage.

Like many visions, it didn’t happen. Disappointed, I wondered if I should really even pursue it further. I mean, I even had someone tell me, “It’s just the way it is.” when I was talking about how I didn’t think it was right that ‘risk’ was used so much more to describe Down syndrome than other conditions.

But then I remembered my response to that. “That doesn’t mean it has to stay that way.”

So on March 26, I wrote Healthline again. (You can read the email here.) This time, I gave suggested revisions using words like ‘chance’ and ‘probability’ – both of which honor the unknowns pregnancy bring in reference to having a baby with Down syndrome but that don’t carry the negativity of the other R-word.

On March 27, I had this reply in my inbox:

Dear Jenny,

Thank you for writing again and I apologize for not resolving this sooner. I had spoken with our social media editor last week (who had also received a message on this issue) and I had mistakenly thought that our production team was already making the changes you requested, which turned out not to be the case. So I have gone in again myself and made further edits on this article with the help of your recommendations. I hope that the change of language is more appropriate now. Apologies for the delay and thank you for your communication. Please do not hesitate to contact us in the future.

Best,

John Bassham
Editor II, Feedback and Updates
Healthline Media

Of course, this email got totally buried in my inbox and I didn’t see it until last week. As soon as I finished reading it, I went to the Healthline page about Down syndrome. sure enough, John had made the changes! Not only did he use some of the suggestions I had given, he made a couple more, including changing the heading that once read “Risks” to “Statistics and considerations”.

I finally replied to Mr. John Bassham today:

Dear John,

Thank you for your email and especially for the changes you made to the Healthline article about Down syndrome which reduced that the number of times the word ‘risk’ was used in the article from 11 to 4. When I read through it with the revisions, it definitely sounds much more informational and neutral in providing information about Down syndrome. I also appreciate your attention and revision to the previous heading of Risk, and that you renamed it Statistics and Considerations.

I hope that future readers will find and appreciate that your website’s article promotes an understanding of Down syndrome but that it does not make it sound as though it is a risk to be avoided. Again, thank you.

Sincerely yours,

Jenny Moyers

Like so many other social issues, just because something has been a certain way for however long, it doesn’t make it right and it doesn’t mean it has to stay that way.

For me, I will continue fighting for the Down syndrome community, especially for those that haven’t even had a chance at life yet. I will continue to work to educate people that a baby with Down syndrome is not a risk to be avoided. An unborn baby with Down syndrome is not a cancer to be cut out. A baby with Down syndrome is a person with the potential to make world a better place when given a chance at life.

(Click here to read the original ‘The Other R-Word’ post.)

Choosing Grateful

A couple of months ago, I got to take my daughter on a quick trip to Florida to visit my parents. The first full day we were there was thankfully the most beautiful, perfect day ever. Blue skies, white sand, a little breeze, and a very excited 4-year-old. Watching her run back and forth to get water for the sandcastle her Daddy O was building for her, getting to chat with my Mom, and feeling the sand between my toes was a little slice of Heaven on earth.

We had just gotten settled on the beach the second morning when I got a text delivering heartbreaking news about a good friend. As hard as I tried, I couldn’t hold back the tears and began thinking of what I could’ve said or done differently to give her more help and support. After talking to my mom about it and accepting that there was nothing I could do from where I was at other than pray, I decided to take a walk. Josie and my mom went with me, and it didn’t take long before Josie’s endless chatter and excitement over finding shells and running after seagulls helped me to feel better. After a bit, Josie and my mom headed back while I kept walking and looking for shells. The waves were a little more rough than the day before so finding shells was a little harder, but then I found a little tide pool that had some of the tiniest shells I had ever seen and I spent a good amount of time hunting for them and clearing my head.

On my walk back, I saw another pretty shell and when I picked it up, I was so excited at how beautiful it really was. It was a small lightning whelk, one of my favorite types, whose shape was perfectly intact and the most beautiful shade of soft white. If was like the Audrey Hepburn of shells. It was like finding the perfect pair of red high heels when you weren’t even shopping for shoes. Or finding your favorite bottle of Pinot Noir on sale.

And then it was gone.

When I put my hand back in the water to get the sand off of my elegantly beautiful shell, the pull of the wave pulled it right back into the surf. Immediately frustrated and devastated but still hopeful, I frantically looked for the shell while trying not to look like I wasn’t playing with a full deck of cards. After about a minute, I knew the chance of actually finding it was extremely slim, but there was that part of me that kept thinking, “If you keep looking just a little bit longer, you might find it.”

So I did. I kept looking for another couple of minutes. And then it hit me, like the wave that robbed me of my find: by focusing all my attention and effort on that one small shell that slipped out of my hand, I was completely disregarding the handful of beautiful shells that I was still carrying. Not to mention the ones I had found the day before.

How many times have I done that? Focused so much on what I didn’t have anymore, or even what I didn’t have in the first place, that I lost sight of what I do have. Finding people or things to blame instead of finding people or things to thank or be thankful for. Choosing to be ungrateful over grateful.

I think back to finding out that my baby would have Down syndrome. How easily I could’ve chosen to be mad at God for taking away my “perfect” baby or focus what my baby wouldn’t be able to do in his or her life. To find all of the negatives that were likely going to flood my life because of that extra chromosome.

If I had done that, would I have been able to rejoice in all the ultrasounds and tests afterwards that showed a healthy, growing baby? Would I have been able to feel the excitement that came with each passing week that brought me closer to meeting the newest member of our family? Would I have been able to through my hands up in victory when the doctor announced that I had just given birth to the boy I had prayed for?

Probably not. Because an ungrateful, negative mindset does not lend itself to finding positivity, let alone joy, in such things.

Having a grateful, positive mindset doesn’t mean that you aren’t affected by the wide-range of hardships that life brings. It doesn’t protect you from feeling the hurt, disappointment, sadness, or frustration that comes with life’s downs, such as losing the most perfect lightning whelk shell or learning of an unexpected and life-changing diagnosis.

We all know that life is far from perfect. Everyday brings challenges and obstacles that can rob us of our sense of safety, security, happiness, etc. Some of those things are small, some are ginormous. Some affect us for a minute, some for the rest of our lives.

Unfortunately, we cannot control the next snag we hit, the next hurdle we have to jump, or the next tragedy we face. We can, however, control how we respond. It doesn’t mean that we can necessarily snap our fingers and poof! change our feelings, but it does mean that we can choose to be grateful for what we do have. And that will be different for everyone. For some is might be a relationship, for some it might be their memories, for some it might be a prized possession, or for others it might be the hope for a better tomorrow. I don’t think it matters what you choose to be grateful for as long as you choose to be grateful.

One thing I’ve learned about having a grateful, positive mindset is that it doesn’t just benefit you. It will also absolutely have an impact on those around you, especially the people closest to you. If I had continued being frustrated about losing a shell I had in my possession for all of 30 seconds, I would have been sure to affect Josie and my parents. I mean, how would they not be affected by a pouting 38-year-old woman?

Or this evening when my darling son pulled the plate of deviled eggs off the counter this evening and I immediately expressed my frustration by loudly saying, “NO! NOT NICE!!!” and giving him my best disappointed-mom look while I cleaned up the mess. But then instead of staying mad about the six delicious eggs I had to put down the garbage disposal, I chose thankful for the 4 that were salvaged. (And for the 3 that I had eaten when I was making them.) The result? A pleasant, enjoyable family meal was had by all.

Life is hard. There will be ups and downs. I hope that you will choose to be grateful for your ups.