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.

The Blue Elephant in the Room

I vividly remember one of the first times I saw a child on a leash. It was at West Park Mall and I judged those parents hard. I was all “Kids are Humans, Not Pets!”. Most likely I said more than once that I would “never” put my kid on a leash. Clearly I was not yet a parent of a two-year-old boy that had finally mastered the arts of both walking and completely ignoring the words “no” and “stop”.

It only took one evening consisting of a trip to Target where he refused to sit in the cart and my poor Dad had to chase him all over the store followed by dinner at Culver’s where he refused to stay in the high chair and walked around begging food from strangers for me to start trying to figure out how to not take him anywhere ever again. But when I ran into a fellow mom from my hometown who had her young son safely strapped into a backpack harness with a leash, I knew I had found the answer to my delimma.

So lo and behold a few weeks later Santa brought Moses a super cute blue elephant backpack with a nice leash attached that had gotten good reviews on Amazon. Last week I finally got to try it out.

Because of the flat feet and low muscle tone that came with having Down syndrome, Moses gets to wear orthotics to help stabilize his feet and make sure that he learns to walk properly. No big deal, right. Actually, it’s not UNTIL trying to find shoes that will fit. I’ll put trying to find shoes in a toddler size 6 or 6.5 right up there with going to the dentist or gynecologist. Necessary but not a whole lot of fun. (I will say that there are some really cool shoes for kids with braces in a size 10 or above. Hopefully he’ll have graduated to inserts by then, but if not, then at least I have hope that it won’t be so hard to find shoes for him.)

One of the tricks I learned from the last set of braces was to get shoes in extra-wide and take the insoles out. Another thing I learned is that shoes with a velcro strap make putting the shoes on a lot easier and quicker as opposed to shoes that tie. And since Moses has proved to be quite apt at sliding his foot right out of both the shoes and braces, easy and quick are must-have features. I have also learned that the velcro strap on most toddler extra-wide shoes are not long enough to accommodate chubby toddler feet encased in braces even after taking the insole out. Fun facts, huh?!

After searching online and coming up short, I decided to just take him to our local Shoe Carnival because I was told it carried extra-wide shoes that should work. Josie was at a basketball game with Tyson, so I also saw it as the perfect opportunity to use the leash. I was so optimistic that it was going to go well that I even thought we might go to Target, too! So when we got to the shoe store, I was practically whistling as I strapped him into his super cute blue elephant backpack and carried him from the van to the store. Once inside, a friendly store associate asked if I needed help finding anything, and I told her I was looking for extra-wide toddler shoes. She said would show me what they had, so I put Moses down, held on tightly to the leash, and off we went.

It started off well as we followed the associate, Moses on his leash, me holding on to it. When we got to the section with his size and she started showing me what they had, Moses seemed content to sit down and pull shoes and boxes off the shelf. Now, I know that this doesn’t necessarily sound like a good thing, but he was staying in one place and I 100% planned to clean up his mess so it was absolutely a good thing. I totally felt like I was winning.

That good thing lasted about one whole minute, which was how long it took for Moses to lose interest in the shoes and want to walk around. As the associate was showing me the shoes that came in wide (not extra-wide), Moses walked as far as his leash would let him. And then he stopped. And he was not happy.

That’s when it got fun.

There I was, trying to pay attention to what the sales associate was telling me and showing me while also holding on to the leash that Moses was pulling against with all his might. At this point, I got the feeling that the associate wasn’t quite sure what to think about the situation going on in front of her. Kinda like she was maybe thinking, “Is this okay? Does that little boy have Down syndrome? Can she put him on a leash like that?” And my mental answer to all of that was, “Yes. Yes. And yes.”

As I was trying to explain that I didn’t quite know what size he needed because of the braces (which I had of course forgotten to bring with me), the associate was looking at me like I was an idiot and Moses was really starting to get mad. He started yelling and tried so hard to keep going forward that he ended up falling on his little butt. I couldn’t help but to laugh at him and then proceeded to ask the associate to give me two of the shoes in both a 6 and a 6.5. She gave me a really confused look like she was wondering if I had ever actually bought shoes before, so I said, “I’ll just take them home, try them on him with his braces, and then bring back the ones that don’t fit.” She then helpfully informed me that I could in fact do just that.

She started walking towards the registers and I gave Moses’ leash a little tug and gave a cheery “Let’s go!” His response was to yell at me and try once more to go the opposite way. So I picked him up, carried him to the register where he immediately wanted to be put down. Leash firmly in hand, I put him down and turned my attention to the associate who was helpfully telling me again that I could return any of the shoes that did not fit as long as they had not been worn and I had my receipt because, you know, I’ve never bought shoes before.

After Moses had examined the shoestring display behind us, he was ready to explore the rest of the store. When he felt that dreaded tug of resistance after taking about 6 steps, he surrendered to the leash. As in he flat out laid face down in the middle of the floor and just gave up. You might imagine the look of confusion/concern on the poor sales associate’s face when I just laughed at him and said, “Life is hard, isn’t it, bud?” When I swiped my credit card to pay for the shoes that were undoubtedly all going to be returned (because they were wides, not extra-wides), part of me wondered if the information from it was going to used to report me to Child Protective Services.

I got my bag and receipt, put Moses on his feet, and let him lead the way to the door. Before picking him up to go back out to the van, I stopped to take a picture of him on his leash to send to my friends.

Here’s the thing, I could’ve walked out of there feeling frustrated and discouraged at the lack of understanding that wide and extra-wide are not the same or at the feeling that I was being judged for having a child on a leash – a child with Down syndrome at that. But what good would that do me? Or Moses? None at all.

So instead I just laughed as we drove right past Target to go home. I laughed at that poor sales associate’s reaction to the whole thing. I laughed at Moses’ reaction to his leash. I laughed at my own reaction to it all.

Life hands us all kinds of ups and downs, and there are some that we can and should be frustrated or discouraged or sad or mad about. But there are so many that we can just shake our heads and laugh at.

I’m thankful for the laugh I got out of that highly unsuccessful trip to the shoe store and the laughs I’ve gotten out of telling others about it. And I hope that maybe that most helpful sales associate saw that a two-year-old child with Down syndrome reacts pretty much just like any two-year-old child does when he doesn’t get his way. I hope that one day she has a two-year-old boy and thinks of us when she thinks of buying a leash for him. And I hope she learns that wide shoes are not the same as extra-wide.

The Other R-Word

About a month ago, I was talking to my sister and was trying to remember the three types of Down syndrome. It was still on my mind when I went to bed a little while later, so I decided to look it up before I went to sleep.

I came across a website called Healthline that had the information I was looking for (Trisomy 21, translocation, and mosaicism). I ended up skimming through the article which had the typical general information about Down syndrome, especially highlighting the delays and difficulties that can accompany the extra chromosome. It doesn’t really faze me to read those things anymore, but then I read this in the Screening section:

“Some women choose not to undergo these tests because of the risk of miscarriage. They’d rather risk having a child with Down syndrome than lose the pregnancy.”

That fazed me.

Medically speaking, when I think of risk, I think of life-threatening conditions. Down syndrome is not life-threatening. It’s life-enhancing. If you talk to almost anyone who has a personal connection to a person with Down syndrome, the only “risk” that is involved is that you may experience more love and joy than you ever thought possible. If you talk to a person with Down syndrome, they likely are not going to refer to their life as “risky”. A baby with Down syndrome is not a risk. It’s a baby. And like any baby, it can soften the hardest of hearts, bring a smile to the most lonely or unhappy, and has unlimited potential to achieve amazing things.

So after reading those two sentences, I scrolled to the bottom of the page and found a Contact link. When I clicked on that, it took me to a page where I could report an inaccuracy. So I did:

To Whom It May Concern:

While reading your information about Down syndrome (https://www.healthline.com/health/down-syndrome#outlook), I came across the following statement in the Screening section:
“Some women choose not to undergo these tests because of the risk of miscarriage. They’d rather risk having a child with Down syndrome than lose the pregnancy.”
Stating that the woman would rather “‘risk’ having a child with Down syndrome” is inaccurate. It is also extremely offensive. It should simply state “They’d rather have a child with Down syndrome than lose the pregnancy.” If you insist on using the word “risk”, it should be to say “They’d rather have a child with Down syndrome than risk losing the pregnancy.”
Thank you for your attention to this inaccuracy. If the medical professional reviewing this statement has any questions, please contact me at your convenience.


Sincerely,
Jenny Moyers

Guess what?! It worked!!!!!!!! I am so excited so share that when I checked that same link and section last night, a month later, that second sentence has been changed! It now states:

“They’d rather have a child with Down syndrome than lose the pregnancy.”

After relishing in my victory for a couple of minutes, I looked back at the entire article and I noticed that ‘risk’ seemed to be used a lot. That made me wonder exactly how many times it was used. So in true researcher fashion, I copied and pasted the article into Google docs and hit good ol’ CTRL + H to find how many times ‘risk’ needed to be replaced.

10

Ten times that R-word meaning things like “a situation involving exposure to danger”; “the possibility that something unpleasant or unwelcome will happen”; “a person or thing regarded as a threat or likely source of danger” was used to provide information about Down syndrome.

You may be thinking, “Ten really isn’t that big of a number. Don’t be so sensitive, Jenny.” Well just for you, I decided to look up a few other birth defects or disabilities a baby could be born with to see if ‘risk’ was used as often in those articles. Using my same highly scientific “Cut & Paste, Find & Replace” research method, this is what I found:

  • Birth defects (overall) – 14
  • Cystic fibrosis – 5
  • Congenital heart disease – 4
  • Cerebral palsy – 3
  • Spina bifida – 1

The word ‘risk’ is used twice as much in reference to Down syndrome than four other common disabilities that can occur in babies. And that’s with one of the ‘risk’ references taken out. (Go me!)

In the United States, approximately 67% of fetuses determined to have Down syndrome are aborted each year, and there are some researchers that believe that percentage could be higher. That percentage is significantly higher in other countries such as the United Kingdom, Iceland, and Denmark. Some people will point out the population size of the different countries, as though that’s an excuse to kill a fetus that will likely develop into a baby with Down syndrome.

But when such a bleak picture is painted by medical professionals and literature by using a word like ‘risk’ that indicates that the fetus poses a danger or a threat, while I’m devastated by those numbers, I can’t say I’m surprised by them. Yes, I absolutely support a woman choosing to do genetic testing to learn if her baby will likely have a genetic condition such as Down syndrome. Some of us like to have a feeling of being prepared to meet the different needs our new baby might have (as if you can ever truly be prepared). The word ‘risk’, however, elicits feelings and images of doom and gloom, unpleasantness, maybe even danger. (Insert eye-roll at the thought of Moses being dangerous. Unless cuteness is dangerous, then he totally is.)

A person that hasn’t had the experience of having a child or a loved one with Down syndrome or other disability may not understand why this seemingly little word is such a big deal. If that’s the case for you, let me ask you if you would refer to a baby with a disability or birth defect as a retard? Gimp? Freak?

No?

Why not?

Oh, because those words are offensive?

Then let’s stop associating an unborn baby with Down syndrome with risk. It’s not a risk. It’s a baby. A baby that deserves the chance to grow up to be its own unique and wonderful person.

Please, if you know someone in the medical profession, encourage them to consider the power of their words. It can literally change, or maybe even save, a life.

And thank you, Healthline, for taking this seriously and making that change. Hopefully we can talk soon about those other 10 usages…

The Do’s and Don’ts of Down Syndrome

Somehow it’s already been two years since Moses Alexander Moyers made his entrance into this world. Two years since I first got to meet the little person that would complete my little family in ways I never knew a tiny baby could. Before he came along, I knew about as much about Down syndrome as the next person, and what I knew were mostly the typical stereotypes and generalizations that are casually assigned to people with Down syndrome. Needless to say, I’ve learned a lot in these past two years about Down syndrome, about my family and friends, and about myself. In honor of Moses’ 2nd birthday and Down Syndrome Awareness Month, here are some of the do’s and don’ts of Down syndrome that I have learned:

  • DO congratulate an expecting or new mother of a baby with Down syndrome. How? It’s easy. Simply say, “Congratulations!” Whether the baby has 46 chromosomes or 47, it’s still a baby.
  • DON’T say “I’m sorry” when you’re told a baby will be or is born with Down syndrome. Would you say that to a woman who just says, “I’m pregnant”? Even if she has tears in her eyes because she’s scared of becoming a mother or terrified of how she’s going to handle adding another child to her crew? I would hope not. Seriously, don’t say it.
  • DO get to know Moses. He will literally light up your world with his smile and his comical personality.
  • DON’T forget about his big sister, Josie. She is his favorite person on this planet for a reason. She will also absolutely brighten your day with her beautiful smile and animated stories. So much of what Moses learns is because of this amazing little girl.
  • DO acknowledge that he has Down syndrome.  Could you imagine Shaquille O’Neal as a short, skinny, white guy? Right. In the same way, I can’t imagine Moses without Down syndrome. It’s part of who he is and makes him Moses so why try to pretend it’s not there?
  • DON’T call him a Downs kid. It may not seem negative or offensive to you, but it is. This is not a debatable point. Just as it would be offensive to call him retarded, it’s also offensive to call him a Downs kid. He’s Moses, a kid…who has an extra copy of the 21st chromosome. But you can just call him Moses.
  • DO ask questions. Questions lead to knowledge. Knowledge leads to understanding. Understanding leads to acceptance. Acceptance leads to a better world for all people.
  • DON’T expect me to have all the answers. One thing I’ve learned is that all people with Down syndrome are unique. So while I’ve learned a lot about Down syndrome in the past 2 years, there is still a lot that I don’t know about it yet.
  • DO understand that it’s harder and takes longer for Moses to learn how to do things. That might seem daunting to some people, but I’ve learned that it makes his accomplishments that much sweeter.
  • DON’T underestimate anything about him, including his intelligence. He seriously started to catch on to how to give a wet-willy after Josie did it to him just twice. I’m actually praying it takes him a while to understand that he has to stick his finger into his mouth before sticking it into my ear.
  • DO celebrate him and all those with Down syndrome. Is Moses perfect? No. Neither am I. Neither are you. No one is. Thankfully, none of us have to be perfect to be important and celebrated.
  • DO believe me when I say that Moses has brought way more ups to my life than downs. Believe any parent, family member, or friend of a person with Down syndrome that says the same thing. Believe us because what we say is true.

Happy birthday, Moses! You have taught me a lifetime of lessons in these two short years. I can’t wait to see what this year has in store for you!IMG_7106

 

Way Better Than Okay

Imagine walking into a room full of mothers of young children with Down syndrome. Imagine what it’s like to listen to these women share stories of their babies and toddlers with Down syndrome. Do you imagine a room that is quiet and somber? Do you picture them sadly commiserating with one another about the burden of raising a child with Down syndrome? Trying to one-up each other about the daily trials and tribulations they face? Or perhaps they’re consoling one another and wiping away their tears together?

Go ahead and imagine that scene.

Now imagine the complete opposite. Imagine a room full of mothers that are smiling and laughing and sharing in one another’s joys of having a child with Down syndrome. Imagine a mother of a 2-year-old offering congratulations and support to a mother of a 2-month-old. Imagine a room full of mothers exuding happiness and pride and confidence.

That’s the room I got to spend a couple of precious hours in on Saturday. I got to meet new mothers and see a couple of the friendly faces I’ve met over the past 2 years since I joined the Moms Of Children with Down Syndrome Club. I got to watch videos that highlight the beauty that comes from a person living with an extra chromosome. I got to listen to to the testimonies of other parents who have been in this club much longer than I have and feel excited and hopeful about the future that awaits Moses and our family.

At the beginning of the luncheon, a video was shown that centered around two families – one with an older son with Down syndrome, the other with a 3-year-old boy with Down syndrome. It was a wonderful, inspiring video to watch, but the end is what hit me the hardest. The father of the older boy was saying that “if he were to tell a new father who has a child with Down syndrome one thing…” At that point, he got choked up and couldn’t continue talking. His wife said, “You would tell them that it’s going to be okay.” The man shook his head and finally said, “No, I would tell them that it’s going to be way better than okay. It’s going to be amazing.” Cue the tears!!!! I don’t even have 2 years under my belt, but this resonated so much with me because it’s just so true. This journey with Moses has brought way more smiles, laughs, and joy than I could have ever imagined.

Next, we got to hear from two mothers who have older children. One has a son who is 17, and the other has a daughter that is 21 or 22. Both had very similar messages of how important it is for us to remember that our children are going to live up to our expectations. If we set low expectations and limitations on what they should and can do, then that’s what they’re most likely going to accomplish. I think it’s easy for any parent to think that their children isn’t ready for this thing or the other, or that there are certain dreams and aspirations that are just out of reach. It’s scary to even think about watching our children fail or get hurt, and it’s even worse to actually watch it happen. But failing and even falling down every once in a while is what lead to the growth that we ultimately want for our children. That includes children with Down syndrome. It might take longer and success may look different for Moses and other children with an extra chromosome, but it’s not up to me to define what success is for him. That’s up to him, and it’s my job to be there to help and encourage him along the way.

As I was about to leave, I saw the two mothers that spoke talking to another woman. I walked over and thanked them for sharing their stories and insights. One of them wrapped me in a big hug and said, “Welcome to the club!” I laughed and told her that I was almost a 2-year member but thanked her all the same. That led to a conversation with the woman they had been talking to who really is a brand-new member to our club. She has a 2-month-old and said she almost didn’t come. I don’t know if my reaction surprised her, but I said to her, “Oooh!!! You really are a brand new member to our club! Welcome and congratulations!!! You are in for more blessings than you could’ve imagined.” We then had a great conversation (in my opinion) about her family which includes two other daughters that she wants to do right by. I shared what had worked for me with Josie, congratulated her again, and wished her the very best.

I walked out of there really, truly believing in some of the phrases I’ve heard over the past 2 years. I absolutely am one of the lucky few parents chosen to have a child with Down syndrome. I absolutely did hit the lottery when God gave me a child that got an extra chromosome. My life is absolutely going to be better with Moses in it than it could have ever been without him.

For the rest of the day and on the drive back home, I replayed in my mind the videos I had seen, the stories I had heard, and the conversations I had had. In addition to what I’ve already mentioned, I also kept going back to what two other mothers in attendance had shared. One talked about how after the birth of her baby, her OB/GYN stayed with her for 10-15 minutes and had told her that she had never gotten to be part of such a special birth. The other told of a day she went shopping with a friend who carried around the mom’s daughter  through one of the stores. Her friend commented that the people at that store were just so friendly. Then it dawned on her that it wasn’t so much her that they were being friendly to, it was the special child she was carrying. The mom said that her friend told her that it was as if people were just drawn to the little girl.

When I put all of these things together, I have to ask myself, “When is finding out that a baby has Down syndrome going to be something to celebrate? When will doctors finally give the results of genetic testing to an expecting mother and say, ‘Congratulations! Your baby has an extra copy of the 21st chromosome. There are some things that we need to keep a close eye on during your pregnancy and possibly be ready to address when he or she is born, but for right now, just enjoy the news that you hit the genetic lottery!’ When will parents be able to share the news that their child has Down syndrome with a smile on their face and pride in their voice?” Because seriously, having a child with Down syndrome is life-changing in all the best ways. You get to experience a life that is full of love and joy and celebration. Like the dad in the video said, it’s way better than okay…it’s AMAZING!!!