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…

Figuring It All Out

I can remember being younger and thinking that 38 was old. I also thought that by the time someone was that “old”, she would have her life figured out. She would know who she was, who she loves, what she loves to do, what works for her and what doesn’t, and so on.

Yet here I am, 38-years-old and still feeling young and dumb. I mean, I have a few things figured out – who I love, what I love to do, what doesn’t work for me – but I’m still trying to figure out so much and how it all fits together: How to be a good wife. How to be a good mother. How to be a good daughter. How to be a good sister. How to be a good friend. How to be a good counselor. How to be a good person. How to take care of everyone and everything in my life and take care of myself, too. I’m doing my best to do all of those things the best that I can, but I still find myself feeling like I’m floundering through it all. Probably because when I’m giving more attention to one role for whatever reason, I feel like I’m letting the other roles down. Specifically, I feel like I’m letting the people involved in those other roles down. Especially when I’m doing something to take care of myself.

I am very aware that I put a lot of pressure on myself. I always have. When I do give myself a break and give myself permission to give less than what I feel is my best, I typically end up feeling disappointed in myself rather than feeling relief from having done less.

I am also very aware that the people in my life who love me would do anything to help me where I need it. I do like to think that I do ask for help more now than I did before, especially when it comes to my kids. However, I know I don’t ask for as much help as I should because asking for help usually comes with feelings of guilt. I feel like I’m putting the others out or keeping them from doing other things that they would like to do or have on their own list. Plus, I feel like I should be the one taking care of others, and it’s uncomfortable for me to have others take care of me.

Then I internalize it all. All the stress, all the uncertainty, all the pressure. Sure, I’ll vent to people here and there, but then I end the vent session with something like, “I’m okay” and then try to shift the conversation to them. And then I usually end up feeling bad for dumping my problems on them. I’ve even apologized to my counselor for pouring out all of my troubles onto her. I also internalize the stress, uncertainty, and pressure I experience from listening to other people’s stressful situations. (I guess that could be called secondary stress?) I don’t want to tell them that their stress stresses me out because I don’t want them to feel like they can’t talk to me and I also don’t want to add to their stress. But it affects me even though I try not to let it.

Then I find myself running on empty – physically, mentally, and emotionally. Like I literally don’t have anything else to give to anyone in any capacity. That is not a good state for anyone to be in, but that exactly where I found myself Friday morning. As I listened to the sound of my husband playing with the kids, I was lying in bed crying and telling God that I needed a break and that I needed someone to take care of me for a minute. I’ve learned that God’s timeline for answering prayers is not always the same as what I think it should be, but He always answers them at the right time. Friday was one of the quickest turnarounds ever. Not even an hour later, Tyson was hugging me and telling me that I was going to take a break and that I had to let him take care of me for the next few days.

Last year was the first time I realized that taking time to myself is one of the best ways I can take care of myself. Of course, I’ve spent the last 9 months wondering why it took me so long to figure that out. (It finally dawned on me that up until Josie came along, I had a lot of time to myself that I didn’t have to ask for.) Thankfully, I have a husband who loves and understands me and knows what I need before I can figure it out myself. He knows that I get to a point where I need some time off. Some time away to rest and read and sort through my thoughts. That’s why he booked a hotel room for me last night. That’s why he got frustrated when yesterday morning took an unexpected turn and I didn’t get to start my mini-vacation until 11:00 a.m. instead of 9:00 a.m.

When I woke up this morning, I felt rested and refreshed and ready to sort through the sea of thoughts that had finally calmed down in my head. I’ve come to realize that I’m 38 and don’t have it all figured out, and that’s okay. For me, it’s probably very likely that I won’t have my life figured out for a very long time, maybe ever, because my life is not static. It is constantly changing. Sometimes change comes fast and unexpectedly, sometimes I can see it coming and have time to prepare. Sometimes change brings happiness, sometimes it brings hardships, sometimes it’s barely a blip on the radar. Some change brings stress, some change brings relief. Regardless of what’s coming with the changes that will happen in my life, it’s up to me to keep myself physically, mentally, and emotionally healthy so I can be ready for whatever.

That means I have to keep working on giving myself permission to not have it all figured out and that all I can do is my best. I also have to remember that my best might look different from day-to-day. I have to make regular appointments to see my counselor even when I’m feeling mentally well so I can maintain that. I especially have to remember to ask for help and leave the feelings of guilt at the door when that help arrives and just be thankful for it and accept it. Basically, I have to do the one things I’m constantly encouraging other people to do, and that’s to take care of myself so that I can take care of others. One day, I really might get it all figured out.

Sugar:Spice

“Sugar and spice and everything nice, that’s what little girls are made of.” 

What this particular nursery rhyme fails to mention is that the ratio of sugar to spice is not necessarily even. In Josie’s case, the amount of spice seems to be greater than the sugar, and not in a pleasing to the palate kind of way.

A few weeks ago, after multiple meltdowns and power struggles with my darling 4-year-old dictator wannabe daughter, I called my best friend. I told her about the series of trials Josie and I had been through because of her strong dislike of not getting her way and her current style of expressing it through crying and screaming and stomping. 

I told her that I thought I was mentally and emotionally prepared to hear “I don’t love you”, “You’re not a good mom”, and/or “I hate you” come out of her mouth, because she’s been informing me that I’m not nice for some time now. (My personal favorite is when she tells me, “I’m so mad to you right now.”) When she says those things, I take it as a compliment that I’m doing a good job in being a mom. But when she actually said/screamed “I don’t love you” in a fit of rage (I wouldn’t let her eat an entire ginormous cupcake because it was getting too close to bedtime…I know, I’m horrible), it cut right through the ol’ mom heart.

After listening to me unload about my daughter’s behavior, my best friend told me that while it’s hard right now, this strong-willed, stubborn, argumentative behavior is going to lead her to be a confident and assertive woman in the end. Hearing this wasn’t new to me because we’ve talked about countless times before with her own oldest daughter as well as with Josie. 

But this time it really didn’t help me to feel better. This is what I text my best friend the next morning:

“…I want her to be kind. I want kindness and compassion and respect to be the traits that are ingrained in her. It’s not to say I want her to be timid and a doormat and submissive…I want her to be confident and assertive but know how to be those things with kindness, compassion, and respect. And I’m seeing that the struggle to guide her to that path is going to be harder than I thought.”

In her wisdom, she reminded me that this whole parenting thing is a marathon, not a sprint, and I’ll get glimmers that I’m succeeding every now and then along the way.

The thing is, Josie really is kind and sweet and compassionate. She truly is. It’s just that she typically shows that side of her to others – Moses, friends, cousins, strangers. I usually get the other side, and that’s hard on me. In fact, it gets downright exhausting. 

Yesterday I was having a hard time after a long week (okay, weeks) and started crying. As I sat on the bed crying, she came over and rubbed my arm and said, “It’s okay, Mom.” When I started crying even harder because I felt so bad that my 4-year-old was having to console me, she left the room and came back carrying one of her favorite blankets. She gently put it around my shoulders and said, “There. That’ll help you feel better.” Then she found a book and some pictures of her to help me feel better, too.

That’s my daughter. She tests my patience, doesn’t listen, and defies me on a regular basis. And when I need it the most, she gives me the gift of a glimmer of her kindness and compassion directed at me. Maybe her ratio of sugar to spice is pretty even after all.

Oh, and remember that cupcake? When she tried it the next day, she didn’t even like it. 

Share the Load

Several days ago, I asked Tyson to read something. Before I showed him what it was, I told him that I wanted to know what his thoughts were on it and that I wasn’t trying to “tell him something” by having him read it. Because I was driving and he was the passenger with no means of escape, and because he loves me, he agreed to read “it”.

“It” was the comic You Should’ve Asked by a French cartoonist named Emma.  The comic centers around the idea that women typically take on the mental load of a household, meaning they manage the household as far as making sure appointments get scheduled, the house is clean, laundry gets done, food is in the fridge, etc.

After he read it, his first response was that it was hard for him to believe that I wasn’t trying to tell him something. I expected that and told him that I honestly just wanted to know his reaction and his thoughts to the comic. I explained to him that I had read the comic months ago and knew what my thoughts were, but I really wanted to know what he thought about it. I wanted to hear the other side of the story.

What followed was a great conversation. Did we agree on everything? No. Did we each get a chance to share our thoughts? Yes. Did we listen to one another? Yes. Was I lying when I told him that I wasn’t trying to tell him something by having him read the comic? A little. Our little family takes a lot to manage and I was hoping the comic might give him a glimpse of what it’s like inside my brain when it comes to our household.

Did the conversation end with us making a list of everything that needs to be done on a day-to-day, week-to-week, or month-to-month basis for our family and then splitting it in half? No. It did end, however, with us each having a better understanding of what we both bring to the table to ensure our family is taken care of.

It also ended me telling him how grateful I am that I have a husband that I can have this kind of conversation with. That I have a husband that loves and respects me enough to listen when I bring up things that could easily lead to an argument if he wasn’t willing to listen and respect my point of view (whether he agreed with it or not). And I am also extremely grateful that I have a husband who does do a lot to help out around the house. Did I mention that he does his own laundry??

One of the things that I didn’t like about the comic is how it portrays the man as an oblivious schmuck that expects the woman to do the woman’s work while he has a drink. While I do know that there are men out there that are exactly like that, Tyson is not. I know that there are a lot of men out there that are very involved and play an active role in their family. Does Tyson always do exactly what I would like for him to do and exactly how I would like for him to do it? No. But I choose to focus on the fact that he does a lot for me and our kids instead of how he didn’t load the dishwasher right. I think that there’s a lot of danger that lies in not recognizing and appreciating what your partner does do and instead focusing on what he or she is not doing.

Then yesterday something magical happened. As I was getting Moses ready for bed, Tyson came to the doorway and said something. I thought he said, “I’ll take him” and I responded with, “I’m fine. I’m almost finished.” He responded with, “I said I’m going to take something off your mental load. From now on, I’m going to take care of Moses’ laundry. I’ll do mine and his, so you just have to worry about yours and Josie’s.”

And that, people, is real-life love and respect in a real-life partnership. It’s amazing what can happen when two people share their thoughts and really listen to one another. In this case, the mental load, and the laundry loads, got shared.

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!!!