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!

 

This is the response my best friend wrote yesterday:

She wrote it in response to seeing this on her Facebook news feed:

She didn’t tell me about it. I just happened to see it as I was scrolling through Facebook after Josie and Moses went down for their naps. I felt as though my heart stopped for a second, and then I started to cry. Those first tears were from being so thankful that she would speak up for Moses and every other baby/child/person with Down syndrome. Then I started reading through the comments others were posting about their own children with Down syndrome. That’s when the tears of sadness and anger started. There were multiple comments describing how upon learning that the results of genetic screening tests indicated the baby had Down syndrome, mothers were encouraged to abort the baby or start the process to give it up for adoption.

WHY?????????? Why should a baby with Down syndrome, or any other birth defect or disability, not be given a chance at life? The chance to be loved and to give love in return? The chance to prove that every life is precious and that every baby that is born is going to challenge his or her parents in some way? The chance to be allowed to grow up and perhaps change the minds of those who believe that they should have never been born? The chance to change the world?

Are these kids so “risky” that they should be kept separate from the general population so as to not subject others to their almond-shaped eyes, flat profile, and slightly smaller ears? Do the “normal” people need to be shielded from seeing a person with Down syndrome’s tongue sticking out or the horizontal line that runs across the palm of their hand? Are doctors afraid that it might be too much for parents and the rest of society to deal with the low muscle tone or speech impairments that people with Down syndrome tend to have? Are they leary of joy that could follow after being around a person that is quick to smile and still get excited by the little things in life? Should these “risky” children should be eliminated before they become such burdens to society?

These are just some of the questions that I would love to ask those doctors that encourage termination of a baby with Down syndrome. I want to know the goal, the purpose, they have in mind when they suggest a parent give up their unborn baby, many times before having 100% confirmation that the baby does in fact have Down syndrome.  Are they trying to create the perfect society? Are they trying to spare the parents from heartache and pain? If that’s the case, then can they also figure out how to screen to know if a person will grow up to become a bigot? A racist? A drug-dealer? A human-trafficker? A murderer? A sociopath? A doctor that will support the killing of babies that are not “perfect”? Because if you ask me, those are the burdens to society. How many people with Down syndrome are in jail? Have restraining orders taken out against them? Intentionally cause harm to others? Encourage another person to end another human’s life? Hmmmm….

I do not like controversy and I do not like confrontation. HOWEVER, when it comes to this issue, I will not stay quiet and I will not back down. I will fight for the rest of my life to end the negativity that still surrounds Down syndrome despite all the positivity that surrounds people with Down syndrome and those that know them. Perhaps in the future, someone writing an article on the “risks” of having a baby with Down syndrome should contact the real experts – the parents of children with Down syndrome.

As for those doctors and anyone else that supports the termination of a baby because it has Down syndrome or any other disability or birth defect, I will pray for them. I will pray that they have a change of heart and choose to support the life of someone like Moses. For those doctors that do not change their views, I will pray that they lose their medical license so that they are no longer a burden to the Down syndrome society. I’ll let God decide which prayer to answer.

[Note: I will say that I did read the article and it doesn’t necessarily support the abortion of a baby with Down syndrome. It does give information about genetic testing and even goes on to say towards the end that the information that the baby has Down syndrome can help doctors monitor the pregnancy more closely to ensure the health of the baby. However, by using the term “risk”, the author did reinforce the thought that having a baby with Down syndrome is a negative thing. I am not okay with that.]

 

Grateful, overwhelmed, humbled, thankful, blessed – these are the emotions I felt today. Twenty amazing people came to support the most important little boy in my life at the Step Up for Down Syndrome Walk in St. Louis. They didn’t have to – I know they love and support Moses unconditionally, yet they chose to spend the most beautiful Sunday at Forest Park with Tyson, Josie, Moses, and me. Then there are the other amazing people that bought shirts and/or made donations to show their love and support even though they couldn’t be at the walk. My goal was to raise $500 for this event. We raised over $1,000!

It wasn’t just the support of our family and friends that put my emotions into overdrive today, though. There’s no way to explain how it felt to look at the sea of people that were there today walking for a person with Down syndrome. At one point I caught myself thinking, “I can’t believe this many people are here just for a 1-mile walk.” Then I was close to tears as I thought that it has nothing to do with the walk – it has everything to do with the incredibly special people that it’s for. It’s actually not silly for my brother, sister-in-law, and nephew to drive down from Kansas City for this 4 hour event like I had thought to myself several times over the last few weeks. It’s important to them, it is extremely important to me, and it’s very important to the Down syndrome community.

Grateful, overwhelmed, humbled, thankful, blessed – these are the emotions I get to have because of the people who see my son and others with Down syndrome as people to be celebrated, not mourned or dismissed as they once widely were. From the bottom of my heart and with all sincerity, “Thank you!” to all of you that Step Up for Down Syndrome and Show Mo Love.

I wrote this a year ago and the words are still very true today:

Besides their birthdays, there are two dates that I will always remember with both of my children. They were the dates that it I literally felt my life change. With Josie, it was the day I found out I was pregnant. With Moses, it was May 24, the day I found out there was a 99% chance my baby would have Down Syndrome. We were packing up to go to the lake when I got the call from our midwife asking us to come in. I remember telling Tyson that she called, and he asked if there was something wrong. I remember telling him, “They usually don’t ask you to come in to tell you good news.”

When we got to the hospital and were told the results of the testing, the floodgates of emotions opened. While we had elected to have the genetic testing done, it was still shocking to hear those words. There was also a sense of relief that the news wasn’t worse. I burst into tears and tried to wrap my head around what I had just been told, but that only lasted for a few seconds because Josie came over to me clearly confused and scared about why mommy and daddy were crying. I picked her up, dried my tears, and said, “It’s going to be okay. This baby is going to be perfect and perfect for our family just like you.” That was the first of the pep talks I still give myself to try to convince myself that everything really will be okay.

The rest of that day was spent telling our parents, siblings, and best friends. Every conversation was difficult but they all resulted in the same message – we were not going to be alone in this. The immediate support we got was comforting and reassuring. Talking to my parents, my brother and sister, and my best friend also helped me to start working through the absolute jumble of thoughts and emotions I was going through. To be honest, Tyson and I didn’t talk a lot about it that first day. I think we were both too much of a mess to help each other.

Getting news that my baby will likely have a disability started me on an emotional roller coaster to say the least. There was the shock of finding that out. There was the guilt that maybe I did something to cause it. There was the sadness that my baby was likely going to have more difficulties in life from the get-go. There was the anger that my baby was likely going to have more difficulties in life from the get-go. There was the relief that my baby was going to survive and its disability was going to be mild compared to others. There was the confusion of how and why was this happening to us. Then there was, and still is, the anxiety of the uncertainty of it all.

When Tyson and I finally did talk about everything, it was hard at first because neither of us wanted to say anything to hurt the other person. In the end, we decided that we were going to love this baby and be the best parents to it just as we had been doing for Josie. We decided that we didn’t know what life was like with two kids and whatever that life ended up being like, that was going to be our new normal however it was. And that has held true for us to this day.

I’ve learned a lot in the last year and especially in the 7 months since Moses has been born. I’ve learned that God really doesn’t make mistakes and He truly does give you what and who you need in this life. I’ve learned that attitude and positivity is everything for me. Every day, I choose to focus on Moses’ strengths and successes instead of his weaknesses and struggles. I’ve learned that God has given me amazing people to help me through this, especially my husband. I’ve learned not to get too upset when people say insensitive things and how to address it when they do.

I decided to write this today not for sympathy or a pat on the back, but in the hopes that it will help even one person to know they’re not alone or to understand what it might be like for someone to go through something like this. It has helped me to finally “get it out there”. I purposely haven’t posted anything about Moses having Down Syndrome not because I wanted to hide it or because I was ashamed of it, but because I wanted people to fall in love with him for who he is. But not saying anything has left me feeling like I’m trying to hide a part of my son. Yes, Down Syndrome is a part of him, but it is not all of him. Simply put, every part of him is perfect and amazing.

One night when Josie was about 6 or 7 months old, my beautiful little baby girl screamed her beautiful little head off for about an hour. You see, Tyson usually put her to bed, and for her, that meant rocking her until she was asleep and then putting her into her crib while holding your breath and praying that you were able to take your arms out from her slowly enough so as to not to wake her up. After 6 or 7 months, Tyson had gotten quite good at putting our precious darling to bed. On this fateful night, however, Tyson was in Bloomfield for a basketball game which left me home with Josie and Lucy by myself for a lovely girls’ night-in. When it came time to put the sweet two-legged daughter to bed, I did everything right (or so I thought): I put her lotion on before zipping up her jammies, turned on the lullabye CD and her noise machine. I said her prayers and sat down in the rocking chair to send my darling babe off to la-la land. And then everything went to hell in a handbasket.

That child cried and screamed and there was nothing I could do about it. I rocked her. I walked her. I sang her Love Story. I put her in her crib and threw myself onto my bed and screamed. I hit my pillow against my bed. I picked her back up and tried soothing her again. I avoided tripping over Lucy who was following every step I made because she was every bit as upset and frustrated as I was. I let Lucy out when she went to the door. I called Tyson when I discovered several minutes later that Lucy had run away because the ice- and snow-covered streets were a far more peaceful place to be than our home. I cried with relief when his dad came back with her after her found her a couple of blocks away.

It was that night that I had horrible, unspeakable thoughts about the precious bundle of joy God had gifted me with. And then I told that story to other moms and listened and laughed along as they told their own battle stories. I told the story to friends who didn’t have kids because, in hindsight, it wasn’t so bad and parts of it were actually kind of funny.

With Josie, it was and still is okay for me to sometimes answer “Not so great” or “She’s really been struggling lately” when I’m asked how she’s doing. With Moses, on the other hand, I quickly learned that saying something like seemed to cause people to become very uncomfortable. Sometimes it was like I could hear them thinking, “Oh no. She’s saying something negative about her child with Down syndrome…What do I do?” So I would quickly slap a smile on my face and say, “But overall, he’s great!” and then watch the relief spread over their bodies. Now it’s to the point where I just answer with a smile and “He’s great!” And that isn’t a lie. Moses is great. But I never had to follow up a “negative” statement with Josie. And overall, she’s always been great, too. It’s just that babies are hard sometimes, regardless of their chromosome count or type of needs.

Sometimes when I’m asked “How’s Moses doing?”, it seems like there’s an underlying curiosity of what it’s like to have a baby with Down syndrome.

From about birth to 4 or 5 months, it really didn’t seem like Moses was that different from how Josie was as a baby. At that point in a baby’s life, days are pretty much spent eating, sleeping, pooping, and taking in the world around him. That was my experience with both Josie and Moses. It was probably around that 6 month mark that I did start to notice some of the physical and cognitive delays.  Right now Moses is almost 18 months old and is doing what Josie was able to do when she was about half his age. He has physical therapy once a week and occupational therapy and speech twice a month. He could probably crawl on his hands and knees if he wanted to, but army crawling gets him where he wants go and he’s fast. His arms and shoulders are weak, but he gets better and better at pulling himself up to standing every day. Last night he stood at at the coffee table in the basement for about 3 minutes straight. By the last minute, his little legs were shaking but he stayed upright until they just couldn’t hold him up anymore. He “talks” a lot and it sounds like he says “Dada” and “Mama”, but it’s not intentional where he’ll look at us and say it. He knows the sign for “no more” and it really sounds like he’s trying to verbally say it, too. He can do the sign for “more”, or at least clap his hands together, but apparently it’s not as fun as signing “no more” so he doesn’t do it as often. He will wave “hi” and “bye” pretty consistently now, and he’s getting to the point that when I say “Give me a kiss” he comes at my cheek with an open mouth. He can stack toys and knock them down like a boss. He can draw a smile from even the sourest soul.

For me one of the things that’s hardest for me as a parent of a child with Down syndrome is that I feel like I have to really censor what I say in response to questions about it. Or feel like I can’t talk about his delays without drawing looks of criticism or pity or panic. I just want to have a normal conversation about the normal struggles of having a normal child with Down syndrome. This is our normal and I’d like to be able to talk about and not have to wait for my super secret meetings with other parents of kids with Down syndrome because they’re not scared to say “Yep, that sucks” or “I know, isn’t that so frustrating?” before ending the conversation with the acknowledgement that overall, we have pretty amazing little human beings.

 

 

A couple of Sundays ago after church, an older woman stopped me as we were leaving and said to me, “Please don’t take offense to this. I mean this in the best way possible, I really do. Thank you for making the decision you did about your baby…I will keep him and your family in my prayers.” Talk about tears springing right into my eyeballs. I smiled and said, “Thank you so much. I really appreciate that.” Tyson had walked a few feet away with the kids and was talking to some other people. I walked over to join them, not hearing a word of what was being said. I looked back and saw the woman and her husband getting ready to leave and walked back over and asked her, “Thank you again so much. Can I give you a hug?” She opened her arms and gave me a big hug and kissed my cheek and said, “You made a wonderful decision and I am thankful for you and your husband. I will keep you in my prayers.”

When we got in the party wagon (aka minivan) to go home, Tyson asked me who that woman was. I told him I didn’t know and told him what she had said to me. He gave me a confused look and asked, “Why would she say that to you?”

The more I thought about her words that day, I had so many different thoughts and emotions running through my mind, but the one that stuck with me the most was this: How sad I was that my child is one that many parents decide not to keep because of what that extra chromosome might bring.

I get it. It’s scary to hear that your baby is going to have Down syndrome. For me, it was mostly because I didn’t know what it was going to mean for my baby, and as far as I knew, I wasn’t going to be able to anything about it. There were no magic vitamins or medications, no corrective surgeries, no therapies that would make my baby “normal”. Sure, there were books and stories and websites and blogs and parents that told of the joys of having a child with Down syndrome. Not to mention my personal experiences with people with Down syndrome that were wonderful. It was just that there were also the books and websites and blogs and parents that told of the hardships of having a child with Down syndrome. And those sources are LOUD. They can be much louder than the positive ones.

Here I am, 17 months later, and I am able to shout from the top of my lungs how amazing it is to have Moses. Seriously, y’all…he is amazing. He has THE BEST smile. Sometimes it’s like it’s about to take over his entire face. And his laugh. There is nothing better than the sound of his belly laugh followed by a literal squeal of delight. He army crawls wherever he wants, usually straight for something he’s not supposed to have, to somewhere he’s not supposed to go, or to wherever I am at that moment, and he is fast. Lately, he’s been doing this move where he crawls, stops, and then turns to the side and bends his top leg over his bottom leg. We call it his “Tom Selleck” pose. He makes the cutest-ever “stinker face” where he scrunches up his nose and flips his bottom lip over his top lip. He can’t even help himself when music starts playing…he just has to dance! Bath time is now spent with him pulling himself up to stand only to let himself plop back down and make the biggest splash possible. He shovels in the food he likes faster than we can get it on the tray and throws the food he doesn’t want off his tray like it’s hot. Did I mention that he loves Josie? When Josie is around, his whole world is complete.

Does this sound like a kid you know? Probably because in so many ways, Moses is just like any other baby growing up. I have so many similar memories of Josie as a baby. Is he growing up at a different pace? Yes. But like a dad told me this fall at the Step Up for Down Syndrome Walk, “It’s like we get to have them as babies for longer.” How many times have you heard a parent say or said yourself, “They grow up so fast.” I guess one of the perks of that extra chromosome is that they grow up a little slower. And you know what? I’m not complaining.

Another parent at the Walk told me that when he and his wife found out their baby had Down syndrome, they met with a “genetic counselor” who told them that they should abort the baby because it would never be anything more than a walking vegetable that wouldn’t be able to love. I’d love to meet that “genetic counselor” and introduce her to one of the most vibrant, loving little girls I’ve ever met.

Just like with any other kid, no two children with Down syndrome are exactly alike. I know that my experiences with Moses are not the same as all other parents with children with Down syndrome. And just like with any other kid, I’m also not saying that raising Moses is always walk in the park. Just as with raising any child, there are rocky paths, there are mountain paths, and there are those swinging narrow footbridges across a raging river. But man, whatever the path, it’s worth walking with and for him. And I know I’m not alone in saying that. According to a column by Marc Thiessen in the Southeast Missourian last week, Boston’s Children’s Hospital conducted surveys and found that “only 4 percent of parents regretted having their Down syndrome child.” (March 11, 2018). Now, I’m no mathematician, but I’m figuring that means that 96% of parents don’t regret having a child with Down syndrome. I can’t speak for any of those parents, but I can speak for myself when I say I 110% do not regret having a child that brings so much pure joy to my life.

I pray with all my heart that more and more parents will open their hearts to the amazing joy a child with an extra chromosome can bring. And if you happen to see one of those parents, please say a prayer of thanks that they made the decision they did about their baby.

Putting your foot in your mouth:  “To say something something foolish, tactless, or offensive – usually without meaning to.” (idioms.thefreedictionary.com) I’ve done this way more times that I care to admit. Sometimes it’s a minor, harmless comment. Other times, it’s exactly the opposite. I’ve done both, for sure.

Like the definition says, the person making the statement usually doesn’t know that it’s going to be offensive. They may be able to figure it out by the look on a person’s face, being told later, or finding out some other way. However, the person it offends knows right away. And that person has a choice – to say something or to stay quiet.

When I was pregnant with Moses, I had to go to to physical therapy because my SI joint slipped out of place. The physical therapists I worked with were great and quickly got me back to being able to walk as normally as an 8 month pregnant woman can. During one session, one of the therapists asked me if I had a name picked out for the baby. I told her that if it was a boy, we had it narrowed down to 2 or 3, but if it ended up being a girl, we had no idea what the name would be. At this point, the therapist said, “Whatever you do, if it’s a girl, don’t make her middle name Grace.” She then went on to inform me about how many little girls these days have the middle name Grace. As she gave her informational spiel and stretched my leg, I laid there and wondered if I should tell her that my daughter’s middle name is Grace. In the end, I decided not to because it really wasn’t a big deal to me if this person I barely knew approves of the middle name I gave my child.

A few weeks ago, I saw a person that I haven’t seen in over a year. We exchanged pleasantries and she commented on how much Josie had grown in the past year. She asked me to remind her if I had another child, and I told her yes, that Moses was a little over a year old. Talk turned to hysterectomies and vasectomies (you know, the fun topics of conversation).  She then started talking about how when women start to get older, they have to “think of certain things before they decide to have another baby…” At this point, I went on high alert. In my mind I was thinking, “Please don’t say it, please don’t say it” and then thinking, “What do I do if she says it? Do I say something or let it go?”. Sure enough, she said it.  She opened her mouth and put her foot right in it. “You know, they have to think about the baby. It could have Down syndrome or…” At that point I interrupted and said, “Moses has Down syndrome.”

Here’s the thing. I really wasn’t offended by her statement. I was sad. I was sad that there are still people that would let that thought possibly keep them from trying to have another baby. I was sad that there are still people that would let that thought lead them to talk someone out of trying to have another baby.

Yes, babies with Down syndrome come with challenges. So do babies with other birth defects. So do babies with everything perfectly formed and in place. The challenges may be different with a child with Down syndrome or other disabilities, but the joy and love they bring is absolutely the same as any other baby. What I told the woman who made the statement is what I truly believe in my heart. I said, “I believe that most moms and dads choose to have a baby so they can love it no matter what it has or doesn’t have.” I pray that one day the possibility of having a baby with Down syndrome will not keep a couple from trying to have a baby at any age. I pray that one day getting the news that an unborn child has Down syndrome will be no more disappointing than finding out that the baby is a boy when the parents were hoping for a girl. I pray that everyone embraces the joy and love that a child like Moses brings.