The “Risk” of Having a Child With Down Syndrome

This is the response my best friend wrote yesterday:

Screenshot 2018-06-25 at 3.06.28 PM

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

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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.]

 

To Parent or Not to Parent…

Some guys don’t think they want to be a dad. Maybe it’s because they’re not sure they have what it takes to be a parent…the time, the attention, the patience, the commitment. Maybe it’s because they’re not sure they want to give the time, the attention, the patience, the commitment. To be honest, those were all the reasons I didn’t want to be a mom until I became one.

When we were dating, Tyson and I discussed our shared view on not having kids. We were both older (like real old…I was 29, he was 33) and very set in our independent ways. Kids did not fit in the vision we had for our future together of basically continuing doing whatever we wanted, whenever we wanted.

Fast-forward 7 years and 2 kids later. This man was meant to be a dad. I know there are things that he misses about being kid-free, but when watching him with his children it’s easy to see he was made to be a dad.

Being a dad to a strong-willed, independent, opinionated little girl is not for the faint of heart. Tyson was made to be Josie’s Daddy. He is firm when he needs to be and the biggest pushover the rest of the time. When it comes to putting the kids to bed, Tyson is the parent that actually enforces a consistent, appropriate bedtime. However, as soon as that little girl comes walking down the hallway wanting to cuddle with Daddy and watch the football or basketball game with him, the word “No” is missing from his vocabulary.

Then there’s Moses. If there was ever a man designed to be a dad to a child with special needs, it was Tyson. Not because he works him overtime in his therapy or because he dismisses the fact that he has Down syndrome. It’s because Tyson looks at Moses and sees his son for who he is and just simply loves him. He expects out of Moses what he knows he can do and pushes him just the right amount. Tyson makes him do the correct signs for “eat” and “drink” and “thank you” during meals before he gives him something to eat or drink. Me? All Moses has to do is look at me, smile; and sign “more” and I’ll give him as many crackers as his little heart and belly desires. You don’t want to sign “all done”? Not a problem, baby boy!

It wasn’t on my mind at the time, but when I married Tyson, I married the perfect father for our children. He’s going to shape Josie into a well-rounded, respectful young woman and teach her what it looks like for a man to love and respect his partner in life. He’s going to do whatever it is that Moses will need to reach his full potential and be there for him every step of the way.

As for me, he’s going to fill my days with joy and happiness as I watch him be the best Daddy to our children that he can be.

He’s All Mine

I knew I was going to marry Tyson Moyers within a month of meeting him. From the get-go, it was just different with him, and by different I mean it was right. With Tyson there were no games, no wait-three-days-before-calling-her, no sleepless nights wondering what I did for him to just stop texting me. He liked me and he let me know it.

Because this was waaayyy different from what I had experienced in the decade before I met him, I was a little hesitant at first to trust that what I was seeing in him was real. It didn’t take me long to learn that Tyson Moyers was genuinely a good man. With him I could be myself without worrying if I was funny enough or smart enough or pretty enough or intriguing enough. He made me feel like I was simply enough by just being me. I had finally found my Prince Charming, and I was going to marry him.

Being married was the one thing I had wanted most after college. To me, marriage meant security and stability, two things that I craved after the roller coaster of my college years. Don’t get me wrong, I had a blast in college. I loved being out of the fishbowl of my hometown, meeting new people, and just being responsible for taking care of myself. However, the lifestyle I was leading was very superficial and after a while I wanted something that was real and meaningful. In my mind, I was going to find that in marriage.

Dating Tyson was fun and exciting yet comfortable and secure. It was what I wanted for the rest of my life. When the weekend of our one-year anniversary rolled around, Tyson told me he was going to take me to dinner at a nice restaurant and then we were going to go back to the place where we were introduced. I was ecstatic. I was 99% confident that he had figured out he should marry me and that the proposal was going to happen on this romantic date he had planned.

It didn’t. I was pissed. I went to church the next morning and asked God to give me more patience since Tyson clearly wasn’t on my time schedule. I went back to his house to get ready to go to the lake and proceeded to pout and give so much attitude that he suggested I not go. Although that was tempting because I didn’t like him at all at the moment, I went to bathroom, had a good cry, then went outside and got in the Jeep. I started talking to him again about halfway to the lake, and by the time we got there I had talked myself into being okay with having to wait a little longer to get engaged.

About an hour later, he proposed to me out on the lake at the spot where we had our first kiss. I know I should’ve felt more remorse for my poor behavior that morning, but I was too busy being the happiest woman in the world.

I had finally found my match. The person that would both accept me and challenge me. The person that would be my rock in my hard times. The person that would encourage me and support me when facing life’s changes and challenges. The person who would put my happiness at the top of his list of priorities. I had finally found the person who would be for me what I would also strive to be for him.

Today marks our 7th anniversary. Has being married been all that I thought it would be? Yes and no. No, I didn’t think it would take as much work as it does to keep it on track. But yes, it has given me that sense of security and stability. Yes, life with him is real and it is meaningful. Yes, I still feel like I’m enough for him. Yes, through all the ups and downs we’ve encountered, Tyson remains my rock, my encourager, my supporter, my challenger, and best of all, my husband. And he’s all mine.

Show Mo Love – Step Up for Down Syndrome

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.

“Because He’s My Best Friend”

https://www.cbsnews.com/news/rachel-newberry-ben-robinson-promposal-burnsville-north-carolina/

This. Over the years of being on social media, I’ve seen videos and stories of “typical” kids asking peers with special needs to events like prom. This one seems a little different, though, because the reason the young lady asked her friend to prom is simply because he’s her best friend.

One of my many prayers for my children is that they are loved for who they are, not just a piece of who they are. I also pray that they look beneath the surface with others, too.

Reflecting on “Finding Out”

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.

Your Attention, Please

sweetjosie.jpg[Note: If you haven’t read the book Wonder by R.J. Palacio or seen the movie, I strongly urge you to fix that.]

In the book and movie Wonder, Auggie’s sister Via feels lost in the shuffle of his world. Seeing her struggle with loving her brother and wanting to support him but at the same time feeling angry, hurt, and resentful of the her anger and hurt of most of everyone’s attention being on him and his needs. Yes, Auggie has a medical condition that has made things different and harder for him since the moment he was born. Yes, Auggie is embarking on a very new, challenging adventure in going to school. But that doesn’t mean that his sister is immune to the struggles that everyday life brings. She still wants and needs attention from her parents and friends.

When I was watching the movie a few months ago and it got to the part where Via and her mom hug after her performance in the school play, I lost it. As a mom, I know that one child is not intentionally given less attention than another. But it happens.

When I was pregnant with Moses, I remember coming across a blog written by a mother who had two children, but the blog was only about one of them. Perhaps it’s due to my own middle-child syndrome (it’s a real thing, just ask me), but I am very sensitive to children being left out. Do I think that mother who writes that blog loves her other child any less than the one that the blog is about? No. As a mom of two children and being one of three children in my own family, I know good and well that a mother, or father, does not love any child more than another. A parent may love each of her children differently, but the depth of love is the same for each child.

So when I saw that blog that focused only on the child with Down syndrome, it really struck a nerve with me. It also got me thinking about how I would balance having not just two children, but one that has typical needs and one that has different, special needs. How would I make sure that Josie didn’t get lost in the shuffle of this new world we were about to enter? 

As with many other things in life, it’s easier to place expectations and blame on others. That’s what I have been doing for almost 19 months now – expecting others to help me find that balance by asking about Josie and commenting on what an amazing, special little girl she is. Thankfully, I can honestly say that she really does get as much attention from others as Moses does. My family and friends especially do an amazing job of loving on her as much as they do Moses. Even so, there have been times I’ve found myself getting upset when I feel like she’s getting less attention from others. For example, when I share a picture or story of her on Instagram or Facebook and it doesn’t get as many likes or comments as one of Moses (I’m seriously rolling my eyes at myself as I type this, but at the same time, this is the reality of the world of social media), I get upset because, in my humble motherly opinion, she deserves just as much love from the social media world as him (because she does.)

But then the other night, it finally hit me that it’s not at all about the attention she gets from others. No, it’s all about the attention she gets from me.

In our daily life, it’s really not much of a struggle to give Josie enough attention because, quite frankly, she has a big personality that demands attention. Sometimes very loudly, sometimes very inappropriately. One night, she looked at me in a very disapproving way and told me I needed to “drop that attitude” after I told her to eat her supper. She can make us all laugh with her singing, dancing, stories, and sass.

It’s more of my mental and emotional attention that I fear she’s getting short-changed in, much like Via did in Wonder. For me, one of the things I’ve learned about myself is that it is easy to get caught up in that world of Down syndrome because, well, it’s different. I think about Moses and how to navigate his unique world a lot. There are a ton of unknowns and uncertainties. With Josie, there are definitely unknowns and uncertainties, but they have been and will likely continue to be fairly “typical” and, quite frankly, easier to deal with. I didn’t really have to teach her how to crawl or pull herself up to stand. I didn’t have to wonder when she would start talking because it seems like she figured it out on her own one day and hasn’t stopped since. I don’t do extra reading on how to survive a threenager or prep myself for the roller coaster a 4-year-old will likely bring (although I probably should). With her, there is a lot of “typical” trial and error, in part because she’s my firstborn and I have no clue what I’m doing, but I don’t constantly second-guess myself if I’m doing everything I can to help her reach her fullest potential. I don’t worry (too much) that my errors will prevent her from enjoying many achievements and accomplishments in life. I know that girl of mine will be successful despite me. I just pray that she either forgets my mistakes or is able to find a good counselor to help her work through how I screwed her up because I gave more attention to her little brother than to her.

Since Moses was born, he has received more of my attention whether it be because of additional doctors visits, scheduling weekly therapies, health issues and having surgery, or simply because he’s super cute. With Moses, there there is more reading and learning because I feel like there is less room for trial and error. I regularly second-guess myself about if I’m doing all I can to help him reach his fullest potential. The last thing I ever want is for him to be more at a disadvantage that he may already be at because he does have that extra chromosome that causes physical and intellectual differences and challenges. There is the mental and emotional struggle to find the balance between recognizing he is different because of Down syndrome and not letting it define him.

The conclusion I’ve come to is that I don’t want to use Down syndrome as an excuse for Josie getting less of my attention, and that’s what it feels like I’ve been doing. The last thing I ever want is for her to think that she’s less important, less special, less unique than her brother. Because she’s just as important, just as special, and just as unique as he is. In the end, I know that my children need different things from me because they are their own different, unique human beings. I just pray that I can navigate both of their worlds successfully and give them both the attention and love they need and deserve.

Stigmas, Stereotypes, and Tattoos

A few months ago, I came across an article titled “Parents of Kids with Down Syndrome Are Getting This Tattoo“. The article told the tale of a group of 20 moms that had children with Down syndrome spending a weekend together bonding over their shared experiences and ultimately deciding to get a tattoo of three arrows to symbolize the three copies of the 21st chromosome and how like arrows, “…we rise up and move forward…we fly the highest after we have been pulled back and stretched, sometimes more than we think we can bear.” Those 20 women have since inspired hundreds of parents and family members to get the tattoo in support of Down syndrome and one another.

Within a couple of weeks, I had received multiple texts and messages sharing the article with me. Yes, I had already considered getting the tattoo after reading the article the first time but knowing that tattoos are permanent and still carry stigmas and stereotypes in the eyes of some, I didn’t know if it was really a bandwagon I wanted to jump on. Then I was tagged in a post on the Facebook by another mom asking if I was in. I could blame my public answer of “Yes!” on the couple glasses of wine I had enjoyed that afternoon, but the fact is, I knew I really wanted that tattoo.

The term “advocate” really didn’t enter my vocabulary until I was getting my Masters to be a school counselor. That’s when I learned that part of my role was to advocate for myself and the school counseling program because there is still some confusion and misunderstanding about what a school counselor is and should be (hint: a school counselor is not an administrator nor a secretary/administrative assistant…but that’s another post).

When I learned I would be most likely be having a baby with Down syndrome, that word started popping up again but I really didn’t see myself as needing to be a very vocal advocate for Down syndrome because hadn’t so many people long before me already done a great job of it? I mean, my mom told me that when she was growing up, kids with Down syndrome were shipped off to institutions because it was believed that there was no need for them to go to school. From my experience working in a public elementary school, I knew that was definitely no longer the case. Mongoloid is no longer a term used for a person with Down syndrome, and I don’t hear the “R-word” like I did when I was younger. Nope, all I was going to need to concern myself with was loving and taking care of my baby the best I could no matter if he or she had Down syndrome or not.

HAHAHA!!!! The joke is most definitely on me! Not only have I advocated for Moses since the day he was born, but I’ve also learned how important advocacy still is in the Down syndrome world. Just like there are negative stigmas and stereotypes that surround people with tattoos, there are still negative stigmas and stereotypes that surround people with Down syndrome. While there has been a tremendous amount of work that taken place to get society to view individuals with Down syndrome as people whose lives are worthwhile (because they are), there is still a sense of sadness, anger and fear that ripples through parents of children with Down syndrome when we are reminded that  there are people like Ruth Marcus who would publish a column just five days before World Down Syndrome Day in support of aborting babies with Down syndrome. And that there are countries allegedly trying to eliminate Down syndrome from their entire population. When there are doctors and genetic counselors in our own country that paint a picture of despair upon delivering the news that prenatal screening indicates Down syndrome and gently remind the expectant mother that there are “options”.

So yes, I got the tattoo. I love it. I am proud of it. I am proud to get to explain it to others what it means. I’m excited at the thought of one day seeing it on someone else that I have never met in my life and know that we’ll be able to proudly smile at each other knowing we’re in the same club. I am proud to know that I am doing everything I can to further remove the negative stigmas and stereotypes that surround Down syndrome. And who knows? Maybe I’ll even be and unknowing advocate for the tattoos, too.

Watch What You Say

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.

 

 

What Exactly Does That Extra Chromosome Bring?

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.