Choose Your Focus

On the way home from school today, Josie suddenly asked me, “Would it be hard if I had a disability, too?”

Since I was completely caught off-guard, I asked her, “What do you mean?”

She answered me, “Would it be hard if I had a disability like Moses?”

I thought for a few seconds and gave her my honest answer: “No, I don’t think it would be hard. We would do whatever it was that you needed to live your best life. And we would love you just like we love you right now.”

At that point, we had pulled into the garage. She got out and went inside. By the time I got Moses out of his car seat, gathered all of my stuff, and got inside, the conversation was clearly over. She had already unpacked her backpack, gotten herself a snack, and turned on the TV.

To be honest, I didn’t think anything else about the conversation, either, as I started putting my things away, unloading the dishwasher, and mentally preparing myself to clean the shower in my bathroom. (I would rather dust all day long than clean that shower.)

A few hours later, Josie was across the street playing with her friend, and Moses and I took Opal for a walk. Not long into the walk, he reached over and grabbed my hand. Every few steps he would stop, squat down, count to three, and then he would jump up and I would pull a little to help him go even higher. He loves this game and the laughs we both get out of it are the best.

After a while, he stopped jumping and we just walked hand-in-hand. At one point, I looked down at him and he looked up at me and smiled. It was one of those smiles that shines of pure happiness and love. One of those smiles that catches your breath and your heart.

That’s when I thought back to the question Josie had asked me earlier. And I thought to myself, “This isn’t hard.”

Yes, having a child with a disability comes with challenges. And if I focused on the challenges and dwelled on them day-after-day, then I would surely say it’s hard to have a child with a disability.

However, when I watch my son laugh and play and enjoy this life he’s been given, I find it difficult to see the hard. If he’s not dwelling on the challenges he has, then why should I? What good would that do him? What good would that do me?

There are times to focus on the challenges. When they are having a negative impact on him, they need to be addressed. There are some instances when it is in his best interest to be proactive and attempt to address potential challenges before they arise.

I do the same thing for my child who doesn’t have a disability.

But that’s not where I choose to keep my focus.

Ever since I found out my child was going to have Down syndrome, it has been important for me to remember that I have a choice about how I look at things and what I focus on. And I choose to look at my son and see the strength and determination and joy and love that he has. I choose to look for the solutions to the challenges he faces and focus on implementing them. I choose to advocate for what will help live his best life rather than accept certain things as-is.

There are times that it would be easier to focus on the challenges. To focus on the hard. But if he’s not choosing to do that, then why should I? Why should anyone?

I would much rather focus on that smile that catches my heart.

What do you choose to focus on?

The Perfect Tea Party

This evening after the kids and I had gotten home for the day, Josie went across the street to play with a friend, Moses went downstairs to the basement, and I started putting away dirty dishes and mentally figuring out what needed to get done this evening.

I heard Moses coming up the stairs carrying something that was banging around. When he got to the top and walked past where I was standing in the kitchen, I noticed it was the little case that holds Josie’s tea set. Usually he’ll just bring up one or two cups and the teapot, and he’ll fill up the teapot with water and then pour it into the cups.

He’s been doing this for a couple of months, and his process is pretty cute: He walks around to the back of the sink to turn on the water because he can reach the handle from there without a step. Then he goes back around to the front of the sink where he has a step set up and he fills up the teapot. Then he walks around again to the back of the sink to turn the water off. (Yes, I realize he’s wasting water, and for these purposes, I’m totally okay with that.)

So I really didn’t think much of him bringing up the entire case, nor when I heard the water being turned on and off. At this point I had gone into my bedroom to change clothes and sit on my bed to scroll through Instagram for a minute (or 5).

The next thing I knew, Moses came into the room saying, “It’s ready!” He walked over, grabbed my hand, and led me out of the room. I asked him, “What’s ready? The water?” He nodded and said, “Uh huh.” He took me into the dining room where I saw that he had not just poured water for the two of us, he had put a cup at each chair and had poured water in all of them.

Our real-life dining room table. Almost always full of clutter and never Insta-ready, and tonight perfectly set with eight teacups full of water.

He was so proud of himself as he pulled out a chair and patted it for me to sit down. He was so annoyed with me as I took a picture to capture this sweet result of his thoughtful brain.

I took a drink of the delicious water he had poured, and then he took the cup from me and finished the rest.

Then he walked away, satisfied with his work and that I had enjoyed it, and came back with his Kindle to let me know he was done with me.

I thought my heart would burst thinking about the thought he put into this endeavor.

And I couldn’t help but to think about the doctors who told parents to send their babies with Down syndrome to institutions where they would be kept “comfortable” as they would never be able to live a quality life according to their standards. Or the parents that listened and missed out on knowing the beautiful human that was gifted to them.

I can’t help but to think of the doctors even today that find no value in a baby with the wrong number of chromosomes. Or the parents who take the advice of those doctors, and even friends and family members, and abort a baby that could have Down syndrome and hope for a “normal” baby next time.

My heart hurts for those perfect babies and children that never got a chance to show exactly how amazing they were and just what they really were capable of doing. Who never got a chance to let their light shine. I hate it for the parents who missed out on the perfect tea party because of misconceptions and stereotypes that still plague people with Down syndrome.

As I walked around the table wiping up the spilled water around the cups so thoughtfully placed at each seat, I couldn’t wipe the smile off my face because here is a little boy that not too long ago would’ve been assumed to be able to do little more that breathe on his own, planning and setting up a tea party anyone would be lucky to get to join.

The Magic of Acceptance and Inclusion

A few weeks ago, my parents gave my brother, sister, me, and our families the gift of a Disney cruise to Alaska. There were so many amazing things about the entire trip – especially getting to have our entire family together for a week. However, there was one experience that stood out for me and I will never forget it.

On the third day of the cruise, the ship docked in Skagway, Alaska. We spent the morning driving up into the mountains and enjoying seeing the beauty of the mountains, lakes, and waterfalls that surrounded us. And by we I mean Tyson and me. Josie and Moses were bored to tears.

That afternoon, Tyson and Josie went ziplining so I took Moses back to the ship. We went up to the pool deck where there was a place for him to get some chicken strips and for me to get an adult beverage.

While we were sitting at our table, one of the ship’s lifeguards walked by. He saw Moses and said, “Hey buddy! How are you?”

After a morning of sitting in a vehicle bored out of his mind, Moses wasn’t in the best of moods, so he responded with a very firm, “No.”

Undeterred, the lifeguard continued to try to talk to Moses and get him to engage with him. Also undeterred, Moses refused his efforts.

The lifeguard said, “What’s your name?” (Side note – That he asked Moses directly what his name was instead of asking me earned this guy a gold star in my book. He did not assume that Moses couldn’t or wouldn’t answer him. It was awesome.)

When Moses didn’t answer him, I said, “This is Moses. He’s had a long morning and is obviously pretty cranky.”

The lifeguard laughed and said, “Give me 10 minutes and I’ll win him over.”

Well, it had already been at least 3 minutes, so I figured if this guy wanted to be rejected for another 7, that was his choice.

He gave it a good effort for a few more minutes and then said, “Okay. I’ll leave you alone now, Moses.”

As he started to walk away, I said, “Moses, do you want to tell him ‘bye’?” At that, Moses turned and gave the lifeguard a big wave and “Bye!”

A smile lit up the lifeguard’s face and he said, “Yes! I knew I could do it!” He came back over and asked for a high-five and a fist bump, both of which Moses gladly gave him.

Four days later, we were at sea on our way back to Vancouver. Josie had been waiting all week to go down the big waterslide on the ship, so she got her swimsuit on and went up the stairs to the top of the ship and where the waterslide started. There was a monitor on the deck where we could see when it was her turn so we could be ready to watch her as she came down the slide. Tyson and Moses missed her first run, but they were there for the second. When we saw that she was next, Tyson took Moses over to where he could watch her come down.

When she did, we all clapped and cheered for her. The lifeguard on duty turned and said, “Moses! Hey buddy! Do you want to do it?”

I’ll be honest, I had totally forgotten about the lifeguard and his encounter with Moses 4 days before. But he hadn’t. He even remembered his name.

Moses answered with a big nod of his head and a clear “Yes!”

Tyson and I looked at each other. Moses loves to slide. And he’s gone down some pretty big ones. But none as big and as long as this one and a waterslide at that.

I asked Moses, “You want to go down the waterslide?”

He again said, “Yes!”

Tyson looked at the lifeguard and asked, “Can he go down it? Is he old enough?”

The lifeguard said, “Sure he can go down it! It doesn’t matter the age. He just has to be 36″ tall, which he is, so he can do it.”

So I ran down to our room, grabbed Moses’ swimsuit, and made my way back up to the 9th deck as quickly as possible. Tyson got Moses changed into his swimsuit and then took him over to where the lifeguard was standing. He told him that he could walk up to the top with him or he could go with Josie, who was standing right there waiting. He said, “Either way, I’ll be right here when he comes down to help him if he needs it. He’ll be fine.”

With that, Josie took Moses’ hand and led the way up the stairs to the top of the slide. Tyson and I stood watching the monitor anxiously waiting to see the top of Moses’ head. A couple of minutes later, there he was, impatiently waiting his turn with Josie doing her best to keep him in line.

When it was finally his turn, he stepped over the lip of the slide entrance, sat down, and pushed himself forward. No hesitation. No fear.

When he came sliding down into view, he was backwards and on his belly. He hit the water at the end, sat up, and was met with cheers from my parents, my sister, Tyson, me, and the lifeguard. Just as he promised, the lifeguard was right there waiting for Moses. He clapped for Moses, gave him two big thumbs up, and high-fived him as he walked to the end. As Moses got out, the first thing he did was say, “Again!”

Sliding down to his own personal cheering section.
Hi-five from the most amazing lifeguard ever.

I lost count of how many times Moses went down the waterslide that afternoon.

If it hadn’t been for that lifeguard, I don’t know that Moses would have gone down that waterslide. It wouldn’t have been because he didn’t want to or because he couldn’t. It would’ve been because Tyson and I would have been too nervous to let him do it. That waterslide was really big and there wasn’t the option of one of us going down with him.

Some people may be thinking, “That’s the magic of Disney.”

I disagree.

This moment was brought to us by the magic of an individual practicing acceptance and inclusion. The magic of looking past stereotypes and focusing on abilities instead of limitations. The magic of seeing a person for who he is rather than his diagnosis.

There is no doubt in my mind that God made sure that our paths crossed with that lifeguard. He knew that some of us, including myself, needed the reminder that it’s not up to us to decide what Moses is or is not capable of. Moses can do that just fine on his own.

Us or Them

I wonder if other parents of kids with developmental disabilities ever feel the way I felt tonight. 

Moses’ IEP meeting is coming up to determine his placement going into kindergarten. I’ve already advocated for him to be able to go to summer school (or at least give it a try), and I’ve been laying the groundwork for him to be in the general education classroom as much as possible for months now. There’s so much evidence in support of the benefits of inclusion in education – academically and socially for both kids with and without disabilities – that I feel like there’s no reason for him to ever not be in the general education classroom. 

And yet I know that the biggest barrier that we will face in achieving that is the mindset that because children with disabilities don’t always learn at the same pace and/or in the same way, then they should learn in a separate setting. It’s touted as being what’s best for them, although I haven’t been able to find any research to support that claim. 

Anyone who knows Moses knows that he has the ability to light up a room. He has a beautiful, playful personality and is the most determined little boy I have ever met. His brain is a sponge soaking up all the things that are going to help him lead his best, most successful life. He has so many gifts that he brings to this world and it seems like he’s wanted. For the most part.

Until it comes to education. Then it’s like he’s already been weighed and measured and has been found wanting based on his medical diagnosis and evaluation results. 

Nevermind that he has been absolutely thriving in his general education early childhood classroom. But yet now that he’s going into kindergarten, it’s being doubted that he can continue to do that. 

I think the hardest part for me is when I feel like he’s being doubted by people who know him and/or are in education and are supposed to support inclusion rather than integration or segregation. It’s hard when I feel like I have to advocate for inclusion with people who know Moses and how amazing he is, and yet I still find myself having to explain the value of him being in the general education classroom 100% of the time. 

Why do I have to explain that he can and wants to learn? Why do I have to explain that he can and wants to have friends? Why do I have to explain that he can and wants to be part of the classroom community? 

Why do I have to explain that as soon as he’s not allowed to be a part of the community that is built in the classroom within the 7 hours that they’re there from the first day of school until the last day of school, everything will change for him. He will at that moment go from being “one of us” to “one of them”. 

Tonight as I was laughing with Moses and just soaking up the joy he can exude, I suddenly had the thought, “Why do I want to share him with others so badly, especially when it comes to school? Why not just keep him all to myself?”

Part of me wants to say, “Fine. I’ll keep him to myself. I’ll teach him and explore with him and laugh with him. I’ll be the one to challenge him and encourage him and watch him experience success. I’ll be the one to help him realize how much he’s truly capable of in this life.”

But the other part of me knows that that is my exhaustion, frustration, and hurt talking. Advocating for inclusion is hard work and I’m learning that you don’t get to take breaks. Keeping him to myself might be easier, but it wouldn’t be fair to him or the people who would be missing out on getting to know him and to learn from him. 

Because the real kicker in all of this is that Moses has more to teach all of us than we could ever hope to teach him.

Which then begs the bigger question: Who would benefit more from inclusive classrooms? Us or them?

Stay Out of the Way

While we were at the playground this evening, Moses went over to a fairly tall, steep climbing wall. As he put his foot on the first step, I thought to myself, “I don’t think he can climb this.” Instead of going over to help him, though, I just stayed back out of the way and kept my mouth shut.

He went to step up on the second step, and then stopped and got off the wall. He ran back towards the slide he had been going down, but instead of stopping, he ran past it.

He ran to a shorter, less steep climbing wall on a different structure. And climbed right up it. It took him a little extra effort to pull himself up and over the top, but he did it.

So tonight’s parenting lesson brought to me by Moses was to stay out of the way. My job as his mom is not to decide what he is or is not able to do. My job is to give him the opportunity to try and support him in his efforts. If he needs help, he’ll ask for it. More often than not, however, he doesn’t need my help.

How many times do we as parents get in the way of our kids showing us, and themselves, what they can do because we decide for them whether or not they can do something? Or decide that they need help because they’re not doing it quickly or easily enough, or because it’s not the “right” (i.e. our) way?

Our kids are capable of amazing things. And they’ll be happy to show us if we’ll just stay out of their way.

Show Mo Love

A couple of months ago, I was listening to an episode of Brené Brown’s podcast Unlocking Us titled “The Body is Not an Apology” . I was listening to it because it was about Sonya Renee Taylor’s concept of radical self-love, and I was hoping to find some more direction on how to keep improving my own body image (something I’ve been working on for decades). 

I was getting some good ideas and insight for myself, and then Brené and Sonya started talking about frozen chicken pot pies. And then the next thing I knew is that I was listening to Sonya explain to Brené, “I don’t want to be accepted. I want to be loved.”

At that moment, all I could think about was Moses. 

I don’t want Moses to be accepted. I want him to be loved. 

I don’t want Down syndrome to be accepted. I want it to be loved.

Don’t get me wrong…Moses is so loved by the people who know him. He radiates a certain combination of joy and mischievous and genuineness that is hard for people not to be drawn to and love. 

I feel like the challenge going forward is for this love to continue to grow and for it to spread so that as he gets older, he’s not just loved but also included in a way that isn’t out of obligation or pity.

So how is this type of love for Down syndrome going to be achieved? 

I feel like that’s where another thing that Sonya Renee Taylor talked about later on in the podcast comes in. She said that one of the steps in achieving radical self-love is to make peace with difference. When I heard that, I remember thinking, “Yes. Moses is different because he has Down syndrome. And that is not a bad thing.” 

However, in our society, difference is so often seen and labeled as bad. 

How else can it be explained that in the United States, an estimated 67% of babies with Down syndrome are aborted each year. Sadly, that number is even higher in other parts of the world. There are countless accounts of parents being encouraged by their doctors to terminate a pregnancy simply because early genetic testing indicates the baby has the presence of an extra chromosome.

Why? Because that difference in the chromosomal makeup of that little human being is bad. The differences it may cause medically, physically, cognitively are bad. 

That’s the message that is being sent the moment genetic testing indicates that a baby has Down syndrome and the doctor suggests abortion and hopefully the next baby will be “normal”. 

That’s the message that’s being conveyed when a person responds with “I’m sorry” to a pregnant mother who has just shared that the baby she’s carrying has (or likely has) Down syndrome. 

That’s the message that is being passed on when a mother encourages her own daughter who is in her 30s to not have another baby because it may have Down syndrome. 

Yes, a child born with any of the three types of Down syndrome will have differences about him or her, there is no doubt about that. 

But when I was pregnant with Moses, even before I knew he had Down syndrome, I knew that the baby I was carrying was going to be different from Josie. I knew that because every baby is different. Every child develops differently. Every child will grow at his or her own pace regardless of the timeline its parents set before it. Every child will grow to have different strengths and challenges. 

For example, Moses is hands down a stronger problem solver than Josie was at his age or ever in her life. When something is hard for her, her first inclination is to quit or get someone to do it for her. Moses, on the other hand, will patiently keep working to achieve whatever it is that he’s set his mind to at the moment. Does that make him good and her bad? Of course not. Their brains are wired differently in this regard and that’s okay. I’m at peace with that. 

What I believe needs to happen is for the rest of the world to be at peace with the fact that people with Down syndrome are different in some ways and just stop there. No assigning “good” or “bad” to those differences. Just be at peace that the differences that come with that extra copy of the 21st chromosome are just part of who they are. 

I want his general education Kindergarten teacher next year to love having him in the classroom. I want him or her to see the value of having him as part of that class regardless of if he’s able to learn the academic content at the same rate as most of his peers. I want him to be sitting in the middle of his classmates at lunch in the cafeteria and them including him in their interactions even if he might not be able to talk as clearly as they can. I want him to be invited to birthday parties and playdates because his presence is desired and appreciated by the other kids. 

And then in 25 years, I want for one of the women who was once a little girl in Moses’ kindergarten class to become an OB-GYN. And when she delivers the news to an expectant mother that genetic testing indicates her baby has Down syndrome, I want her to do so with a smile and reassurance that the baby is going to be amazing and wonderful, and that she will ensure that both the mother and baby get all of the best medical care and attention they need. 

I want for one of the men from Moses’ kindergarten class to hold his newborn baby that the doctor says has markers consistent with Down syndrome and be at peace knowing that his kid is going to be amazing and wonderful when the chromosomal test results confirm there is an extra copy of the 21st chromosome. 

I want for one of the kids from Moses’s kindergarten class to become a teacher and when a student walks in with those beautiful physical features of a child with Down syndrome, an automatic and genuine smile appears because that teacher knows this is going to be an amazing year in that classroom. 

I want for one of those kids from Moses’ kindergarten class to one day have a child in kindergarten who comes home and says, “There’s a student in my class who has Down syndrome.” And that parent will smile and be excited that their child is going to have the amazing experience of getting to know, learn with, and learn from a child that brings a little something extra to the classroom.

I want the world to be at peace with the differences that Down syndrome brings because it is in those differences that so much beauty and joy and most importantly, love, is found. 

This is the kind of radical love I want the world to have for Moses and all those with Down syndrome.

“‘Acceptance’ is an innate word. It is an inert word, it does not do anything, it stops there…it just lays there. I accept that. There’s nothing, literally. There’s nothing… It is a passive term. “Love” is an active term, it is a thing that makes you get up and do something, to change something, to shift. It creates its own momentum. I want for the world a love that changes shit, that’s what I want. I want us to love in a way that disrupts…Acceptance won’t get us there.”

-Sonya Renee Taylor

That Boy

Tonight at Josie’s soccer games, Moses decided he wanted to join a group of kids playing behind where we were sitting. Usually when we’re at her games, he wants to either play on the playground or watch Masha and the Bear or Peppa Pig on my phone.

This evening, however, he went over to where some kids were kicking some soccer balls around and tried to play with them. When they moved over to the empty soccer field next to where Josie was playing, he went with them. I stood in the middle so I could keep an eye on him and keep cheering her on.

When I took the picture of Moses in the middle of this group of kids, it was because I wanted to capture the moment of him just being a little boy playing with other kids. It was a beautiful scene to watch and I had a beautiful feeling in my heart from getting to watch my son running around like this, smiling and laughing with these other kids.

Moses, in the gray jacket, trying to play with the other kids.

For a lot of parents of kids with a disability, there is often a feeling of apprehension in situations like these. Are the other kids going to see my son as just another little boy wanting to play and include him? Or are they going to figure out that he’s ever so different and it’s enough to cause them to move away from him or even tell him he can’t play?

For a moment it seemed like he was being accepted and included.

And then the moment ended.

Just a moment or two after I took the picture, I started to realize that a couple of the older girls were getting annoyed with Moses. That really didn’t bother me because he was getting in their way in his attempt to play with them.

It was when he started trying to play with one of the little boys that looked to be around 1 1/2 – 2 years old that it was apparent that the moment was over and Moses’ presence was no longer going to be tolerated.

Here’s the thing – Moses loves babies and little kids. He does his best to be gentle, but he does still tend to cross some boundary lines when he wants to hug them and just love them. He has gotten so much better, but I don’t know that he’ll ever be able to resist the urge to at least give them a little pat.

It appeared that the little boy Moses was trying to play with was related to one of the older girls, and she felt like Moses was a threat to him. She came over to try to shield him from Moses. And Moses being Moses, he just tried to do a group hug.

I totally get being protective of a younger sibling or cousin or friend.

It was the way I heard her call Moses “that boy” to her friend that crushed my heart.

Again, I’ll admit that Moses crossed the personal boundary line when he got as physically close to the other little boy as possible with as much gentleness as he could muster.

The tone she used when she said “that boy” indicated he was bad.

Different.

Unwelcome.

As I walked over to remind Moses to be gentle, I also had it in my mind to try to introduce him to the other kids and be more actively present while they played.

But when I heard the way he was called “that boy” in that way, I choked back my tears, reminded him to be gentle, and then asked him if he wanted to go get his Kindle out of the van. He immediately said “Yes!” and began to walk with me away from the kids, completely unaware of what just happened.

This is one of the heartbreaking realities of having a child that is different.

Josie’s first game ended, and we moved to a different field for the next game. He sat in his chair for a little bit playing on his Kindle, and then he got up and wanted to run around.

As we were walking around the field, we saw a girl that I know but Moses had never met, and she had never really met Moses.

For the next forty minutes, she played with him. They played Ring Around the Rosy at least 1,000 times. He chased after her and she chased after him. They kicked a soccer ball around and then sat down to roll it back and forth. At one point, they were sitting on the ground pretending to be butterflies.

Rolling the soccer ball after taking a break from Ring Around the Rosy.

As I joined them for a few rounds of Ring Around the Rosy, I felt tears again when I looked at not only the huge smile on his face but also the genuine smile the girl gave him as she looked at him.

Yes, there are going to be those situations where the other kids are going to decide Moses is just too different, too “that boy”  for their liking.

There are also going to be those situations where the other kids see that boy, my boy, accept him for who he is, and include him in their play.

I am so thankful that on the same night that I had one of my greatest hopes for Moses crushed by one of my greatest fears for him, I had my hope restored by this girl who showed me that there really is reason for me to hope that Moses will find acceptance and inclusion in this world.

God’s Delight

Last Christmas, I was looking on Amazon for a couple of books for Josie and Moses when I came across one title “When God Made You” by Matthew Paul Turner. On the cover is a beautiful little girl who looks like she’s in the middle of a free fall. Her arms are spread wide, her eyes are closed, and she has a hint of a smile on her face. She looks like a little girls who is confident that she is safe and loved.

More than anything I want Josie to grow up knowing that she is so loved and that her dad and I do everything we can to keep her safe. (One of us would actually wrap her in bubble wrap and make her wear a helmet every day if he could.) Since Moses was born, I am very aware of the extra attention he sometimes requires, especially when it comes to his health and safety. Because I know Josie hears a lot of the conversations that center around him, I make an intentional effort to make sure she knows we care just as much about her being healthy and safe. When I saw this book, I thought it would be a great way to remind her not only of that but also what a beautiful child of God she is.

When we read this book for the first time, I wasn’t prepared to get choked up reading it. At least not for the reason I did.

The book starts out with exactly the kind of message I wanted Josie to hear:

You, you, when God made YOU, God made you all shiny and new.

An incredible you, a you all your own, a you unlike anyone else ever known.

The book continues to explain how perfectly and beautifully God created this little girl (and my little girl) to be exactly the way He wanted her to be.

And then a few more pages into the book, I read the words:

“You, you, when God sees you, God delights in what is and sees only what’s true.

That you – yes YOU – in all of your glory, bring color and rhythm and rhyme to God’s story.”

That’s when I felt a lump in my throat and tears in my eyes. Not because those words are true for Josie and Moses and every child God creates, which they absolutely are.

It was because those words are true for me, too.

Even though I’m a 40-year-old mother of two who feels tired, frustrated, and downright cranky more often than not, God sees ME.

And not only does he SEE me, He DELIGHTS in me!

I don’t know where along the road of life that I forgot that no matter how old I am or how cranky I may get sometimes, God knows the true me and loves me. And not only that, He delights in me!

There’s something about knowing that I can delight God simply by being the me He intended me to be – the same way my children delight me every day just by being themselves – that makes me feel lighter. That puts a smile on my face and warmth in my heart.

I have found that I do have to remind myself that the me He delights in is the me that He created me to be:

“…a giver who lives with all heart, soul, and mind.

A dreamer who dreams in big and small themes, one who keeps dreaming in journeys upstream.

A confident you, strong and brave, too.”

There’s something about being reminded of God’s delight, in addition to His love, that makes me want to be the best me I can be every single day. It helps me when I start to experience those all too familiar thoughts of self-doubt:

“Am I doing enough?”

“Am I too emotional?”

“Am I talking too much?”

“Is my laugh too loud?”

“Do people really like being around me?”

“Should I have kept those thoughts to myself?”

Knowing God made me with the exact personality traits He knew I would need to do His work, and that he finds it delightful when I am using them to do His work, gives me the strength and courage to push those thoughts away and keep going.

It seems like for some of us, as we get older (and possibly crankier), when we hear things like “children of God”, we think only of the chronologically young people. It does us so much good, though, to remember that no matter how old (or cranky) we get, we are always included in that phrase.

“‘Cause when God made you, somehow God knew, that the world needed someone exactly like you.”

Early Education in Down Syndrome

This week I got to Zoom with my 4th grade students during their Counseling time. It was so great to get to see their faces and hear their voices! We weren’t Zooming just so they could sing ‘Happy Birthday’ to me, though. We were Zooming so we could talk about Down syndrome.

October is Down Syndrome Awareness Month and it’s also the month my school district celebrates Disabilities Awareness Week. It’s one of my favorite weeks/months of the school year because I love getting to teach my kids that having a disability does not mean there is something wrong with a person. It means that there is something different with the way a person’s body or mind, or sometimes both, work. We learn about different types of disabilities while always keeping our focus on the fact that a person with a disability is a person that deserves to be treated with kindness and respect.

For each class I gave them a basic explanation of the chromosomes and the extra copy people with Down syndrome have, some of the differences that causes for their brain and body, and how much they are able to learn to do when given the chance. Then I asked if anyone had questions about Down syndrome.

The students in the class I Zoomed with on Tuesday morning were either still half asleep, bored to tears, and/or experts on Down syndrome already so none of them had questions.

By Tuesday afternoon, I was questioning whether or not it was worth doing the next two days. If the information I was sharing with them was appropriate and meaningful or just falling on deaf ears. If spending the time talking with them would even make a difference.

As I Zoomed with another class on Wednesday morning, I could tell the students were a little more engaged as I went over the same basic information. When I invited them to ask questions, hands quickly went up into the air.

“Is it similar to autism?”

“Can you catch Down syndrome from someone who has it?”

“Is it rare?”

“Can it be cured?”

It was awesome! I answered their questions the best I could and loved the effort they were giving in trying to understand Down syndrome.

Today’s session was good, too. One student asked if kids with Down syndrome behaved worse than other kids, and another asked if kids with Down syndrome could breathe okay.

It was yesterday’s session, though, that helped me to know that doing this wasn’t a waste of time.

Down syndrome isn’t rare. It’s the most common chromosomal condition that occurs in babies. About 1 in every 700 babies are born with Down syndrome. That number would be higher but unfortunately approximately 67% of women choose to terminate their pregnancy following a prenatal diagnosis.

There is no cure for Down syndrome. And as I told my students, I wouldn’t want there to be one. Because if Moses didn’t have that extra chromosome, he wouldn’t be Moses. Same goes for a lot of other awesome people with Down syndrome.

My hope is that one or more (or all) of those amazing young kids will grow up and make a difference in the life of someone with Down syndrome.

Maybe one of them will be a doctor who tells expectant mothers, “Your baby has Down syndrome. I know this news is unexpected and not necessarily what you wanted to hear, but I want you to know that there is no reason to believe that your child won’t lead a very fulfilling life.”

A nurse that says, “Congratulations! You baby is beautiful and perfect.”

A teacher who says, “Let’s see what works best for you so that you can learn as much as you can while you’re in my class.”

A policy maker that understands people with Down syndrome deserve fair access to things like life insurance and organ transplants.

An employer that welcomes people with Down syndrome to work at their business in a capacity that is appropriate for them. That provides the training and opportunity for them to be successful and contribute to the success of the business.

A friend who accepts a person with Down syndrome for who he or she is. Who isn’t nice because you’re supposed to be nice to people with disabilities but because she truly enjoys being around him.

A partner or spouse who resists the urge to bail upon hearing the diagnosis. Who chooses to stay and love and support the mother and child through all the ups and downs.

A mother who refuses to abort the life growing inside her. Who chooses to love her baby unconditionally regardless of the number of chromosomes it has. Who chooses to focus on all that her child will be able to do when the world wants to tell her all about what it won’t be able to do. 

In the world of Down syndrome, we are taught that early intervention is key for the successful development of our children.

I believe that early education is also essential for progress to continue to be made when it comes to the Down syndrome community. Talk to your kids. Teach them about Down syndrome and other disabilities so that when they find themselves around someone who has an extra chromosome, who might sound a little “funny” when he talks, who needs a little extra time to understand what she’s hearing, or whose brain or body works a little differently in other ways, they know what to do.

Be kind. 

Show respect. 

Choose love.

A Letter to Mrs. Cordelia

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

Dear Mrs. Cordelia,

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

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

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

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

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

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

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

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

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

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

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

Love, 

Jenny (a.k.a. Moses’ mom)

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