Category: Parenting

Extra Chromosome = Extra Awesome. It’s That Simple.

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Josie was a fresh-faced little two-year-old when Moses was born. With her, my focus was more on helping her adjust to having a new baby invading her space than explaining that her new baby brother had Down syndrome. At that point in her young life, telling her that would’ve meant absolutely nothing to her anyway. Still, part of me wondered when the time would come to explain it to her.

While we didn’t explicitly tell her that he had Down syndrome, we didn’t hide it from her, either. When she asked why people were coming to see him, we explained that they were there to help him get stronger and learn how to do things. That explanation was good enough for her, and she quickly began to interject herself into his physical and speech therapy sessions. In fact, there are still times that I have to remind her that the therapists are coming to see Moses, not her.

My question of when I would have to explain what Down syndrome was and that Moses had it was answered this past spring. Josie had found a medal from the Step Up for Down Syndrome Walk we did in St. Louis the previous spring. She had been wearing it around the house for a while when she came to where I was sitting on the couch and asked me to read what it said. I told her it read “Step Up for Down Syndrome”. She looked at the medal again and said, “I don’t cheer for Down syndrome.”

“Oh, yes you do, sister.” was my immediate reply. Of course, her next question was promptly, “Why?”

Taking a deep breath, I said, “Because Moses has Down syndrome. We cheer for him all the time, right?” (As a matter of fact, we cheer for him so much that when he has even the smallest of accomplishments, he looks at whoever is around to make sure they’re properly cheering for him.)

Here came the hard part. Not because I thought that it would somehow change how she looked at him or felt about him, but because explaining the science and complexity of Down syndrome is hard. Explaining it to an adult who has at least heard of a chromosome is hard enough. Explaining it to a 4-year-old is downright difficult.

I did my best to break it down so she could maybe understand part of it. I told her how we all have chromosomes in our bodies and that most people have two of each chromosome in our cells, but Moses and others with Down syndrome have an extra chromosome that changes some of the things in their bodies and makes it harder for them to do somethings. Thankfully, I could tell that she was losing interest and that she was ready to go about her business, so that extremely over-simplified explanation was all she needed.

After that, Josie didn’t ask any more questions or say anything else about Down syndrome.

Until last week.

While I was getting Moses ready for bed one evening, Josie came in his room and asked, “Why doesn’t Moses talk yet?”

“Well,” I started, “It’s because he has Down syndrome and that makes it harder for him to learn how to talk.”

“Oh. Will you tell me about Down syndrome and those chromo-somes again?”

Impressed that she had apparently really been listening to me when I had tried to explain it the first time, I reminded her that most people get two of each chromosome but Moses got extra of one of them which makes it harder for him to do some things, like learn how to talk. This time I added, “But it’s also part of what makes him awesome.”

Without missing a beat, that smart-mouth came back with, “But you don’t have an extra one so you’re not awesome.”

I swear it was all I could do not to come back with, “Well, little girl, neither do you, so what’s that say about you, too?” Instead, I returned the playful smirk she was giving me and told her to go get ready for bed.

What I love most about telling Josie and other kids about Down syndrome and what it means for Moses is their reaction. It’s almost like a healthy indifference. Having that information doesn’t make or break anything in terms of how they feel about him. There’s no looks of pity towards him or me. They don’t say, “I’m sorry.” There’s no uncomfortable pause or change in conversation. There is simply acceptance.

For Josie, beginning to understand why some things are different about and for her little brother hasn’t changed a thing around here. She still loves him because he’s her Mo Mo. It’s that simple.

Normal First Impressions

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A couple of weeks ago, I got the chance to meet a family that had just welcomed a beautiful baby with Down syndrome. While the mom and I had talked on the phone and had been texting for a few months, we had never actually met in person.

When Moses was a baby, I can remember almost desperately looking to other families with kids with Down syndrome for reassurance that everything really was going to be okay. Normal even. I was so excited that now it was my turn to make a great impression about having a child with Down syndrome and show her what an amazing, normal family we really are.

When we got to their house, Moses had decided to take off his shoes, braces, and socks on the drive over. While I was putting them back on, Josie had taken the baby’s gift and gone up to the front door. After I got Moses situated and out of the van, I got the coffees I had picked up on the way and started herding him towards the door where Josie was semi-patiently waiting. When Moses and I got to the steps on the sidewalk, I put the coffees down to get him down the steps a little quicker. Of course, he wasn’t having any of that since he can do it on his own, so I picked the coffees back up and semi-patiently waited for him to get down the first step.

By this point, Josie can hardly stand that she hasn’t gotten to meet the new baby yet, so I told her she could go ahead and knock on the door. Moses was making his way towards the second step, but his progress was slowed by the leaves and sticks that needed to be examined on his path. When the door to the house opened, a sweet yellow lab came barreling out, right past the child that loves animals and straight to the one that has a healthy dislike of them. So now Moses is not moving at all, my hands are full with the drinks, and Josie’s welcoming herself into this new home.

The mom came out and got the dog, but Moses wasn’t making any effort to continue his trek down the steps. So I walked to the porch, put the coffee cups down, went back to pick him up before he could head back to the van, and got him to the front door. After I put him back down and picked up the coffees, I was ready to meet that baby and hopefully calm any reservations or fears the mom might be having about having a child with Down syndrome, if she was having any at all.

After introductions were made, Josie and I went right over to where that sweet baby was sleeping and we ooh’d and aww’d over her perfect little eyes, nose, mouth, and hands, and we giggled at how her hair stood straight up. Standing up, I said, “Moses, come see the baby!” and looked over to where I thought he was.

He wasn’t there.

“Moses?” The mom said she thought he was in the middle of the fort her other kiddos had been working on. I walked over and looked. Nope, not there. I stuck my head around the corner into the playroom.

Not there, either.

“Moses?” Nothing.

“I brought him inside right?” As I said those words, I was inwardly cringing at what this mom must be thinking of me. Pretty sure losing your kid within the first three minutes of meeting does not elicit feelings of confidence and normalcy. The mom said she was pretty sure he came inside, but as I was opening the front door to make sure, I heard him.

“Moses! Where are you?” And then he appeared at the top of the steps. While Josie and I had made a beeline for the baby, Moses made himself at home and went straight upstairs. Apologizing, I ran up the stairs and carried him back down. The mom assured me he was fine and that there was nothing up there that he could hurt.

Now, I’m the type of person that doesn’t say such things if I don’t mean them, so when others say such things to me, I go with it. So after he looked at the baby for about 7 seconds and walked away, I wasn’t worried about where he was going since I knew he was at least safely inside.

As the mom and I talked and got to know each other, Josie went off to play with the other kids for a few minutes, but then she was back to ask if she could hold the baby. Josie loves babies. She pretends like she’s pregnant at least once a week and then loves those babies after they magically get out of her stomach. Getting to hold a real baby is like holding a little piece of heaven for that girl.

While Josie sat on the couch and held the baby, the mom and I continued chatting while I made sure that Josie was supporting the baby’s head and kept an eye out for Moses. After a few minutes, it was becoming clear that the baby was hungry, so I took her from Josie to give her to her momma. As the mom got settled in to nurse her, Josie went over and sat right next to her. Like she wanted to watch to see exactly how this baby was getting fed since as there was no bottle in sight.

“Josie, go play.”

“But…”

“Josie, go check on your brother. Now.”

Reluctantly, Josie left the room and thankfully didn’t come back until after the baby had finished nursing.

In the time that we were there, I could tell that this was a mom that I could totally be friends with. She was easy to talk to, and we talked about several things in addition to some questions she had about my experiences with Moses and Down syndrome.

As we talked, it was kind of cool for me to realize how normal Down syndrome really has become for me and my family. I vividly remember being in her shoes with a newborn and learning about First Steps, therapies, health screenings, etc. I did my best to assure her that while I know it can be overwhelming at first, there really are great supports available and it doesn’t take too long to settle in to this new normal place.

And then the hour I had given us to stay was up. I called for Josie and walked over to call Moses to come downstairs only to find that he had thrown no less than 15 stuffed animals and a couple of books down the stairs.

“Moses Alexander!”

He appeared at the top of the steps with a huge smile and another stuffed animal to chuck down the steps.

Apologizing, I told Josie to help me clean up the carnage, but the mom stopped us and assured me it was no big deal and that her other kids would take them back upstairs. Praying that she meant what she said and that she wasn’t crying on the inside, I went to gather up Moses who had wandered into the playroom. Before he could make any more of a mess, I told him to come say goodbye. Carrying a toy with him, he came over and said, “Bye.”

Josie, seeing an opportunity to be helpful, grabbed the toy and when Moses tried to pull it back, he fell and hit his head pretty hard on my knee. I prayed it would play it tough, but he promptly started wailing. Doing my best to act like this was nothing, I gave the mom a quick hug, told her how amazing it was to meet her and her kiddos, and told her to call or text me if she needed anything.

Moses cried the whole walk back to the van then promptly stopped and smiled when I told him he could watch Elmo on the way home. By the time we pulled away, he was happy watching Elmo, Josie was talking about the sweet little baby, and I was thinking that I had absolutely failed at making a great first impression. I wanted to say to her, “I promise we’re totally normal!” But as I drove, I started laughing at the whole ordeal and decided that while it may not have been a great impression, it definitely wasn’t a boring one!

We may not have made the impression I had hoped to make, but I do pray that she saw that we are more or less an amazing, normal family. I think when some parents have a baby with Down syndrome, there is an apprehension that there will be a lack of normalcy – with the baby and life in general. The awesome thing is that life with a baby with Down syndrome is totally normal. If anything, the only way it’s abnormal is that it’s better than you could have ever imagined.

Finding Santa

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“Mommy, why do you have to work so hard?”

“What do to mean?”

Today had started off relatively slow and relaxed. At least I thought it had. All I had done since the kids had gotten up was strip their beds and washed their sheets, make breakfast, clean up from breakfast, put the sheets in the dryer, fill up the water table and kiddie pool for them, change two poopie diapers, fix lunch, clean up after lunch, read a couple of books for Moses and then put him down for a nap.

As I was taking a shower while Josie was also “resting”, I had actually thought that it has been a nice, quiet morning before a busy afternoon of swim lessons and physical therapy and knowing that I was on my own with the kids for the evening while Tyson was at a meeting.

So when Josie asked me that question as we were laying in my bed chatting a little while later, I was genuinely confused where it was coming from and asked her what she meant.

She said to me, “Why do you always have to work so hard at home and at your job? …You need someone to help you.”

“Someone like who?”

“Someone like…Santa.”

I smiled at her and told her that I worked hard because I wanted to do a good job at home and at my work. Because I had things that I was responsible for doing, and because if I didn’t do them, then they wouldn’t get done. I also told her that I did have people that helped me, but there were some things that were just my job to do.

I don’t identify as a feminist, but I think that’s because I never saw myself as unequal to my male counterparts. There was never anything that I aspired to be that my gender would hinder my chances. However, I’m also not blind to the fact that there are political, economic, and social inequalities based on gender that do exist.

Marriage has opened my eyes to that more than anything.

The “traditional” roles of marriage are largely outdated. The idea that the man is responsible for working and the woman is in charge of all the things at home applies to fewer and fewer families today. (And God knows that the idea that “children should be seen but not heard” is dead and gone.)

Thankfully, my marriage has more or less been one in which my husband and I have our fair share of duties. At the same time, we both acknowledge that I do more on a day-to-day basis around the house, and, as I once told him, I’m okay with that because I take pride in making sure that my family has a clean house, food in the fridge and on the table, etc.

I’m also very much aware that I assumed those responsibilities because that’s what my mom did for her family, and it’s what her mom did for hers. I’m sure Tyson didn’t question it because it’s what his mom did for her family and what her mom did for hers.

The difference between our moms and me is that other than 8 weeks of maternity leave, I didn’t leave the workforce while my children were young. Yes, I am off work for a couple of months in the summer, for the other 10 months of the year, I have a pretty mentally and emotionally demanding full-time career, too. Much like many other wives and mothers of today’s society.

It’s a choice, sure. I suppose I don’t have to work. I could’ve stayed home while Josie and Moses were little. We wouldn’t be able to afford the lifestyle we enjoy now, but we could make it work. But I want to work. I don’t want to be a stay-at-home mom. I’m super thankful I don’t have to. (Seriously, you SAH moms are saints on earth.)

However, for many families, there’s no choice of whether or not one of the parents will work. The chances that my daughter will also be a working mom are fairly high, I’d say.

In a way, I’m happy to be setting an example for her to work hard. Not because I’m a woman, but because I believe in the value of working hard and doing things to the best of my ability.

However, there’s a part of me that is fearful that I’m setting her up to feel like she has to do it all. That she has to work hard at work and at home without any help. That she has to do what she saw her mom do. Or what she thought her mom did.

The thing is, I do have help at work and especially at home. However, a lot of the things her dad does at home are things she doesn’t see. She doesn’t see him scheduling payments and writing checks. She doesn’t understand how much time goes into maintaining the yard. When he’s doing the dishes, she’s usually off playing. She doesn’t understand that he does his own laundry. She doesn’t understand that his job simply keeps him away from home more than mine so he is limited in how much he can do at home.

I definitely want to set the example that as a female, she CAN do it all. But that doesn’t mean that she has to do it all by herself. I am encouraged when I read or hear about couples that share equally in managing their household. I pray that she finds a partner that will be just that – a partner. A person that she can depend on and knows work hard with her.

I hope she finds her Santa.

Teaching Kind

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The other morning while going for a walk, Josie asked me, “Mom, what should I be when I grow up?”

After going through a couple of suggestions and explaining what they were, I said to her, “Do you know what I want you to be when you grow up?”

“What?”, she asked.

“Kind.”

After the sass and arguing I’ve been getting from her for the past two weeks of summer break, along what happened a couple of days ago, I find myself focusing on being kind and respectful more than anything with her.

Earlier this week, we were at AT&T getting some help with our phones, which of course meant we were there for an hour. Moses had been doing his thing – making his rounds, telling people “Hi”, tagging some people on the leg as he walked by and giving others hugs. At one point, he wanted something in my purse, so I gave him my tin of Altoids. He walked away shaking it happily, and then came walking back to me empty handed. As I got up to find where he had put it, a woman who had been sitting by the door was coming toward me holding my Altoids. We laughed as I thanked her for giving it back and I told Moses to stop giving my things away.

Moses was smitten. He kept going back to where she was sitting on the ledge by the door and would wait for her to put her hand out and he would touch it as if he was touching a cloud. Seriously, I wanted to ask her if I could feel how soft her hand must be with the way he kept going back to to touch it.

After a bit, he walked away and I followed him. When I looked back a few seconds later, Josie was standing about 10 feet away from the woman and other woman who was with her, and she was just looking at them with a weird, shy smile on her face and had her fingers in her mouth, which she never does. I told her she could go say “hi”, which I normally don’t have to tell her, but she stayed put. I could tell the women were getting a little uncomfortable with the way she was acting towards them, so I told her to stop acting weird and either say “hi” or go sit back down. She walked back toward the bench and I went to go after Moses again. When I came back around, she was staring at a man wearing a safety vest. I took her over to the table where Tyson was and told her that it wasn’t nice to stare at people and asked her why she was acting weird. She said she didn’t know. Thankfully, we left a couple of minutes later.

Later that evening, we were outside and she came over and sat next to me. It was my turn to ask her a question.

“Why wouldn’t you say hi to those ladies at the store?”

“I don’t know. I didn’t know them.”

“You didn’t know the lady that was talking to Moses, but you went right up to her and even gave her a hug. What was different that you would talk to her and give her a hug but you wouldn’t say hi to the other ladies?”

“Well…it’s because their color wasn’t this.” She pointed at her arm.

Thank God I’m in education and could recognize that this was about to turn into an important teachable moment. I was able to take a deep breath and think about how to best respond to the answer that broke my heart.

I asked her, “Why does that matter?”

“Because I don’t like when people have brown or black color. I don’t like to talk to them.”

In my head, I was screaming “THAT IS NOT TRUE! YOU’VE TALKED TO PEOPLE WITH BROWN OR BLACK SKIN! WHERE IS THIS COMING FROM???”

Taking another deep breath, I responded to my daughter as calmly and clearly as possible.

“Josie, do you know what this is?” Pointing to my arm and to hers. “This is skin. Skin comes in all different colors, and the color of peoples’ skin is never a reason to not talk to them. Skin color does not matter. What matters is how people act and treat other people. Does that make sense?”

Josie nodded. But I wasn’t finished.

“Those ladies at the store were very nice. They were being kind to your brother and were trying to be nice to you. Were you being nice to them?”

She shook her head no.

“Remember that man in the safety vest? He had your color skin, but guess what? He wasn’t nice. He said something very not nice about you and your brother. That’s why I wanted you to stay away from him. It had nothing to do with the color of his skin but because of how he was acting.”

We then talked about one of her friends at school that has brown skin and how they’re friends because she’s nice. I ended the teachable moment by telling her, “You better never not talk to someone again because of the color of his or her skin, do you understand?” Thankfully, she nodded her head yes.

By the end of our conversation, I felt a sense of relief even though it wasn’t an easy conversation to have. It would’ve been easy to excuse Josie’s behavior to she was feeling shy. But in my heart I knew that wasn’t it. It would’ve been easy to just ask her if she wasn’t talking to those women because they had black skin. But as I’ve learned in the last almost 5 years, this parenting thing isn’t always easy.

More than anything, I want to raise my daughter to be kind. In a world in which people are still judged based on skin color, socioeconomic status, religion, number of chromosomes, etc., I want my daughter to simply show kindness and respect to all people. I want her to choose friends based on whether or not they treat her and others with kindness. I want her to choose a husband that treats her and others with love, kindness, and respect. I want her to be chosen to be a friend and wife for the same reasons.

I think of the people in history who have worked to teach people that gender doesn’t determine jobs, skin color doesn’t determine where you sit on the bus, and the answer to an extra chromosome is not institutionalization. While incredible progress has been made, it doesn’t mean the lessons don’t still have to be taught.

So at this young, impressionable age of almost-five, I find myself in a position as her mom to make sure that I’m not turning a blind eye to or excusing her behavior because of her age. I have to remember and understand that she is learning every day. I have to have tough conversations with her. I have to listen to her and help her see the errors in her thoughts and behaviors. Above all, I have to make sure that I am teaching her not just through words but by my own actions. I know that not everyone is going to show Josie or even myself kindness and respect. But I know from experience that I sleep much better at night when I can look back on the day and know that I did my best to be kind and respectful. I look back at how I’ve treated others, and at how I have been treated, and know that kindness and respect are not often regretted.

Back to our walk, Josie ended up saying she wants to be a doctor when she grows up. My response? “Be a kind one.”

 

Running On E

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You can’t pour from an empty cup.

That’s the thought that has been running through my head.

Because mine is about empty.

Tonight I have gotten to work on refilling it.

This kids are at my in-laws. My husband is out celebrating the end of his school year.

I am ignoring the piles of clothes covering the dining room table that need to be put away and the mess of papers littering the kitchen counters. I’m going to let the dishes stay in the dishwasher until tomorrow and not care that the bathrooms haven’t been cleaned this week. I decided against going shopping for a new swimsuit or flowers that would’ve likely died before I could plant them. The top of my dresser has been collecting papers and pictures and dust for months, but I’m not going to clean it tonight.

Instead, I took this evening for me. I have gotten to sit on the couch and eat too many chips and french onion dip while watching TV. I got to finally take full advantage of the free vacuums at the new fancy car wash. (I don’t even want to know how many Cheerios, Fruit Loops, and penguins were in the cracks of those car seats…). I was able to turn off my phone and sit quietly with my thoughts for 45 uninterrupted minutes. I’ve taken the time to write.

I know that I’m in the season of life that requires me to take care of others in a big way, both at home and at work. But that doesn’t mean that I have an unlimited reserve of mental, emotional, and physical energy to unceasingly meet the needs of those who depend on me. That I don’t need to have my own needs met.

Right now, I’m tired.

Mentally.

Emotionally.

Physically.

Which is why I need time like this to myself. It’s quiet times like this that I am able to think, reflect, and pray for direction.

Some may think it selfish for me to be as thankful as I am to be at home alone this evening. I know there was a time I thought it was a selfish thing to want to do, let alone actually do it.

But even Jesus needed time alone to think, reflect, and pray, right? There were times that he told the twelve guys following him to leave him alone. I think that’s pretty understandable considering he spent his days being sought out to heal the sick and raise the dead, feed the masses and turn water into wine, and somehow also find the time to teach life-changing lessons in ways his students could understand. He knew there were times that He needed to take time for himself up on a mountain or in a boat in the middle of the sea. So He did. And then He was able to come back and continue serving others.

I know that doesn’t quite compare to what I do on a daily basis for my husband, children, geriatric dog, friends, students, etc. But like Jesus, after spending my days serving others, there comes a time that I need to stop.

Be still.

Be quiet.

Pray.

Tomorrow when I wake up, my cup will be refilled. It may not be overflowing. It may not even be to the top. But at least I will feel like I have something in there to pour out for others. Because you can only run on empty for so long.

I hope that you will make the time and take the time to make sure your cup is filled, too.

The Blue Elephant in the Room

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

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

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

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

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

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

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

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

That’s when it got fun.

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

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

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

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

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

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

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

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

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

Sugar:Spice

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

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

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

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

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

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

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

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

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

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

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

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

Way Better Than Okay

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

Go ahead and imagine that scene.

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

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

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

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

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

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

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

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

 

Your Attention, Please

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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.