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)

Seeing Him

Over the last four years, I’ve heard or read about parents who say “I don’t even see my child’s Down syndrome anymore.” 

Me?

I’m still waiting.

I’ll be honest, in the last 3 years and 11 months, not a day has gone by that I don’t see something about Moses and think about him having Down syndrome. Sometimes it’s a facial expression. Sometimes it’s because I see him working to master a new skill or doing something I’ve never seen him do before. Sometimes it’s because of something totally random and I find myself thinking about Down syndrome and him.

There have been days that I’ve wondered, “What’s wrong with me?”. Why is it that these other parents can look at their child for an entire day and not once think about the fact that he or she has Down syndrome, yet somehow I can’t? 

Then last night it hit me that there’s absolutely nothing wrong with me. There is nothing wrong in me seeing my son for who he is. Seeing all of who he is. Including the extra chromosome that makes him so wonderfully and uniquely him. 

Yes, in so many ways, he really is like any other nearly 4-year-old kid. He makes messes, gets into his sister’s things, throws fits, says “Mom” on repeat throughout the day, and resists going to bed. 

I see that.

I also see his beautiful almond-shaped eyes that all but disappear when he laughs. I hear his muffled speech and celebrate when he says another word more clearly than he did yesterday. I see him work hard to open his yogurt by himself and cheer for himself when he succeeds. I see his smile that can get so big it takes up his entire face. 

Why wouldn’t I want to see those things? 

To say “I don’t see his Down syndrome.” is akin to saying, “I don’t see him.” 

As if having an extra chromosome is wrong. As if there is something wrong with him being fully and completely him. 

I’m no longer going to wonder when the day will come that I won’t see that he has Down syndrome. It’s a part of what makes him my Moses Alexander the Great, and he deserves to be seen.

Where I’m Supposed to Be

I’m where I’m supposed to be.

This is the mantra that has gotten me through this week as I’ve found myself struggling to make sense of life these days. 

This isn’t new territory, either. A couple of months ago, I was going through some old things and I came across a letter I had written to God. I can remember writing it like it was last week instead of 12 years ago. At that time, I was definitely not where I wanted to be. To be honest, I felt like I was on the road to nowhere and I was lost even trying to find my way there. Not exactly what I had pictured my life looking like at 27. 

In the letter, I poured my heart out to God. All the thoughts and feelings of anger and frustration, sadness and loneliness, confusion and fear. I asked Him to help me know what to do to help myself. 

Here I am 12 years later in a much different season of my life yet feeling those same emotions and a little lost again. And this time it’s not just myself I have to worry about. The stakes are definitely much higher now, and my sense of urgency to know what to do to help myself and my family is much more intense.

Where am I? 

I’m at home.

I’m serving my family. I’m cooking meals, washing dishes, doing laundry, and cleaning up messes. I’m cheering for my daughter as she learns to make a lowercase ‘a’ and for my son as he correctly identifies objects when given two choices. I’m rocking outdoor recess duty. I’m snuggling with Josie when she crawls into bed with me each morning and rocking Moses at naptime because he wants me to. I’m taking deep breaths so I don’t completely lose my temper and reminding myself to keep small problems small. I’m asking for hugs and forgiveness when I fail to do both. I’m excited to see my husband when he gets home so I get to talk to an adult and hear about the outside world. 

When I was at work, I would often announce “I’m going to go change lives!” Now I feel like the only thing I’m changing is diapers. 

Believe you me when I say that I NEVER saw myself as a housewife and definitely not as a stay-at-home mom. I’m not saying there’s anything wrong with either of those by any means. It’s hard work and the pay is horrible. I’m one “official” week in and I’m ready to turn in my two-week notice. 

But I’m supposed to be here. Even when I don’t want to wash another dish, it feels right. I don’t have the luxury of knowing why I’m doing exactly what I never wanted to do, but I do have the luxury of trusting that God knows why I’m here and will help me to understand when I’m supposed to. 

Over the last 12 years I have learned that life isn’t about getting where you want to be and staying there. It’s about continuing to live and experience and learn and grow, and that still includes going through some growing pains at times.

I’m where I’m supposed to be

And who knows? This may end up being the best place I’ve been to yet.

Living with Healthy Fear

When Moses was 3-months-old and on a ventilator because of complications from RSV, a common cold to most people, I remember one of the nurses in the PICU telling me, “We have a healthy fear of RSV.” He said that even though they knew how RSV progresses and what it can do to a person’s body, they also know that they have to be diligent while taking care of a patient in Moses’ situation because things can go from bad to really bad very quickly. Case in point: The first time Tyson and I went to the cafeteria together to get lunch, leaving Moses alone in his hospital room for the first time since being admitted, the alarms in his room went off to signal that the thick mucus was clogging up the ventilator tube. When we got back upstairs, the nurse explained that they had to suction his tube out pretty forcefully so that the oxygen could flow through the tube. This happened a couple more times while Moses was on the ventilator. Hence the need for that healthy fear.

When we started to learn of the coronavirus and how it affects the respiratory system, Tyson and I immediately started thinking about how to keep Moses safe. Yes, for the most part, COVID-19 does not affect children as severely as older people. However, from recent reports, it can and has seriously affected children. Because of Moses’ history of having respiratory complications from RSV, he is considered to be ‘high risk’ for COVID-19.

So while we have been practicing social distancing for the past two weeks, I have felt fairly confident that we’re keeping him safe. Of course, there is a part of me that understands that I am not in control of the spread of this virus. None of us are. Despite our best efforts, he could still get it. Because of his age, he could get over it with little to no complications. I’ve read accounts from parents that their children with Down syndrome have gotten COVID-19 and recovered fully from it.

He could develop severe respiratory complications. He could require a ventilator again to save his life again.

And because he has Down syndrome he could be denied that life-saving intervention.

Two states – Washington and Alabama – have already released medical guidelines that more or less outline who gets priority when it comes to being put on a ventilator. Individuals with intellectual disabilities are included in the group that is not given high priority.

To some in the medical field, Moses’ life is viewed as less valuable than a three-year-old with typical intellectual abilities.

I am not okay with that.

I’m not saying that Moses’ life is more valuable than any other three-year-old’s. I am saying that his life is just as valuable as any other person’s on this planet.

In three short years, Moses has impacted so many lives in ways that I may never even know about. But I do know how much awareness and understanding he has brought to our family and friends about Down syndrome and respecting the dignity of his existence. I know how much happiness and laughter he spreads with his wicked sense of humor and his amazing hugs. I know that he has taught me to slow down and remember to find the joy in life’s simple moments and to not let society dictate what is important in my life.

But because he naturally has a shorter life expectancy (60 years) and is prone to have more medical issues, he’s low priority. That means that if the resources were available, he would likely be denied access to them. Because somehow those experts in the medical field are also experts in predicting the impact of a person’s life based on a diagnosis of, oh, let’s say Down syndrome.

I am not okay with it being decided beforehand that people with Down syndrome or any other type of physical or intellectual disability could be denied life-saving measures in the event they develop respiratory complications from COVID-19. I understand that hard decisions have to be made in these uncertain times. However, I don’t believe that when it comes to medical care, especially involving life-saving measures, those decisions should be made without input from the patient or the patient’s family. As his parents, Tyson and I have the right to be part of the decision of whether or not to put him on a ventilator if that resource was available.

When the Declaration of Independence was written, it included this little piece:

“…that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”

Declaration of Independence: A Translation. National Archives.

Notice that it doesn’t say “except for…”

Also, the Americans with Disabilities Act states:

“The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act require that health care providers provide individuals with disabilities full and equal access to their health care services and facilities.  Title II of the ADA applies to public hospitals, clinics and health care services operated by state and local governments and Title III of the ADA applies to privately-owned and operated hospitals, clinics and health care providers.

Accessible Health Care. ADA National Network

It saddens and angers me that when I pray for Moses during this time, I not only pray that he stays healthy, but I also have to pray that if he does get this virus, that he will receive the necessary care and resources to restore him to health. That the doctors and nurses at the hospital will see the value in his life without me having to fight to convince them of that. That the principles and laws of our nation will be upheld.

Are my son’s medical rights protected?

Theoretically, yes.

In reality? Let’s just say I have a healthy fear of those people who are making decisions about who gets priority when it comes to saving lives.

1-800-273-TALK (8255)

As a parent, I know that there are certain topics that are hard to talk to your child about.

Sex, drugs, and alcohol are probably the main three that a a lot of parents dread having to talk to their kids about. When it comes time for the conversation, the message is simple:

Don’t do it.

There’s another topic that parents can’t afford not to add to that list.

Suicide.

The message is just as simple:

Don’t do it.

As a parent, just the thought of your child knowing about suicide is sickening. The thought of your child having suicidal thoughts is enough to take your breath away and bring you to tears.

For a lot of parents, it’s easier to think that it’s not necessary to talk to their child about suicide. To default to thoughts like, “My son/daughter would never do that.” or “I would know if my son/daughter was having a hard time.” or “My son/daughter is too young to talk about suicide.”

Like abuse, trauma, and addiction, suicide does not discriminate. It doesn’t have an age limit. Skin color does not provide protection against it. Nor does gender. Zip codes mean nothing.

In my career as an elementary school counselor, some of my most difficult days were the ones when I listened as students told me of their desire not to live anymore and their plans to attempt suicide. The youngest of these students was in Kindergarten. My first experience of a student contemplating suicide to the point of having a plan was with a 1st grader. Some may say, “They’re just saying that for attention.” And I would agree. These students were not okay. They needed help. Big time.

Listening as these students talk about these things is heartbreaking. Calling parents and hearing the shock and confusion is hard. I’m sure the conversations that were had at home were extremely difficult.

But you know what would have been even harder?

Finding out that one of those students attempted or completed suicide.

We all have mental health, and just like our physical health can change at a moment’s notice, so can our mental health. It’s nothing to be ashamed of, although there seems to be a part of our society that is bound and determined to convince us otherwise.

Don’t let them see you cry.

Boys don’t cry.

Neither do big girls.

Suck it up.

Get over it.

You’re fine.

Today I spent the morning in a neighboring school district trying to provide even a little bit of comfort to students that were struggling to accept and make sense of the fact that one of their classmates completed suicide yesterday. More than once I heard them say things like “He was always so happy”; “I never thought he would do something like that”; and “I never thought that would happen here.”

Please talk to your child about suicide. You’re not going to plant a seed or “give them ideas”. What you are going to do is open a line of communication that is vital. That lets your child know that you’re not going to stick your head in the sand and that she can come and talk to you when she’s struggling. That he can tell you about a friend that he’s worried about. That you will listen and take her seriously when she says she feels hopeless. That you will find the right way to help him just like you did when he had a fever and a sore throat.

If you’re wondering how to talk to your child about suicide, this article gives some good ideas on how to broach the subject.

If you’re wondering what to say to your child if he tells you that he has thought about hurting himself or has had suicidal thoughts, keep it simple. Say “I’m so thankful you told me” followed by “I’m going to help you get through this”. If anything else, call the National Suicide Prevention Hotline at 1-800-273-8255.

I’m not saying it’s going to be easy. But it will be easier than wishing you had.

Letting Go of the Guilt

The first time I felt it was after getting the results of the fetal echo at St. Louis Children’s Hospital about 2 1/2 months before Moses was born. Hearing that his heart looked perfect sent a huge rush of relief through my mind and body, but instead of walking out of the hospital feeling light as 7-month-pregnant feather, I felt the heavy weight of guilt. 

You see, as Tyson and I walked through Children’s and saw kids with various forms of illnesses and severe disabilities on the way to get the echocardiogram of our baby’s heart, I was prepared to join their club. Even though the ultrasounds up to that point indicated the baby with Down syndrome I was carrying was healthy, I was sure that the other shoe would finally drop and we would find out that we were in for a rough time in the form of an unhealthy heart. 

As happy as I truly was to know my baby’s heart looked healthy, I couldn’t help but to feel incredibly guilty that we were getting off easy. 

Over the past three years, I’ve had that “my son with Down syndrome is very healthy” guilt quite a bit. Yes, we’ve had health issues with him: the scary RSV at 3 months; a heart catheterization procedure at 1 year; two sets of ear tubes; slightly elevated TSH (thyroid) levels. But on days like today when the only “bad” news we get from the doctors is that his TSH level is still slightly elevated and that he’s slightly far- or near-sighted (I can’t remember which!) and has a slight astigmatism in his right eye that will be rechecked at his ophthalmology visit next year, I feel guilty. 

He is healthy. Period. 

While we were at Children’s today finding out that Moses is pretty much the picture of health, I once again saw children with various disabilities and illnesses. I met a couple who’s 1-year-old son with Down syndrome had heart surgery several months ago, coded about 8 hours post-surgery, and are now “back at square one” with his heart and he is still on a feeding tube. I saw another little girl with Down syndrome who was in a modified stroller that could hold her oxygen tubes. I watched as her mother did something to the tube that was connected to her trachea. I saw a couple of kids with Down syndrome with glasses. I saw another boy with Down syndrome who was wearing a mask so as not to either spread germs or contract them or both. 

That’s not even mentioning all the other kids without Down syndrome that had different disabilities and health conditions that I saw as we went from doctor to doctor. Then there’s the infants in the NICU, and the kids in the PICU. The children in the Heart Center and the ones that are there being treated for cancer and other illnesses.

Since we left the hospital today, I’ve once again been experiencing that heavy weight of guilt of having a healthy child where so many others are not. As silly as it might sound, I’ve been asking God “Why?”. 

“Why does my son get to be so healthy?”

“Why does my son get to be so strong?”

“Why does my son get to be so cute?” (Obviously the answer to that is genetics, right?)

And then I had to stop myself from asking “Why?”. I had to give myself permission to let go of the guilt and just be thankful. Feeling guilty isn’t going to do Moses, those other kids, or even myself any good. Instead I should be telling God “Thank you.” 

“Thank you for letting my son be so healthy.”

“Thank you for letting my son be so strong.”

“Thank you for letting my son look so much like me and be so doggone cute.” 

I don’t know what God’s plan is for Moses. I don’t know what God’s plan is for those other kids. I just have to remember to trust that He’s in control. 

Remember to trust that His plan is always right. 

Remember to tell Him “Thank you.” 

Losing “It“ and Finding Grace

I lost “it” this morning.

By “it”, I mean my patience, my mind, my cool, my sanity, my control.

Josie has been struggling for several weeks with going to to school. Part of it has to do with having separation anxiety, which she also went through last year. Part of it apparently has to do with having a fear of people dying and being sad when they are in Heaven. Part of it has to do with wanting things to be the way she wants them to be but not getting her way. Part of it has to do with the fact that she’s always been an emotionally intense child.

A lot of it has to do with her being five and having a lot of big thoughts going on that her brain just isn’t ready to make sense of yet.

As a school counselor, I’ve done my best to go through all of the techniques and strategies I can think of to figure out what would best help her.

As a mom, I have been doing my best to practice things like taking deep breaths and expressing gratitude to help her through this season of challenge.

Every day I have prayed for her to find peace and happiness. I have prayed for myself to have the patience and ability to help her.

Today I failed her. Big time.

As I was yelling and slamming doors and stomping and crying, I knew it was the absolute wrong thing to do. But her five-year-old tears and whining and ungratefulness coupled with my own personal stressors and frustrations resulted in me losing it.

By the time we got to school, I had calmed down enough to apologize to her. To try to explain that my reaction was in response to my frustration at her behavior.

When I got an email from her teacher letting me know that she had a couple of rough moments during the morning, including yelling and stomping her feet, I had to admit to my role in that. That it was my fault she acted that way, not Josie’s. Let me just tell you that admitting to a co-worker that you failed your own daughter and caused hardship for both of them is a very humbling experience.

Throughout the day, I cycled through feelings of disappointment, anger and guilt for my behavior; frustration at not knowing how to help my daughter; fear of how my words and actions may have affected her.

By the end of the school day, I was drained. Physically, mentally, emotionally.

It was when I got downstairs to pick Josie up that I found what I didn’t expect but so badly needed.

I found grace.

When she saw me and broke out in a huge smile, she gave me grace.

When she hugged me tight and told me she had a great afternoon, she gave me grace.

When I apologized to her again for the way I acted this morning and she said, “You already told me that.”, she gave me grace.

When she told me, “It’s hard for both of us.” after I apologized again and told her of my plan to do better tomorrow, she gave me grace.

I didn’t deserve this child’s forgiveness and grace today, but it’s what I got because it’s what I needed.

I pray that this reflection of my own shortcomings might serve to remind you of the importance of seeking forgiveness and accepting grace. Especially when you feel you least deserve it. In turn, be ready to give forgiveness and grace to those who may not deserve it but desperately need it.

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

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

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

“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.