When He’s Ready

Last week, I took my kids to their pediatrician for their yearly wellness checks. 

Josie went first and got a clean bill of health with instructions to eat more fruits and veggies. 

Moses went next and squirmed like the wiggle worm he is while the doctor checked his heart, ears, and throat. 

When the doctor had Moses lay down with his head on my lap so he could check whatever needed to be checked in his nether regions, Moses put up a little fight and about kicked the doctor in his own nether regions. 

When the doctor pulled Moses’ pants down and saw his diaper, he said something to the effect of “I see potty training isn’t going well.” 

I was a little taken aback and explained that we’ve gone through spurts of Moses being interested over the last year and have had off-and-on success with getting him to go on the potty, but overall, he’s not really into it yet. 

The doctor’s response?

“So he’s lazy.”

This time I was a lot taken aback and said nothing. 

But just because I didn’t say anything doesn’t mean I wasn’t thinking plenty of things, including that I wish Moses would’ve kicked a little harder a few seconds before. I almost asked, “Do you mean he’s lazy or I am?” Because let’s face it, Moses isn’t going to take potty training matters into his own hands. 

So what did I do?

I came home, felt guilty that my kid wasn’t potty trained yet because I had allowed him to be lazy, and began mentally preparing myself to have him potty trained by Christmas. 

Monday morning I got the pull-ups out and started making Moses sit on the toilet every 10 – 15 minutes. One time he peed. The other times he yelled and made it clear he did not appreciate being on the toilet. By the end of the day, he was happily in his diaper and I was feeling sane again.

Here’s the thing. I know my son. I know him much better than this man who sees him a handful of times a year. I know that him not being potty trained has more to do with him not being ready than either of us being lazy. Could I put him through potty training boot camp and force him to become potty trained? Probably. But again, I know my son and I know that this approach is not the best for him. (Or for me for that matter.) 

He’s just not ready. 

Would I love for Moses to be potty trained? 

Well, yeah. I’ve never met a parent who says, “Changing diapers is my favorite.” Especially when the child can contort and twist and put up a fight like none other. 

From what I’ve learned about potty training kids with Down syndrome, it’s pretty common for them to be closer to 5 or 6 before it really clicks for them for a variety of reasons: cognitive ability, bladder control, realizing the sensation of needing to go, etc. 

Some kids with Down syndrome are successfully potty trained by the time they’re 3 or 4. Which is fantastic for them! And another piece of evidence that God didn’t use a cookie cutter when making our kids. I’ve also read accounts of parents in which their child with Down syndrome was seemingly potty trained for a while and then suddenly reverted back to being in diapers. 

I know that other parents have different theories and ideas about potty training for kids with and without Down syndrome. And I hope that those work well for them. 

This experience has once again reminded me that while books and doctors may say what my child “should” being doing by certain ages, and that other people may have opinions about what he’s ready for, I know him best. He depends on me to do what’s best for him, not what’s best in the eyes of or for the convenience of others. I hope other parents remember that, too, whether their child has a disability or not. 

I know he’s going to knock potty training out the park. Just like he’s done for learning to drink out of a straw, crawl, walk, go up and down the stairs, use a spoon (and a fork when he feels like it), and a whole host of other things. Just like he will do with talking, reading, writing, riding a bike, and whatever else he sets out to accomplish.

It will happen.

When he’s ready.

Early Education in Down Syndrome

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

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

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

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

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

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

“Is it similar to autism?”

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

“Is it rare?”

“Can it be cured?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Be kind. 

Show respect. 

Choose love.

A Letter to Mrs. Cordelia

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

Dear Mrs. Cordelia,

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

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

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

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

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

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

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

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

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

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

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

Love, 

Jenny (a.k.a. Moses’ mom)

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

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.