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.

Falling Through the Ice

I’ve been trying to figure out how to describe what the last two days have felt like. As I was putting things away, it finally came to me.

For me, going through life is like walking on a frozen lake. There are times when the ice is thick and solid, and I can walk with confidence. Then that step comes and you hear the crack. Sometimes it’s so soft it’s barely noticeable and it creates the smallest of lines. Other times it is thunderously loud and the break in the ice comes quickly and forcefully.

Over the years, there have been times that the ice breaks enough that my foot goes through and into the icy water. There have been times where I’m able to step over the crack and find my way back to solid ice with reasonable ease. Sometimes, the crack is so small I forget about it with the next step.

Yesterday felt like the ice under my feet simply disappeared and I was plunged into the freezing water.

Dr. Brené Brown, a research professor at the University of Houston, has an amazing video in which she illustrates the difference between empathy and sympathy. (If you haven’t seen it, you can watch it here.) In it, she describes how many times people who are showing sympathy draw a nice silver line around another person’s problem or emotion. I think people try to put the silver lining around a person’s problems and emotions for a variety of reasons: they want to “fix” it; they are uncomfortable with the strong emotion of the other person; they don’t understand the intensity of the level of the feeling for the person; or maybe for them, the same situation wouldn’t result in the same feelings or response and so they don’t understand why it’s happening for this other person.

I think that some people accept silver linings because it’s easier than to stay with the current feeling. Or maybe the person having the strong, hard feeling can tell that the other person is uncomfortable with how she’s feeling and wants to help that person feel better. Or maybe it’s because he’s just not ready to deal with the situation or feeling. And sometimes the silver lining puts things in a different perspective for the person and she is ready and able to move on.

I can be a master silver-liner. In most situations, I can find the bright side and do my best to convince the other person to see the pretty silver light. In fact, I do it to myself all the time.

Worn out after a hard day at work? At least I have a job.

Frustrated at the sight of a dirty house that was literally clean five minutes ago? At least I have a house.

Another medical bill in the mail? At least you are able to access healthcare.

Tired of listening to Josie get anxious when she doesn’t have her note saying that I’m going to pick her up at the same time as I always do? At least she is using her words to express her feelings.

Annoyed at the extra time it takes to put Moses’ socks, braces, and shoes on? At least he can walk.

For any hard situation I may be going through, there is always someone who seems to be going through something harder. But does that mean that my situation magically ceases to be hard? Does it become less important?

Many times, it seems that the answer is “yes”. Get over yourself and your “hardship” and be grateful for what you have. Or at least leave it at the door when you leave your home.

Like in Dr. Brown’s video, I feel like the ice I was standing on – ice that I thought was solid – wasn’t so solid after all. As I kept marching forward on my path, my foot hit a weak spot and I fell through. When I hit the water, many of those hard situations and feelings that I thought I had perfectly silver lined were there waiting for me. I’m pretty sure they are what weakened the ice below me in the first place.

I have been silver lining things in my relationships.

I have been silver lining things in my family.

I have been silver lining things in my job.

I have been silver lining things about myself.

Instead of allowing myself to feel the sadness, disappointment, frustration, annoyance, irritation, hurt, etc., I’ve silver lined it, pushed it down, and went on my way. Sometimes the silver lining works, sometimes it doesn’t. When it doesn’t, that feeling lies dormant until the ice cracks and allows it to come to the surface once more.

I took another mental health day today. I felt better than I did yesterday, but I knew that I wasn’t on solid ice just yet. As I was cleaning off my dresser this afternoon, I finally pulled out a bag that has been hiding underneath it for a little over three years.

It’s a bag that I received from the Down Syndrome Association of Greater St. Louis shortly after Moses was born. In it were resources that gave information about Down syndrome, tips for raising a child with Down syndrome, brochures for agencies that provide assistance for kids with Down syndrome, and a couple of books about having a child with Down syndrome.

As I went through the contents, I broke down. Much like I did when I looked at Moses’ first goal report for his IEP.

For three years, I’ve worked really hard at drawing that silver line around the challenges that come with a child with Down syndrome.

He has Down syndrome? At least he’s healthy.

He spent 6 days on a ventilator because of RSV? At least it wasn’t 7 days of watching a machine keep him alive.

He has an ASD in his heart? At least it was able to be repaired by a cardiac catheterization instead of open heart surgery.

He can only recognize and match 10 pictures? At least it’s more than none.

I am fully aware that Moses is doing more physically and cognitively than a lot of other three-year-old kids with Down syndrome. But it’s still hard to see his limitations, especially when it’s in black and white.

As I read through his goals, I was disappointed. I tried to silver line my disappointment with At least he’s making progress.

This place where I’m at is nobody’s fault and it’s not because of one certain thing. It’s a culmination of silver lining my feelings and situations, not taking care of myself consistently, and trying to keep up my facade of strength.

I don’t think that humans were designed to be dismissive of their situations or feelings. I don’t think that humans were designed to be physically or mentally strong all of the time. I think that we were designed to experience life, feel the feelings, rest when we feel weak, and hold others up when we feel strong. And when we find ourselves in that icy water, we can be at peace knowing that God doesn’t want us to stay there and He will help us find our way back to the solid ice.

Giving Up and Giving In: Taking Care of My Mental Health

When my alarm first went off this morning, my first thought was, “I can’t do this today.” Then I hit the snooze button.

When it went off the second time, I thought to myself, “I can’t do this today. But I have to because I have groups to meet with, students wanting to talk with me, classes to teach, teachers to meet with. I have too much to do, too many people counting on me, so I have to do it.” And then I hit snooze again.

The third time my alarm went off, my thought was, “I can’t do this today. I don’t have it in me to give to others the way they need me today. I’m not okay. But I have to.”

If I were a superwoman, this is where I would tell you about how I got up, showered, put my big girl panties on, and mustered up the strength and energy to face the day.

But I’m not superwoman.

I’m just a human.

The truth is, I hit snooze. Again. And when my alarm went off for the fourth time, I gave up and gave in to the understanding that I wasn’t well enough to go to work today.

At that point I got up and met my husband in the kitchen as he was about to come check on me and tell me how late it was getting. When he saw me, he asked if I was okay, and I told him, “I think I need to take a mental health day.” Then he listened as I stumbled through my thoughts and held me while I cried.

I sent my principals a text saying “So I’m going to take a mental health day today. I can’t really explain it, but I just know that I need to take it.” Thankfully, the only question that was asked was if there was anything they could do to help.

I know that there are some people who don’t understand the concept of taking a mental health day. They are probably the same people who don’t quite understand mental health. They might even be some of the same people who don’t understand taking a physical health day (aka “sick day”). They may believe that unless you’re in the hospital, you should go to work.

We encourage people who are running a fever/throwing up/sending germs into the air with every cough/spreading germs by touching all the things after blowing their green-snotty nose to stay home to get well and keep others from being affected. We understand that when a person pushes himself too much physically when he is sick, it can turn into an illness that is even more serious. That makes sense, right? We understand that, right?

The thing is about understanding when someone is experiencing poor mental health, you don’t have to have experienced it yourself. Just like someone who is physically sick – it’s not about you and how you feel. It’s about understanding that she isn’t well and needs to take steps to get better.

Maybe you’ve never experienced depression, anxiety, posttraumatic stress disorder (PTSD), or compassion fatigue. But it doesn’t mean they aren’t real experiences for others. Perhaps you know what it feels like to be extremely sad, extremely worried, or mentally exhausted after going through a difficult time for you or your family.

For example, I’ve personally never had the flu, but I don’t need to have had the flu to understand that a) it’s real, and b) the person who does have it needs time to rest, recover, and feel strong again. I’m certainly not going to tell a person who has the flu to suck it up, maybe take a nap, and just try to be positive. I wouldn’t do that because I have been sick before and know what it’s like to need to take the time to rest, let my body recover, and regain my physical strength.

Likewise, you don’t need to have experienced a certain state of mental unwellness to be able to understand a) it’s real, and b) the person needs time to rest, recover, and feel (mentally) strong again.

It’s called having empathy.

It’s called having compassion.

Instead of questioning or making judgments about a person who is in poor mental health, just understand that she is not okay. Ask what you can do to help. Send her a message or Bible verse that might bring some peace. Understand that he may just need some time to regain a state of mental strength wellness.

Was it easy to take a mental health day today? No, it wasn’t.

As I sit here typing there’s a part of me that feels guilty that I’m missing work and inconveniencing people even though I’m not running a fever, puking my guts up, hacking up a lung, or blowing my nose a thousand times an hour. Part of me is uncomfortable thinking about people who may not understand or judge me because of this.

But I also know that because I took today to rest, cry, pray, and just let God hold me, tomorrow will be better.

I will be better.

Take care of yourself.

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.

Changing the Lens of Down Syndrome

A while back, I wrote about a conversation I had with a woman wherein she told me that her daughter was not likely to have a baby of her own because of her age and the higher probability of the baby having Down syndrome. (You can read it here.)

This past summer, I ran into a woman that I had known growing up but hadn’t seen in years. She and I were catching up when she told me that her daughter had one child and was thinking about having another one. The woman said that she hoped her daughter would just be happy and thankful for the one she had because there had been a “genetic scare” and they got lucky the baby was born “normal”.

As with the other conversation, my mind was racing as I tried to listen respectfully while trying to figure out how I was going to enlighten this woman. My chance came when she asked if I had any kids of my own, and I told her that yes, I had two children, Josie and Moses. For some reason, I didn’t come out right then and tell her that Moses had Down syndrome. That didn’t come up until she asked about their ages and school.

I explained to her that we had decided to wait another year before sending Josie to kindergarten because of her late birthday and that Moses would be starting the early childhood program, too, when he turned three in October. That was when I told her that he had Down syndrome and would be going through the evaluation process to have an IEP developed to make sure he was getting what he needed at school.

To be honest, there was a part of me that got a teensy bit of satisfaction from seeing her reaction and scrolling back to her earlier comments to make sure she hadn’t said anything outright offensive. But what really brought me joy was getting to tell her about how amazing Moses is and what a beautiful relationship he has with his big sister. To get to tell her with 100% honesty that I wouldn’t change Moses having Down syndrome for anything because he has brought so much happiness and richer insight to our lives.

A couple of months ago, I was talking with another older-ish woman about a close friend of mine who won a state-level award the same week that she gave birth to her beautiful daughter who has Down syndrome. I watched as her the look on the woman’s face transformed from one of sadness to pure confusion when I went on to say that my reaction was, “How amazing is that?! She hit the lottery! She was named Missouri School Counselor of the Year AND her daughter was born AND she has Down syndrome!” I would say it’s safe to bet that she thought I was saying that to be nice. But I truly wasn’t. I was honestly so incredibly excited for my friend because of her good fortune on all accounts.

Even though it’s the year 2020 and we have amazingly advanced technology and an abundance of information at our fingertips, it is apparent to me that when it comes Down syndrome and other disabilities, it can sometimes seem like we’re still in the Dark Ages. Down syndrome is still viewed through a very negative lens. I know we’ve come along way from the viewpoint that Dr. Benjamin Spock held and published in his best-selling book Baby and Childcare where he recommended that babies born with Down syndrome should be immediately institutionalized because “If [the infant] merely exists at a level that is hardly human, it is much better for the other children and the parents to have him cared for elsewhere.” (Globaldownsyndrome.org) That suggestion was held as true until research was published in 1979 that showed that the IQ of children with Down syndrome that were raised at home both with and without specific attention to stimulation was higher than children with Down syndrome that were raised in an institution.

Nevertheless, we’re still facing a generation of mothers encouraging their daughters NOT to have a baby out of fear it will have Down syndrome. There are still doctors who recommend aborting a baby that has Down syndrome as if they have a crystal ball and somehow know the deficiencies and limitations the child might have will overshadow and negate the child’s strengths and abilities.

Anyone can be a part of helping others change their views and see the beauty and value in the life of a person with Down syndrome. Be excited for a woman who gives birth to a baby that has Down syndrome. Share in a family’s excitement when its child with Down syndrome reaches another milestone. See the beauty in the perseverance and strength of a person with Down syndrome working to overcome one of life’s challenges.

Let’s work together to change the view of Down syndrome from a lens of doom and gloom to one of celebration and possibilities.

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.