Change in Plans

A month ago today, March 17, was supposed to be the first day of a voluntary three week leave of absence from my work. After finally recognizing I was in the throes of burnout in various areas of my life, I made the decision to take the time to rest and restore myself to a place mentally, emotionally, and physically so that I could find a way back to being the person I wanted to be.

Burnout is one of the things that we are taught to watch out for when entering into the field of school counseling. This is one of the best descriptions I have found for burnout:

Burnout is a state of emotional, physical, and mental exhaustion caused by excessive and prolonged stress. It occurs when you feel overwhelmed, emotionally drained, and unable to meet constant demands. As the stress continues, you begin to lose the interest and motivation that led you to take on a certain role in the first place.

Burnout reduces productivity and saps your energy, leaving you feeling increasingly helpless, hopeless, cynical, and resentful. Eventually, you may feel like you have nothing more to give.

HelpGuide, 2019

I found an online burnout self-test, and when I took it over a month ago, my score was 59 out of 75. Based on that score, I was at “severe risk of burnout” and encouraged to do something about it “urgently”. The next level would have been “very severe risk” as opposed to “severe”. I also filled out a compassion fatigue questionnaire and scored at-risk on it, too.

There was a time in my life where I would have looked at my scores and thought, “Oh, you’re okay. You only scored 59. If you were really burned out, you’d score 75. Maybe you’re not working hard enough.” Like many others, I had been conditioned to wear stress like a badge of honor. That if I wasn’t filling every second of my day with something productive, then I was lazy. That while I might be going through a hard time, others were going through even harder times so I should suck it up and quit whining.

Thankfully, in my 39-year-old wisdom, I was able to recognize that I had to stop going down the path I was on. Actually, I don’t know if it was wisdom so much as exhaustion – mental, emotional, and physical exhaustion. Either way, I was able to recognize that I was not okay and that I needed a break. A break that would allow me the time to figure out what was going on, how to handle it, and work on creating new habits for both my personal and professional life.

So I made a plan.

As I have often found throughout my 39 years on this Earth, when I plan, God laughs.

Actually, I don’t think He laughs. I think He shakes His head and says, “That’s not quite what I had in mind.” And then the whole “Thy will be done” thing comes into play.

Here’s how it happened:

  • February 26: I hit bottom. That’s the morning I woke up and thought to myself, “I can’t do this today.” I ended up taking two days off work.
  • March 4: I spoke to my husband and then principals about taking some time off of work. A three week leave of absence was scheduled to begin on Tuesday, March 17 and I would return to work on Monday, April 6. During my time off, I was going to go to church, get a physical, see my counselor, go to the dentist, read, write, exercise, get good sleep, clean, get a skin cancer check. I couldn’t wait.
  • March 5 – 13: I got my last rounds of classroom lessons in for my students and teachers. Some small groups were met with one last time and arrangements were made for other small groups to continue in my absence. Practice MAP tests were ready to go for 3rd & 4th grades. I met with some of the students I saw on a regular basis to make sure they were well-equipped for my hiatus.
  • March 15: While at my parents for an early St. Patrick’s Day dinner, rapid updates were coming in about steps being taken, including school closures, to combat the spread of the coronavirus in Missouri. The reality that I wasn’t going to get the leave of absence I desperately needed and wanted began to hit me and panic began to set in. As I drove my family home that evening, I felt defeated. I drove home in silence. When I went to bed that night, I cried. I’m talking about full-body sobs. The hope I had been carrying that I was actually going to get better was gone.
  • March 16: My school district announced that schools would be closed beginning Tuesday, March 17 through Friday, April 3. Classes were to resume on Monday, April 3.
  • March 17: I spent the day at home. With my children.
  • March 19: My day was spent at school preparing for distance learning.
  • March 20: I spent the morning running errands, stocking up on food and supplies, and beginning to experience real anxiety about the reality of how the coronavirus could affect my family, especially Moses.
  • March 27: My school district announced the school closure was extended through April 15.
  • April 9: Governor Parson announced that public schools will remain closed through the end of the school year.
  • April 17: We’ve settled into somewhat of a routine here at home. We are muddling through homeschooling two preschoolers at best. The children are living their best lives. We may not be able to convince them to go back to school, whenever that may be.

During this month, I have been able to take time for myself to rest and find some peace mentally, emotionally, and physically. I took the online burnout self-test again today and my score is now 46, which indicates I’m still at risk of burnout and that I still have work to do. But it also shows that I’m on the right track.

This last month definitely hasn’t gone the way I envisioned on so many different levels. Again, my plans and God’s plans don’t often seem to mirror each other. Thankfully, I learned to let go of my plans and trust in His a long time ago. Even though I still don’t understand why this has worked out the way it has, I trust that one day I will understand and maybe even be grateful.

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.

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.