Some People Don't Get It, Some Never Will

I have moments that aren't pretty. 

I am a Christian. My faith guides me in forgiveness and turning the other cheek. It gives me a moral compass for situations that are tricky. I try to do my best, but I am human. I can get offended or angry by someone or something. 

I try to keep my blog positive, because I am positive most of the time. Even if the positivity is real, I have moments.

I love my family. I enjoy my life. We love what we have, but sometimes life is hard and exhausting. We don't live like everyone else.

Jaycee needs medications and machines every day to be healthy and live. It's not fun but we have a routine. She sees six or so specialists for her conditions, which means several times a year we're running to appointments and waiting a ridiculous amount of time to talk to a doctor for a short amount of time. Then there's the few hospital admissions for illnesses every year because of Jaycee's lung problems. These parts of our lives are messy and hard, but there are many good times. We have made life work, and it's fine. I'm not sitting around feeling sorry for our family. Life can be hard at times for me, just like anyone else. 

Do you want to know what makes life harder sometimes?

Other people.

I suppose at times I want people to treat me with some extra sensitivity for my situation. I want them to think before they speak. I want them to see the bigger picture. I want them to understand how I view the world because of my experiences. Some people do. I love those people.

Other people just don't get it. Any of it. They don't understand the stress I deal with on a normal day let alone on a day when my child is sick. They don't want to step into my life for a second and understand my perspective. They make assumptions and judgments about my family they believe is true, but they don't understand.

I know you must be trying to figure out these mystery people and what they say, so I'll share a few examples.

Let's start with doctors. One of Jaycee's specialists never seems to get the full scope of her situation. One time, Jaycee was in the ICU for 3 weeks for ARDS, septic shock, and respiratory failure. She was on a ventilator for almost 3 weeks and on maximum support of an oscillating ventilator much of that time. She nearly died. That isn't me being dramatic. The doctors in the ICU offered to call in family members and clergy for us because they didn't think she'd pull through the first few days she was in the ICU. It was the most stressful and scary time in our lives.

After Jaycee recovered (which by the way was long...she could not walk when she was first discharged and depended on a wheelchair), we met with one of Jaycee's specialists to go over her progress since discharge. I mentioned that the hospital stay was scary because she almost died.

"She didn't almost die," the doctor said in an annoying voice.

"Well, she was on full support of a ventilator and barely held on several times," I replied.

I don't remember the doctor's next remark. Really, I don't remember anything else about the appointment. I was upset. I had just lived through hell with my kid in the ICU and this doctor, who should have known better, acted like Jaycee had lived through a simple scratch on her knee.

The doctor didn't get it. You think this person would have but nope.

A few years later, this same doctor seemed confused when I told her that I was having trouble getting Jaycee to appointments. Jaycee was completely scared of the hospital and refused to enter it. She was afraid she would be admitted and subjected to tests and pokes and pain. She had a long history at the hospital, and she was not going to voluntarily walk in for routine appointments.

The doctor asked me, "Why would she be afraid to come to the hospital?"

Really? Of all people, this doctor should know considering this person had seen her in ICU a few times hooked up to all sorts of stuff. But, the doctor didn't get it. The doctor didn't understand how the physical impacts her mental and emotional.

Doctors aren't the only ones to frustrate me though. People outside the medical world don't get it either.

There was a time when Jaycee was a year old and not walking, as completely normal for Down syndrome. One super person said, "I think she has first child syndrome, and you don't make her walk. She could walk if she wanted to."

Really? That person didn't get it! The person didn't understand that low muscle tone with Down syndrome delayed her development. Nor did that person appreciate the fact that Jaycee had physical therapy every week since she was 2 months old to help her be able to achieve things like walking. I sure had a good cry after that comment as this person seemed to think Jaycee's delayed walking was somehow my fault. Even though I knew it wasn't true, it still hurt.

Just one more story for you. Recently, I explained to an acquaintance how Jaycee injured her knee and why she was walking funny. I mentioned that it took me several hours to determine she was hurt because I took her refusals to get up and move as a behavioral issue (it's a common response from Jaycee when she's overtired). To which the person replied in a condescending voice, "Well, aren't you mom of the year?"

"Well, it's hard to know your child is hurt when they don't say much," I replied.

Thanks for calling me mom of the year though. I was only up several times that first night checking the video baby monitor in her room, checking on her physically a couple of times, and beating myself up for not catching her injury sooner. The criticism wasn't helpful. That person didn't get it either.

People say things without thinking sometimes. When I'm upset or in rage about a comment, I can eventually hear the gentle voice of God whispering truth to me. I am guilty of saying hurtful and insensitive remarks to people. I'm not perfect, just like anyone else. Sometimes, things fall out of my mouth that I wish I could take back. I need grace too. Because of that, I will extend grace to others who hurt me.

Even if people don't handle me with the gentleness and understanding that I desire, I will still forgive and move on. They deserve the same grace I want to receive from others. It's hard to forget hurtful words and people who say them, but it's important to move forward and accept that fact that some people will not understand my life. Maybe one day, they'll be willing to listen and hear my story and perspective. I hope I can do the same for them.

Stopping Offenses

It's really easy for me to be offended. I haven't had too many experiences where people were being malicious on purpose or did this horrible, public thing to me. The majority of the offenses were little things. Some little comment or some brief action that I took the wrong way. Things, that if I describe them on here, would seem really trivial. You might read them and think, "That's a weird thing to get upset about."  But, I did.

So, here's a short list of really small, insignificant situations that made me slightly upset or angry and offended:
-A person who told me Jaycee could walk if she wanted to. She just had "first child syndrome." She was only 14 months old at the time, which is typically NOT when kids with Down syndrome walk.

-The person who told me that Jaycee had a behavior problem because she was taking her bi-pap off in the middle of a night. (Uh...Do you call a 4 year old who is non-verbal taking off an uncomfortable mask in their sleep a behavior issue?)

-When Jaycee was under 18 months old, she didn't understand much. She didn't understand "no" or really any type of direction. I was well aware of her language abilities, since I am a speech-language pathologist. A report prepared by a professional evaluating her skills stated, "Jaycee was stubborn and would not stack the blocks." Well, she wasn't stubborn. She just didn't have the skills to do it or understand the direction. I could have done without the stubborn part in an official report.

-Jaycee loves babies, so she went to see a six month old baby sitting in her infant carrier. Jaycee slightly touched the baby's face. The mom told Jaycee not to do that. I followed her lead and told her no too. The mom frantically unbuckled the baby and held her so that Jaycee could no longer touch her. Then she sort of turned away from us. All of this took place in less than a minute. Was it because the mom was a germ freak? Did she think Jaycee was gross? I have never figured out her reaction, after all we weren't complete strangers.

-Then there was the wonderful ENT who brought up the possibility of Jaycee needing a tracheostomy with a matter-of-fact type of delivery. The new information felt like a punch to my stomach. When I acted surprise and pressed for more information, he said, "Well, Jaycee is pretty disabled. She doesn't even talk." I didn't know that being nonverbal meant you were going to have a tracheostomy, and I'm a speech-language pathologist. This is one of the few doctor's appointments where I ran for a bathroom afterwards so I could cry. (By the way, she doesn't have a tracheostomy.)


These were moments, as small as they may seem, when I found myself being offended. Lately, when I read the Bible and see scriptures about love and forgiveness, I realize that I'm not walking in that when I allow myself to be affected by these offenses. If I see a person who offended me and I brush them off or try to avoid them because of a past negative experience, then that's not the love and forgiveness that Jesus teaches. Now, I am definitely not seeking out people who aren't nice again and again, but it's not fair to write someone off for just one or two small, bad experiences.

I have to let these things go...never think of them again and never connect the person to the offense again. There's part of me that thinks that if I totally let these things go, then I'm saying that the person was right. But, it's not really about right and wrong. It's about moving on, forgiving people for what they said or did. Forgiving people for not understanding and not having compassion or wisdom. After all, I am far from perfect. I've said plenty of stupid things that I'm sure have offended people. And so, I'm starting the new year trying to have a clean slate and to clear these offenses.