Kindness for the Win

Reflecting on this past month, I realize how challenging it will be to put into words the impact it has had on not only me, but my kids, and our community. Watch the video below for more perspective and be sure and read the rest of our post for more about our wonderful experiences this past month.

It all began with a trip to the store on a Saturday afternoon with my 5 year old, Haley. I had a list of items we needed to purchase in order to fulfill our 21 acts of kindness for the month. For those of you that don’t know, Sienna has 3 copies of her 21st chromosome. During October, one of the ways we celebrated her uniqueness was by performing 21 acts of kindness.

As Haley and I were driving to the store, I asked her what she thought we could do that would be kind. At first, the usual stuff came up. ‘Let’s make cookies for our neighbors. Can I have some too?’ Then I chose to dig a little deeper. Sometimes, I think we shelter our kids too much. I know I am guilty of it. We want to protect them. This was one of those times that I decided Haley was mature enough to handle reality. I asked her what she thought it meant to be homeless. We discussed the homeless men in our neighborhood that hold up signs asking for help. I love the innocence of children. Everything is so simple to them. ‘Why don’t they just get houses, Mommy?’ This led to a discussion on economics, war, and poverty.

On the opposite side of the spectrum, sometimes I am too transparent with Haley. I am too transparent with everyone. Just read my blog. She could handle it though. At first, she suggested giving them money. She even asked if Dada could give them jobs, since he had helped Uncle Dave get a job. I told her it wasn’t that simple, but that she was on the right track. I asked her, “If you were homeless, what are some things you might need?” We went up and down the aisles as she picked out t-shirts, water bottles, toothpaste, socks, coloring books, and deodorant (my suggestion). We walked around the store, going through our list, talking about how what we were doing was going to make other people happy. We were in WalMart (the epicenter of LOL dolls, Haley’s favorite toy), and as we walked by the toy section, she turned to me and said, “Getting an LOL doll isn’t about being kind to other people, so let’s not get one today.” My mouth dropped and I said, “Okay.”

We went home and made our treats. We dropped them off to neighbors and friends. The next day, Haley brought them into school along with flowers for her teachers. We spent an afternoon in a shopping center handing out flowers and Starbucks gift cards. People thanked us and one lady told Haley that she had made her whole day. We got in the car and Haley said, “Mommy, you are right. Doing things for other people does make me feel good.” She meant it. This whole experience has had a positive impact on Haley. She thinks about kindness often now. She isn’t perfect. She’s a kid, but this exercise opened the door to meaningful dialogue about the joy of giving.

For another act of kindness, we spent a morning at a local school reading our favorite Down syndrome advocacy book to a first grade class. I brought Haley along for the ride. I wanted to introduce her to the ways we can advocate for her sister. This also brought up some meaningful conversation. The concept of Down syndrome is really hard to grasp at 5 years old. She just knows that her sister does things at a slower pace, but she doesn’t care, because she’s her sister. When other kids ask why Sienna isn’t walking yet, it baffles Haley. One of the kids asked that question during our visit. That same question is always asked by her friends. When we got in the car, she said, “Why do people care so much about Sienna walking?” I explained that it is something that makes her different so sometimes people notice it, but that’s okay. We like different in our house, right? “Mommy, everybody is different. Nobody is the same. So, why does it matter?” Again, my kid is buddha. You want some insight? Spend an afternoon with a kindergartener.

We really did enjoy our time at that school. The kids were all scooting on the ground with Sienna at one point. They loved playing with our little spider monkey. We made tie dye socks and talked about their differences. I walked away feeling positive about the experience, but it is sometimes hard to tell if you are reaching kids. That night, I got home and had a message from a mom of a child we had read to that morning. It reaffirmed my belief that advocating on Sienna’s behalf is rewarding and meaningful. This mom said her little girl had fallen in love with Sienna. She wanted our mailing address to send a picture her daughter had made for Sienna. She thanked me for introducing differences to her daughter and said it opened the door to a powerful conversation.

Truly, I am just giving you the Cliff Notes version of this month. People have asked me if I make any money doing this blog. I don’t, but this month I feel I was paid far and above anything money could do for my soul. The feedback I have received in letters, messages, and emails have brought tears to my eyes and fulfillment to my heart. I have heard from other parents in our community, parents and siblings of adults with Down syndrome, students in the genetics counseling session I presented to, and people in general just thanking me for educating them and opening their eyes to the beauty of our unique life. So, I might not make any money doing this, but I will take payment in kindness any day. Thank you for following us and we hope you will continue to come back for more as we progress into the holidays.

“I have found that among its other benefits, giving liberates the soul of the giver.” -Maya Angelou

Here are some highlights from our month.

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An Open Letter to Kim Kardashian

Dear Kim,

You and I aren’t so different. We are both mothers. We both had to fight hard to conceive and deliver our kids. Like you, I had Asherman’s syndrome. I endured the hysteroscopies and the endless ultrasounds. I went through miscarriages. We both had our struggles, but we both ended up with beautiful children.

Unlike you, I ended up getting an extra surprise on the day of my daughter’s birth. You see, she was born with Down syndrome. I was completely unprepared for her diagnosis. I loved my child fiercely, as only a mother can do, but I struggled. I had to deal with a whole new set of worries in unchartered territory.

I am happy to say that today, I am an advocate for my daughter in every sense of the word. My daughter amazes me. She is brave, determined, and joyful. She has taught my family endless lessons. She is more alike than different. As her mother, I worry. I worry about how the other kids in school will treat her, and how they will perceive her. And my biggest worry of all is that someone someday will call her a “r****d”.

That word is now considered hate speech. Did you know that when you used that word live on social media yesterday? I know you said that you made a mistake. I give the people in my life grace when they use this word. I correct them and explain why it is so hurtful to myself and my daughter. But I give them grace.

However, I do not think I can grant you that same grace. Here is why. You are a public figure. You want the success that comes with being a celebrity, then do better. If you are filming, choose your words carefully. Choose them as carefully as you choose your wardrobe, because words matter.

Some teenager out there that worships you saw that video you posted and thinks it’s cool to use that word now. Who is the victim in all of that? My daughter and her peers. Mother to mother, I am begging you to remove that word from your vocabulary. I would not be the advocate I claim to be if I did not confront you about this. Spread the word to end this word.

Sincerely,

One Pissed Rockin’ Mom

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Why is your Mom such a Germaphobe?

If I had a mom/wife super power, it would have to be my laid backness. Is that a word? Anyway, I am not a huge planner. I live each day in the moment, and I have a tendency to let go of things that aren’t important. I plan the important things (therapy, doctor visits, advocacy work) but for the most part, we are very relaxed in my house. I used to appreciate this side of myself, until I became Sienna’s mom. There are days I have to fight every urge in me to try and be the cool mom. Occasionally, I have to tell another mom to keep her kid away from my kid. I hear the congested cough that is just a typical cold for your typical kid and my mind goes to sleepless nights, breathing treatments, nasal aspirators, essential oils, and dreaded hospital stays.

Last week, I yelled at a shoe saleswoman. She patted Sienna on the head. I handed her sanitizer and told her to use it before she touched my kid again. She just stared at me. My old self would stare at me too. Get over yourself and your germs, Shannon. Do you think you’re more important than everyone else? Well, not more important, but germs are different for us. I had to let go of that innate laid backness and embrace my uptight germaphobe side.

Sienna is one of the 40-50% of children with Down syndrome that has a heart defect. She has an Atrial Septal Defect or an ASD. It’s a hole in the wall that separates the top two chambers of the heart. This defect allows oxygen-rich blood to leak into the oxygen-poor blood chambers in the heart. Sienna’s right side of her heart is enlarged due to this blood flow.

When Sienna was first born, we were told that her ASD might close on its own. We have since learned that it is on the moderate to large side, so it will require surgical intervention. The goal is to wait for her to be 4 years old. We hope and pray that she will qualify to have the procedure done in the catheter lab, but there is still a chance that she will need open heart surgery.

We have to be on the lookout for signs that she is struggling because the defect can cause pulmonary hypertension, congestive heart failure, and there is an increased risk of stroke. It’s also very important to try to keep her as healthy as possible. If Sienna were to get pneumonia, it could cause an array of health complications, and would require an immediate hospitalization.

A person with Down syndrome is 62% more likely to get pneumonia. They also are more susceptible to illness such as ear infections, tonsillitis, and upper respiratory infections like RSV. Why? One reason is due to abnormalities in their immune systems, usually the T cell and antibody-mediated immunity functions that fight off infections.

Another reason is their low muscle tone. Remember the post I did on hypotonia? As I mentioned, hypotonia can affect anywhere, including the lungs. It can result in difficulty coughing up mucus, which then settles and results in an infection. Sienna’s small passageways in her nose and ears can also make her more prone to infection.

This is why parents of children with Ds may be a tad over protective during cold and flu season. What may be a little cold for your “typical” child can and will turn into something a lot worse for our children with Ds.

When Sienna’s eye starts to goop more than usual and her nose starts to run, I know that it is the beginning of a cold. It never just stays a cold, and it always lasts months. I do everything within my power to keep it from escalating to pneumonia. Every morning and evening, we use a hospital grade nasal aspirator. This little contraption has helped us immensely. We are also a big fan of essential oils, probiotics, and bone broth in this house. Her doctor recently gave us the green light to add Zyrtec to our regimen, which is also helping. Let’s hope our methods continue to work through cold & flu season. I know quite a few parents who have lost their little angels to RSV and these types of illnesses. Please if you are feeling sick or have a cold, stay away from Sienna until you feel better.

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