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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Transitions are Hard

I sit in my living room, which is now full of strangers, thinking that this has to be some nightmare that I will wake up from. I see Haley on the steps playing quietly by herself. Tears fill my eyes. Is this her life now? Will she have to sit on the sidelines while strangers come in our house and examine this baby?

I observe as they do test after test on my newborn. They move her arms and legs which instantly flop down. They make loud noises to see if she responds. They ask to watch her nurse to see if they can determine why she won’t latch. I was up all night with her trying desperately to get her to breastfeed. I am severely sleep deprived, and if I am honest, I am still in a state of shock. I cannot do this. Everyone keeps telling me that I can, but I am not sure I believe them. I feel utterly alone.

The therapists and coordinator leave after a couple hours with their recommendations for which therapies we need to begin. How can a newborn need therapy? Thank God, my cousin is here. She works in this field, and is familiar with the emotions I am experiencing. She tells me that this will become our new normal and that it won’t always feel this overwhelming. I still want to run out the door and never look back.

Fast forward to now. Those strangers I was talking about…. Well, they certainly are not strangers now. They have become a crucial part of our family. Our coordinator has been there for me since the day Sienna was born. She has provided resources, insight, and support at every turn. She has been a vital piece of our puzzle. She took the time to find the right therapists for Sienna. Not everyone was a great fit, and she assisted me patiently until I found the team that worked best for our family. And, oh what a team we have.

Imagine if someone visited your home on a weekly basis for over two years, with the intentions of helping your child. I don’t know if it is the therapists we have or the time they have spent in our home, but they are so important to our journey. They have been a support system for me. Sienna’s nutritionist was pretty much my therapist during that first year of Sienna’s life. I called and texted her so many times, and every time she responded immediately with a resource. I could not even tell you the amount of times she’s seen me cry. Then there’s our physical therapist. Every time she arrives at our home, Sienna’s face lights up with joy. This woman is one of her best friends.

Yesterday, our coordinator and physical therapist performed an evaluation on Sienna. It doesn’t seem so foreign anymore. In fact, my cousin was right….it has become our new normal. I expected this to just be another evaluation until our coordinator pulled out the Transition Handbook and started talking to me about Sienna transitioning out of Early Intervention and into the world of IEPs. An IEP is an Individualized Education Plan.

When Sienna turns 3, her EI services will be cut off. This is how it works. It is something that has terrified me for a long time. There will be a whole new set of challenges for us. I will have to fight for inclusion. I will have to fight for services. I will need to prepare a binder and insist that my child is seen as valuable. I will have to do all of this without the support team I have had in place since Sienna rocked my world.

This is me after Sienna’s evaluation yesterday.

When our coordinator mentioned it, a pang of fear hit me immediately. Again, eyes watering and tears flowing, but for completely different reasons. I cried at the idea of them being in my house examining my newborn baby and now I am crying at the idea of them leaving us. The irony is not lost on me. Until you have sat in my shoes, you have no idea how this feels.

I know I will tackle this new challenge and I will continue to advocate for my girl. I will learn all I need to in order to ensure her success, but I am still allowed to be sad and scared. Transitions aren’t just hard for kids.

“If you are successful, it is because somewhere, sometime, someone gave you a life or an idea that started you in the right direction. Remember also that you are indebted to life until you help some less fortunate person, just as you were helped.” -Melinda Gates

 

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Roadblocks

Today, I hit a small roadblock on my journey of advocacy for Sienna. If I am honest, these moments can set me back. My roadblock came in the form of an adorable little girl who had a perfectly normal question for a kid to have. She saw me walking Sienna and stopped. She looked up at me and said, “Why do her eyes look that way?” I responded by telling her that her eyes were shaped like almonds, because she has something called Down syndrome. She stared at her some more and then walked away. Haley was with me and she looked up at me and said, “I think Sienna’s eyes are pretty.” My eyes began to water as I responded, “Me too, baby. Me too.”

It doesn’t seem like much of an altercation, but it took me back to a moment last year when a little boy approached Sienna and I and asked why she looked like an alien. This was a little boy I had to see at a weekly activity. He called Sienna an alien baby quite a few times. At the time, I wasn’t strong enough to approach his mom or even correct him. I just ignored it, which I still beat myself up over.

Moments like these knock the air out of you as a mother. You know your child is beautiful, but the world only sees something different. I will not always be able to protect my girls from insensitive comments that come from others. It terrifies me. It’s inevitable that some day Sienna will be hurt by the ignorance of someone. I just hope when that happens she has enough self worth to know that she is a beautiful perfect person.

 

The only sense of control I have over Sienna’s future is to educate others on how to accept and welcome differences. Some days, I am Wonder Woman and I am ready to go into battle. Other days, the simplest comment can make my eyes water and send me into a puddle of tears. I know there will be challenges on this journey. It’s okay to have roadblock days. Tomorrow, I will wake up ready to take on the world for my girls again. I wouldn’t change Sienna for the world, but I will change the world for her.

“You may not always have a comfortable life and you will not always be able to solve all of the world’s problems at once, but don’t ever underestimate the importance you can have because history has shown us that courage can be contagious and hope can take on a life of its own.” – Michelle Obama

 

 

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