We Walk the Line

There is a line that exists, and all mothers of children with special needs walk it. It is not my favorite part of this journey. Advocacy versus inclusion. It’s a push and pull, an ever going battle in my mind. It’s the uncertainty that is parenthood. We never know if we are doing the right thing, but we forge ahead.

The push is the piece that wills me to discuss advocacy, to prove to society that Sienna has worth and that Down syndrome has a place in this world. I want people to know that Down syndrome is nothing like I thought. It’s a gift, a blessing, it’s Sienna.

Then, there’s the pull, constantly telling me to treat her the same as her typically developing peers. Place no limitations on her, and treat her as you would treat any other child. If you baby her, she will not succeed. If you draw attention to her diagnosis, you are doing her a disservice.

So, which is it?

When you write a blog and post as often as I do on social media, one thing is certain. Opinions are abundant.

“If you want Sienna to be treated like everyone else, why do you constantly draw attention to Down syndrome?”

“You don’t have to defend her, you know. She’s just a baby.”

“Don’t you think advocacy has taken over your life? Is that really what’s best for Sienna? For Haley? For your marriage?”

These are actual quotes from people in my life whom I love. They all want what’s best for me, for my family, and my children. If they question it, do you know how many times a day I question it? Constantly.

I am in the midst of a WDSD school tour teaching children about Down syndrome, carting Sienna along with me to show children that God creates beauty in all of us, that we all have unique talents and challenges. I am drawing attention to her.

The reality is this. Down syndrome is here to stay. I am not ashamed of it. Yes, it is a big part of our lives. I have a tattoo on my arm that signifies how proud I am of my daughter and our family, so obviously, I am in it for life. Sienna’s diagnosis is written on her face, and it will be for the rest of her life. Sometimes, I am relieved that her face reveals her challenges. I see mothers with children on the spectrum. How do they explain that their child is not misbehaving, without pointing out their diagnosis? It’s a constant battle.

Motherhood is insecurity at all times. You make decisions on behalf of these tiny, incapable, humans. You hope that you are doing the right thing, but you don’t get to see the future. If you screw up, their happiness and place in this world are at risk, and all of that lands on you. It’s pressure. It’s stress. It’s hardship. It’s also beauty, fulfillment, and reward. All of these feelings coexist in my world, at this moment in time.

The truth is, I have no idea if I am doing the right thing. Does anyone? Aren’t we all just faking it? All I know is that it feels right. It feels right to visit schools and share Sienna. It feels right to use my voice to tell society how much color Sienna brings to our world. It feels right to talk about Down syndrome and her challenges, because they are my challenges too. I might change my mind some day. I reserve that right. For now, this is where we are.

If you don’t use your voice to tell your story, will anyone ever hear it? Will anyone ever learn from it? Your story is who you are, and our story is Down syndrome. Our story is girl power. Our story is miscarriages and infertility. Our story is heartbreak, adventure, and redemption. Thank you for reading about this life we got. You make this mom feel like she is doing something worthwhile.

 

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Pregnancy and Newborn Amnesia

My husband and I made a proclamation prior to having our second daughter that this was it for us. We went through so much with our miscarriage journey, and we wanted to put that behind us. After all, kids are expensive and time consuming, AND also rewarding and amazing. I agreed with my husband. I still agree, I think.

Is any woman ever really ready to make that final commitment? I know pregnancy is painful, tiring, and body altering, AND life changing, beautiful, and empowering.

The butterflies in my belly, the baby flips while doing yoga, the feelings that came with growing a life inside of me…..who wants to say goodbye to that? Then, there’s the baby stage….the sweet smells, the endless snuggling, and the bond that comes with nursing. I look at pictures of my sweet girls as newborns and all I want to do is go back in time.

And for us, there’s more to consider. I worry that not giving Haley a typical sibling will put too much pressure on her as she grows up. Will she feel obligated to stay closer to home? Will she make decisions for her family instead of herself? Will we hold her back?

Now, logically, I am aware that this is not a reason to have another child. I also have learned that there are no guarantees. Pregnancy does not always end with a baby. Labor and delivery do not always end with a ‘typical’ baby. After all, you get what you get and you don’t get upset.

I go back and forth about this all the time. Our plan before Sienna was two kids, and we should stick to that plan. Then, I see a pregnant mom or a newborn and my oxytocin memories come flooding back, and I forget all that. I call it pregnancy and newborn amnesia.

Here’s the thing though. Why do we not remember how draining that stage of life can be? How quickly I forget the fact that Sienna didn’t sleep more than 3 hours at a time until she was 11 months old. I was so sleep deprived that I thought I might have a brain tumor. I forget how hard it is being dictated by a baby’s feeding schedule, their helpless cries, and their sleeping (or not sleeping) demands.

We are finally starting to get some freedom. Haley and Sienna can play together now. I can leave them alone for a few minutes and not worry. We are getting out of the house more. My husband and I are dating again. I can have a glass of wine (or four) and not worry about having to breastfeed or pump. My kitchen and living room feel bigger without the swing, the pack n play, and the exersaucer.

I’d be lying if I said I didn’t daydream about those tender moments. Childhood goes way too fast, so for now, I’m going to cling to every stage and enjoy the ride. Each stage brings a new challenge, but so many new rewards. Motherhood is the hardest job out there, but it’s also the most gratifying.

I may not have those newborn snuggles anymore, but they’ve been replaced with hilarious banter between sisters, dance parties to music I never thought I’d tolerate, and nights spent going over homework. I also get 7-8 hours of sleep a night, and I love every second of it.

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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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