{i’m not sorry}

I love having a baby with Down Syndrome. Really, I do. Of course, we have some really hard days. As moms, don’t we all? We all face certain challenges with our kids that maybe we didn’t expect or anticipate. That’s part of being a mom. We can’t quantify our hards, meaning we can’t say my hard is harder than yours or vise versa. It’s all just plain hard. Different maybe, but hard.

Grocery shopping. Love it or hate it, that’s another part of being an adult. You gotta have food and my kids don’t like it when they are forced to eat brown rice and frozen veggies for a few days in a row because someone decided they didn’t want to adult for a few days and altogether avoided the grocery store.

It’s one of my favorite places to go. Yes, it’s a chore, but it always feels nice to get out of the house and get the things we need to nourish our bodies. I don’t mind taking the girls, but of course it’s easier when I’m alone. Inevitably, it turns into “mom get me this or that” and I leave feeling more exhausted than I did earlier that morning when I got out of bed after being woken up numerous times the night before by each child needing something different at every single hour of the night.

The clerks are always friendly, asking me about my day and not giving me too many annoyed looks when my kids start pulling the check stand out of the counter or climbing out of the front part of the cart into the back or yelling at me for one reason of the other. I love it when they engage in chitchat because for one moment out of that day, I feel human. Like an adult. Only to walk out the door, breakup the next fight, attempt to load all the kids and groceries into the car after trying to figure out where I parked.

I am very open about Bernadette. I appreciate when people engage me in conversations about her. It doesn’t bother me in the least bit. I know that it’s important to ask questions and I know that it’s also important to give space for the questions and answer them. I know not everyone always feels like answering questions, but I really do try to engage in conversation as much as I can. It was easier when Bernadette had her NG tube. Everyone would A L W A Y S ask me why I had put a sticker on her face. I would explain it was actually keeping her feeding tube in place and that would lead to a conversation about why she had a feeding tube in the first place.

Without the feeding tube, there have been less questions. I did recently though, have 2 conversations with different clerks at the grocery store about Bernadette having Down Syndrome that left me feeling uneasy. Mind you, I am in the very beginning of our journey with Bernadette. I am still in that awkward phase of wanting to talk about it but finding my voice and building my confidence. In time and with practice I know it will come. But for now, forgive my socially awkward attempts at sharing my story with you.

In both conversations it became known that I had a daughter with Down Syndrome. One was brought on by my girls talking with the clerk and the other because I was wearing my favorite hat from the littlest warrior shop that says Be Kind in ASL. In both conversations, once the clerks had learning my daughter had Down Syndrome, their faces dropped. Their smiles turned into frowns and the brows furrowed. I looked at each them, two different conversations, to completely different days, in two different cities, with confusion written all over my face. I could feel my eyes start widen and my heart start to beat a little faster, but confusion, that’s what came out of me.

Through their look of pity, they began to tell me that they were sorry. Sorry? You are sorry?

{All of this was inner dialogue because I was stunned and did not know what to say after this.}

In my heart, I wanted to say to them to not be sorry for me! I am not sorry my perfect baby has Down Syndrome, and you shouldn’t be either! Don’t look at me with pity, instead, smile at me. Look with tender eyes towards my daughter tucked in closely inside the carrier. But don’t offer condolences. I am not sorry! You should not be either!

Instead, I awkwardly smiled and continued on with how amazing Bernadette is and that I hoped they had a nice day. I walked out of the store and each time, it hit me like a ton of bricks.

People don’t know how to respond when I say my baby has Down Syndrome. I don’t know that the me prior to me having a baby with DS would have known how to react to me either. Would I tell myself sorry? I probably would have because I did not know any better!

And that is what kills me today. Because there is such a lack of acceptance or understanding for things or people that are different it automatically turns into this thing of sorrow. When really, Down syndrome is one of the B E S T things! There is no need to feel sorry for me!

I want my daughters to grow up knowing that being different is ok. That their sister is not something to feel ashamed of or sorry for. I want them to protect her, to love her from the depths of their hearts, to teach others that it is ok to have differences. I want them to know that Bernadette is just as much of a part of our family as they are. And although the society as a whole may not see her that way, we do. And we will fight to continue to change the perception of people with Down Syndrome.

Friends, I only tell you this from a mother’s heart. A heart who has been there from the early days of the diagnosis to living through life saving heart surgeries, to celebrating her first year of life. If you come across someone who has just received a DS diagnosis, hug them and say “Congratulations!” When you see a mama shopping with a babe who looks a little different with a tubie sticker stuck to her face, don’t be afraid to talk to that mama. She’s a mama, just like you.

I am not sorry I have Bernadette. Even with all that we have been through together. I am not sorry in the least bit.

 

9 thoughts on “{i’m not sorry}

  1. I love your perspective! I have a friend that recently gave birth to her son with DS and they are trying to get the same message out there…congratulate them don’t feel sorry for them. Unfortunately their little guy has a lot of health issues that have to be treated before he can leave the hospital. I feel sorry they have to be away from their baby not that their baby has DS.

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    • Thank you! Congratulations to your friends! They are in for an amazing journey! Bernadette had a harder start to life also, we were in the hospital for almost 2 months going through heart surgeries. Definitely hard days! She is doing so well now and is just the most wonderful addition to our family.

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  2. Trista, I love your heart. This quote, ” I am still in that awkward phase of wanting to talk about it but finding my voice and building my confidence. In time and with practice I know it will come.” completely sums me up too! I am right there with you, just in a different state. Keep on doing what you are doing, Bernadette is amazing. You are going to be featured on the T21 blog hop this week, thanks for sharing!

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  3. Pingback: T21 Blogger Community Hop #20 - Cedars Story

  4. I love this Trista! I feel like the grocery store is always where I get the most comments too. Usually they are positive, but sometimes I get the ” I’m sorry” or the look full of pity. It’s hard to know how to respond and I don’t always have a good answer. I loved what you said about raising your daughters to know that different is ok. I want to spread that message to my boys and our community. Different is just different, it’s not less than!

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