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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When Haley Met “Julia”

As some of you know, we recently went on vacation in Jamaica and spent time at Beaches Ocho Rios. Beaches is owned and operated by Sandals and they have a partnership with Sesame Street. A beautiful highlight from our vacation was the character breakfast. For all the reasons you’d expect, but also because I experienced one of those rare mom moments that instantly fill your eyes with tears and your soul with warmth.

I have always been a fan of Sesame Street. When I introduced my children to television, this is where it all began. Sienna and Haley both learned their letters and numbers at an early age, and while I did spend a great deal of time working with them on that, Sesame reinforced what I was already teaching. They also demonstrate valuable lessons about kindness, friendship, and acceptance. Plus, unlike some of the other crap cartoons out there, I actually don’t mind watching it. I also feel less guilty hoping my kids are gaining something from screen time.

Haley fell in love with Sesame all over again when her sister started to watch it. She’s in kindergarten now, so some of the life lessons apply more now versus when she was 2, and it went over her head. Sesame recently introduced the character, Julia, and she just happens to have autism. I was thrilled when they announced her as an addition to the show, and I could not wait to see how they portrayed her. Like everything Sesame does, they handled it with grace and beauty. If you know me, you know that I strongly believe that when we normalize differences from an early age, it lays the foundation for a better future for all of us. Kids learn empathy, and they also learn not to pity children of different abilities. That’s an important distinction and one that was not a part of my childhood. Haley had lots of questions during that first episode with Julia. Some were easy to address and others were tough, but Haley immediately drew the connection between Julia and Sienna. At one point she said, “So Julia works a little different, just like my sister, right?” My heart swelled with pride and I said yes, but stressed that Julia is more alike than she is different, just like Sienna. And that was that.

The day of the Thanksgiving Macy’s Day Parade, Haley immediately noticed Julia wearing headphones on the float, and asked if it had to do with her aversion to loud noises. She’s noticing things and reflecting, which will lead to compassion and understanding at a future moment in time. Sesame opened the door to meaningful dialogue. I picture families with typically developing children having these same conversations and my heart bursts, because we are evolving.

The character breakfast worked like they all do…..character plates, party bags, Cookie Monster cupcakes, photo opportunities with all the characters, a dance party, everything you’d expect, except for one part.

The host made an announcement to the children letting them know that Julia was about to join us for breakfast. He explained that Julia has autism and went on further to explain some of what that meant. He asked if all the children would clap quietly when she entered, because she didn’t like loud noises. He also said that Julia gives the best hugs. He asked if any of the kids would volunteer to receive one, but they’d have to ask for her permission first. Haley’s arm shot up in the sky and when I looked around the room I realized she was the only one.

They welcomed her up, and she knew exactly what to do. She asked Julia if it was okay and when she was given the green light, her arms wrapped around her. She came back to our table confirming that Julia did indeed give the best hugs. She asked if she could get one of the Julia dolls because she wanted to snuggle with her every night. Big mom tears filled my eyes, and I, of course, said yes. In every picture from the breakfast, Haley is proudly holding her Julia doll.

Haley and her new Julia doll

I’m not saying it’s as simple as watching an episode of Sesame Street, and boom your kid understands what it means to be autistic. I am saying that it was a starting point for us. It’s an ongoing conversation, and I always tell Haley that I don’t have all the answers, but I encourage her to keep asking them and we can learn together.

I think we, as adults, hesitate to discuss this stuff with our kids, out of fear that we will say the wrong thing. We need to dispel those fears, because our kids pick up on them. In my experience, the difficult conversations have led to some of the most satisfying moments in parenthood. Watching your child evolve into a good human being is rewarding. As a mom of a child with unique abilities, I can promise you that I won’t get offended if your kid and you stumble along the way to understanding. I’ll always do my best to help if I can.

Sometimes we choose the path of least resistance because it’s what’s easiest, but life isn’t easy. It’s complicated and so are all of the people living in it. I challenge you to start a dialogue with your kids about differences. You might be surprised by their sheer brilliance and the profound questions they ask, and you might find yourself watching your kid hugging someone like Julia, and if you’re like me your eyes might fill with huge tears of pride.

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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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