So. Many. Acronyms.

“I didn’t understand any of that conversation.” My brother looks at me quizzically.

“Oh yeah. How come?” I ask him curiously.

“The acronyms. There are so many. It’s like another language.”

We just finished an Early Intervention IEP (Individualized Education Plan) planning meeting. Our coordinator just left. My brother is visiting for a few days to help us out. He’s been to all of Sienna’s therapies and meetings this week. This last one has his mind spinning and it brings me back to the hospital delivery room, moments after we received Sienna’s diagnosis.

The nurse started telling us about Medicaid and EI (Early Intervention). She said Sienna might have an ASD (Atrial Septal Defect). She mentioned PT, OT, DSAP, and somewhere along the line, she started saying DS. She mentioned the loophole program and SSI (Supplemental Security Income). Suddenly, her voice started to sound like the adults in a Charlie Brown episode. I stopped listening.

When you’ve been on this journey for a few years, you start to speak the acronym language. But when it’s brand new, it’s terrifying. Because of my experience, I think it’s one of the biggest mistakes people make when talking to a new mom in the community. You’re already scared and then people start saying DS, ASD, EI, PT, OT, SLT……..and you feel totally overwhelmed. I thought I would never understand this world.

When we got home from the hospital with Sienna, I found our local Down syndrome support Facebook group, which is full of veteran parents. It was defeating. I didn’t understand many of the posts. I was relieved to find DSDN (another acronym, right?). When I found them, I was connected with other moms. They were at the same stage as me. They had babies the same age as Sienna or a few months ahead. They were new to the acronyms too. I felt like I could ask questions without judgment.

I was actually lucky. My cousin works for Early Intervention in NJ. She started to translate for me. She drove to Pittsburgh to be at Sienna’s first EI evaluation. I didn’t speak therapy then. I only understood PT. Everything else was alien, but she told me it would become my new normal. She was right. It is now my new normal.

I have a message for new moms. Don’t let it scare you. I promise that one day it won’t feel this foreign and paralyzing. If someone speaks to you in acronyms, ask them to stop. Sometimes, we just need a reminder that it takes time to learn this language.

Focus on your baby. If you want to breastfeed, tackle that challenge. If your baby needs to gain weight, conquer that. All the other crap can wait. Take it one day, one obstacle, one snuggle at a time. The rest will come. You don’t need to know all of this immediately.

In the meantime, if you ever come across something you don’t understand, I am just a Facebook message away. I’d be happy to help you figure it out with zero judgment. DSDN (Down Syndrome Diagnosis Network) is a fantastic resource when it’s all so unfamiliar. There are other moms feeling the exact same way that you are feeling. You’ll bond with them, and you’ll slowly start to realize that this community isn’t as scary as you initially thought. To be connected with one of their online birth groups, visit here.

If you want to print out a list of common acronyms in our community, this website has a handy printout of all the terms.

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The Magic of Siblings

“What do they see, Mom? She’s the cutest baby ever. Why are they staring?” Haley looks frustrated as I begin to buckle her into her booster seat.

“I don’t know, honey. They just see someone different and they stare because they don’t understand.” I kiss Haley on the cheek and I climb into the driver’s seat.

“I still don’t understand. Just because her eyes are shaped like almonds. Everyone’s eyes are shaped different.” Her brow furrows and she looks out the window staring.

How do I explain this? I love that she looks at her sister and only sees her sister. She doesn’t see Down syndrome. She sees Sienna.

However, this will be impossible to avoid. When I carried Sienna into Girl Scouts today, I thought nothing of it. Then, I noticed all the older kids. This was, most likely, their first experience with someone like Sienna. They couldn’t help themselves, but I also watched my observant little kindergartner look at the older kids curiously. Her eyes followed their stares to her sweet little sister, Sienna.

I decided in that moment, during this conversation with Haley in the car, that it was time. It was time to call the school and ask if I could do a Down Syndrome awareness presentation. This is Haley’s school and her friends will have to understand some of Sienna’s challenges.

The presentation was a huge success. We taught kindergarten through sixth grade and I now watch those same Girl Scouts stare at Sienna with affection. They no longer feel the need to investigate her. They understand her muscle tone challenges. They know they don’t have to be afraid of differences. They realize she is more alike than different.

Some days, I wish the whole world could see Sienna through Haley’s lens. I think of how I first stared at my newborn baby girl. I didn’t know a thing about Down syndrome. The fear paralyzed me. Haley’s lens changed all of that. No one in Sienna’s life accepted her as earnestly as Haley. She was the first one to accept her, all of her, while us adults still struggled. It happened the moment she laid eyes on her. The day they met was magical.

The magic of their love is our greatest blessing. It’s a gift we get to witness every day. I used to worry that Sienna would take attention and affection away from Haley. During those first few moments of learning Sienna’s diagnosis and the doctor portraying everything so negatively, I blamed myself. I remember these words going through my head over and over, “I am the reason this happened. I destroyed my family. Life will never be the same.” Over and over those words danced in my head. It’s hard admitting that. Of course, I couldn’t have been more wrong.

Everything changed the next day when Haley entered our hospital room. She didn’t hesitate to give her love away. Not from the second she saw her baby sister. Her joy filled the entire room. I began to realize I was looking at everything wrong. Sienna was a gift. She was just a baby. She was a beautiful baby that I had much to learn about, but there was nothing to fear. She was just as much our baby as Haley had been. She was a piece of all of us.

Haley gave me the strength to move forward. She saved me from my fear. As I immersed myself in this new world, I began to realize that siblings in the Down Syndrome community were grateful. Sienna would make our life better. She would make us better people. Haley showed me that. Haley shows me that every day. She was Sienna’s first advocate.

Their bond continues to amaze me. They have an unbreakable connection that I cannot penetrate. Their emotions are one in the same. When one is sick, the other is depressed. When one is hurt, the other melts down in grief. When one is happy, the laughter fills our home. Haley is the most consistent feature in Sienna’s life. I wanted to pay homage to their love for each other.

I made this video as a tribute to them and all rockin’ siblings in the Down Syndrome community. What a gift we have been given!

 

 

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Managing a Life of Chaos

I cried at the dentist yesterday. I wasn’t in pain. I had never been to this dentist before. She looked at me, took me in, and said to me, “I can tell just by looking at you that you are completely overwhelmed. You look stressed out. Why haven’t you been to the dentist in the last three years?” The floodgates opened. Where to begin?

I want to preface this by saying that I love my life. I would not change a single thing about it, but lately I feel like I am running on empty. I’m drowning. I know that all of us live busy lives. Parenting is a juggling act. There is an extra set of worries, activities, and appointments that come with parenting a child with a disability. I have put myself on the back burner for a long time. We all do it. We are moms. We put ourselves last. It all came to a head for me recently. My health and my body finally told me to slow down.

This dentist brought up the fact that I have osteoporosis. She asked questions that no one has in a while. She asked how I was dealing with the back pain from carrying Sienna when I have had fractures. She asked when I had been to an endocrinologist, my PCP, and when I had my last bone density scan. It’s been years. She told me I looked thin and asked if I had lost weight. Spoiler alert; I have. I am not being dramatic when I say that I don’t have time to eat. When I am stressed out, I lose my appetite.

Every day, I wake up and there are at least 3 activities on our schedule. Sienna has 6 therapies per week, and all but one involve us leaving the house. She has extra checkups, tests, IEP meetings and doctor visits. Haley has camps, dance, playdates and piano lessons. She also was on Daniel Tiger this summer, which involved a series of auditions. I realize that these are activities I willingly signed up for, but I don’t want her to miss out on anything because her sister has a disability. If you’re a mom, you know what mom guilt feels like. All I can say is that having a child with a disability adds more guilt to your plate. More worries about everyone getting what they need, except you. I don’t know how to fix it. Every month I tell myself that next month I will get a break. Next month will be different, but it isn’t.

Right now, Sienna is getting her first nap of the week. This is my only break. My husband travels during the week, so this is my quiet time. I am actually writing on my computer instead of on the notes section of my phone. That’s how I write most of my blogs. In between therapies, moments in the car, in the grocery store, a thought will hit me and onto my phone I go. The notes section of my phone are the ramblings of a lunatic, but it’s my self care. I may not have time to fit in all the self care I had previously, but it’s something. Putting these thoughts out into the universe is the one therapy that I have. It’s mine. These are my words. My thoughts. My jigsaw puzzle of a life. One day, I will read these blog entries and wonder how I did it all.

I just want to take the time to say to all the moms that feel the same way that I do, you’re doing a great job. You may be completely overwhelmed, but you matter. You may show up to activities unshowered and stressed out, but you’re there. You may cry at a dentist appointment, but at least you got there. You may only get moments to yourself in a bathroom but cherish them. One of my dearest friends gave me an article last week titled, “The Highly Haphazard Woman” by Taffy Brodesser-Akner. She is my new spirit animal. I am gonna quote her, “They wanted to know how to do it, but only if it meant slowing down, doing one thing at a time, thinking one thought at a time(but sometimes none). They wanted predictability and to never know pain in the offing. That’s fair, I would say, but then you won’t accomplish that much.” To all the moms out there accomplishing small tasks every day, bravo.

 

 

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