Down Syndrome, Inclusion, Kindness, Miscarriage, Motherhood, Parenting, Siblings, Therapy

Chaos Continued

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For the past 11 or so months, I’ve missed the busyness of our lives. I am not going to lie. The first few months of the pandemic were the reprieve I have long desired. I enjoyed the stillness of time spent in the backyard, scavenger hunts on walks, and the hum of virtual school background as our days stretched into months. Then those days became more stressful. I watched Sienna’s development fall behind and Haley’s anxiety escalate. We were all ready to resume our lives.

After Jason and I were fully vaccinated, we decided it was time to do just that. Sienna’s preschool opened. We chose to send Haley back to in person learning. We resumed in person activities and therapies. I immediately saw a difference in both girls. Sienna is talking more. She is playing appropriately with toys rather than stimming. Haley, for the most part, has a lightness in her step I haven’t seen in over a year. Jason began traveling again and is gone during the week. And here I am, holding down the fort. While in quarantine, I started some volunteer work which has almost become a part time job now. I am enjoying it, but it’s advocacy and it’s time consuming. I forgot about the chaos of our days, and how sometimes those days have the power to break me. The story I am about to share is about a day I recently did break.

I was in the midst of picking up Sienna from school. I had to rush to get her lunch, so that we could make the mad dash to the pediatrician for an eye infection, then it was off to get Haley from school, and get to PT as quickly as possible. I also had a zoom meeting scheduled that evening, and Jason was out of town. My phone rang. It was a neighbor calling to ask a simple question, The conversation was friendly enough and my neighbor asked how I was doing. Truthfully, this was a really rough week and I wasn’t doing well. I didn’t say that, but I said that I was struggling to come to grips with the continued chaos of our lives.

He then said to me, “You know what, though? That’s all on your terms. It could be a lot worse. You could have a job and have to be at a desk all day.”

I was so taken aback. I said, “Well, I consider what I do work.” He then said, “Oh that’s fun work. What you do everyday is fun.”

I cannot explain how angry this made me. I quickly made an excuse to get off the phone. Tears filled my eyes as I raced to get to school on time. It stuck with me though. All day it stuck with me. Fun work.

At the pediatrician as I restrained Sienna so they could examine her eye, I thought, is this fun? Racing to pick up Haley from school and get to Sienna’s therapy appointment, as my blood pressure rose, I again thought…is this fun? While there and watching Sienna struggle to do things that come so naturally to other kids, I thought…is this fun? Is this life on my terms? As we got home and I rushed to do the laundry, cook them dinner, do their bedtime routines, and get them in bed so I could moderate a zoom meeting for the DS community, I thought…is this fun? Anyone who has small children knows that very few things are on your terms at this stage.

I want to make something very clear. I respect working women with all my heart. I really do. I wish the world respected stay at home moms. When I worked, I had time to schedule doctor’s appointments for myself. I could enjoy a cup of coffee at my desk while working in peace. I could chit chat with other adults and not worry about a child injuring themselves. I could do things for me. I enjoyed it. I ultimately made the best decision for our family. Jason’s career led him to traveling during the week and my heart led me to being home with Haley full time. Those first couple years of her life were some of the best of mine. I endured four miscarriages, but I had my girl to pick me up. The miscarriages also weren’t on my terms.

I reflected on that call, and thought there was no point in dwelling on it, but I am sharing it today, so that maybe you can learn from my neighbor’s mistake. Never assume you know what a person is going through. We all have burdens and some carry them more gracefully than others.

There is an “extra” in this life. Things can be extra hard. Emotions can take over, and that can take a toll. During those still days, I wasn’t watching Sienna next to other kids her age. I wasn’t comparing her with others. There was peace in that, and readjusting to that has not come easily to me. I am not proud to say that, but it’s the way it is.

But that same day, something miraculous happened during Sienna’s therapy session. Haley participated in the session and rode a scooter down the halls. Sienna was trying fervently to do the same thing watching her in awe. I watched her cry as we pushed her, and made her forge on. It broke my heart to challenge her and watch her struggle, but her therapist knew she could do it, and I knew I could trust her therapist. I was certain this was going to be a a failed mission, but then Sienna did what she always does. She proved that she was capable. Her sister being there motivated her. I got to witness a small miracle. Tears filled my eyes for the second time that day on the way home from therapy. That moment right there makes the extra worth it. There is so much beauty in this journey. I would not change my life for anything. I am grateful for the perspective I have been given and the small celebrations and miracles I get to witness every day.

Sienna’s therapist assists her trying to ride a scooter, while Haley rides one to the right of her.

I am happy to say that I am now adjusting to the continued chaos of our lives. The muscle memory was there. I just needed to find it. Our days are flying by, but watching my girls soar as we race from place to place is a gift. I wouldn’t have it any other way. I guess some days it is actually fun.

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Down Syndrome, Girl Power, Inclusion, Motherhood, Siblings

The Magic of Siblings

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“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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Breastfeeding, Down Syndrome, Girl Power, Miscarriage, Motherhood, Siblings

Pregnancy and Newborn Amnesia

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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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