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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Down Syndrome, Girl Power, Motherhood

Managing a Life of Chaos

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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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Down Syndrome, Girl Power, Inclusion, Medicaid, Motherhood, Parenting, Therapy

The Privilege of Music

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When I reflect back on my life experiences and think of some of my biggest joys and most devastating heartbreaks, I remember turning to one thing to celebrate, and at times immerse myself in grief. Music.

Music is an intrinsic part of all of us. The range of emotions that can be found in a song help us process our feelings. Rhythm and pulse can be found in our heartbeat, and our breathing and movement. Melody is created in our laughing, crying, screaming, or singing. Our feelings can be processed and held within the rhythms and harmonies of different musical styles. These intimate connections with music remain despite our abilities intellectually or physically, and are not dependent on musical training.

Because of this, it makes sense that music therapy would offer numerous opportunities to teach children an array of things. As babies, when Sienna or Haley were upset or struggled to communicate their feelings, I turned to music. It has been the number one tool in my parenting kit.

As Sienna evolved in her therapeutic needs, I realized that I should be capitalizing on her love of music. When she is struggling to grasp a concept, I find a way to make it into a song and inevitably, she grasps the concept over time. She pays more attention. She smiles and listens. It garners her focus. For this reason, I chose to start weekly music therapy, despite the fact that our insurance carrier and Medicaid do not see the value in it. We pay out of pocket for a therapist to come to our home on a weekly basis. We started these sessions in March. Since then, Sienna’s vocabulary has expanded. The clarity of her speech has been enhanced. She is starting to understand colors. She is picking up various objects and turning them into musical instruments. I can understand every word she says while singing.

Music therapists can use music to help with a wide variety of needs ranging from learning difficulties, mental illness, abuse, stress, or illness. Music therapy can support the development of children in many ways. Music, in all its forms, can provide expression and pleasure at all ages. There is a great opportunity to use music in a planned way to help children and adults to improve their spoken language.

 

Yet, most insurance companies will not approve it. Our federal government aims to take services away from our children, when truly we should be adding services. Medicaid is on the verge of change. It’s looming. Every day, I wake up terrified of what the news will say about the programs my daughter utilizes. I watch her grow developmentally, with the aid of her services. When she is an adult, she will be a valuable member of society. She will contribute and I will make sure of that. I will fight and advocate to get her everything she needs, but I need your help. I need to spread this message to our senators, congressmen and women, and our political leaders.It benefits us all to give children the services they need now, so that they won’t be dependent on the government as they mature. I hope that this is something we can all agree on, regardless of political affiliations. Children are our future, and they should be given the resources they need. I realize that I come from a place of privilege and that is the reason that Sienna is succeeding. Not all families are that lucky.

For local families interested, we currently work with Allison Broaddrick of Three Rivers Music Therapy. She is a fantastic resource. If you are interested in learning more about what she offers, reach out to me and I will share her contact information with you.

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