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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The Privilege of Music

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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The Road less Traveled; Things I Wish I’d Known About Having a Child with Down Syndrome

I remember my first World Down Syndrome Day like it was yesterday. I remember scrolling through my Facebook page wondering how all these families were so happy to have children with Down syndrome. I wasn’t there yet. I put on the silly socks. I faked my smile. I posted on social media. I went home and cried. I cried for the joy that I couldn’t find in this road less traveled. Today, is our third WDSD, and I want to tell the families out there that aren’t celebrating, that it’s okay. These are the things I wish I had known.

I wish I had realized that the doctor who delivered your diagnosis did not understand the beauty of raising a child with Down syndrome. I wish I wouldn’t have let the harshness of his words affect me in such a profound way. I wish I had known that the picture he was painting was with his brush, not ours. Where he saw different, I see wonderment. Where he saw delays, I see triumphs. Where he saw pain, I see love. Where he saw hardship, I see fulfillment. When he saw only your diagnosis and not the person you are, I saw a need for change.

I wish I had realized that sometimes a happy ending isn’t the way you pictured it, but that doesn’t mean you can’t find inspiration in what’s different. Sometimes the happy ending is even better than the one you dreamt up in your head. Sometimes the storms in our lives make us better people, and they give us an appreciation for all the things that other people take for granted. That kind of perspective is a rare gift.

Before you arrived, our life was chaotic and fast. You have forced us to slow down, and appreciate the beauty that comes from the road less traveled. I will never forget the pain I felt when you were born, but overcoming that hardship and celebrating the person you are, has added color to our world and fulfillment to our souls. The proverbial fork in the road doesn’t always have two choices. Sometimes, you build your own path.

I wish I had realized the meaning you would add to my life. Advocating for you has been one of our greatest blessings. Teaching others about how wonderful our lives are with you in it, fulfills me in a way I never imagined possible, in a way only other mothers on this journey can understand. I didn’t know that I would feel more at home in this community than I ever have. The friendships, the compassion, and understanding that live in this world are gifts that I treasure.

The girls and me teaching a first grade class about Down syndrome
Our friends at this year’s Buddy Walk

 

 

 

 

 

 

 

 

 

 

Your presence in your sister’s life is a blessing, not a curse. I wish I had known that having you as her sibling would make her even more kind and empathetic. I wish I had known that she would gravitate towards protecting you, all on her own, without me pushing. I wish I would have realized that sharing the spotlight with you would make her happy, not resentful. I wish I had been given a crystal ball saw that I could picture the smiles, the laughter, and the love that exists between the two of you. I wish I had realized that adults that have siblings with Down syndrome are grateful.

I wish I had realized the battles that still need to be fought for you and your peers. Before you arrived, I thought that every child in this country was provided with the therapies and assistance they needed to thrive. I didn’t realize that families had to fight for services, education, and assistance. I didn’t realize that adults with Down syndrome were lobbying for their rights. You have opened my eyes to the work that needs to be done to help others.

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