Friday, May 9, 2014
I am first and foremost a mom who really misses her daughter. 
~ Cameron's Mom, Blyth Lord  
Mother's Day, Dragon Style     
Badass women who are visions of beauty and strength.

This Sunday, mothers will be celebrated and honored for all they do to love and care for their cherished children. For the families of NTSAD, this holiday is a minefield of emotions and heartache.

Mothers
that have lost their child(ren) physically ache to hold their baby one more time and struggle with their identity as a mother and parent.

Mothers caring for their medically fragile child(ren) force themselves to live in the moment and remember every tiny detail, never knowing if this will be the last Mother's Day with their affected child. All while carrying immense grief for all that was lost on diagnosis day.

Mothers with adult child(ren) living with Late Onset Tay-Sachs agonize about their future and what will happen when mom and dad are no longer able to provide the same care and support.

All these women are Dragon Moms! A moniker bestowed on the parents of NTSAD by Ronan's mom, Emily Rapp in her Little Seal blog and appeared in the New York Times Sunday Review. Throughout this issue of Topic of the Week are stories of Dragon Moms in all shapes and forms demonstrating everyday what it means to be badass women who are visions of beauty and strength.

Tribute to Mother with Late Onset Tay-Sachs 
Susan with her daughter, Carolyn 
Linda and Carolyn Spiro wrote this beautiful submission about their mom, Susan, to ABC's Kelly and Michael contest of special moms. Even though she did not win the contest, Susan feels her daughters' heartfelt words are the most cherished prize!  

Our mom is the most extraordinary woman I know. She embodies the combined strength and resilience of her mother and father, two Holocaust survivors who endured unspeakable hardships. Growing up in Brooklyn with her parents and sister, our mom knew loss much too early, having lost both sets of grandparents and aunts, uncles, and cousins in concentration camps. Our grandparents were incredibly hard-working and embodied the survivor spirit, which they clearly passed down to my mother.

As if my mother's family did not struggle enough, my mother was diagnosed with a neurodegenerative disorder when she was only 26. Much later, we found out she has Late-Onset Tay Sachs, a rare disease that leads to progressive loss of muscle functioning. While my mother has struggled with her disability my whole life, she has taken on every possible role as a mother and given everything to her children and her family. While she has survived multiple harrowing falls which resulted in emergency surgeries and stays in physical rehabilitation centers,  she has always fought to stay independent and strong as long as possible, cooking, cleaning, and staying active, never wanting to "bother" anyone by complaining or asking for help. In the meantime, she has listened to us complain and cry about countless issues growing up, be it boys, school, stress at work; never once did she minimize any of them that seem so small in comparison to her own struggles. Even as her disease progressed, one of her favorite activities was attending her favorite talk shows, including Regis & Kelly! For her safety, our mother spends most of her time in her apartment while my father is at work and my sister and I are busy attending graduate school full time, both earning our doctorates in clinical psychology. 

One of her favorite activities to cope with this is watching her favorite talk shows, including Kelly and Michael! We have been so grateful for the joy that your show has brought to her. We grew up watching Regis with our mom; she is a devoted viewer and has watched daily for as long as I can remember. Our mom is a ray of sunshine in everyone's day; she exudes constant positivity and always wears her radiant smile that lights up the room. Our mom would literally give the sweater off her back to a stranger and would spend any amount of time, effort, and energy to make someone's day. She deserves some recognition for all that she does for the people around her, and nothing would make her happier than having the opportunity to appear on a show that she has been devoted to for many years.


Courageous Parents Network 
Empowering parents caring for children with life-limiting illness 


From Founder and Executive Director Blyth Lord


The mission and goals of Courageous Parents Network originate in my experience parenting my daughter Cameron following her diagnosis of Tay-Sachs at the age of six-months. My nephew Hayden- Cameron's first cousin-was also diagnosed with Tay-Sachs disease, one month before Cameron's diagnosis, when he was 18 months old. Hayden and Cameron's fathers are identical twins who both married carriers-women who were, also, best friends in college. The twins' genetic mutation had never been seen before, and the likelihood of these two brothers marrying carriers and having affected children was 1 in 80,000,000. What happened in our family was a statistical near-impossibility-two brothers, two wives, and two babies affected with a rare disease that would die before the age of 3. But, in its way, it made everything that followed possible.

My husband Charlie and I and our brother and sister-in-law, Tim and Alison, were traveling together on the devastating road towards our respective children's deaths; but we were also traveling the distance together to figure out how to cope. Our children would be beloved. We would give them the best lives possible and then prepare to give them the best deaths possible. And we would pray that we survived.

We did more than survive. Despite the profound sadness of watching our beautiful daughter lose all cognitive and physical abilities, Charlie and I were able to live fully into her short life. Despite the fear we had of losing her, we were prepared to accept, face and allow her pending death. And despite the Whoosh that poured from our life and our home when we watched her die, we were able to heal and, in time, emerge from the dark fog of grief that surrounded our family.

How was this possible? Click here to read the three essential elements Blyth credits and how Courageous Parents Network is bringing these phenomena to other families. And be sure to visit Blyth's exquisite blog.  
DragonDragon Mothers
Badass women who are visions of beauty and strength. 
Last photographed smile 

No Tiger Mothers here. These are Dragon Mothers - creatures of myth and legend. Loyal. Tough. Impossible to cage. Scaly when they need to be. Raw. As persuasive and straight-talking as any trial lawyer. As flexible and creative as any top executive. Women who don't give in to magical thinking but who work magic regardless. Women who resist suggestions to put their children in institutions. Women who will not be ignored and who will not let their children's lives be ignored, or diminished, or passed over or forgotten. Women who remember. Women who know that love is a commitment made and re-made in the smallest moments, sometimes the ugliest ones. Ballsy and fast-talking. Contemplative and endlessly kind. Women who have looked straight into despair with one beastly eye and gone straight for it. Women breathing fire into the face of grief. Women who rage and comfort. Women who keen and howl and then get on with the business of dinner, errands, groceries, jobs, the future. Women who travel in strong, winging packs through a tangled and dangerous and dark and seemingly endless wilderness that most people would never have the guts to enter, let alone come out on the other side, scathed, yes; broken, yes; but alive, yes, even when their children have died. Badass women who are visions of beauty and strength. ~ Emily Rapp

Click here to visit Little Seal blog.
Click here to learn more about her beautiful book, The Still Point of the Turning World.
My Mom is a Dragon Mom
By Kim Kubilus

My mom is a dragon mom. She lost her two first born children, my two older brothers, Kevin and David to a rare genetic disease. I've watched her breath fire, repel thoughtless comments with her tough armor of scales, crumble under her unimaginable grief and then pick herself up to take care of me. I am deeply grateful to Emily Rapp for sharing her story and, in a way, my mom's. Because of the strength, compassion and courage my mom instilled in me I am now the director of family services for NTSAD. Our incredible network of dragon parents is there for each other without judgment, question or hesitation. It is truly humbling to watch a mother holding her dying child in her arms open her heart to another mother, a total stranger, offering understanding and friendship.
Mothering Cal 
What I learned from parenting a terminally child
By Maria Kefalas 
 
I have three beautiful children, the oldest two, who are 9 and 13 years old, excel at school and run track and play baseball and have friends. Their teachers tell my husband and me these children are kind and empathetic and smart and filled with promise. And yet, even though I have been a mother for more than a decade and I have written an influential book about motherhood and have been called a nationally recognized expert on families in the United States, I didn't know anything about love and sacrifice and children and mothering until last year when the doctors at the finest children's hospital on the planet told me that my youngest child, who was 2 years old at the time, was dying.

Click here to read the full article on Slate.  

 

 

 

 

  
  
Susan Kahn, Executive Director (skahn@ntsad.org)
Joan Lawrence, Director of Donor Relations & Individual Giving (joan@ntsad.org)
Kim Kubilus, Director of Family Services (kim@ntsad.org)
Diana Pangonis, Communications Manager (diana@ntsad.org)
Ingrid Miller, Office Manager (ingrid@ntsad.org)
  

 National Tay-Sachs &

Allied Diseases Association

 

2001 Beacon Street, Suite 204

Boston, Massachusetts 02135

(617) 277-4463

 

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