The #NotDEAFeted Deaf Awareness campaign opened up a whole new wold to Laz and I. We were planning on making others aware and sharing information, little did we know we’ll be the ones being schooled. We’ve learnt so much from the people reaching out to us. Thanks to hash tagging and this awesome woman commenting “Hi Ruth” on the #SignYourName clip I uploaded on Instagram… (of cause I wasn’t gonna let her say hello and get away with it, so we ended up stalking each other for a while and upon my investigation,) I found the most beautiful story and I just had to share it with all of you.

It’s about this really cool family from New Mexico USA, who started this organization  The JadeDragonFly  …read on as Dee lets you in on how it came about. I was also privileged enough to ask her a few questions. Hopefully we’ll get to meet them face to face one day.

 

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We had a rough start. In 2007 we suffered a miscarriage. The loss nearly broke me. I was devastated in a way I had never experienced. I knew something was wrong, but I wasn’t heard by medical professionals. Mostly, I felt like I was being silenced and swept to the side because the pain I carried around with me was too great for everyone else to bear, yet I was the one who carried death in my womb. I couldn’t be around friends who were getting pregnant or having babies, I love babies. I listened to people try and comfort me by saying things like “at least you know you can get pregnant” or “you can have more, you’re still so young’ … but we loved THAT baby, THAT little spirit that would have been born in 2008.

 

In March 2009, our daughter Phoebe arrived with a cleft palate and hearing loss. We spent five long days in the hospital being told of the doom and gloom that would befall us. We were terrified. We didn’t have a moment to just enjoy our new little girl. I then hit my limit with medical professionals and their lack of empathy towards us, after all it’s just a job to them. I protested another night’s stay in the hospital and forbade anyone to enter the room unless they had discharge papers in their hands.

We needed a little reprieve, some room to breathe. We just wanted to finally enjoy out little girl with the sweetest soul. She wasn’t a replacement for the one we lost, she was her own kind of magic. I will spare you the roller coaster ride we were on, trying to find assistance, build a village and learning to be parents all at once. We were dealing with so much at one time for this special little girl, who would soon take us on the most amazing and unexpected journey to becoming better people.

 

In between Phoebe adventures, we welcomed a sly little Fox who brought with him boundless energy and kindness. He made his appearance in a short and rather explosive labor. He has been sharp and full of life since the day he arrived. He keeps us going mentally and physically.

In April 2013, we were finally able to get some genetics testing done on Phoebe. I feared every result. Although most came out fine or normal, we found out Phoebe had a rare genetic syndrome called Recombinant 8. Which was the answer for the other delays, cleft palate and deafness. A very familiar kind of panic crept into my heart and latched onto my soul.

On Christmas day 2013, the thing we feared most slapped us hard and to the core without warning. Our Star did not wake up from her slumber. That was our very sudden reality, a moment that will be seared into our beings for the rest of our days. Our son Fox, who was two at the time, myself and my husband were suddenly lost in the vast abyss of an unknown, unsecure future.

 

 

When and why did you learn to sign?

I learned the manual alphabet and some simple signs (shower, eat, play, yes, no , friend) from a boy in a group home that my father worked in when I was round eight years old. I didn’t have the opportunity to continue to learn at that time, but the experience stuck with me. Fast forward to 2009, I gave birth to Phoebe. The doctors didn’t say outright that she was Deaf, only that we needed to have her hearing checked again because she had failed her hearing screen three times. American Sign Language was always an option. Finding classes was a whole other thing, but I wanted to communicate with my baby and I wanted her to be able to communicate with me.

 

Who taught you, and whom of your family members were willing to learn ASL with you?

We are fortunate to live in a town that has an amazing School for the Deaf. Getting information and connected with the school was slow at first. We had a Deaf Mentor who came to our home twice a week for visits and signed only. We (my husband and I) took classes on Tuesday nights at the Deaf school. I also returned to college to take more ASL classes. I learned from our Deaf Community, watched many videos to enhance my receptive skills. I used ASL at every opportunity I had. There were only a handful of family members who were willing to learn. Even fewer of that number continued to learn after taking one session of the classes.

What is the story behind #DancingWithPhoebe ?

My friends from college (Forest & Gino Roy) started #dancingwithphoebe as a way to show their love and support for me and my family when Phoebe died. Phoebe LOVED music, even though she was Deaf. I used to sign songs for her almost every day. She also loved to dance… She was always dancing.

 

Why are you and your family still using sign language?

I still use sign language because of LOVE. Plain and simple LOVE. We are still attached to almost all of our friends from Phoebe’s school. Her teachers were and still are my friends, family really. I still have people to sign with. I advocate strongly for hearing parents to sign with their deaf/ hard of hearing children. My two living children (Fox 5, Stella 1) have benefited very much from the use of ASL.  And, YES YES YES I still sign because of Phoebe. I miss her every single day, I will sign until I can’t sign anymore to honor her legacy.

 

 

The purpose of  TheJadeDragonFly is to support the WHOLE family. We, as a family who knows what grief can do to the well being of family units, are committed to providing content relevant to our own experiences and sharing the experiences of others who are on the same journey.

In addition, we post content related to various subjects. Because not only are we grieving, we are still raising living children. Our daughter, Phoebe Jade, inspired in me the purpose of teaching my children at home. So in her honor, this site was born. If you’d like to read more of our story please visit our website.

We hope that you find comfort, creativity and peace on this journey of healing with us.

~With Gratitude~
The Jade Dragonfly Family

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