As part of my #29DaysofAwareness campaign, I will continue to share all things related to my journey as a parent of a child with Down Syndrome. Down Syndrome Consciousness Month gets an extra day in 2016 because it’s a leap year, and I couldn’t be happier to add an additional post to my roster.
One of the things that I have loved about my journey as Gelli’s momma is all of the other amazing parents I have come across through the different communities I am part of.
I have already written about (on quite a few occasions) about how important DSAPI was in helping Nino and I map out a plan of care for Gelli when she was a peanut. Starting with the Early Intervention Seminar was the best thing we could do to ensure proper care and development of our little one.
Best Buddies is an organization which furthers inclusion here in the Philippines. Together with school chapters, faculty advisors, volunteers, the Citizens group, and of course the students all involved, we are forging ahead one friendship at a time.
The online community has been a source of comfort for me. Being from New York, I have often looked to social media as a way of keeping in touch with family and friends back home. When Gelli was born, social media became so much more than that for me. It became a way to tap other moms for help and questions that I had in our everyday life. Just like I look for inspiration in packing lunches for the kids through searching hashtags, I look to twitter for the current studies and news regarding Down Syndrome and Special Needs.
Through Facebook, I discovered The Down Syndrome Diary.
Screen Shot: The Down Syndrome Diary
And of course with the help of the internet, I found the Momma BEHIND The Down Syndrome Diary. Jamie Freeman is Ben’s Momma. She pens the blog Ben Through it All. And she is brilliant.
Screen Shot: Ben Through It All
Jamie’s idea was simple. She remembered being hit with a ton of medical terms when she was handed Ben’s diagnosis. Jamie was given Ben’s diagnosis while he was in utero so she had time to let it all sink in. She shares very frankly how hard it was to accept that her son had Down Syndrome. Her story is honest and comforting to read, even if I know our diagnoses were handed to us differently. You can read about her story here.
Jamie wanted to try and give someone else who might be handed the same diagnosis of Trisomy 21 something a little different.
The vision of the diary, when it is full, is to have it published for new parents that have just received a diagnosis to receive. We are pouring our hearts into these stories with the hopes that someone might find comfort in our words as they are being bombarded with medical terms.
If knowledge is power.
Shared stories are comfort.
I once read somewhere (or maybe it was in one of the talks that I attended,) that our “Stories tied together is our LIFE.”
We share our stories with others and we connect. Most of the time, you benefit greatly from sharing. I know for sure, I have always benefited when someone is open enough to their story with me.
It’s that gift of perspective that I have often referred to here on the blog as well.
Y’all know what I’m referring to, right?
So, imagine how different the experience would be if you received a diagnosis with a plethora of stories all written by loved ones whose lives were changed by an extra chromosome FOR THE BETTER?
Photo Credit: The Down Syndrome Diary. Check out Tara’s blog Happy Soul Project.
So, the moment I found the Facebook page I sent a private message to Jamie in the hopes that I could be a part of this diary that was circling the globe. When she responded, I couldn’t have been more disappointed. The DSD had already had so many story tellers that she had to turn people away. There was no way that all of the volunteer story tellers could fit in that one beautiful leather bound diary after all.
Luckily, for me, when I broached the subject of possibly starting another diary in another country where we could fill in our entries in Tagalog and various dialects that are prevalent in the different provinces here in the Philippines, Jamie was open to the idea.
Together, we thought it would be a wonderful opportunity for Filipino parents and siblings to be able to share their experiences in whichever language they felt comfortable writing in.
Jamie and I skyped, messaged, and visited with each other Facebook. She planned an awesome Halloween fundraiser so that she could buy all the leather bound journals to send out to all over the world. She has already started pursuing The Down Syndrome Diary Non Profit Status in the U.S. to further her cause of storytelling.
To date, Jamie has had thousands of requests from parents to be a part of this amazing endeavor.
And we are so lucky we can be part of it all….right…here…
I was so excited to open my package when I returned home from Cebu with Nino. I was so emotional, I cried.
Thank you Jamie for inspiring us to share our stories if for nothing else, than to help one another.
I can’t wait to read all of the beautiful stories we have to share right here, in the Philippines.
If you’d like to learn more about The Down Syndrome Diary visit the website or the Facebook page.
If you’d like to learn more about The Down Syndrome Diary Philippines check out the Facebook page.
I can’t wait to sit down with this diary and write just a small piece of Gelli’s story which is so intertwined with mine. Even more so, I can’t wait to pass it on to other mommas and poppas who might want to share their stories too…It’s going to be beautiful.
Would you like to take part in this endeavor with me? Please let me know by commenting below or sending us a message on The Down Syndrome Diary Philippines Facebook page.
