When Gelli was first born, I had lots of friends reaching out to me from back home. After posting pictures on FB of Gelli’s baptism in the NICU, and asking for prayers for her healing, I received different messages from all over the world (both public and private) reaching out to offer comfort and prayers for her to be well.
Two people who reached out to me were my sorority sisters from Phi Sig.
Kelly Norton private messaged me and told me to find this blog by another momma who was gifted with an extra chromosome through her daughter a little less than two years before I gave birth to Gelli. This blogger, Kelle Hampton, of Enjoying the Small Things, had been blogging for years before her daughter, Nella was born. My sorority sister, Kelly, shared that maybe I would like to check out Enjoying the Small Things to try and find comfort in someone else’s experiences.
And I did.
Because that’s what it’s always been about for me. It’s always been about sharing bits and pieces of stories to somehow remember that we are all connected. When Gelli was first born. Nino and I felt completely disconnected from everyone and everything. We felt isolated. We felt more than alone. We felt like no one could understand the news that we were just given.
And when I started reading Kelle’s blog, I realized I wasn’t in it alone. Even if she was miles away in The Sunshine State, I felt like she was speaking to me. She was telling me that there would be challenges in what I was facing…but she was also telling me that I could find peace, and joy, and happiness with Gelli as my daughter.
While Gelli was in the NICU, and I was home at night pumping for her every two hours, I had the laptop near by…shining like the only light in that darkness, through which I was navigating. I explored all the different posts from all the different blogs that I was looking to for answers. Even though my world felt extremely small because of Gelli’s diagnosis, it became quite the opposite…I could choose to connect with Mommas all over the world with babies just like mine and open my world up…because I when I was reading everyone else’s stories, I was NOT alone.
Another sorority sister that reached out to me around that time was Samantha Parish. Her message to me was different. She shared with me that she had an uncle with Down Syndrome. She shared how her grandma was a pioneer at a time when children like her Uncle Joe were institutionalized. She fought to give her son a life outside of what the doctors prescribed for him…she knew she could give her son a life full of love and support…
Sam shared how her grandfather was very involved with ARC was established back where they lived, and how her life was so much more rich because she had an uncle with Down Syndrome.
Side note: In high school, much of the volunteer work that I did through my Interact Club was with ARC. For those of you who are not familiar with ARC, it is an organization that provides options for families as their loved ones grow older. They have smaller group homes where people with intellectual and developmental disabilities can live with assistance. ARC is an organization that has been fighting for rights, education, and fair treatment of people with intellectual and developmental disabilities since 1949.
She went on to say how her family wouldn’t be the same without him and how all through out her childhood she and her siblings loved spending time with her Uncle Joe. Sam closed her note with this:
Congrats on your newest family member! She looks like a sweetie and I wish you the best as you enjoy one of the most loving beings you will ever meet!
Here is what she sent me for her guest post 🙂
This is my Uncle Joe and I at his 50th birthday party in October of 2013.
Our whole family and many of his friends attended this awesome event. It was a party not to be missed….but it almost was.
My grandparents were told he would never walk, talk or function as a typical person and it was recommended he be institutionalized. Back in the early 60s when he was born, Down Syndrome was seen as a problem to swept under the rug, and something you wouldn’t want to be burdened with.
Thank God my grandparents had the foresight to say “To hell with that!” I can’t imagine having missed out on the love, laughter and life lessons learned from my uncle.
My grandparents raised him right along with his 5 older siblings. They fought so he could attend the same schools as his brothers and sisters (my mom, aunts and uncles.) I really do have the fondest memories of growing up with him. My sister, younger brother, and I adored, and continue to adore him. He was the most fun and I now have the pleasure of watching my kids get to love him and play with him just as I did as a child.
He loves unconditionally.
He laughs and makes us laugh with his humor and sarcasm.
He loves family and being social with his Arc friends and community.
He enjoys bowling, going to the movies, working for a local factory and above all, he loves the Washington Redskins!
Thanks Sam for sharing Uncle Joe with me. I couldn’t fully appreciate everything you shared with me back then, but I certainly do now.
Peter Ressa says
When we found out Ellie would have Down syndrome, our neighbor shared about his younger brother, who also has DS. His words made a huge difference.
I’m not sure if I would have changed the fact that I did not know. I go back and forth about what I think I would have been able to handle better…Of course I realize everything happens for a reason and that’s why I didn’t push for any of the tests here in Manila, that I knew were required by law back home. But one thing I do know, is that talking or typing, or emailing or reading about anyone else’s story was a huge help to me in that first year….shucks…it still helps me now.