The Beauty in Connecting With Other Moms in the Down Syndrome Community


Yesterday was a sweet reminder of the importance of connecting with other moms! Although everyone has a unique journey that has a special purpose, similarities in circumstances, beliefs and experiences can begin a lifelong bond.

After our prenatal diagnosis, while in the hospital to deliver our third beautiful daughter, and even during all of our routine checkups with our pediatrician, we were never given any information (other than worst-case scenarios) about Down syndrome. We were never directed to support groups to gather positive stories that may encourage us with hope. We were never provided with resources that are available to greatly help our children, such as occupational therapy, physical therapy and speech therapy. We were never even given a brochure or told exactly what Down syndrome is. Unfortunately, this is the common story I have heard from other moms.

My only resources were Google and WebMD. Yikes! I found myself having such moments of desperation to know our unborn daughter would be OK.

I slowly began to find moms like me on Instagram that truly inspired me and continue to do so. Through Instagram, I was able to see so many beautiful children who have an extra chromosome. I saw families living life as usual and having amazing adventures together. That gave me hope.

 

One day, when our baby was about 6 months old, my husband saw a TV show during which a lady named Nancy Gianni was interviewed. She is the founder of GiGi’s Playhouse, which is named after her daughter. GiGi’s Playhouse is an example of a positive resource! They provide weekly physical therapy for babies and toddlers and have various social classes that include activities and music. Most of all, this organization provides education and support for the entire family!

They have a location in Atlanta, which is only 90 minutes from where we live. We made plans to go that very weekend. We finally felt there may be a place for us!

When we arrived at GiGi’s Playhouse and began to talk to other parents, we were directed to another organization called Babies Can’t Wait. They also provide various local therapies for infants and toddlers with disabilities. Through Babies Can’t Wait, I made my first local contact with another mom of a child with a disability. (That is the pretty lady in the photo with me!) She has inspired me by making amazing baskets full of gifts, information and encouraging words. She then takes them to the hospital when notified about a family that has just had a precious little one like ours. We have an important mission to love, encourage and give hope.

How has the medical community dropped the ball in the matter of delivering positive feedback and hope during a diagnosis of DS? Lives are more than a medical book and statistics. Instead of pointing a finger, I feel it’s our duty to share our story to cheer the next one in line. We can also educate the medical community by sharing our story. Paving the way for others and advocating on behalf of our children can bless those who come behind us in countless ways. The question I ask myself and try to live by daily is, “What are some things I can I do to be the person I needed for someone else?”

I believe God has used this “journey within my journey” to open my eyes to a future I look forward to with hope and standing arm in arm with some wonderful newfound friends!

Cindy holding her daughter on her lap, with a mom and her daughter seated at the table as well

We want to hear your story. Become a Mighty contributor here.

TOPICS
JOIN THE CONVERSATION

Related to Down Syndrome

Cast of "Born This Way"

'Born This Way' Features Healthcare Choices and Self-Determination for People With Disabilities

Watch #BornThisWay on A&E, Tuesday, May 23 at 10/9c. Join RespectAbility for a live Twitter chat during the east coast broadcast using #BornThisWay and #BTWchat. Lauren Appelbaum is the communications director of RespectAbility, a nonprofit organization fighting stigmas and advancing opportunities for people with disabilities. Fully one-in-five Americans has a disability, and in many cases, [...]

One Year After Our Prenatal Diagnosis of Down Syndrome

March 1st, 2016 will forever be a turning point in my life. On this date, I heard the words “abnormal test results” for the Trisomy 21 portion of our prenatal screening test. If I had known, I wouldn’t have taken that call in the middle of the work day. Because Kara is so incredible, it’s [...]

Dr. Ice T is One Cool DJ!

Tyler Crose a.k.a. Dr. Ice T is a DJ who has Down syndrome. Read the full transcript: Dr. Ice T is one cool DJ! Tyler Crose, 36, is Dr. Ice T, a DJ with Down syndrome based in Clearwater, Fl. Crose became fascinated by DJs, after attending weddings as a child. He DJs private and [...]
Twin boys with blonde hair. One wears glasses and the other has Down syndrome.

Yes, My Son With Down Syndrome Can Go to College

I can see the headline now: “Twin Brothers Graduate Side-by-Side, Accepted at the Same College.” I can see my precious boys, now men, stepping onto the platform hand-in-hand, receiving their diplomas together. The year is 2031, and it’s the culmination of years of hard work, as well as the beginning of years of hard work [...]