Hello All - it is time for me to say goodbye to HOIDSA as our family is moving to Texas this coming Summer for a new job opportunity. I have been serving on HOIDSA's board since January 2019. During that time I have served various roles...general board member, secretary, and most recently vice-president. During my volunteering, I have helped with various social events, welcomed new parents and babies, and prepared the newsletters. This will be my final newsletter, and therefore I wanted to take the opportunity to thank HOIDSA for being such an amazing support to my family and I since we had our son (Cruz) with Down syndrome in 2018.
I will never forget the day that I first learned that he would likely have Down syndrome. It was October 24, 2017 and I was just 11 weeks pregnant with my 3rd baby. I had been anxiously awaiting the news that the test results were in so we could do a gender reveal...I was so excited for the chance of having a girl after having 2 boys. So on that Tuesday afternoon, I got a call from my doctor herself. She told me that the results showed that our baby was high risk to have Trisomy 21. I felt so lost, confused, and scared.
I quickly drove home from work, and did a google search "Down syndrome in Peoria, IL". Thankfully HOIDSA's website came up and I called their phone number. A nice lady answered the phone and I said "I just found out that my unborn baby will likely have Down syndrome and I don't know what to do". I remember being greeted with such gentle kindness and understanding. The nice lady took my contact information, and said that she would have another mom that had also experienced a prenatal diagnosis call me. Later that evening, that mom called me and walked me through her diagnosis story and shared some resources with my husband and me. She also connected me with another local mom that lived just 5 mins away, and had a 3 year old son with Down syndrome. A couple days later, I went over to that mom's house and met her little boy. He was the first person with Down syndrome that I had actually been around, and I remember noticing that he was just like any other little 3 year old boy that loved his mother. Even though I cried during most of that visit and frankly that whole week, the people of HOIDSA really helped me during those early days of my journey to feel less alone and to realize that although things were going to be different than planned, we would be okay!
Since those early days, I continued to meet several other amazing people through HOIDSA. They helped me to learn about Down syndrome, connected me to other local and national resources, and answered my questions around education and inclusion. My family has also benefited from several of HOIDSA's generous programming including inclusive activity stipends, family conference stipends, and an adoption grant. Additionally, our family attended several HOIDSA social events throughout the years...the spaghetti dinner, various holiday parties, moms night out, family dance parties, farm events, swimming parties, etc. Over the last 7 years, we have made some great friends thanks to HOIDSA and we are grateful for all of the support that HOIDSA has provided.
My final parting words would be to get involved in HOIDSA and spread awareness about what an amazing organization that it is! The organization can only support families if there are volunteers to help. The board has some great ideas, but truly needs more people to help make things happen. If you have capacity to volunteer in anyway (big or small) or know someone else that might be interested, please spread the word! I truly can't imagine how I would have gotten through that first week of receiving Cruz's diagnosis without HOIDSA, and I'm hopeful that HOIDSA will be there for the future mom that may receive a diagnosis and need support like I did!
XOXO - Trisha Romero
