Interview with Erica about Behr
Vona: First off, tell us a little more about Behr and how you learned about his diagnosis of Down Syndrome.
Erica: Behr is 17 months old, and an absolute trip. He is always making his daddy and I laugh. During my pregnancy, we decided not to proceed with the genetic testing. We didn't feel like that was something important and the outcome didn't matter to us. Plus, I didn't want to stress out if the testing did come back positive for Down Syndrome, and risk hurting Behr during the rest of the pregnancy. March 8, 2016 at 9:01pm, Behr Brooks Klocker was born! We were so thrilled and overjoyed with our baby boy. After the nurse cleaned him up and he got passed around to a few visitors, we noticed he kept sticking his tongue out, quite a bit. We didn't really think anything else about it, and just assumed it was something some babies may do after birth. Fast forward to the following morning, the pediatrician came in after he rounded on all the babies, and just bluntly said 'I think your son has Down Syndrome, so process that and we'll be back.'
Vona: Gotta love some medical staff's bedside manner! What was your initial reaction to the news and how has that changed now?
Erica: After the doctor so blatantly told us the news, we were upset at first and probably had about a 15 minute cry session. Then immediately decided that there was absolutely nothing to be upset or scared about. We now look back on that day and just laugh that we even were upset in the first place. I mean, we just had a beautiful baby boy to be born!
Vona: I can totally relate. We found out that Zee would have a 91% chance of having Down Syndrome in utero. It was hard getting the news because there was still that 9% chance she wouldn't and so that lingering unknown was not always pleasant. But I found myself choosing to be okay with it if she was born with it, which allowed us the peace (after some grieving) to celebrate her birth. What are some ways you have made the most of Down Syndrome in your life?
Erica: We have come to understand that Behr makes his own rules, and we just follow his lead. So understanding him has been a big part of also understanding Down Syndrome and making this most of it. Also, to help we have joined various groups and stay connected with other families who have children with Down Syndrome. We always try to get out and be active just like any other family would. We want Behr to experience everything he possibly can in life, and not hold him back.
Vona: Yes! I love that approach and attitude. It seems that is a universal plan that is gaining momentum around here. How has your son inspired you and the people who know him? Give us some good examples.
Erica: He inspires us so much so that we decided to start a non-profit organization for Down Syndrome, called The Behr Down Foundation. We saw early on while he was in the NICU that he was a fighter and such a strong boy, and we felt so moved to want to give back to others with Down Syndrome.
Vona: Gosh- our babies endure so much. I remember during Zee's heart surgery she like never complained about anything! It made me realize how much I can take things for granted. It really adds some layers to your soul when you have a baby who becomes your guru! I knew you started an organization that was inspired by Down Syndrome. Can you elaborate about those endeavors and how you want to get the word out about it?
Erica: My husband and I started The Behr Down Foundation in hopes to give back to those with Down Syndrome. Our goal is to help provide glasses to children whose family may not be able to afford them. I'm not just talking about standard glasses, I'm talking about helping kids get the flexible glasses that are specifically made for children with Down Syndrome. For example, due to their flatter bridges, they sometimes need a little extra support so the glasses do not slide off. We are still very new and figuring things out, but we have had one fundraiser so far, and have another coming up the end of August! We have many ideas and plans, but are trying to raise enough money to be able to get to where we want to be.
Vona: I love this! I have actually featured your organization on our RESOURCES page, and if people click HERE they can go see more. What do you want the world to know about your son and about Down Syndrome in general?
Erica: My son is my hero! He is such an amazing and determined little boy. He proves something new to us everyday. Just because he has Down Syndrome doesn't mean he can't succeed in life. We have BIG plans for Behr and want him to prove to the world that he CAN and he WILL succeed! Shoot, he may be the first person with Down Syndrome to own a bar! Haha! Side note: My husband owns a bar, and we think it'd be awesome for Behr to run it one day!
Vona: Hahahaha, totally! I am guessing you have heard about the coffee shop that is springing up everywhere called Bitty and Beau's. We have to go have lattes there as soon as they arrive locally! (I think they are opening up in Charleston soon). This campaign I have going, called "Start a Conversation" is all about talking to each other to help reduce the fear of the unknown, and hopefully make connections. If someone were to come start a conversation with you in public after seeing that your son has Down Syndrome, how would you want them to approach you and what would you want them to say?
Erica: I get so many stares, and I always wonder if they are curious if he has Down Syndrome, but are to scared to ask. I'm very open to any and everyone asking me about Behr. I love bragging on him! They can come up to me and just ask outright 'Does he have Down Syndrome?'. I always love stories of 'My cousin has DS, or my friends child has DS and to see what that person is doing in life'. I say, bring on the questions!! I love telling our story!
Vona: Yes, I think simply starting there gives us mamas a chance to just start talking! I truly don't really believe the stares are ill intended. I have found that most people come up to me and tell me what a gift I have received by having ZeeZee. In my heart, the people looking at her are actually reminiscing or sending her love!
Erica, thank you so much for talking with us and sharing your story! I know we will talk again and again. Much love to you, Mama!