Cindy White

contributor

My Child With Down Syndrome Is Healthy

What does a healthy baby look like? That is the topic that came to mind after watching a story shared on The Today Show yesterday about former Olympic gymnast, Shawn Johnson East, and her husband, Andrew East. They openly shared their pregnancy struggles and possible complications with their unborn child. While there were possible issues with this precious child’s kidneys and umbilical cord, tests were also done to check for Down syndrome. They stated if the tests came back showing their baby had Down syndrome, they would love that child more than anything; but, like any parent, they just wanted their child to be healthy. They also shared tremendous relief and rejoiced that their unborn child doesn’t have Down syndrome. This has many parents that have the privilege of having a child with Down syndrome feeling hurt. Many feel the couple’s vlog posts and how the story was presented on The Today Show insinuated that Down syndrome equals unhealthy. So many parents are tirelessly advocating to show what Down Syndrome truly looks like. It’s not scary or to be feared. There is beauty in an individual who has Down Syndrome and everyone has purpose. And I personally believe God created all of us in His image. As I watched the video the East family posted and after hearing negative reactions from my community, I honestly reflected on the time surrounding my youngest daughter’s prenatal diagnosis and a misdiagnosed heart condition.One doctor told us she could only see three out of the four chambers of her heart and an ultrasound technician told us without authority or sufficient testing that my unborn child, Savannah, probably had Down syndrome. The technician said this with my two daughters (12 and 10 years old at the time) present. With no knowledge of Down syndrome and feeling blindsided, I could relate to the East family’s emotions. What is the common denominator between us? Fear and ignorance. I actually prayed that God would heal Savannah after I found out about her prenatal diagnosis. I was numb and even said out loud, “I don’t want a special needs baby.” Does that sound selfish and wrong? Maybe. However, I was ignorant and overwhelmed with fear of the unknown. It took over my faith at times. Someone reminded me that God never makes mistakes. I believe He doesn’t, but I do make them. I was wrong… so wrong! That is why I blog and openly post about Savannah. I saw the light after being in the dark and am learning to give myself grace! Being a living testimony will show others that Down syndrome doesn’t automatically mean unhealthy. Whether one has Down syndrome or not, there will be and can be health issues ranging from an ear infection to cancer. “Health” isn’t based on an extra chromosome, race or our sex. Are children with Down Syndrome more of at risk for certain health issues? Yes. Just as women are more at risk for osteoarthritis, heart attacks and urinary tract infections, but this doesn’t mean women are “unhealthy.” My youngest daughter, Savannah, has Down syndrome. However, she was never in NICU. She never needed oxygen. She never had a feeding tube. She breast fed for three years. Savannah has never had an ear infection. However, Savannah did have open-heart surgery to repair an atrioventricular septal defect at the age of 1. Today, the physicians cannot even hear a heart murmur! To me, that shows how strong she is, not that she is “unhealthy.” The word that continues to infiltrate my heart and mind lately is “grace.” I am writing about the meaning of grace in my life presently, and it parallels with this topic perfectly. As many are upset from the reaction the East family showed and how Down syndrome was portrayed as “unhealthy,” let’s remember to give grace. Grace has been given to me over and over. As we give grace, let’s also continue to show all the beauty and love of individuals with Down Syndrome. With every post, with every community service, and with every speech we are able to humbly share, let’s continue to show love. Grace and love is what will heal what is “unhealthy” about how our society views Down syndrome.

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Marching To The Beat Of My Own Drum

“Marching to the beat of my own drum and loving what makes me different with no concern of what others think”…. THAT is what Savannah continues to teach me! As I closely watched and followed Savannah on the splash pad here on base, I had to interpret to other children what she meant when she would grab them and pull them without saying anything they could understand. I know her intentions and I feel frustration for Savannah when she can’t articulate what she wants to communicate to other children. I have observed her immediately hugging a new friend or grabbing them and yelling in excitement. I find myself immediately interceding and explaining what she is trying to do or say while reassuring her new friend. Yes, a typical toddler will grab a toy from another child and not want to share, but they are able to use words along with their actions. These moments are teachable, but it takes more energy and effort from us special need parents. These moments are important for all of us, but honestly, it can be hard emotionally. It hurts my heart to see Savannah not be able to use her words as easily as other children her age. However, Savannah doesn’t seem to be affected at this age. She doesn’t see differences. She sees other children and are naturally drawn to them. She is so happy to be playing and observing other children. I watched with a full heart as Savannah excitedly observed another sweet girl that was about 7 years old, rest her face on her hands against a pole and count as other children scattered about. Immediately, Savannah mimicked her and began to count as well (in her language). This tells me how important the role of other children are to not only to Savannah, but to all others. We all have a purpose, no matter our age. Just as adults need to find “their people” and surround ourselves with positive influences and those that challenge us to be our best, children need the same. I have recently discovered an app that will help give Savannah just that! As we know, the attention of children is captured more by other children. This app has children speaking and singing as a way to teach speech and communication skills! How fun is that?! I am beginning to add this learning tool to Savannah’s daily routine. Any victory takes effort and energy. Any victory isn’t without challenges, frustrations, and emotion. Any victory takes a village. That village includes other children and the important role they have in the lives of their peers. It includes other parents taking opportunities to teach their children that differences are a good thing. We would never learn and grow without them! So, as I continue to learn from my children, I will “March to the beat of my own drum and love what makes me different with no concern of what others think”.

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