Life With Lowe: Going Social to Show More Than Just a Disease

April 9, 2015

I am a pretty private person, however, when it comes to social media, I’m like a lot other parents who brag on their little ones. We all want to proudly show off our kids and their accomplishments and social media has become an easy way to do that.

I also use it to help spread awareness about Lowe Syndrome and for what it’s like for a boy to have this rare, genetic condition. I share Noah’s smiles, his struggles, his accomplishments and I even share his days with a little “attitude” to see Noah in all his perfections and imperfections. Noah is a kid, first and foremost. He is just like many other cute and adorable boy terrors and gets into mischief to see what he can get away with. He’s my little boy and I love to share all the things that make up who my son is. I don’t want him just to be defined by his genetic disease. Social media helps me do that.

I love sharing the little moments that are big moments to my son. This morning in fact, he finally did a full somersault and I did my happy mama dance and then he couldn’t stop doing it over and over again, just to hear my praises again. Of course the second I whipped out my phone to record, he was then done. How he knows that is my exact intention so fast I don’t know, but he knows. Needless to say, when I do get it recorded, I will be sharing it because it is another accomplishment that my son has been trying to get right and has finally succeeded.

IMG_3731Social media has become a great way for me to connect, not just with other Lowe Syndrome moms but other special needs moms with kids who have other diseases and genetic conditions that affect them. No matter what it is that affects our child, a special needs mom can connect with another special needs mom the way others can’t. When I’m worried about Noah and think it could be connected to LS, I post it to Facebook and love the amount of responses, support, love and concern that these special needs moms give, not just to me, but to each other–all the time.

It’s indescribable to explain how wonderful it is to have this connection with moms who know exactly what you are going through when your child isn’t feeling well and it could be connected to their disease. They’ve been through it too and the support is amazing to have right there at your fingertips. Special needs moms are there for the “good jobs!” and the “way to go’s” and they’re also there for the times we need to hear, “I hope Noah gets better and out of the hospital soon,” because we understand these times better than anyone else and know how to offer that comfort and concern to each other when needed.

Social media has been invaluable to me. I’m thankful for it and love that it’s there whenever I need it. I know I will need the support of my special needs moms again. The 360 support is amazing!

Follow Noah on Twitter, @noahmaddix

Follow Jenna on Twitter, @jennamaddix




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