What does it mean to raise awareness? The definition of raising awareness: Awareness raising means making people conscious about a problem or issue. You want to make a certain topic or issue more visible within a community. The goal is to make people understand the importance of a certain issue and find support to address it.
But what does raising awareness mean to you? Do you feel as if you’re being heard? Ignored? Do you feel as if no one is listening? I’ve felt that way many times over the past eight years while trying to raise awareness for my own daughter, Allie, who was born with a left side Congenital Diaphragmatic Hernia.
I was like a lot of others who have had children diagnosed with CDH. I didn’t have a clue what it was. I was a first-time mom and was thinking that this was a small issue at first, even though I had heard the words “critical”, “less than a 50% chance of survival” and many other terms during my pregnancy. Even after Allie was born, I was still very clueless to how horrible CDH is and how much I really didn’t know. I used to refer to her birth defect as something “small”, and I didn’t go into much detail while she was in the NICU mainly because I was so clueless to how close to death my child really was. I feel horrible for not educating myself more when she was a baby.
When I did talk about what little bit I knew of CDH and would talk about how Allie didn’t need to get sick or be around anyone who is sick, and I would talk about “my daughter isn’t going to be doing this, or I’m not letting this or that happen with her”, typical “first time mom” things. Apparently when you’re a first-time mom and act like one because, I mean hello you are one, other moms who have been doing this for a while longer than you like to add their two cents and tell you how “crazy” you’re being and how “dramatic” you are. I guess they forget that they were ever a first-time mom once before too, I don’t know. When Allie was baby around 5 months old I had a friend, if you would like to call her that, who talked down to me about how I was acting. She made fun of me, told everyone including myself that I was “crazy” and “no one cares about what I have to say”, that I should be “thankful Allie doesn’t have anything wrong with her”, and the one comment that cut deep was “I feel sorry for her because she has to live with you and she’s going to grow up to hate you because of how sheltered her life will be”. (Allie is a happy kiddo who loves her mama and gets to do what ever she sets her little mind to, by the way). I chose to end that friendship and afterwards I felt so down about myself that I didn’t talk about CDH anymore. It wasn’t until she was 18 months old and suffered a bowl obstruction caused by malrotation of the intestines and literally almost died due to doctors’ negligence that really set a fire under my behind to start raising awareness for her regardless of what anyone thought of me or said about me.
At times it seems like no one is listening to me or paying attention when I talk about CDH and Allie. We have done several small fundraisers that Allie chooses to do, and we always put Allie’s story out there and information about CDH. Often, I’m like “these people don’t care; they won’t even remember any of this”. But every once and a while when I run into an old coworker or current friends at work, or customers that I’ve had order from our candy making they will bring up Allie and ask if she has anything happen due to her CDH. I’ve had friends at work that will talk with others about the fundraisers we do and how I volunteer for a charity and raise awareness for Allie and a lot of other kids like her all over the place and how important it is. It makes me feel better knowing that someone remembers, someone is listening, someone is helping even if it’s a small gesture such as conversation.
It’s important to raise awareness for your child because you know your child best and you are their voice. And believe it or not, even when you think no one is listening, you’re still being heard. Don’t let anyone extinguish your flame, even when you feel like it’s growing dimmer, just remember who you’re doing this for. I like to compare CDH to “Horton Hears a Who” by Dr. Seuss. We feel small, feel like no one cares, we call keep making noise to be heard and it feels as if it isn’t getting us anywhere. But I like to think that one day, we will come across that one little “Yop” that will make us be heard loud and clear and our babies, and bigger babies, will get the recognition they deserve and finally have enough funding for research and hopefully make CDH become history by stopping it from happening. The moral of the story is, always believe in yourself, do what you feel is right, do it even when no one else is. Our cherubs need us now and always. Be the who, who makes it happen.