You find out you are pregnant. You begin planning. You plan not only how the nursery will look, what outfit they will wear home from the hospital, you also have an image of how it will all go in your mind. You probably even let your mind drift off to the future, what they may become, what they may look like. It seems like a logical way of thinking.
You get a diagnosis of Down syndrome. Now what? That logical way of thinking becomes a distant memory. You fret and you research and you torment yourself. You think about what could I have done differently. You wonder if your child will ever live up to that expectation you had planned in your head. You grieve the loss of this child you thought you would have and look to the future in fear.
Your baby is born. Your new love is placed in your arms and everything seems so right. She is just
like any other baby. She has a cute button nose, she squirms and coos and sucks a little. Her beautiful almond shaped eyes complete this masterpiece that you are holding. Any fears or insecurities melt away. You are completely in love with your child, the one you fretted about, the one you questioned. The one that seemed to stir so much controversy over an extra chromosome. Perfect. Love. Cuddles. Life is good.
As you continue to walk your journey there are different things that come up. Her peers are all starting to roll, sit up, crawl, walk. Your precious baby seems to be so far behind.
You realize that it doesn't really matter. You realize that it is okay to slow down and enjoy the moment. You don't have to baby proof the house just let, you get to enjoy that baby stage just a little longer. After all, everyone says they grow up too fast and you have been given the precious gift of extra time. While your baby maybe needs a little extra help to accomplish some of these "common" tasks, you begin to learn just what we all take for granted. You understand how all of the muscles have to work together, how motor planning has to happen, and how much strength it takes to roll over.
Your character and understanding starts to build. You start to learn and become a different person. This little gift you were given opens your eyes and changes you. You look at your other kids differently, you parent differently, you look at the world in a whole new way. This fear that seemed to strangle you at the beginning is now turning into the greatest love story ever. You feel like you want to shout from the mountain tops about what a blessing that extra chromosome is. You begin to wonder why there is so much doom and gloom around a Down syndrome diagnosis.
You realize that there are more ways to do things than how you always have been. Communication seems to be the next milestone. While your little one is scooting and just starting to get into things, their peers are running and talking and sassing back to their parents. You start to feel lonely because you seem to think your child is so delayed.
Your child looks into your eyes and communicates a thousand things with you, in just one look. A look that maybe one of your other children have given to you, but you ignored. Because you don't have the luxury of them sassing back to you, you think out of the box and find a different way. Sing language becomes second nature to you. You break down words to hear every syllable. You call and go on when they utter a sound. You get wrapped up in the excitement of every little step they make. You realize you communicate more with your non-verbal child than you do with your verbal children.
You become an expert in finding other ways, looking outside the box, turning every opportunity into
a learning experience for your child. You find the joy of being an active parent. While it is hard and exhausting. Sometimes lonely and isolating, your child walks up to you and gives you a hug. That low tone allows your child to wrap their entire body around you giving you the hardest most loving hug. And the they pull away for just a second and they smile. Their smile is so big and so bright it melts your heart. You feel like you are going to explode with love.
Someone says an ignorant comment to you. Someone reminds you what society says about your child. Uneducated and inexperience is talking. The fear, remember the one that you felt before you knew what Down syndrome felt like? The research and the statistics try and the label, try to describe my child, but Down syndrome is not something you describe it is something that must be experienced and felt. Down syndrome has some stereotypes that just aren't true. And what if they are slow or can't keep the pace of a National Honor society student? That means that they have something different,
something that couldn't be measured by a test, but something that must be experienced.
You understand that we all have something different to give. Some give their smarts while others give their smile. Both are important, both have a place. One is not more important than the other, they are just different. One does not have more to offer and one does not have less, just something different.
You realize just how special the gift of Down syndrome is. Different, yes. Slow, yes. Smart, yes. Beautiful, yes. Stubborn, yes. Capable, yes. Determined, yes. Loving, yes. Emotional, yes.
The journey is filled with many different And Then moments. We work ourselves up, we compare to others, we set false expectations, we sometimes forget that not everyone has the privilege to experience Down syndrome. But often times when we can find the And Then moment we realize we are right where we are suppose to be. Down syndrome is only a label, it does not describe anything and it is an unique as the individual.