For the past few weeks, I've been trying to think of a blog post topic to reel in a little more support for the Buddy Walk that we're participating in (and I'm helping to organize!) this year. I think sometimes with walks and events like this people get that we care about Down syndrome because we have Ty, but I don't always think people understand why Down syndrome is so
important to our family - what its presence really means in our lives.
It's a funny concept - Down syndrome means nothing, yet means everything in our daily lives. It means nothing because it does not dictate the decisions we make, our goals for the future, or our lifestyle. We are fundamentally the same family we would have been, whether Down syndrome was a part of it or not. However, Down syndrome is a part of us, whether we acknowledge it or not. It has changed our views on life, and our attitudes toward challenges individuals face and challenges we face.
I distinctly remember having a conversation with Eric early on in my pregnancy with Ty, as we shared that we would
never be able to raise a child with a chromosomal abnormality "like Down syndrome" - some people can do it, but we weren't those people. God is a funny little man, however, and sometimes throws your perceived greatest challenges in your face just to prove how capable you really are. A few weeks later, I heard my baby's little heartbeat on the monitor, and I realized how amazing this little person inside of me was already - I was hooked. Through every ultrasound where a new abnormality was revealed, and every appointment where invasive testing was pushed, and the moment - 5 weeks before Ty was born - where I was offered the option to "terminate" my baby's life, I became more attached to my son, and more firm in my belief that I could handle
anything. In retrospect, Ty changed me long before he entered this world.
The past three and a half years have taken us on an interesting, challenging, yet fun journey. On the surface, Ty has had more doctor's appointments than the typical kid. He has a few more medical specialists in his rolodex than any parent would like their child to have, and germs seem to take their time leaving his body. We have had therapists in and out of our house every week to help Ty do everything from sit, to hold a crayon, to put together sounds to make words. A lot of days have resulted in wanting to throw in the towel because of the sheer energy it takes to move from one milestone to the next. But then we get the days when Ty DOES reach a goal - when the pieces finally fit together and Ty reaches a new level of independence. These are the moments that make it all worth it - all the stress, tears, and nights that require a drink - are beyond worth it to see our child work so hard to accomplish a new skill.
Below the surface, however, we have an amazing three year old, who encompasses everything "little boy" that we imagined he would. He is fiercely independent, and can almost always accomplish something that he sets his mind to. Dirt and stickiness are perpetually covering his little face and fingers, and he has no poker face to any of his emotions. In the half hour before bed each night, Ty snuggles under my arm and plays with my hair, which absolutely melts my heart no matter how many of these moments we have. As he lays on his pillow, I read to him his favorite dinosaur book, and he finishes nearly every sentence by heart. Without fail, he asks me to read it again - even if his eyes are closing. The very person who Ty is at his core - below the surface of Down syndrome - adds so much to my life, I cannot even remember what life was like before March 10, 2010.
These, however, are the things that are inherent to my son - Down syndrome or not. The person he is, is what enriches our lives day in and day out. Yet that shell of "Down syndrome" brings to our life rewards we hadn't imagined. Because of Down syndrome, we don't take anything for granted. His one successful attempt out of 50 failed attempts is celebrated for an entire day. If Ty can persist, why can't we? Because of Down syndrome, we have found something to be passionate about. Pre Ty, I never had any specific cause that I cared significantly about. These days, I would happily make Down syndrome Congress work my full time job; not because I do it for my son, but because I have been privileged enough to see the amazing qualities that this community of individuals possesses, and I wholeheartedly believe in the abilities and gifts that these individuals contribute to our society. Because of Down syndrome, we are a more accepting, patient, and open-minded family. We have come to realize that the "good stuff" really lies beneath the surface of a diagnosis or disability, which is a quality I am confident and proud that all of my children will grow up having.
I realize it's impossible to truly convey every way that Down syndrome plays a role in our life. But hopefully you have a glimpse into our world. We participate in this Buddy Walk and the NNEDSC not only for Ty, but for our whole family and our whole Down syndrome community.
Ty's Page
Brady's Page
Eric's Page
Kerry's Page
