All in Down syndrome

Down Syndrome: The Bigger Picture, A Better Dream

Each of us, I think, has a picture in our minds of the way we hope life will turn out. We could describe these snapshots in any number of ways: dreams, plans, aspirations, desires. Our days are spent reacting to life as it unfolds and adjusting those images to incorporate any new information, surprising developments, or obstacles that come with living in this sometimes unpredictable world. 

For the most part, we’re able to keep any reasonable picture of the future intact as we plod along on our life journeys. Sometimes, though, an uninvited change comes along, drastically distorting the image we’ve held dear for our future. Before we know it, the unexpected has crashed into our reality with all of the impertinence and audacity of an unwelcome house guest. 

I Wouldn't Change a Thing

I can still recall the conversation with vivid details. I sense the pounding of my broken heart and remember the confusion in my muddled mind. I hear my weary voice as it trembles, and my body literally feels the heavy weight of physical grief as I remember my words. 

Why Your Choice Matters to Me

With the title, “Is Iceland on Track to Eliminate Down Syncrome,” CBS news created a firestorm over this past week within the Down syndrome community around the world. Explaining that this near extinction of a people group has occurred through the use of a now popular and easy to use prenatal test, known as the NIPT, the news clip touches on the ethics and morality of using technology to select what type of people are born. Should parents have the right to choose whether or not they bring their baby into the world?

Anchored

When we first found ourselves navigating the world of Down syndrome, I had no idea what I was doing. I came to the table with very little factual knowledge on Down syndrome and quite a lot of preconceived notions and outdated cultural stereotypes. Through the course of time and the process of educating ourselves, my family has been able to put to rest many misguided beliefs that drove our fears and provoked our insecurities. I have come to realize that a diagnosis of Down syndrome does not mean life will be horrible; it is not the ultimate dream-crusher that I originally assumed it would be. 

Where Was God When...? (Part 1)

I have a friend from college that I write letters with — old-fashioned, pen-and-paper, “snail mail” letters. We could talk on the phone, but because of where he lives, letters are the most preferable and convenient method of communication for us. Plus, who doesn't love to get a letter in the mail? Our letters are pretty infrequent, but that’s more because of my crazy life with three small children than anything else.

Several years ago, my friend went through a very painful and personal season of suffering, one in which the effects are still being felt today in his life. Trey and I grieved with my friend and supported him as best we could as he walked that difficult road. For years to come, my friend will wake up each morning with the reminder of that season of suffering, and I wonder if that the reminder might never go away for him. I hope it does, though. In the most recent letter I received from my friend, he divulged to me that he has walked away from his faith in Jesus.

If I Could Write Myself a Letter..

We are quickly approaching Alisa’s first birthday, and the anticipation and excitement at our home is palpable. As with any time of celebration, I have been feeling rather nostalgic, reflecting on where we were one year ago and where we are now. I’ve found myself thinking frequently, “If only I knew then what I know today...” If only I could have written myself a letter to read on the day of her birth, with all of the insight and knowledge I have gained through this year of growth as Alisa's mom, what would I have said?

In celebration of her birth and with all the joy I have come to know through her life, I've written that letter below.