June 18, 2011

The gift

On June 19th, 1993 our family unexpectedly received one of the greatest gifts ever; it was the gift of down syndrome in the form of a 6 pound, 17 ½ inch angel we call Alex.

At the time many people, including our friends and family offered their condolences or shared their thoughts that God must have chosen us because he/she knew we could handle it. That cliché piece of sympathy used to bug me, and I would find myself arguing with those people who were only trying to let us know they cared. In my mind we were given an opportunity, not a tragedy and it made me defensive. I felt the need to share with the world our joy and elation about our baby. Perhaps I was trying to convince myself that we are all going to be okay, or hiding my fear of the unknown, but in looking back I know our approach was the right one for us, and Alex is the greatest opportunity we have ever had, and most likely will ever have.

As they say, the proof is in the pudding. There is not a friend or family member who has not learned from Alex, not embraced her life or not recognized her gifts. She has enhanced our lives, our neighbors and our community. She brings laughter and love wherever she goes, and can find humor in most everything.

But I feel our lives shifting back to the unknown; Alex will turn 18 tomorrow and become an adult in the eyes of the law. In many ways her life is just beginning again. We are taking actions we never anticipated when Alex was younger and we need to plan for her future. Yesterday, we petitioned the court for legal guardianship of Alex, as I have and will always be concerned about others taking advantage of Alex. John and I would like to manage her affairs, for the short time and most likely for the long term. This is not something parents without children with special needs do, it is setting us apart from our peers and a new stage in our lives.

I started this journal in August, 2009 to document Alex's sophomore year of high school, hoping to help others, especially those with young children to learn about my extraordinary daughter and look forward to a positive and possible future. I continued through Alex's junior year, because I recognize Alex's story is not just a year in her life, it is her entire life. I enjoy writing and particularly the feedback I have gotten the last two years. Thank you to all who read our story.

I plan to continue this journal as we move into Alex's next phase of life. She will graduate from High School, perhaps attend our local Community College and hopefully move out of our house when she is 21. I was never nervous or scared for Alex these past 18 years, and although the educational system is quite challenging where we live, Alex has progressed academically. I have become an advocate for Alex and all children with disabilities in our area. It is my dream life.

Today, I am once again trying to convince myself that we are all going to be okay, I am hiding my fear of the unknown, and hoping in five or ten years I can look back and know our approach was the right one for us, and Alex is successful, happy and a contributing member of her community. I am sure we will take missteps, but hopefully a lot of good steps. I will share this journey and once again hope others can learn from our actions; good and bad. But in the end, the proof will be in the pudding.


  1. What a momentous decision. You and your husband are so thoughtful about these things so how can you go wrong? I'm sure we will be in the same exact position so it is so helpful to hear what you are going through and thanks for passing it along! I sometimes feel guilty because there is a large part of me that WANTS Kayli to live with me forever - I know that that is selfish though....sigh.

  2. I'm so glad that you didn't stop writing with Alex's sophomore year. Your experiences and insight have been so valuable to me, and I know that will continue.

    I hope Alex had a very happy birthday!

  3. This is Joyce. Welcome to part two...or life at the top of the escalator with no second floor. No it's not really that bad. The one thing I would do differently for sure is get in the line for SSI now. Don't wait until she is almost 20 like I did. You never get those years back. Good luck:)


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