Our journey began on December 18, 1991 when Ada entered the world at 6 lbs 4 oz and 19 inches long. I wasn’t sure but knew almost immediately that something wasn’t quite right. For about six months I kept telling myself that this is an individual and not like our first baby so they are going to develop differently. The doctor showed me a video of a baby with cerebral palsy at about seven months old and said that he didn’t feel that’s what was wrong but we should consider going to Iowa City to the Center for Disabilities and Development (CDD). Off we went, and after a couple of visits several months apart the CDD doctors gave us the news that Ada would develop at a rate of 60 - 70 percent of a “normal” child. No matter what the diagnosis we loved this child and prepared for the journey.
The journey included all the usual things of childhood. Illness for Ada was particularly challenging. A fever often was accompanied by febrile seizures. At age five she was diagnosed with epilepsy. After a few different doctors and several medications she is seizure free for many years.
Along the journey through school Ada had many helpers. The best ones were those that stood back and waited until they saw that Ada couldn’t do something or needed some redirection to finish a task. She has this way about her to manipulate you into doing for her when she is quite capable of doing many things for herself. To this day as her Mom I still have to be on guard or she will have me doing for her. I am not sure how many helpers I have cautioned over the years to be on guard because she is a master of manipulation. It is one of the “skills” that I think will serve her in the future when she needs things but for now we need to help her to help herself.
Ada continues to grow and blossom and never ceases to amaze everyone. The summer of 2011 Ada worked in the workshop and enjoyed sorting and counting tips and syringes. She has had countless experiences through services at LifeWorks and we hope that will continue.
As I look back on the last 20 years and the village of persons that have been involved in our journey and in particular with Ada’s life I don’t think I would change anything. As our journey continues we have some new horizons coming into view. None of us knows what lies ahead but I do know that we will continue to be blessed by this wonderful spunky fun loving young woman, Ada, and hope that she continues to grow and learn. If the day comes when she says I want a place of my own I hope I can be strong enough to say, OK, let’s see what we can do. I hope LifeWorks is there to help us!
Written September 2012