- It felt so far away. Just last week, it seemed, Tyler was heading off to kindergarten and now he is heading off to Kenya to study abroad. It all went so fast....
- I thought it would be self explanatory...it seemed like the "easy" part of parenting as we reap the rewards of all of our hard work after 18 years of parenting.
I have so much to learn in life...and it never stops.
And then there is Aaron. He is 18 years old now. I am not legally his parent anymore , but his guardian now. As a parent to a child with a profound disability, there is little time to plan ahead much. Each new phase is uncharted territory...the transition to preschool and elementary school and then off to middle and high school. Each new phase of life brought with it unknowns that were as unique as Aaron is. And with the medical, educational, emotional and simple every day cares, simple exhaustion fills the time that would otherwise be filled with dreams for the future of a child like Aaron...and frankly, I have not always been emotionally overjoyed to look too far ahead in the future. There are so many unknowns and I have preferred to take them as they come while always keeping in mind what I want most in life for Aaron. My dreams for Aaron remain the same...that he live a life filled with love, acceptance, and an environment that allows him to continue grow and learn. I want him to have opportunities to minister to other people just through his smile and incredibly joyous spirit.
And now he is an adult. What does that mean? I am left trying to figure out how this changes things for us. Many people would say it changes nothing, but they most likely are not parents, grandparents or siblings of a child with significant disabilities. It does change things. Aaron, developmentally, is probably more like a two year old that an 18 year old. But, if you know Aaron, you would vehementally agree that that does not define Aaron or his intellect. He may be cognitively be similar to a 2 year old but he carries with him the life experience of someone who has lived 18 amazing years.
Aaron has had a life rich with experiences that we have never wanted to limit. How do we maintain the dignity of an adult male, while continuing to allow him to experience life at his developmental level? While he would enjoy a pony ride or playing in the shallow end of the pool (wearing a swim diaper under his trunks), does this maintain his dignity? Do we stop fighting for opportunities for him to increase his independence and life skills...do we give up the dream that Aaron may learn to walk or communicate more than a few signs he worked so hard to learn. Are we too worried about what others think when we consider all of this? Or are we being wise to use discretion? I don't have answers for many of these questions.
It was only a few years ago, that if we had decided that Aaron needed to move to a group home to be cared for, that lots of people would be whispering "I could never do that to my child." And now that Aaron is an adult, most disability advocates lead the pack in the public opinion that now we would be holding him back if we don't allow him to "move out" and gain independence from his family like "all" 18 year olds desire. As "parents", if they like us, and "guardians", if they don't, are motives for the decisions we will make for Aaron will always be analyzed and scrutinized...not that I am losing sleep over that.
I don't know how to do this phase of life right now. I don't want to get lost in moments of grief of what could have been. I am determined to press on...after all, I have always known that being a Mom does not end at 18 for anyone. In time, I will get comfortable in my new, yet surprisingly familiar role in Aaron's life. All along, we have worked to carve a place out for Aaron in a world full of those who often take for granted their healthy bodies and brains with unlimited potential. Aaron will always be a child in many ways...and yet I am proud to say that my sweet son Aaron is growing up.