For the past few years I have been invited to speak to various classes at the University of Illinois. Some times I speak as a parent and others I speak on advocacy as it relates to Larkin and our community. It’s as natural as breathing for me to get up in front of a group and speak and I usually leave with a sense of gratification that I have changed minds, lives, and thought processes as it relates to those with disabilities and their families. It takes me about an hour to get the full story out, answer questions, and I show a video of our first year as a family with Larkin. I make videos of our life every year, collecting photos over 12 months and finding just the right songs is something I derive great satisfaction from. I also mentor a student or two every spring/summer semester from the families’ class through the College of Education. It’s always fun to watch the students learn from our story and grow to accept and love Larkin.
Most of the students I speak to are going on to be educators, some type of therapist, social worker, or there is one class that is an elective and filled with students of all ages, backgrounds, and disciplines. Touching their lives and making a difference even if it is a small one leaves me filled with deep humility and flat out exhausted.
The last month I have done this four different times and it was different this go round. Larkin is finally stable and making huge gains in her development. Gains we honestly thought we would never see so we are tickled and at the same time always holding our breath. While we are thoroughly enjoying this beautiful time ~ we have learned that we will never lose that wondering when the dreaded seizures might return.
BUT it doesn’t weigh us down as evidenced by my time spent speaking to the students. I left each class and took some time in my car to regroup and catch my breath as walking them through 4 years of sheer terror takes it out of a girl. I realized that with the stability, our enjoyment, and her gains, I had put in the very deep dark recesses of my mind all the horrific events Larkin has been through.
Showing the video brought it all flooding back and I burst into tears as I drove home, not because I was sad, but I was overwhelmed with all we had been through for so long and FINALLY we are seeing our child come to life. All the hospitalizations, treatments, drugs, tests, and the absolute sheer exhaustion from being scared out of our minds ~ all of it ~ is tempered by all the love, support, and above all else prayers we have been given by our family, friends, and our community. The delicious icing on the cake is that Larkin is communicating to us through a few modified signs, looking us in the eye, walking, laughing, smiling, and showing the world that even the tiniest, severely challenged child has value and something to share with all of us.
A friend of mine wrote a recent blog post about healing, and that what healing looks like for one person is not the same for anyone else. I’ve said it before and I’ll say it a thousand times over, Larkin healed me when I didn’t even know I was sick. She breathed life into my soul and continues to teach me to slow down and never take anything for granted.
Here is what MY healing looks like. What does your healing look like?
Amy:
There really aren’t any words to adequately describe what you have done to open the eyes of others to what it means to have a loved one with disabilities.
My students write papers in my law class, and they go on and on blithely about things they think of as “rights” – the “right” to health care paid for by the taxpayers, the “right” to die. And because most of them have never had anyone they can’t see, meet, or argue with tell them, “no”, they cannot fathom how the “right” to do something can suddenly turn into some stranger’s ability to tell you you CAN’T have something because “we’re paying for it, and we’ve decided your life isn’t worth it,” OR how a “right” to die can morph slowly but insidiously into an OBLIGATION to die.
This kind of ignorance makes me want to weep.
This will first affect those that others look at from the outside and think, “I wouldn’t want to live like that” — the elderly, the ill, the disabled. And if we are not vigilant, as you are, this will creep into our consciousness disguised as “mercy” or “pity”. My students, like so many others, do not understand how what they think of as “mercy” or “pity” is so easily turned to cruelty and oppression.
Your work, I hope and pray, demonstrates every day to these students and others, not only that every one of these lives has immeasurable and inestimable value in and of themselves, but also because of what they ask US to become. It demonstrates the POWER of hope, the POWER of love, and what is possible when we VALUE those who are different.
Amy, the face of your healing (Larkin!) and the story are beautiful. I am so thankful for your ability to process and share all of this as you journey along. I can’t even begin to comprehend how many lives you and Larkin have touched.
Amy! In one of my special education classes this semester… my teacher went to the u of i for grad school and said that she heard you speak in one of her classes! She said you were great!