As a parent, we have hopes and dreams for our children. I would lay in bed, watching her sleep and smile just picturing the woman she would one day become. I saw an independent career woman, an amazing mother, a loving wife—I saw her living life to the fullest—enjoying every moment. Autism changed those dreams overnight.
When Kya received her diagnosis, a flood of emotions washed over me that my mind and body could simply not handle. As the fog slowly began to clear, I was tasked to understand and accept the diagnosis. I grieved the loss of a child, more so the loss of who I thought that child would one day be, as she was standing before me. The idea of mommy daughter Saturday morning shopping sprees was replaced with therapist appointments. Picking the college she would attend while she learned to take on the world was replaced with assisted living facility shopping. I was numb.
I still lay in bed at night watching her sleep, but instead of a smile, I shed tears. Tears for her future. My tears are not for her future in the sense of having a job, a relationship or a baby, but her future when I am no longer here to provide for her or to protect her. My daughter has zero sense of danger; she would open the door for anyone. Even scarier she would run directly into oncoming traffic without the understanding that she could be hurt. This has meant major changes in our home, Fort Knox has nothing on my security system.
Despite the insane security that surrounds us, I still fear that something will happen to her. She is rarely out of my sight and yet I rarely relax or feel content knowing she is safe. However, these fears pale in comparison to think that one day I will no longer be with Kya. No parent wants to think of this, but they plan the just in case. There is the conversation with their sibling or parents… I worry not about who will care for Kya until she’s old enough; but who will care for Kya for the rest of her life. Where will she live when I die, will she understand that I am gone—not by my own will—or will she think I have left her? I am her network, I am her sole provider. Writing those words has my breathing heavy and a sinking feeling in my stomach.
One day I will be gone. And then what? Who will tell her I am gone? Where will she go? Where will she live? Will she get enough to eat? Who will take her places? Buy her food and clothing? Who will make sure she is safe? Who will make sure she isn’t physically or sexually abused? These questions make most uncomfortable. They do worse to me, the terrify me because it is my reality. These are not the typical concerns people have when looking at the future. This is what consumes me. How can it not? Kya is my daughter. She is my everything. And I, everything to her and for her, until the day I die. Instead of starting a college fund, I had the task of setting up a disability fund for my child to access when she turns 65. This is not for a home, new car or any luxury, but so that she will have money to live in a “good’ group home. Yes, you read that correctly, my wish for my child is that she will have a good group home once I am gone.
They don’t tell you about these questions that wake you up at night or stop you as you’re grabbing milk at the grocery store. When you get the diagnosis, no one suggest you set up a fund for your child to find a good group home after you die. I suppose they can't because there is no preparing anyone for this kind of pain, it is indescribable. Along with it comes loneliness and complete isolation. People stop inviting you places—not that you want to face the task of leaving the comfort and literal safety of your own home—the phone rings a little less as time goes on and you become detached from what was formally your life.
For some, this sounds like complaining. That could not be further from the truth. I love my child and I cannot image my life without her. I tell our story so that others can understand; understand when I politely decline to join you at the park. I want to go, really, I do, but I am terrified that my child will bolt from the park into the busy intersection. Understand I want to join you for dinner, but sometimes I’m not strong enough to hear about your dance recitals with your daughter. Understand I meant to call you back, but Kya had a meltdown and I was trying to safely restrain her from pulling handfuls of my hair out. Understand that I worry about my child just as you do, only I know my need to protect my child will not end at 18. I know she will need me long after I am gone—and I am working to secure her future, so she doesn’t feel the alone I feel.
On we go.
This post comes from the TODAY Parenting Team community, where all members are welcome to post and discuss parenting solutions. Learn more and join us! Because we're all in this together.