My daughter recently turned twenty-five. At first glance, you might not notice she has a disability, but spend time with her, and you’ll quickly see how her disability manifests. She has difficulty understanding social cues; she will talk your ear off about America’s Funniest Home Videos and Myth Busters, her two favorite shows. She has difficulty with concepts such as telling time or making the correct change at the checkout stand. She needs constant redirection and reminders to do things, such as brushing her teeth and taking a shower. Still, her assets outweigh the liabilities. She’s funny, energetic, and spontaneous. She sends me elaborate texts full of puns and everyone she meets feels loved. She will be forever young.
When she was six months old, her pediatrician was concerned that she wasn’t making some of her developmental milestones. We spent the next eighteen months looking for answers as to why she wasn’t developing as she should. When she was two years old, an MRI of her brain finally gave some answers. “Partial agenesis of the corpus callosum with global developmental delay,” we were told. I had no idea at the time what that meant but soon learned that the part of her brain that connects the two hemispheres was partially missing.
The next eighteen years were spent trying to get whatever services she needed. Wrestling with her school to get services, countless hours and out of pocket expenses and every kind of therapy we thought might be helpful became the focus of our parenting. Long nights, fear of the unknown, and people looking at her and treating her differently became our new normal.
Ultimately, she did surpass all expectations of doctors and therapist who had seen her over the years. She is pretty independent and can take care of herself with little assistance. Still, assistance is needed.
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Every Wednesday Chrissy and I have date-night. We’ve been doing this since she was five years old. Most of the time our dates consist of dinner at Taco Bell and a trip to Goodwill to see if there are any good Disney books that she doesn’t already have. On date night we have two traditions; Before we go to Goodwill, we bet each other on what color the discount tag will be of the week. The wager is a “high-five” to the winner.
The second tradition is that we arm-wrestle to see who’s going to pay for dinner. I’ve never won yet (she’s pretty strong). Often on our date night or when we’re just walking around she’ll grab my hand and hold it. Then she’ll say “Dad, I forgot to mention that I put glue on my hand,” to which I’ll pretend that my hand is stuck to hers, and I ask “How am I supposed to drive now?” She giggles in delight.
It’s not unusual that when I tell someone for the fist time about my daughter’s disability they are quick to offer empathic apologies as if her disability is a deficit. The truth is yes it can be difficult. There are many things about having a daughter with disabilities that I will miss. I’ll never see her get married, hold a job or have an existential conversation about the meaning of life with her. She’ll never live on her own, or be completely independent. Someone recently asked, “has having a daughter with a disability changed you?” I responded with a birthday post that I wrote to Chrissy on her Facebook page:
Of all the teachers that have come into my life, you have taught me the most. For the past 25 years you have been my mentor:
– The day your were born you taught me, unconditional love.
– Changing your dirty diapers and being vomited on taught me humility.
– Your first day of kindergarten you taught me courage.
– Watching you struggle to learn to tie your shoes taught me tenacity.
– Watching you help others with special-needs taught me compassion.
– Answering all your questions taught me patients (oh how you taught me).
– Getting you the services you needed, taught me assertiveness.
– Making mistakes with you taught me forgiveness.
– Watching you make everyone you come in contact with smile taught me kindness.
You love unconditionally, laugh with abandon and live from the heart. I wouldn’t change a single thing about you. You are perfect, and you give me such joy, laughter, and inspire me every day to be a better man. You are without a doubt the most positive person I have ever met; you create a path of happiness with everyone you meet.
Because of great teachers in my life I’ve earned a lot of initials after my name, but the three letters that I’m most proud of are D.A.D.
Happy Birth Day Chrissy!!!!
Ultimately, every parent wants only one thing for their child, and that is to be happy. Chrissy IS happy and because of that, I am grateful. I am grateful for who she is and proud of who she has become. Yes, having a daughter with disabilities has fundamentally changed me as a human, as a man, and for the better.
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