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| 8 months big! |
Many people told us Diana could not have been born to two better parents. They told us she was blessed to have us. Hearing our friends and family tell us Diana was lucky to have Tim and I for parents stung a little, but I could not identify why at first.
As I mulled it over in my mind and talked it over with some other parents, I realized that I felt like having a child with special needs was a punishment. When folks said Diana was born to the very best home possible, I immediately thought of the dozens of couples I knew who would be better suited to raise her. Couples with more parenting experience, who had more money than we did, who lived closer to better medical care than we did.
Why would God give a child with Down syndrome to a preacher and a church secretary? I thought this was unfair for Diana. Surely there was someone who could provide for her better than we could. But a child is not a punishment just as much as her parents are not a reward. We are family. Diana is the physical manifestation of her father’s and my love for each other.
Diana is not a punishment—as clichéd as it sounds, she is the answer to our prayers! As I write this, she is growling at some sensory toys—the sound of her fills me with joy and pride. I see her smile and I know that she is my treasure, but one I did not earn!
Thoughts of other parents providing Diana a better life were slowly replaced by thoughts of worse homes for her to have. I did not have to picture too many bleak scenarios before her future appeared grim. It’s a place in my mind I try not to visit often. I began to suspect that maybe the love of her parents is exactly what Diana needs.
Another observation parents of children with special needs often hear is “I don’t know how you do it.” You discover that you are a saint. Well-meaning people tell you, “God only gives special kids to special parents.” Most of the time, people are only saying this casually, as small talk, but I resent the implication that only parents of children with disabilities are special. No parent is more special than another parent, because no child is more special than another child.
Parents of children with disabilities are no more saints than parents of little people, redheads, or twins. I play the hand I’m dealt. I have no idea if my life is easier or harder than anyone else’s because I live this life. I didn’t intend to become an expert on chromosomes or genetics. I didn’t know I would always worry if my child was being treated equally, but every parent has to advocate for their child’s best interests at some point.
How do I do it?
I wake up to our daughter’s precious yawns and soft moans. She bosses me in baby talk as I change her diaper. I bring her to bed with me and she peacefully nurses with her eyes closed, but hands and feet fidgeting. We briefly nap together before I dress her. She wants to sit up, but hasn’t figured out how yet. She loves standing, with support—she strongly grips my fingers and clenches her arms, opens her eyes wide and hollers at me! I holler back—we howl together! She gums everything she can bring to her mouth. When Diana lies on her back, one chubby fist reaches for the corresponding kicking foot, she growls triumphantly when she catches it. When I hold her close and pat her back, she innocently tastes my face. I smile at her and she responds with full, dimpled cheeks. She is my daughter. She is my love.
Some days, we see doctors. Some days, we see therapists. Some days, she needs blood drawn. The extra medical attention Diana requires makes her different, but not more important. The next time you see me with my baby, don’t tell me that you can’t imagine how I “do it.” Use your imagination! Imagine how I do it! Imagine that I love my child as much as you love yours. Choose to comment on the weather instead of comparing our parental qualifications.
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