Recently, an acquaintance (hearing about Kisan’s hearing loss) said to me, “You know, God sent him to you because He knew you could handle it.” I smiled, and the conversation moved on; but underneath, I burned a little at his comment. Somehow, without ever having been directly involved with our family, he knew that Kisan’s hearing loss was part of God’s plan.
I’m not sure what God’s plan is for anyone; not for me, and certainly not for Kisan. But I’m pretty darn sure Kisan’s hearing loss was not a part of that plan. Having a child with a hearing loss has been hard; it affects us, and Kisan, in ways that sadden me and continue to sadden me.
Finding out about Kisan’s hearing loss was a hard pill to swallow. When you’re pregnant, you expect your baby will come out whole, and perfect, and camera-worthy. And while Kisan is whole, perfect & camera-worthy, his ability to hear is decidedly less-than-perfect. I was so sad and frightened when I first heard the diagnosis. I didn’t know what a future for such a child would entail. Would he have problems learning to speak? Be different in other ways (mentally) from the kids around him? Would he be teased and rejected by his peers? Childhood can be hard enough without the added burden of being, in a very obvious way, physically different from your peers. And believe me, Kisan’s hearing aids do get noticed—at daycare, at the store, and at the park. Occasionally, a poorly-trained child will point at him and whisper. Others (always strangers) just stare. Since Kisan doesn’t notice, I let it roll off my back.
I feel very lucky, in that Kisan is “just like the other kids”—a bright, friendly toddler who is developing on par with his hearing peers. He most enjoys playing with his friends in the neighborhood and at daycare; and the kids he plays with don’t even seem to notice his hearing aids. To Jang and I, his hearing loss is now just a part of the package that is our wonderful little boy. It’s more than I could have hoped for. But it was a hard road to get to this point.
For a solid year, Kisan would pull the hearing aids out at nearly every opportunity. We battled him every day. I didn’t put him in daycare for a long time because of this, and I tried my best to work at home. When he finally entered daycare, I’d suffer bouts of anxiety worrying if he would throw his hearing aids, rip them out, or put them in his mouth.
Over the past two years we’ve spent countless hours working with Kisan on exercises designed to help him listen and speak; modeled phrases, over and over, for him to repeat; urged him to point out words, locations, actions…and so many other things, all geared towards helping him develop properly. On top of this, there are regular evaluations and testing he has to take, all part of Utah’s Early Intervention program for children with hearing loss. In truth, this program has been a Godsend to us. Part motivational coaches and part drill sergeants, their employees make sure we’re held accountable for Kisan’s development. And I hold myself accountable for this development, every…single…day.
Parenthood has been hard. I knew this stage in life would take commitment, dedication, and time. But, ultimately, I thought a child was a pretty self-sufficient entity, capable of walking and talking with only moderate parental intervention. I’m so glad we have been able to stretch ourselves to meet Kisan’s needs—but, in some respects, I do feel that I never got to simply enjoy his infancy. I was always too focused on his progression to the next thing, worried that if he lost momentum we’d quickly fall behind the other children. To be honest, I don’t think I’ll ever feel complacent about his development, not for a long time.
So, back to the beginning. When this man told me that these many, many struggles (both past and future), were inflicted by God himself on an innocent child and his family, you can understand why I bristled inside. He, like most people who make insensitive comments, probably didn’t think through the connotations of what he said. But that doesn’t make what he said any less hurtful, or false. And this isn’t the first time someone has made a comment like that about my son.
I wish I could say to my well-intentioned acquaintance, “I know you made this comment with the best intent. But what you’ve said isn’t true, and it’s hurtful. In the future, please, please don’t try to opine on why we go through this, or any other hardship. You just don’t know why.”
Only the individual can decide how God interacts in his or her life. Not even I fully have the right to determine if Kisan’s condition is God-given or not—only he does.
Sincere beliefs do not excuse thoughtless remarks. I shudder to think of this man saying something similar to an impressionable child, like my son, rather than well-informed adult parents. God did not pre-ordain Jang and I to have one (or possibly several) hearing-impaired children. Kisan was not part of a crop of spirits in heaven marked “to be deaf or hearing impaired”, just waiting to be assigned to families on earth. Kisan has a hearing loss because two people with recessive genes for hearing loss decided to marry and have children. Children are born every day with mental impairments, Down Syndrome, Spina Bifida, paralysis, congenital heart defects—not always because God intended them to be that way, but because people with imperfect genes, or living in polluted environments, or with poor nutrition and medical care, decide to have children.
Here’s where I see God in all of this. I see God in the dedicated individuals of Early Intervention who work to provide us with education, motivation and training. God may have even inspired people to set up these state-run programs in the first place. I see God directing me and Jang, from time to time, to know how to best care for our son. I see God in the kindness in other people, because I believe we all have a special light from God that helps us feel love and empathy towards one another.
I do not believe God made my child hearing-impaired. I only believe He is here to help our family as we raise this precious little boy. And what right does anyone have to say otherwise?