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?
mormonmomblog 
Love this post Jackie! Kisan is a cute, bright little boy and you and Jang are fantastic parents! I know we’ve had conversations about whether or not God gives us certain trials or if it’s just a part of life. I love how well you’ve thought this all out.
Everyone believes differently, and everyone is trying to navigate around those conflicting beliefs in this life, some more carefully and thoughtfully than others, to be sure. But where’s the profit in taking offense? He said it because he didn’t know what to do or say, and frankly I think it may have been better than saying nothing? We have no idea what HE’S been through and what he’s wrestled with in order to be there at that moment in conversation with you. We are just mirrors. We reflect our beliefs about ourselves in our actions, offenses, and even perspectives. I do believe that children coming to this earth “less than whole” was in the cards for them before they came. But not because they got stuck in that line to earth from God, but because we CHOSE it. I believe this, because we are ALL less than whole, and EVERY trial or suffering on this earth (&yes, even the joys) is the PERFECT thing we need to be set free. His hearing loss doesn’t make him less whole than you or I (I know you know this), it is just one of the gifts he gets in this life to understand the things he needs and that goes for you and Jang. That is what i believe and how i choose to live my life. The way I see it, if something is offensive, I am always the one that needs to take a closer look in the mirror. I know that God is a part of EVERY in our lives. He is not the puppeteer, We are. But all good things are made possible because of Him and the Savior. I think it’s simply a matter of perspective. ALL THINGS in this life, good or bad are (or can be) for our benefit. It sounds like your experiences are fairly common to all us parents, and you are not alone in your sorrows. Love to You and your family.
Well said Jourdan. After having read a few of your posts today it really feels like you are looking to be offended at all times. Just disagreeing with what someone says doesn’t mean you have to take offense. I disagree with much of what you have said in posts but I’m not offended. That said I have been in a place in my heart and head where everything felt offensive, I felt like everyone was against me. Perspective and time helped change that and looking back I feel like I was looking at life through a magnifying glass. Everything was distorted and blown out of proportion making it easy to judge others as hurtful and offensive. Trust me, life looks better when you set the magnifying glass down.
Sorry, I do have to say just one more thing. I testify that God does in fact make deaf children. He also makes blind children and crippled children and autistic children …. And he loves them deeply. He does not make mistakes. And he will make the whole again.
I’m sorry if I’ve given that impression, but thank you for your kind counsel. I do agree that life gets better when we focus less on ourselves, and more on others. In a perfect world, I wouldn’t take offense. But it gets wearying when people say these things over and over; especially when I believe they are wrong. I appreciate your opinion is different from mine- but I don’t believe God makes children deaf, or made my son deaf. For me, it comes down to genetics (and the science seems to agree).
I loved seeing this from your perspective, Jackie! I’m not sure I agree (my natural inclination is more toward the opposite in that God gave us each struggles – some physical, some mental, etc.) but as always I love the insights your perspective provides and it definitely gives me something to think about & will certainly make me more aware of what I may say to someone in a similar situation and think is totally acceptable (and hopefully save me from inflicting my opinions on someone who may believe differently thinking that I’m being kind or helpful). Ultimately, I don’t think it matters whether I agree or disagree though because I think you hit the nail on the head with the fact that Kisan will decide how he feels about it and whether it was genetics, God, or some combination of the two. Kisan is definitely a lucky little boy to have a mom like you no matter the “why” behind his struggle. . . (PS – I completely feel your pain on the “it gets wearying when people say these things over and over.” SOOOOO many people said things to me during my recent illness that I know they thought were helpful, but they just weren’t. No, you aren’t jealous that I had to shave my head and get to “start all over” with my hair. No, you don’t think that bald looks better than my hair before. No, you can’t be sure you knew how I felt. No, you have no idea what it felt like to be in the neuro ICU for 8 days because you recently had the flu. No, no, no. . . . The most frustrating part of it was that after I would get irritated by it (& hold it in), I would then feel guilt for feeling that way toward them because I knew they didn’t mean it to be frustrating or offensive & were just trying their best to connect with me or know what to say.) As always, great writing!