Did you know that May is Better Speech & Hearing month? Neither did I. But what better time to share a little more of our family’s story of hearing loss, early intervention, child development and education. Much of our learning curve started with diagnosis, but now that we’re venturing into school systems and learning environments, I’m finding myself re-noticing just how much we do have to pay attention to how hearing loss affects our family. Here are a few of the lessons we’ve learned along the way.
1. Hearing loss is manageable, though frustrating at times. Especially in young (pre-verbal!) children hearing loss comes with its own sets of complexities, but we have always approached our situation in a way that recognizes we are among the luckier ones. In the process of a baby’s development from zygote to birth, a million and two things (I slightly rounded down) could go wrong. For 2 of our babies, something did, but we feel we fared well.
2. The right people make the situation better. Our family has been extremely well resourced as we ventured into this gig. My college roomie, a childhood friend and the notorious KLR are all audiologists. They spent extra years of schooling digging around in people’s ears. The day we got the negative hearing test back, I had an entire panel of professionals at my disposal. KLR doubled as an early-intervention specialist, so she had the right people at my doorstep to navigate EI programs and resources. I’m not sure how our story would be written differently without these people to call with questions and air frustrations.
3. Early intervention matters. Both of our babies were tested at birth, which put us months – if not years- ahead of the catch-up game. They were aided by 6 months and 3 months of age, so they spent most of their infanthood hearing sounds that help pattern their brain. That’s a big deal when it comes to how their brains work to recognize sounds. The folks that work in EI need a raise and a hug because they are gifts. We had RIHP Kelly, who came to our house monthly to help us navigate BCMH, practice listening activities, bounce questions or just share frustrations. Just a note: when you complain about taxes, please keep in your mind RIHP Kelly and the many do-gooders who make their programs work from shoestring state budgets. Not all of our social services are going to “deadbeats” who “won’t get a job.” Some of us have been served up a unique challenge and need some help.
4. It’s okay to feel the fears. Upon diagnosis, we went through a series of feelings around our children’s futures. We even asked the classic question, “will s/he go to prom?” Finally we answered, “if s/he wants to.” It changed our parenting philosophy that depends less on how others treat our children and more about what kind of person they want to grow to be. I won’t give license for kids to say jerkish things to my kids concerning their ears, but I will teach them to give grace for those who don’t understand, offer education for those who need to change the way they think and challenge them to become like the kind of friend they want by their side. We cannot change others or our life situation, but we can change the way we react to it. This is a life lesson beyond dealing with hearing aids, but I’ve been able to serve it to them at a young age.
5. Hearing loss changes the way we learn. This has been thrown in my face repeatedly this year. Both of my kids have had their aids and wear them consistently, but that doesn’t make them the same as typically hearing kids. They still require eye contact to get their attention. They have to work harder to hear the difference between a V and a B or an M or an N. Learning to read is hard, yo. Add in the fact that it’s dependent upon hearing someone verbally giving you the example… and, well, it can be a tad frustrating. Thankfully we had a patient teacher this year and H Boy is leaving Kindergarten in the early stages of reading and loving it (which was my primary goal. I’d wait until 2nd grade to have him reading if it meant it was an experience of joy rather than hatred). He read me Hand Hand Fingers Thumb yesterday and I could’ve cried with joy. I’m guessing I’ll have an entirely separate post someday as it relates to navigating school systems, IEPs, and working with children who need accommodation to stay head, not get ahead.
6. Hearing loss changes the way we interact. The oldest is a strong type-A, lead the pack, my-way kind of kid. (I have no idea where he gets it.) But at school? He’s quiet, reserved and best in small groups. However, I noticed a marked difference after we got him a new pair of hearing aids mid-year. Until we upgraded, I didn’t give as much thought to how you interact with groups when you may not hear the entire conversation or the exchanges that go on outside of your direct context. Because of this we’re going to work harder at getting both of them an FM system so that he doesn’t have to work as hard at hearing conversations going on around him. Even family members have noticed a marked difference in the way he interacts with his cousins and family beyond his immediate family. He’s opening up, joining in and even initiating conversations.
7. We can teach our children that normal is relative. My typically hearing children don’t find it strange at all that their siblings wear hearing aids – it’s simply one of the many differences among them all. Our experience has made me keenly aware of how my kids interact and understand other disabilities or life situations. I know that in our situation, I would want kids to ask us, or my children, about the hearing aids and have an opportunity to understand better that the differences are fewer than the similarities. I’ve been privileged to journey with like-minded parents who have raised their kids – my children’s friends – to see beyond the little things hanging over ears to see my children for their personality and character.
A friend told me she nominated me for the IF:Local Leaders scholarship, which was a pseudo-surprise. (Pseudo because I shared the link to friends with a mention that I would *love* to win, surprise because she spent time and wrote an essay on my behalf.) She wrote kind and true words. I may have cried a little. (I’m a Words of Affirmation person and when people tell me how great I am I get weepy and a tad bashful, not my general nature.)
I reflected on her prose and realized I probably won’t win (and that’s okay), though not for lack of talent on her part – she writes beautifully. Nor is it a self-disparaging remark or a bout of false humility. I don’t say that because I believe I’m not good enough. You’ve been around long enough to realize that I clearly believe I’m good enough for about anything. Worthiness is not where I shortchange myself (though, perhaps humility is).
No, the reason I’ll garner about 4 procured votes comes down to my ordinary life. It is, in fact, extra-ordinary. There is no spark of remarkable about my life. The most interesting thing to write about me is that I had four babies, very fast. No one will be giving me awards for an overactive uterus. And that’s okay. I’m not sure it’s a trophy I want to bring home. Next to that, I simply love Jesus, write a few words and think too much.
Now, don’t think I discount those things. Those babies, born in rapidfire succession, mean the world to me and have whittled me down, adding definition and marks of character. I love writing in this space for the 14 readers who stop by. I get just enough “you put words to my feelings” comments to make it completely worth the $11.99 I pay for the domain name each year. I write for my own sake as much as anyone else’s.
I was born into the generation of Somebodies who would Change the World. We were Special. And we were coached to seek after that Extraordinary Life. The fruit loop among cheerios, the diamond in the rough. In a favorite childhood movie, Shelby says, “I’d rather have 30 minutes of wonderful than a lifetime of nothing special.”
While it’s okay to dream big (I always do), I hope we don’t loose track of the beauty, the holiness, found in the mundane. A glance through scripture, and that’s often where you find God. At the water well. In a bush. From an ass. (I’m such a 6th grader at heart. It’s Baalam’s donkey.)
Elizabeth Barrett Browning writes in Sonnet 86:
Earth’s crammed with heaven,
And every common bush afire with God,
But only he who sees takes off his shoes-
The rest sit round it and pluck blackberries.
We live in a world that worships the extraordinary. We are, to our demise, celebrity-infatuated. When your face is put on a screen or a page, suddenly the world deems it worthy of thoughts and time. But read the tales of the ancients and we find not the Somebodies but the nobodies who are called upon to participate in God’s work. He doesn’t seek a long list of successes; he honors a lifetime – or even just a little, wholehearted time – of faithfulness. Of living truly, rightly, where you are.
That same friend just left my house after a morning of naming businesses and picking paint colors. It was nothing extraordinary. But it was holy. It was good. It honors the definition, for me, of living a life marked with God’s presence.
And that’s what I’m after. Not the extraordinary. But something so very ordinary that you can’t help but acknowledge that God lives amid it.
Most of my friends are a lot like myself. White, middle class, mothers of young children, living in smallish towns. Generally we all work, some of us not so much in the traditional work structure. We mostly have useful – if not empowering – partners in this gig. Often conversations with these friends revolve around the trials of young childhood, with a peppering of conversation focused on the bigger picture, the future, the better world. I need this solidarity and familiarity. It brings me so much peace to know I’m not alone in struggling at times.
Then I sit out outside next to my neighbors who will graduate their youngest child in less than a week. Their oldest, living in the prime of responsibility-less life, embarks today on a trip to South America for an undetermined amount of time. My neighbor, the father of the family, told me no less than three times last night – just after H boy came running down the street in his skivvies – how quickly this time flies past us.
I believe him.
Throughout my journey we’ve been given gifts of these people, ones not so much like us. We’ve sat at the table with couples in a different season of marriage. I’ve listened to the struggles of parenting teenagers long before I nodded along to Honest Toddler. And now, as we’re on the brink of sending our two oldest into the unknown realms of school, I’m watching parents at the far end send their babies off into the unknown territory of life as an adult. It gives me the simultaneous sense of realizing that what I’m doing right now matters very much in building a foundation for my children while also understanding that what I’m doing right now matters very little in the scheme of the bigger picture of life.
My other-season-of-life friends offer me the pull toward reality. Of course, my reality is my reality. The challenges of bedtime and temper tantrums are a real and valid thing. To dismiss them because “at least you’re not sending them off to college” is completely unfair. I’m not looking to put different stages in competition with each other; rather they offer a gentle harmony to my current situation.
Graduation season, weddings and even funerals temper my life in a way that reminds me that, as I like to say, life will look different in 5 years. Perspective gives me opportunity to enjoy what is without a sense of guilt when I don’t always enjoy what is.
In many ways, when given the gift of perspective, I realize that I don’t have to enjoy certain parts of my life, but I do so with a sense that I won’t get another chance to enjoy them. I won’t keep repeating this stage until it’s fun or I get it right – life will march along no matter what. This is not all that there is. Which is both a frightening and a beautiful thing.