To the Parents of A Newborn Recently Diagnosed With Hearing Loss

You are fearful. You don’t know what this means for your child’s future, for your own. I want to promise you that it will be okay. Try not to let any of the joy over your newborn be drown out by worries for the future; the future will arrive with or without your worry; the future will take care of its own–you only need take care of your child, today.

When my son was diagnosed with bilateral hearing loss eight years ago, I sometimes let fears about his future drown out the joys of his babyhood. If only someone could have told me:

  1. Your son will be able to communicate with you–whether through ASL or spoken language or both. Audiologists, speech therapists, schools, even occupational therapists all will help you along the way. Just take it one small step at a time;
  2. Your son will have friends. He will. This is not something for you to be fretting about when he’s still small enough to rest in your arms. You will be his first friend;
  3. Your son may not be able to hear the rain on the roof, but he’ll probably be the one to notice the rain outside the window when it is first falling, when it looks like hazy vertical lines, barely perceptible to the human eye;
  4. Your son will play piano. Yes, he will! Stand ready to be amazed;
  5. Your son will be one of the best spellers in his second grade (mainstreamed classroom);fullsizeoutput_3ce2
  6. Your son will take a little longer to develop spoken language than your two older (hearing) children did, but he’ll learn to read earlier due to all of the speech training he had as a preschooler;
  7. The kids at your son’s school will mostly think his blue and yellow hearing aid is cool. Sometimes he’ll be asked questions about it, but he’s never been teased.
  8. Your son will be really into comics and he’ll read El Deafo by Cece Bell (after you bring it home from the library to read yourself) just after he turns eight. He’ll relate to how the artist expresses her issues with hearing loss; he’ll be grateful for advances in hearing technology.
  9. At age eight, your son will receive his third hearing aid. In just eight years, the technology has already improved vastly. There is reason to continuously hope for miraculous advances in hearing technology.
  10. Your son will have bad days, just like everyone else. He’ll also have times of life that are more difficult than other times (typically at points of high transition). But those bad days and hard times are rarely connected to the fact that he was born with bilateral mild to moderate hearing loss (now moderate to severe in his left ear).
  11. Your child’s hearing aids or other hearing assisted technology (like CIs) might be a hassle at first, might seem scary at first, might seem a whole bunch of work at first (you might even resent them at first), but you will, one day, see this technology as just an extension of your child and you may even love that technology (because it is so helpful to your child and because it has simply become another aspect of your beloved child); and finally,
  12. It is going to be okay! Try to believe this so that you can get busy enjoying your son (or daughter) for the unique and wonderful little person he (or she) is, right now!

 

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Flu 2018: How it Progressed

Embracing winter mind is all well and good until the smallest member of your household contracts the very bad, horrible, no good, really quite awful flu of 2018. Here’s how it progressed (to date):

  1. Sunday (2/4)–Flu came on suddenly with sore throat, chills, extreme fatigue, lack of appetite and low grade fever.
  2. Monday (2/5)–Fever climbed from 101 degrees to 104.2 later in the day. My child, who never naps, slept almost all day. No appetite whatsoever. Difficult to get fluids in him but I roused him periodically for sips of water. Still, I saw his lips getting dry. As the fever crested over the 104 point, I finally gave him Tylenol. This child has a mild clotting disorder (in addition to bilateral hearing loss and asthma), so Ibuprofen is not an option. In general, I let fevers run their course, but above 104 (and climbing), I was ready to move into action with a fever reducer. Tylenol brought the fever down to about 102 within two hours. With his sleeping schedule so off and feeling better on fever reducer, he was up for a few hours in the middle of the night. He urinated two times this day. Very dizzy. Needed help walking to bathroom.
  3. Tuesday (2/6)–Wakes feeling a little better. Fever hovers around 101 to 102 all day without fever reducer. At 8:10 am, while lying down, a nose bleed starts. Nose bleeds are difficult given his clotting disorder (not hemophilia). It took one hour to quell bleeding. Two times in the two hours thereafter, the clot was disrupted and we had more bleeding, but both were resolved in 20-30 minutes. This took us up to about 11 am. Slept most of afternoon. Woke up with fever down to 100 degrees. Yay. My husband came home from work early to spell me. Yay. And was here in time to witness and clean up the vomit of mostly blood and water. Child spends evening panicked about throwing up again. 3rd day with virtually no food.
  4. Wednesday (2/7)–Sleeps in as possibility of school is still out. Nose bleeds starts almost immediately upon waking. Bright red blood all over our light colored, eco-friendly wool carpet. My husband had only just pulled out of driveway. Called him back to deal with nosebleed while I scrubbed all of the blood spots on the carpet with mineral water (very very useful in getting out blood stains). Fever down to 99.0. Mostly a better day with some appetite returning. Cough begins late in day. Because my son has asthma, we started him using his nebulizer. Anxiety about potential of returning to school the following day (yes, this child also suffers from anxiety) and so he was very late falling to sleep. Peaceful sleep, however, once sleep comes.
  5. Thursday (2/8)–at least so far. Wakes up late. I let him sleep in (for him, this is 7:45 or 8). Wakes up with quite a cough. No fever. Use nebulizer. Almost normal appetite. No nose bleed. Yay! Epsom salt bath in warmest water he can tolerate to help start clearing toxins out and loosen lungs.
  6. Friday (2/9)–Cough begins and lasts about one week
  7. Thursday (2/15)–Josh comes home with plugged right ear (surgery ear) and cannot hear out of that ear.
  8. Tuesday (2/20)–See ENT. Ear looks fine from outside. She wants to order MRI if his hearing doesn’t return in a week or so.
  9. Monday (2/26)–Ear begins to clear up.
  10. Monday (3/3)–decent enough hearing test. No MRI ordered.

 

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I’ve been very mindful this week that my Great Aunt Teresa died 100 years ago, of the 1918 flu epidemic. I’m grateful for life, mine and my lovelies.

 

Birthday Letter to My Five-Year Old

Josh at 5
Josh at 5

Dear Josh,

Someday, perhaps, you’ll read this blog that I’ve been keeping since just before you were born; you may also one day question why I completed baby books for your older siblings and have not written one word in your baby book. From the blog, you’ll surmise that, during the first five years of your life, I was immersed in worry and fear. From the empty baby book pages, you’ll perhaps ask why I failed to celebrate your milestones.

Just one month ago you turned five. I won’t lie; getting to age five was a bit like pushing a stone up the mountain. When you were born, I had just one night ensconced in the dreamy future before learning of your failed newborn hearing screening. After many bouts of false hope, you were definitively diagnosed with mild to moderate reverse-sloped, bilateral, conductive hearing loss at ten months of age. Back then, I grieved for you and the extra challenges you would face in life. I had no idea whether you’d join us in the world of spoken language. I knew, of course, that if you didn’t ever speak our language, we would learn how to speak yours.

Thanks to early intervention and hearing aid technology, at age five, you are fully lingual: a highly verbal, extraordinarily intelligent little boy. Lately, I’ve been thinking that perhaps you hit the “jackpot” of disabilities. Indeed, it was only because of your hearing loss that you received extensive speech therapy early in life. When your observant speech and language pathologist noticed issues with tongue weakness, she referred you to an occupational therapist. The occupational therapist further recognized and diagnosed Sensory Processing Disorder in you. This diagnosis allowed early and robust therapy with a disability that may have remained “hidden” and hindered you even more than your hearing loss. Because of your hard work with this same occupational therapist, most of your sensory issues have lessoned: some have disappeared.

My joy in you at age five is immense. To see you going down a slide or riding your bike, for me, borders on the miraculous. To hear you say to me yesterday, in your cowboy duds, “Now I’m going to wander the Wild West” makes me smile. I love how your words provide us glimpses into your vibrant “imaginated” (a Joshy word) world. Challenges have abounded in your short life and I know more challenges will come. Still, I am enjoying the view from the top of this particular mountain. And I am experimenting with a softer grip for the journey ahead because you’ve already shown me just how good you are at climbing mountains.

I love you so,

Mom

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Josh with big brother Ethan

Why Anne Lamott Makes Me Feel Like I am an Okay Human Being

A friend (okay, well a person who was a good friend before he became a boyfriend and then became the worst of the ex-boyfriends) gave me Anne Lamott’s Bird by Bird many moons ago. I am finally reading it while reading Operating Instructions, a memoir of Lamott’s that jumped off the bottom shelf of the Goodwill’s cramped bookshelf the other day. When I picked up the book in my hands, I knew, beyond a doubt, that God wanted me to take that book home and read it immediately. While reading it, I’ve thought, my God, this is the nearly identical experience to my daughter’s first year of life–it just happened three years after her son’s first year. The two were even born in the same season so the whole book resonates with me in every sense of every word. Why didn’t i have this little instruction book when I was muddling through my first year of parenthood? (I don’t think it had published yet in ’92)

I could quote the entire book to you–it’s all quotable–but you may as well read the book yourself, especially if you have a new baby at home or one on the way. Anyway, here is a passage from Operating Instructions that I can so completely relate to that I thought I’d share it:

Little by little I think I’m letting go of believing that I’m in charge, that I’m God’s assistant football coach. It’s so incredibly hard to let go of one’s passion for control, It seems like if you stop managing and controlling, everything will spin off into total pandemonium and it will be all your fault.

Yep Ms. Lamott. I feel exactly that way. I finally was packing off all of the junk my daughter left stacked in our dining room when she  came home after graduating college and took off for California one week later. It sat in our leaving room (sometimes, I read my typos later and just shake my head–I meant dining room here but have to leave the leaving room because everyone needs a leaving room in their house, I think) for three weeks and one morning this past week, I thought, I’ve got to get this stuff out of my house. She’ll never be able to advance in this new life she’s chosen unless I stop clinging. At least, I think I am clinging. And when I was finally packing up all of that stuff for the Goodwill, I came across a little chalk board that she’d had in her dorm room and on it she’d written two words, “Let Go.” I knew then that I was on the right track with hauling all of her discarded goods off to the Goodwill (where I was, in exchange, given Lamott’s book). I’d had my sign.

It’s hard though–this letting go. I remember when Hannah was born and I was just kicked in the gut with this awful sense of responsibility. I had to grieve for months the loss of just living for myself because I knew then and there, that everything in my life was that much more cling-worthy. Before Hannah was born, I didn’t worry about death–mine or another’s. I’ve never doubted God folks. Even if at times, I don’t act like it. But now, I feared my own death, because it would take me from this precious creature who needed me so much AND I feared even more so about every conceivable possible bad thing that might ever befall her. And already, at age 22, I was smart enough to realize that this fear would likely be my constant companion until the day I died. So she’s off now in California and somehow, across the distance, she managed to tell me that I need to Let Go.

More than anything else, this blog seems to always come back to this theme of letting go. Motherhood. Open yourself as wide as possible, push a baby out, open your heart as wide as possible, let this little one into the heart’s deepest crevice while doing the best you can to protect this little life and, at the same time, let go, a bit more everyday, so that you both can live.

Here’s the other reason I am so in love with Anne Lamott right now. I am, after three long years, finally nearing the completion of my manuscript about my first few post-divorce, single-parenting years. The manuscript is much too long right now and kind of unwieldy and half of it is pure crap. Ethan told me last week that F. Scott Fitzgerald edited his books by saving only the best sentences. So soon I will be birthing this fourth baby of mine and then I will be starting the process of letting go, a little every day. To that end, I am embracing these words of Lamott from Bird by Bird: Some Instruction on Writing and Life:

Write an incredibly shitty, self-indulgent, whiny, mewling first draft. Then take out as many of the excesses as you can.

Okay. I’ve got the incredibly shitty, self-indulgent, mewling part nearly done. Now to cut out the excess and just like with our perfectly good Britax carseats that we’ve just replaced with two booster seats, there is no Goodwill that will take that excess. I guess some things just have to go in the trash.

How did I get to be so human? How did I finally start to feel okay about this humanness just today?

Old Grain Elevator Upcycled into Coffee House; Crappy Dating Life of Single Mother, Upcycled into Book
Old Grain Elevator Upcycled into Coffee House; Crappy Dating Life of Single Mother, Upcycled into Book

The above picture was taken this morning at coffee with my al-anon friends who had to listen to all of my bad ex-boyfriend stories today (I was in a mood). Like the Best Buy executive who demanded that I write him a check to cover the super high-end coffee pot he’d just given me a few days before I broke up with him. I’m like, “Dude, you make about 5 times the salary I do and I didn’t want this expensive, snooty coffee machine.” Nonetheless, I wrote him a check for $212.00 (that would buy my kids one month of groceries) because I wanted him out of my life. He was a real winner.

After all that groveling in the muck (my post-divorce, pre-second marriage dating life was like a journey towards Mordor without Tom Bombadil’s house and Rivendell), I’m grateful life that Chris was at the end of the journey instead of a bubbling pit of fire.

Today’s Youth are the Prayer Flags to our World

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Having just come from my daughter’s college graduation, with a baccalaureate that was basically a moving collage of seniors being creative (and one being slightly grotesque, which offended my parents), I am in awe of the raw energy, beautiful minds, and inspiring creativity of today’s youth. This gives me hope when I could just hide in my bed all day, overwhelmed by the problems that face our world today. But instead, I feel uniquely optimistic because of what I’ve seen recently in the young people around me who now stand at the threshold to our “grown-up” world with the drive and enthusiasm needed to instigate positive change. Perhaps more than ever, this is the generation upon which our collective future depends and I wholeheartedly believe in them. And, I raise them up across the front porch of my soul as the prayer flags of our world.

My daughter recently showed me this short film project (access by clicking here) that her friend John TerEick created for a poetry class. It is a moving collage that beautifully captures the poem, “Self-reliance” by Dobby Gibson. Hannah even has a small cameo in the film (she is the one “driving north”). Moreover, one of Hannah’s high school classmates (and friend) composed and performs the background music.

As I watch this film, I feel hope for what lies ahead.