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!

 

IMG_6727

Advertisements

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

IMG_1819
Josh with big brother Ethan

A Mother Writes to Her Unborn Daughter (and unbeknownst, to her own future self)

Well, this past month, my daughter and I had a rough little patch of it. Basically, I was trying to take over in the pilot seat of her newly launched adult life. It was sort of that scene from my all-time top favorite movie, Apollo 13, where the Tom Hanks character (sad that I know my actors’ names better than my astronauts) inadvertently sits in the seat of the Kevin Bacon character, who is now the pilot (and Tom Hanks is the Captain)–he looks at him and says something like, “Sorry, old habits die hard.” (this is a very very loose version of the true quote–I am not going to dig out my DVD at this moment to get the exact quote for you all).

Two weeks into our impasse (with Hannah in CA not speaking to me, and me here knowing I overstepped my bounds: at the same time thinking “but I am right!” Still, as the defensive driving quip goes, “You can be dead right and still be dead.” Right doesn’t always matter), I awoke in the middle of the night knowing I needed to find a journal entry that I had written when I was pregnant with Hannah. I even knew where to look for this archaic document. It was in “the stacks”–one of my many huge Rubbermaid containers containing old journals. Finally, an old journal entry proves its value! Anyway, I was shocked to find that I wrote this entry when I was six months pregnant with Hannah. At seven months pregnant, I turned twenty two. Hannah turns twenty two in just one month. Hence, I wrote this journal entry at the EXACT same age that Hannah is now. I essentially wrote a journal entry to help myself along in the future. Here’s what it says:

June 15, 1992

They say that by the sixth month of pregnancy you, my child, can see, hear, taste, and feel emotion. I wonder how you felt yesterday when you heard me yelling at your grandmother; saw the walls of my abdominal muscles ball up in knots; heard my heartbeat increase; later heard my sobs of frustration while you were bounced up and down by a heaving diaphragm. So fragile still and yet you, like me, are already susceptible to the changing moods of your mother. I look down at my outstretched belly and try to explain the unexplainable: the relationship between mother and daughter.

I might start by describing the subtle rift created when a mother repeatedly tries to get her sole daughter, one who only agrees to wear jeans and corduroy pants, into pink, lace dresses. The battles waged in department store fitting rooms morph into larger battles fought over the dinner table when the daughter comes home to visit. The exact subject matter of these exchanges may change, but personal autonomy is always the undercurrent driving the feud.

How can I explain how scary it is for me now, at age 22, to be standing on the threshold of becoming a mother when I still haven’t learned how to be a daughter? I know you are going to be a girl, even though the ultrasound didn’t confirm it. During the test, you kept your legs firmly crossed in front of your genitalia; only a girl would do such a thing. I know you are a girl, even though I wish for you to be a boy because, with three older brothers, I’ve observed that the bond between mother and son is so much more humane than the one between mother and daughter.

Mothers and daughters spend an entire lifetime trying to shape the other into the ideal mother or the perfect daughter. Worse yet, I’ve observed how only daughters, like myself, feel the burden of this desired perfection more acutely than those with sisters, who will help shoulder the unbearable weight of perfection.

I don’t want to ever ask you to be perfect my dear one and I know already that I will fail to be your ideal mother. I hope that 22 years from now, you are ever so much more the person that you want to be than the one that I want you to be. Know that the 22-year-old me understands, for I’ve walked the road as “daughter” too.

Love,

Your mom

I typed it up and sent it to my daughter and you know what? Forgiveness abounded on both ends. Grace and love brought us back into the circle of each other’s heart.

P.S. It is so true about mothers and sons too. I have two sons, and grace flows easily between the three of us. I will, from now on, work to cultivate that same kind of grace with my daughter. And give up my need to always be right.

IMG_1556

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.

Heart Center

today, my heart is
round.
it is on an airport
runway.
it is in a high school
classroom;
driving to Macalester
College;
slipping down a frozen
driveway;
standing in the center of
Times Square;
stacking primary colored
rings;
waiting for chirping in a
sound booth;
wearing headphones on a
school bus;
napping in the middle of a
large bed.

My heart is the center of
the wheel, standing
practically still and
watching as these spokes
speed in light years
around me, always
though, holding on.

H. Parton

Slowly, I am capturing poems off my Wednesday Poet blog–at least some of the more (perhaps) worthy ones, since I am no longer curating that site. Although this poem is about my role as mother, it is appropriate for dads too on this day meant for celebrating fathers this June, 2014.

My father and I about 8 years ago.
My father and I about 8 years ago.

Little Boys Love Dress Up Too . . .

Two photos of my two boys, taken twelve years apart (June 2002, June 2014). Interesting how the 12 year old picture has much better quality. My dad took the photo of Ethan with his digital camera. Ethan, who is now 19, took over my digital camera last year and I am left hobbling along on a three year old iPhone. I recently captured this photo of Ethan from my dad’s computer. I hadn’t known it existed and what a find.

I love looking at this photo of Ethan because it was taken in the town home that Han, E, and I lived in my first year post-divorce. In spite of the divorce, I have such happy memories of that year. The three of us truly became a tightly bonded family unit in that year spent in that town home. I remember how the kids would turn their head to watch themselves eating at that awful wall-sized mirror-all (mural). I didn’t even own a vacuum cleaner that year but had to get down on my hands and knees to dust bust the crumbs left under the table after a meal. Fun times.

The interesting thing is that, if I were to take a picture of this same farmhouse table today (now in my basement) you would see that it is still covered with baskets of art supplies, construction paper, coloring books, and finished pictures. The surface of the table, which was made from recycled pub walls in England, was still relatively “new” in the photo below (while the bottom of the table top showed a deep patina of years). This surface now has its own nice patina of wayward marker lines, paint blotches, and deep grooves where little hands couldn’t resist digging the point of a scissor into the soft wood of the table top. And there is no way that I’d ever part with this table (willingly). It helps to tell the story of my life.

Ethan (at age 7)  dressing up mostly using his sister's clothes.
Ethan (at age 7) dressing up mostly using his sister’s clothes.

 

Josh (age 4) wearing his sister's sparkly shoes and her flower headband.
Josh (age 4) yesterday, wearing his sister’s sparkly shoes and her flower headband.

Going to California

My daughter leaves tomorrow at 5 am. Driving to California. I am sad beyond anything I expected. This letting go stuff doesn’t seem to get much easier.

I am just finishing up a mixed CD for her road trip and her next adventure in life. And other than that, I am just going to agree to be in this moment, in the sadness of this ending. I am going to practice not fighting the emotions but letting them run through me as they need to, without denial, but also with the absolute knowledge that feelings come and go, emotions rise and fall, and as I said to H. yesterday, “The hard times will come, but then the good times will come again and you’ll get up on your feet and the hard times will come again–like waves in the ocean.” It helps to know that we won’t likely be in any one place too long. Always. Always. There is a time for joy and a time for sorrow; for mourning and for dancing. I don’t think I’d have it any other way because even dancing can wear a person out.

Going to California Playlist

Chris’s California Trip                        Michael Brook

Going to California                                    Led Zeppelin

Wide Open Spaces                                    Dixie Chicks

Ramble On                                                Led Zeppelin

Goin Down The Road Feeling Bad            Grateful Dead

You’re Gonna Make Me Lonesome             Bob Dylan

On And On And On                                    Jack White

Omaha                                                Counting Crows

Coming Into Los Angeles                        Arlo Guthrie

Intro                                                            Jackie Greene

Hollywood                                                Jackie Greene

The Bare Necessities                                    Bruce Reitherman (The Jungle Book)

La Vie Boheme                                    Rent Cast

Tiny Dancer                                                Elton John

Freedom At 21                                    Jack White

Can’t always get what you want            Rolling Stones

Ain’t No Mountain High Enough            Marvin Gaye & Tammi Terrell

Oh! Sweet Nuthin’                                    The Velvet Underground

Sunporch Cha-Cha-Cha                        Dave Grusin            (THE GRADUATE )

Los Angeles At Night                                    Michael Brook

934848_459571997465758_427867035_n
My adventurous, world-travling daughter