Perfectly Imperfect

So it’s Christmas week! That week that we all fantasize will be like a Norman Rockwell painting, but looks much more like Monet—kind of messy up close, but if you squint you can see the beauty.

 

If you are wondering what I am doing this week, here are some of the roles that I am playing:

Protector of the manger and toy rearranger.

Nativity lamb gluer and elf magic doer.

Chief changer of diapers and chocolate mouth wiper.

Ear wax remover and sweeper with hoover.

Sugar cookie baker and Rainbow Loom maker.

Battery charger and photo enlarger.

Hello Kitty bike searcher and old clothing purger.

Target card checker and Underwood heckler.

Advent awaiter and football bowl hater.

Greeting card opener and wholehearted hoper.

Referee of fights and admirer of tree lights.

Sangria drinker and blog posting thinker.

These are a few of my favorite things!

Ok…My girls are kinda going through a Sound of Music phase this month, if you haven’t noticed. I’m just happy to be out of the Annie phase for a while, actually. And I'm thinking that the Mary Poppins phase is just around the corner.

So….Anyone else struggle with trying to get the perfect Christmas Card photo?  Two years ago we tried to do it ourselves and it was a nightmare.  The girls were either fighting or making goofy faces or pouting or not looking at the camera.  I think we took close to 80 pictures until we got a good one.  I swore that was the last time I would do that so for the past few years, we have been using my talented friend Alix Cloud who managed to get our amazing one shot in 15 minutes this year with no pouting or crying.  Not even from the six month old.

Really, I think the problem two years ago was me, not the kids.  I wanted the perfect shot that showed how beautiful and well-behaved and well-matched my princesses are.  Everyone wants to see the perfect family photo on the card, not the crazy one that is in the other 79.  I was striving for the image of perfection.  When I look at my Shutterfly account now and remember that Christmas—the bangs that Ella had to have because my dad thought it would be ok to cut her bangs nineteen fifties style for me while I was at work, the rosy cheeks implying an oncoming headcold, the pouts and silly smiles, the small stain on one of the red and green dresses--  those 79 outtakes are precious.  And real.  We have many more imperfect moments than we have perfect ones.

 

 

Plus, God has a sense of humor, I think.  He sent to the mom who strives for the image of the perfect family three gorgeous, awesome, amazing, inspiring, and at times frustrating, children.  Two of which were born with ears that do not function perfectly. 

“So you think that if you work hard enough, you can achieve perfection, do you?  Well, here you go!” says the Big Guy. “Now go learn something about the beauty of  imperfection.”

To prove how imperfect life is…here is a video of me trying to get Ella’s reaction to seeing Santa’s bounty under the tree while also trying to attach her implant to her ear so she could take in the whole experience.  The result is a little crazy, with a gem in the middle and then we lose an implant magnet at the end and the camera goes off! O-M-G!

 

I recently finished a book by Brene Brown called, The Gifts of Imperfection: Let Go of Who You Think You are Supposed To Be and Embrace Who You Are. It is an amazing account of her discovery that truly happy people accept imperfection in order to live whole heartedly. 

She says that when we numb the dark we numb the light. And in contrast, when we lean into joy, we can expect tender and vulnerable to be part of the joy.   Doing both pain and joy at the same time is what makes us resilient. 

I buy it all—hook, line and sinker.

This year on our Christmas card we wished for everyone to make and hear some joyful noise this Christmas.  My kids will do both.  Maybe imperfectly, but they will do it.  I am working on leaning into the shrieks and the bickering and the tears and the laughter and the giggly games of peek-a-boo and the music.  All at once. 

Christmas should be that—an appreciation of perfect and imperfect coming together.

Christmas Eve service at my church was a cacophony of joyful noise.  We always attend the 4pm Family Services because you can keep your kids with you in the big sanctuary and it is a noisy service, so it is ok if your kids cry or kick the pew. 

As I watched the Nativity story unfold in words and song, my perfectionist mind took inventory of the things that made us less perfect as a family—the matched dresses, but unmatched shoes the girls were wearing, a tear in one set of tights, at least two runny ears among us (two kids with ear tubes will do that to you in the winter), two implants, one hearing aid, a newly bespectacled first grader’s face (not to mention the contacts and eyeglasses on the parents).  Through all of that, if I really leaned into it, I could see my kids’ smiles of delight at the junior choir’s performances.  I caught Ella serving tea in the pew to her imaginary friends and Wyatt making the other families giggle with his big toothless grin. I was elated to find Ella actually enjoying the bell choir (who says music appreciation is a no-go for kids with Cochlear Implants anyway?) and Avery reading every word of the carols in the bulletin. Especially the hard ones. 

All five of us were present and accounted for and imperfect and glorious.

The pastor said it best when she exclaimed that the 4pm Christmas Eve service always “gets you” because of the noise. At Christmas, we remember that Jesus was fully human.  He even cried as an infant. He was imperfect in the flesh and that is the point.  Crying infants in church on Christmas Eve is a reflection of that night more than two thousand years ago. Beautifully imperfect.

I have to say that Wyatt was a Holy Infant at that service, too.  He never fussed.  He paid attention to the music, he smiled at our pew neighbors, and he fell asleep before the end of Silent Night. I was proud and content as I carried his limp little body through the church to the exit and everyone who saw him made that “aww, he’s so cute” face. My sister-in-law warned me that I need to keep him far away from Buddhist monks, or they may declare him the next Dalai Lama and we would never see him again.  He is that peaceful. 

Until he is not.

Today, he proved that he is, in fact, a human baby. I optimistically exercised my whole hearted living principle by taking all three kids to the local Center for Puppetry Arts here in Atlanta.  We had five tickets because I thought my mom and Keith would accompany us, but both of them had better things to do (like travelling and working), but I did not want the girls to miss the production of Rudolph the Red Nosed Reindeer.

 

For a minute, I considered inviting our babysitter to join me, but then decided to chance it alone. Not smart, but definitely whole hearted.

We were late, as we chronically are, and we rushed in to sit down in that theater’s version of the balcony just before the lights dimmed.  Every time they go through their spiel about turning off “cell phones and anything that lights up” my stomach clenches just a little. 

Side track: When Avery was four we had her birthday party at the Center for Puppetry Arts and Ella was just 17 months old with a brand new Cochlear Implant.  The implants have little green lights on them that tell you when it is working and when it is not. I believe the lights can be disabled for adult CI users, but do not ask me how to do that because we never think about it.  It is actually really necessary for parents to be able to tell if a battery is out or something is broken.

While we were sitting there waiting for Charlotte’s Web to start, an usher came up to us and tapped me on the shoulder and asked me if I would kindly turn off the flashing lights on Ella’s “hair clips” so as not to disturb the other patrons.  I was very taken aback that the lights on her implant would cause a disturbance to the production and looked around me to see how much light it was emitting.

 It was like a hyperactive firefly had landed on her ear.

I could see how the people behind us may find it obnoxious.  Apologetically, I explained that we could not disable the lights and we were not going to take off her hearing device, so they would have to live with it for this one performance.  Ever since that incident, I have been worried that a new usher will tap her on the shoulder and upset her for not following the “nothing that lights up” rule. She would be upset by that now that she is older.  I like that place a lot and think highly of it, but I have no shame in threatening an Americans with Disabilities Act claim if they mess with me.

Anyway…In the same spiel about the lights, they also ask you to take all crying children to the hall to “catch their breath”.  Almost on cue, Wyatt started fussing. 

Now what??  I could duck out of the door with him which was just three feet from our seats, but when the door closed behind me both girls would be sitting there alone.  Would they fight? Get scared? Had I just drawn attention to Ella’s light-up ears with my fussy baby? 

Thankfully, the usher stationed next to the door was an angel in disguise and agreed to watch the girls while I ducked in and out with Wyatt for the entire hour.  I’m guessing he has an ear infection or something because it is not like him to be such a grouchosaurus.  In spite of it all, the girls had an absolute blast at the show and they both were singing along with all of the songs from the cartoon. 

And what a great message for us to discuss in the van on the way to lunch—misfit toys and bionic noses and elves that want to be dentists.  Avery said she liked the part where Clarice told Rudolph that his red nose was handsome.

“Aww, but it’s so different from everyone else’s.”

“But that is what makes it grand.”

 

 We can understand how they both feel.

Here is the photo of lunch afterwards that made it all completely worth it.

Tonight, I am praying that the joyful noises that fill my home this week can continue to bring me joy, and bring me frustration.  I know that living with both brings me the gifts of whole hearted living.

Now back to witnessing the reenactments of scenes from the Sound of Music by the Mini Muse Players. Did I mention such scenes were from the Carrie Underwood version?  And that they prefer the “Sixteen Going on Seventeen” scene?  Complete with mimicking the part where Liesel and Rolf roll down the hill together?

Awkward!!

Merry Everything and Happy New Year!

 

Zen Shower Flower in Child Pose

Doesn't the name of this post make you want to say "Namaste"? 

So...Bathtime is wild at our house. Wyatt is actually really happy in the bath and loves to splash which is really fun at his age, so I'm not really talking about him.  However, having another kid to bathe has not made the daily ritual any easier to get through efficiently.

The real problems lie with the tiny females in my house. I usually have at least one of my girls totally rejecting taking a bath by running for various corners and closets to avoid the tub.  Pretty standard young kid stuff-- they know the routine and after bathtime comes bedtime, so therein lies the need to flee.  Usually one of them is wailing about not getting any deserrrrrrt yet!  Or just repeating "NOOOOOOO" Over and over until I want to just give up. It is a wonder that I do not look like a total drown rat by 9pm every night.  Or maybe I do. I'm not telling.

I had started to notice, though, that the time AFTER bathtime is quite different from before bathtime.  It is actually quite Zen.  The kids are quiet and calm.  Then I realized that dinner is also a hot mess at our house and was reminded of a quote about raising kids that said, "When they get crabby, put them in water." I had an Ah Ha moment.  Why do I insist on crazy dinner followed by crazy bathtime, followed by Zen?  Delayed gratification at its best?

No. Mostly it is because I am programmed to think that this is the proper order of things.  My mom did it that way, so I must also do it that way. Dinner, then bath, then bed. 

In my house, however, it simply was not working to do it that way.  There was exhaustion at dinner and rejection at bath time and it makes for a very long two hours between dinner and the glorious time that comes after the kids are asleep.

So I changed it.  Last summer I flip flopped dinner and bathtime so that we do bathtime at 5pm when we can.  The new order of things is: Bath, Zen, Dinner, bed. It makes dinner a lot more reasonable and less loud.  We have fewer fights over who gets the butterfly plate and who has to settle for the ladybug.  Who knew I could write my own script, people???!!!  Besides, doing it like we had been doing it was the living definition of insanity.

Ella and Avery are also much more inclined to take a shower in the Big Shower in the master bath than to take a bath or shower in their own bathtub.  Go figure.  You know what, whatever works.  Are they getting clean?  Yes, AND often at the same time because there are two shower heads in there! 

 Sheer brilliance.  Look how happy they are in the Big Shower.

So maybe this sounds normal to you and you are wondering where I am going with this.  Here is the wrench-- bathtime for me as a  parent of a kid with cochlear implants, no matter where and when, is the total extreme of wild and shriek-y and then complete Zen. 

Ella has to take off her implants to take a shower and she knows that this is her time to 1) use sound as a weapon against us in a very echo-y place, and 2) not listen.  Literally.  So it is basically bedlam.  She turns on her inner demon and, truthfully, I am lucky if I get all the shampoo rinsed out of her hair so that she at least smells clean for school the next day. 

Today, she was standing on one damp foot on the tile bench in my shower and writing her name with her finger in the steam on the glass shower door.  A horrible bloody scene waiting to happen.  And every time I told her to sit down, she would close her eyes and laugh.  The deaf four year old version of "I can't hear you, Mom."

When she gets soap in her eyes, she lets out the most ear piercing scream that you have ever heard in your entire life.  She can't hear it, so she does not care.  Plus she has no monitor for how it sounds, so she just conjures up the most awful combo of notes that you can possibly imagine.  Like an out of tune cat trying to sing about getting its tail run over. Seriously, in my nightmares I hear her  belting out "I NEEED a TOWELLL NOWWWWWWW!" Worst. Sound. Ever.

But then something beautiful happens when she steps onto the bath mat. She takes the towel that is wrapped around her, opens it up like Batman and falls down into a face down fetal position on the mat.  It is not quite the fetal position, because she is face down.  The towel almost completely covers her body with the exception of a top of the head and sometimes toes.  She is like a perfect little toadstool on the mat.  What's funny is that she usually says (or shouts) "Chair" right before she falls to the floor. My girls play this game that wherever they are in the house, if they yell "Chair!" to each other the other sister comes running and drops down into this modified Child Pose and the yeller sits on her back.  I dunno...some kind of weird sister code that I, who only has one brother, does not get.

The after bathtime in full crouch is transformative to her, though.  Avery never sits on her back because we all know to leave her alone.  Even if we wanted to get her attention or make her stand up, we couldn't because she can't see and she can't hear.  It is like she was in the shower to get out all the wild impulses and now she is doing yoga with meditation before she has to put her sound back on.  One extreme to the other.  Sometimes hair brushing will bring back the demon, but usually after this 5 minutes or so of Child Pose, she is ready to face the world.  I just leave her there until she is ready to get up.  Then she shrieks, "MAAAAMAAAA! I WAAANT my EEEAARS!!" and life is back on, Zen has mostly been achieved and dinner can be had.

One more bath story: Right before Thanksgiving, we had strep invade our happy home.  Ella, Keith and I all got it and it was not fun.  The puke-y, scarlet fever kind.  The put-you-in-bed-for-at-least-54-hours kind. I knew Ella had it right away when she woke me out of a deep sleep at 3am with bright red cheeks, running an obvious fever, and then proceeded to puke on my comforter.  Ella also has her ears off when she goes to bed, so there is usually inappropriately loud and shriek-y tones that wake us up in the middle of the night as well.  Or she just flips on all the lights to wake us up.  Either/or. After the puke, I decided she was going right in the tub so there was no use in putting her implants on. 

I showered her off and was putting on fresh pajamas, Ella did something amazing.  She did not fall down into Child Pose this time.  Instead she started singing. In tune. About the colors of the rainbow.  IN SPANISH!!!  There she was, completely without sound, sick and doing something she despises- taking a bath--and she started singing about colors in Spanish.

"Verde, Amarillo, Rosa...." 

Perfect accent by my French-trained ears, too!

Let me repeat myself:  My sick, deaf, four-year-old started singing to me in Spanish at 3 o'clock in the morning.  A.MA.ZING!  Talk about bright spots, huh?

I will gladly endure a million more wild, shriek-y, showers.  No question.

I found my Zen.

Hearing Aid Bill Vote Today!

This guest post is from the masterminds behind Let Georgia Hear-- Kelly Jenkins and Sara Kogan.
I am pulling for them today and the Commission (see below) is voting on HB74.  They have been tireless in their efforts and I could not be more proud of all they have done, but today will be a long day for them.  Keeping them in my thoughts.  From Kelly and Sara:

In 2011, we started Let Georgia Hear with a group of parents of children with hearing loss.  We started Let Georgia Hear because hearing aids for children are not covered in our the state of Georgia even though 20 other states have passed bills requiring coverage. Upon the formation of Let Georgia Hear, we launched a website, started an online petition, began approaching non-profits and other organizations for support and we started building relationships with legislators and influencers within our state legislature.
 
Since our inception, it has been a whirlwind. Let Georgia Hear has been featured in both the local and national news. At this point in time, we are at a crossroads with the legislation (House Bill 74). The Special Advisory Commission for Mandated Health Insurance will vote on our bill on November 18th. Though the Commission's position on the bill will be non-binding, it will be incredibly difficult for us to gain any traction within the legislature during the upcoming session without the Commission's support.
 
It has been wonderful working on Let Georgia Hear with so many talented and passionate parents and we are committed to staying the course until this bill is passed!
 
Respectfully,
 
Kelly Jenkins and Sara Kogon, Co-founders of Let Georgia Hear

Lobsters

 

Remember that Friends episode when Phoebe told Ross that of course he and Rachel were going to end up together because she was his lobster? 

The theory was that lobsters mate for life.  Everyone has that one true life companion and no matter what might separate you temporarily from your lobster, it is fleeting because you will eventually end up with them for all of eternity.  I always thought this idea was reserved for romantic relationships.  And back in the 90’s before I met my husband, I hoped that I had a lobster and that we would end up together.  I had theories about my ‘soul mate’ and who that person was and whether we would “end up together” because it was “meant to be”.  The thing about your lobster is that you really do not know who yours is until you find them. 

I imagine that this person, like Phoebe says, would metaphorically walk around the lobster tank with you, holding your claw for the rest of your life.  You would never be alone and you would know that you belonged somewhere.  What I never predicted was that circumstances beyond my control, after my marriage and after two out of three of my kids were born; I would find a whole tank full of extraordinary lobsters.  Maybe not the kind of lobsters I had planned for, but arguably better. And here they are. Well some of them, anyway.

 

These ladies are my Moms of the Ear…my Speech School moms.  They are mine because I know them intimately, I know and love their kids, and they “get” me and my journey better than any other people on earth.   Hearing loss brought me my lobsters. 

Let me be clear that we are not exactly alike by any means—we all come from different income brackets, marital statuses, careers, educational institutions, etc.  but the thread between us (raising a child with hearing loss) is unique.  Also, since hearing loss does not discriminate, our differences are completely irrelevant.  Having this experience leveled our playing field.  When we get together there is a lot of fun and there is sharing about our kids’ progress or our latest worry or our plans for next school year.  We are all cheering each other on and routing for each other’s kids. We accept each other without judgment. Our personalities are different but we never really clash. We express concern for the others in the group and we think through solutions together.  Like soul mates, we have a magnetic pull back to one another and having each other is a matter of physical, mental and emotional survival.

I wish that everyone reading this blog could 1) know these particular women and 2) have a group of women just like them in their own lives.

In lieu of introducing you to your own network of lobsters, let me tell you about some of mine:

Kelly and Sara have three kids each, yet what they are known for is being amazing advocates for all of the kids with hearing loss in our state. They are working tirelessly to make sure that hearing aids are covered by every child’s insurance company.  It is hard work and they are not sure how long it will take, but they are never deterred. They solve problems together brilliantly and impress me every day with how savvy they have become on GA legislation and how to get things done without being obnoxious about it.  They are the co-founders of Let Georgia Hear…if you get a chance check out their website and sign the petition no matter what state you are in.  All children deserve access to hearing aids to learn language if they need them. Period. Kelly just won the Atlanta Business Chronicle 40 Leaders Under 40 Award. These two inspire me to do more every day.

Julia is a single mom who unfairly described herself as “letting everyone down” the other night.  She said she told her trainer to suck it up because she was a mom and her kid has special needs and she has a job and therefore she was not going to let him shame her because she ate some things she should not eat last weekend.  She was basically trying to say , “Get in line, dude.” We Moms of the Ear are always feeling like we are letting people down, but in truth we are shining like diamonds every day. Unfortunately, it never feels like that to us.  We always think we should be doing more. Julia is also generous and easy going and gorgeous and has a beautiful home and I have never seen her down in the dumps about her son and his challenges.  She says unequivocally that she never measures her son against other kids or his chronological age or any other societal expectations because he is who he is and as long as he makes progress, she is happy.  She is incredible. She never lets me down.

Scarlett is a former teacher who is married to a school principal, but she is at home with her kids now.  She has to be because her youngest daughter is attending the Speech School and it takes her two hours to drive there and back every day.  She does that two hour commute, day in and day out, without a single complaint.  In spite of it all, she is always the life of the party.  She could easily feel sorry for herself, but she chooses to find ways to lift herself up and to lift up others as well. It has been four years now that she has made this commitment to her daughter.  She knows it means sacrifice for her and even her other kids, but she never waivers.  She is the strongest voice in the Let Georgia Hear movement other than Kelly and Sara and she is willing to share her own family’s story of struggle to purchase hearing aids in order to help all kids in GA.  She somehow finds it in her heart to cry with me about my own family because she is deeply empathetic.  Mostly, she is a fighter.

Laila has a daughter with the same condition as my Wyatt who was diagnosed later than most of our kids.  Her daughter has made amazing progress in the last couple of years, especially since she received the cochlear implant.  Laila was very brave in making that decision to implant her daughter and like me, doubted it every step of the way, but she pushed through because she knew it was the right thing for her.  She has a demanding job and now is awaiting the birth of her twin boys!  Even on bed rest, she still finds time to be the co-President of the Parent Teacher Committee at the Hamm Center.  Lately when I see her, she is planning the next event or working on donations of treats for the cookie decorating party coming up in December.  She is also worried about her twins and whether they will have the same condition as her daughter.  However, it will not matter to her at all because she knows how much of a blessing her kids are and she will celebrate each one of them every day.  She is an angel.

I could gush about these ladies all day long and each of the others pictured (and not pictured) in the photo above.  But that is not really the point. They all have their story and each of their stories touch my heart and keep me going. The point is, I seriously, could not survive this Profound Life, and frankly, one single Profound Day without these moms. 

Lately, in my work, I have been thinking and planning ways to increase and infuse parent to parent support (like the support I get from my group of moms) into every state early hearing detection system in the U.S.  What are the elements of successful support?  Is it just friendship or, as my intuition tells me, is it friendship plus informational support, plus leading by example? How do you seamlessly fold in new members of the network?  How do you create a lasting commitment and sacred love for one another’s kids?  Can it be cultivated or does it have to happen naturally?

My gut tells me that you can cultivate it.  I am lucky enough to have a group of women at church who have been meeting on about two Thursdays a month for close to four years.  We all were invited to the group by a role model—a person whom we all want to be.   Because of this woman’s deep faith, her ability to make us feel comfortable, and her authenticity and concern for the spiritual nature of our lives, we were all pulled in easily.  Who would not want to spend more time with this woman and grow in spirituality at the same time?  No brainer.  Then we leaned in with a fierce commitment to showing up, to sharing with each other and to keeping a sacred trust and confidentiality.  Now I absolutely hate to miss the meetings of that group.  So, over the past four years, I have been fortunate enough to see that people can certainly create an environment of deep support that we will always return to.  The primary difference is that these women at church chose their faith and executed free will to be a part of the group.  With hearing loss, you are hit with the diagnosis and you are typically dragged in kicking and screaming and crying the whole way. 

That has to change. It does not have to be so terrible in the beginning.  We need to shorten the path out of despair for moms of children with hearing loss.

I feel particularly responsible to solve this problem because I like to share my good fortune.  I think that may stem from a feeling that I am undeserving of anything unless everyone else can have it too. I believe that Moms of the Ear need each other for survival and I have found my people and want others to find theirs too.  No one should have to endure the path of their life without their lobster.

Maybe once you discover the power of this type of support, you just naturally want to pay it forward. That is why one Mom of the Ear feels compelled to mentor another as soon as they have the capacity to do so. Lobsters helping baby lobsters.  It is how we make meaning out of our Profound lives. I read this blog the other day that describes the mentoring of other families as a purpose in life in direct rebellion to the hard work and the heartache that also lies within the journey.   It is exactly what I have been ruminating about ... 
 http://ardinger.typepad.com/bliss/2013/11/a-purpose-we-found-it.html

Here is a crazy story about this spiritual vocation of mine…to mentor and serve.  Last weekend, I was exhibiting for GA Hands & Voices at the Atlanta Area School for the Deaf Fall Festival.  Hands & Voices exists in most every state in the US as a parent-to-parent peer support agency . We actively partner with professionals in the state to shepherd families from despair to determination on their journey through childhood deafness.  In GA, we are working on creating a Guide By Your Side program that will hopefully create paid positions for moms and dads to mentor other families with children who are deaf or hard of hearing.  We do this support activity without bias toward communication modality—ASL, Listening and Spoken Language, Total Communication, etc. 

I admit I was a bit out of my element and wondering if I was going to be able to get additional members for our Hands &Voices Chapter at this particular event because we use no sign language in my family and almost all of the folks at the event were signers or had kids who used ASL to communicate. 

Then, in walked my newest lobster.  I met a mom who was like me, but not. She had the same configuration of children with hearing loss in her family as me: her oldest  daughter was hearing, her middle daughter is profoundly deaf, and her youngest, a son, is hard of hearing. Sound familiar?

There were a couple of differences between us though.  Her son wore bilateral hearing aids and mine is unilateral.  Her daughter does not have implants and she attends the Atlanta Area School for the Deaf. The major difference was that she was a child of deaf parents and had grown up culturally Deaf—her first language was ASL, even though she could hear.  Her sister and dad were also Deaf.  She had married a Deaf man who was an oral communicator with good speech, but needed ASL receptively.  In spite of our language choices, we had a ton in common.

She and I bonded immediately over our kids.  We bonded not only because we had a similar kid configuration, but because we both had some kind of genetic deafness on our dad’s side and because we both were struggling with getting the right kind of educational support for our kids.  Her middle daughter was doing great at AASD and reading two grades above grade level, but her younger son had been placed in a mainstream setting and was struggling in his classroom. For this little boy, whose family was always using fluent sign language all around him, he depended on that visual support to fill in the gaps. Yet, because of a dumb decision by the school system, he had no interpreter in his classroom. 

In my case, Ella is also struggling intermittently because of her teacher’s lack of consistent use of her FM system.  Because my family had more progressive loss and had never had any profound deafness before my daughter was born, my family of origin had never learned sign language.  Unlike this mom’s family, we really needed the FM system to fill in the gaps for Ella. Different needs, but yet the same.

Truthfully, I felt a little self-conscious around her at first because I was afraid she would disapprove of my choice to get Ella implanted.  I explained to her that I felt inadequate to be able to be fluent in ASL fast enough for Ella to learn the level of language that her daughter and son were privy to in her household.  Surprisingly, she understood immediately and never made me feel bad about my choice.   That’s what lobsters do- they support without judgment.   In turn, I would go to the ends of the earth to find a solution for this mom.  I wanted her son to have what he needed as much as I want my child to have the perfect scenario. I promised to reconnect with her after the event and I have not stopped talking about her story to anyone in the field who will listen.  I am forever changed by the struggle she has had with the school system to get them to see her family as bilingual.  Her son deserves better.

At Laila’s baby shower, pictured above, we welcomed another lobster into our midst.  This mom has a young baby, only 8 months old.  Not that much older than Wyatt.  I can see her still coming to terms with her daughter’s hearing loss and her worries that she may need an implant someday.  I thought afterward that with Ella we had the blessing of really never having any hearing to lose.  However, I get her struggle a little more now, as I watch Wyatt’s left ear decline in increments toward a unilateral deafness situation.  I think it is harder to watch it go slowly than it is to just rip the band aid off and get all of your mourning done in the beginning. In spite of the challenges she will face and the ups and downs of it all, I know this mom will be just fine.  I know that because she has now been lucky enough to land in the presence of my lobsters and we are now holding her claw and walking around our tank with her.

In my church group that I mentioned above we are reading a wonderful book called "The Gifts of Imperfection" by one of my favorite authors, thinkers and writers, Brene Brown.  Today, While I was waiting for a conference call to come in, I randomly opened the book to a page to see what messages God might be trying to send me through Brene this time. The first full paragraph on the left side page started with this sentence:

"Whether we're overcoming adversity, surviving trauma, or dealing with stress and anxiety, having a sense of purpose, meaning, and perspective in our lives allows us to develop understanding and move forward." 

Yes, okay.   I hear you loud and clear.

Laila described the picture of my lobsters on Facebook as follows:

“We are missing a few folks...but looking at this pic brings to mind words like: inspiration, strength, courage, unconditional love, perseverance, fate, and hope. Thank you ladies for being my rock, and thank you for an unforgettable night! Love you all!”

Could not have said it better myself.  I would only add the word commitment.  We belong to each other. And we take it seriously.  Do not mess with my lobsters or you will get pinched.

A couple of years ago we adopted a toast that goes something like this, “Here’s to the hard road because it led me to you.”

Amen!

Love you, Lobsters! Thank God we ended up together. It was meant to be.

The Day I Barely Made It- September 11, 2013

In order to end Sibling Week, I am posting this journal entry about this past September 11.  It was actually a crazy day for us, but not because of the anniversary of the  terrorist attacks, but because my family was being challenged.  I was racing against time and the school bus and I only partially succeeded.  And Avery noticed, as she always does....

At 2:47 pm, I pulled up to my house in the minivan stuffed with my two youngest kids, supplies for an entire day, and my mom.  And waiting for me at the bottom of my driveway was my oldest child’s school bus.  I felt a wave of relief, confusion and shame wash over me at the same time.  We made it three minutes later than her afternoon bus stop time. It was perfectly timed in a way because the bus driver let her off at the end of the driveway, and we did not have to proceed four houses down to the corner to meet it at the normal stop.  It was serendipitous because if we had been just a few minutes (or seconds) later, she would have had to go all the way back to school, most likely in tears, because there was no one there to meet her at the stop. 

Picking her up there, at the afterschool program, would have been awful—it would have caused such a pit of guilt in my stomach, and so much anger was likely to come from her for having to endure such parental neglect. It was confusing, though, because I had quickly arranged with a neighbor just a few minutes before to get her off the bus because we were almost there, but might not quite make it.  Somehow that didn’t happen.  It was shameful because it looked to Avery and to the driver that I had NOT made such an arrangement and it really did look neglectful.  I was feeling like a bad mom—my plans gone awry.

In truth, we had just barely made it—late enough to miss the actual stop, but early enough to catch it before it  left the neighborhood. As I look back on the day, it is clear that I had packed too much in—lots of important stuff, of course, but none the less, too much of it. Yet again, because of my overscheduling, Avery was going to feel like she was last on the list and she was going to let me know it. 

So. Much. Guilt. 

So it really did not matter that we had timed it perfectly, really, because in Avery’s mind a deviation from her normal bus stop with the threat of having to be the kid who had to do a ride of shame back to school feeling quite unloved and forgotten was unforgivable.  I agreed with her, but it was too late.  I barely made it and it was obvious to everyone involved. 

Failure.

Deep Sigh.

Back when I worked in an office in an important-looking building in the middle of the important-looking downtown, I had lots of important things to do that interfered with where I wanted to be.  I needed a haircut, and I couldn’t go because I had a meeting with a client.  I had a meeting with my boss, and so I could not make it home for dinner with my husband. Then I had kids and my important things doubled, tripled, quadrupled, and balancing it all (without beating myself up all the time) became a daily decision: What is most important today relative to the rest of my week so that by Friday everyone is content? Maybe not happy with me, but content. This was my standard—mediocrity spread thin.

This daily prioritizing was exhausting but I was totally committed to succeeding with my “have it all plan”: Keep the downtown office job and manage my kiddos.  Here is what I did not count on:  HEARING LOSS.  Totally unexpected.  Totally outside of my neat, little plan.  And in most ways, it was more important than anything I had ever done before.  Talk about imbalance!  The scales were tipping in favor of my second child (Ella) every day because I had a small window of time to help her succeed for life— I knew it was much less evenly spread out because of brain plasticity and the science of early intervention. We were racing against the clock and we had only three short years to get there on time. Oh the Pressure!

To add fuel to the fire, I was still responsible for more than half of my family’s income and I had another child (Avery) to boot.  Here is where the rub is—and I’m being very honest here.  In some ways, the first three years of Ella’s life were so critical to the rest of her life that I felt like even my other child would have to sacrifice in the process.  True, but terrible and unfair to a 2.5 year old whose baby sister was diagnosed at birth.

Avery is what some would call a high need child—not to put labels on her, but I say all the time that she started out with colic as a baby and has always required attention at levels outside of the norm.  She is also fiercely independent and wants to do things herself.  However, she really wants you to sit next to her and watch and praise her every move while she independently does things. She gets emotional when she is not perfect, in spite of our urging that we do not care if she is perfect. We, like one of my favorite bloggers, Glennon Melton told her children, we do not want her to be perfect, we want her to be kind and happy.  At her core she is always both, but she does demand and command more day-to-day, minute-to-minute, parenting than most kids.  And I may not have minded it, but in my head, I thought—how can I give you my all every day when you are my HEARING child.  You have to get with the program, kid. Suck it up.  You have a deaf sister and she needs me now more than she will at any other time in her life.  Sorry, but we are all sacrificing here.  Nobody asked for it, but it is what it is.

How do you explain such a concept to a little one?  You can’t.  It is a steep learning curve for everyone and I realized that her life as a high need sibling of a deaf child was going to be exponentially harder and possibly charged with more than the average sibling rivalry.  And I was totally unprepared to handle that.

 

On Valentine’s Day 2011, when Avery was five and in private kindergarten at her wonderful full-time preschool that she attended from four months old on, it all came crashing down.  Ella had a Valentine’s Day party at the Atlanta Speech School and Avery had a dance performance and party later that day.  I could do both, I told myself.  It would take some driving around and some effort, but it was only one day and I could do both.  How could I NOT do both?  They both needed me to be there.

Did I mention that I also had a high-need client at the time?

She needed me desperately that day as well, and I knew that in my work world, there was no snubbing this lady.  She held very important, very large purse strings and preschool parties or not, I had to jump when she said jump.  So in between the 10am party at Ella’s school and the 3 pm party at Avery’s school, I needed to be at the client site for a very important meeting, which was in a third impossibly traffic-ridden part of town.  Recipe for disaster.  Do you see it coming?

Ella’s party was delightful and full of language-rich activities, arts and crafts, sweet treats and homemade Valentines.  Oh, I forgot to tell you that I started a tradition when Avery was 2 that we would make our Valentines from scratch for each child in the class as a fun project.  Trying to win the Pinterest Mom-of-the-Year award, I guess. Therefore, on the days leading up to the big day I am covered in red paint and pink glitter and glue and doilies, bits of construction paper and stickers and marker from the late nights of crafting each tiny greeting, usually largely by myself.  Not only really smart of me, but also a hot look for the office. 

 

Anyway, I may have been bleary-eyed from putting finishing touches on sweet treats and cards the night before, but it was easy to get to Ella's  party on time because I simply stuck around after dropping her off and there were no issues. 

After the party, I made my way to the client meeting and also made it just in time.  However, the client was late getting there and wanted more time than I had planned for.  So, at 2:30, I finally hopped into my car to make the 30 minute trek to Avery’s school to see the dance performance that she had been working on all week.  Just enough time. 

Not, of course factoring in the horrendous traffic jam on the highway that kindly extended my drive by an extra 15 minutes.  Oh, I told myself, not to worry, I always get there on time and these little performances never truly go off on time. We end up standing around waiting for every parent to get there before they start, so surely I would not miss the dance. 

Wrong.  Very Wrong.

I got to the school at 3:15.  I high-tailed it to the classroom with the hope that I could still make it, only to find a completely hysterical Avery in the arms of a teacher. 

I had missed it. And she noticed. Big time. 

My heart sank and then shattered into tiny pieces.  I ran over to my precious girl and led her outside and we had a big long cry together on the playground.  I hated this for me and for her and I could not take it back.  I apologized and she forgave me, but I knew this would be an indelible memory punctuated with the fact that I had made it on time for Ella’s entire party. Which she asked me about, and I admitted out of lie-guilt.  Great! More proof that I loved and cared about her sister more than her.  Yes, at five she was that analytical.

When we came back in, the most magical thing happened.  A sweet teacher (who dedicated her life to wiping away the tears of kids whose parents had to work and had to miss things) found deep compassion for me and my little girl in her heart.  She asked the kids to come back up to the front of the room and do a repeat performance of the dance. 

I got a do over!

It was not the same as having made it to the original performance.  I would have liked to have skipped the tears, but I got to see it, Avery felt like she got to perform for me and all had been made just a little better.  We got a metaphorical band-aid that particular day.

But on this day, I hearkened back to that Valentine’s day.  My important things that day were to achieve five appointments spread across two kids at the Children’s Hospital complex between the morning school bus time and the afternoon school bus time.  It was going to be a challenge, I knew to get to the afternoon stop, and I had a backup plan if we were cutting it too close.  After a double ENT appointment with prescription writing (Ella) and ear cleaning (Wyatt), we headed to the audiologist who determined that we had a broken hearing aid and needed a new ear mold for Wyatt. 

Then we crossed the street to the main hospital building and headed to the phlebotomy lab to get some blood taken for Ella’s Allergist.  However, the orders for the bloodwork had been mailed to my house instead of faxed to the hospital and were, unbeknownst to me, sitting in a pile of papers on my kitchen counter instead of being the least bit useful. 

We headed to the cafeteria where I promptly called the pediatrician and asked them to resend the blood work orders by fax.  After two transfers, I finally got the right person.  I stuffed down a cafeteria cheeseburger and lamented over the fact that my daughter was not going to eat anything on her plate but her potato chips.  I played with my baby a little while he sat in his dreaded car seat, took a call from a colleague at work and then headed back downstairs to the lobby of the hospital to register for Wyatt’s hip scan. 

All of my kids have to have hip scans for dysplasia because Avery had it so the family history makes them all at risk.  It was Wyatt’s turn.  We went through the three step process (give your name, wait, give your insurance and registration information), then we got his paper work and his little ankle band.  We jetted down the hall to the phlebotomy lab to see if the orders from the pediatrician had arrived via fax.  They had!  So Ella received the very awesome and helpful numbing cream on her arms over the veins they might stick for the blood draw.

 A storyteller with a wagon of books and stuffed animals then entertained her while she waited 30 minutes for the numbing cream to work.  At 1:35, my mom took her back to get her blood drawn.  Meanwhile, Wyatt and I were already back in radiology in a dark room with soothing music playing (Did I mention how much I love Children’s Hospital of Atlanta because of all of the warm embraces they give you on days like this? Please if I ever fall ill, pretend I’m under 21 and send me to a top notch children’s hospital—so much better than the adult version.)  Wyatt had his diaper off, a loincloth covering parts that might squirt the technician and an ultrasound probe was being used to scan his little hip joints to see if they were healthy. He was delightfully smiling at the technicians and cooing as he also snacked on a breast milk bottle I pumped for him before we left, per hospital instructions.

T-minus one hour until the bus arrives.  When the technicians leave the room to “check with the Radiologist to see if they need more pictures,” I text my neighbor to see if she could grab my daughter off the bus should we be unwillingly detained.  “Sure” was the text I got back.  Deep breath.  Mantra begins: It is ok to ask for help.  It is ok to ask for help.  Dark side of the brain enters the conversation: Avery is going to kill you for not being the one to pick her up from the bus.  Avery will kill you.  Avery will kill you.  Possibly only emotionally with her dirty look, possibly in your sleep when you are defenseless.  (Exaggeration, here… she is not the murderous type, but you get the gist.) 

It is ok to ask for help.  Although, Avery may kill you. 

Image of the Valentine’s Day scene from 2011 flashes before my eyes.  Another reminder that I am not the perfect parent she craves and I mentally add a tick mark to the running total in her head that says “She loves my brother and sister more than me.”  Not true, sweet girl, and I would do anything to eliminate that thought from your pretty strawberry blonde head.  But I have to show you, not tell you, don’t I. Cue more knots.

The “check” with the radiologist takes over 20 minutes.  Sigh, and cue nausea.  I quickly make the exec decision to dress my son and prepare for departure.  I practice the line to the technician in my head should she need more pictures, “Sorry, we will have to reschedule.  We have been here since 9:15 this morning and we need to pick up his big sister from the school bus.”  Planned sacrifice for baby girl #1 that she will never see- a return visit to the hospital on another day.

Luckily, the technician reports that we are all done and we speed race in with the stroller to the main lobby, pick up Ella and my mom and head to the parking deck.  We leave at 2:18 pm.  And well, you know the rest.

I barely made it. The tears from Miss A only lasted 2 minutes when she heard that we had been at the hospital all day.  She softens, and I realize she gets it.  She knows it is hard for all of us, but she wants to make sure I won’t forget her.

 I won’t forget her.  I re-promise that I will always be there for her.  Even when I’m not there for her. 

 

Sibling Week

This week is my daughter Avery's birthday week.  She is a Halloween baby and is turning seven on Thursday.  Hearing loss affects our whole family-- we are all changed, mostly for the better, because we have Ella and Wyatt to give us perspective.  Avery is growing up as the firstborn Muse and as the only hearing sibling in the mix.  She may, in fact, have enlarged vestibular aqueducts, but she has never had an MRI to check it out and, luckily for her, she has never had any trouble with her hearing.  Such is the way with that condition-- you can actually live with it your whole life and then all of a sudden have a change in your hearing or you can always retain your typical hearing status. Hard to predict.  For now, though, Avery continues to describe herself as having "dog hearing", which is basically true.  She hears very soft sounds at very high frequencies, which makes her a little off the charts in terms of what she can hear.  My audiologist warned me never to whisper around her because she is likely to hear me anyway.

You would think this would make her journey easier than that of her two siblings.  Let's be honest, every kid with siblings has to share their parents and their home and their attention and love with their brothers and sisters.  However, Miss A has had to deal with an all consuming life of her parents' worry about Ella, and now Wyatt, since she was two-and-a-half years old.  That kind of life for a small child does not come without sacrifice and challenges.

When Ella was first diagnosed, I remember wanting Avery to immediately be able to appreciate her ability to hear and to sympathize with her sister's lack thereof.  I would secretly be irritated by the fact that she continued to throw tantrums and complain about not getting what she wanted all the time.  I mean, after all, why would she complain about anything at all-- she is the HEARING child. She should be immediately grateful and kind and giving all the time just because her sister was born deaf, right?  Silly me.  This Profound life is as much of a process for her as it is for us and she is just a kid.  The best thing to do is not expect too much from her and to respect that she still has all of the same sibling rivalry feelings that every kid has.  And she is entitled.

The fact is that Avery has come a long way into her own understanding of childhood hearing loss. I will never forget when she started out believing that all babies came with hearing aids (kind of like bottles and diapers) and would tell elaborate tales about what life was like for her when she had her own fictitious hearing aids as a baby. When she was four, she would feign hearing loss so that she could go to the audiologist and get some extra attention, and maybe be lucky enough to get her very own pair of hearing aids.  Now, I find her mimicking me in how I talk about Ella's implants or Wyatt's  progressive loss with neighbors, friends, and people on the street.  She reflects exactly what I say, word for word. Again, I have to watch what I say around her.


I believe that this experience is making her a more empathetic person.  Maybe not every minute of every day, but in the long-term scheme of her life. Did you know that an alarming percentage of children who grow up with a sibling with a significant disability go into helping professions related to their sibling's condition?  I imagine that she will be a talented ENT or Audiologist or Special Education Teacher or Speech Pathologist someday. Or maybe she will choose something completely different.  She is her own person and it will be fascinating to watch how she translates her sibling experience into her adult life.

 

In honor of all of the hearing siblings that are growing up with sisters or brothers who are deaf or hard of hearing, I am declaring this week on my blog my official "Sibling Week".  I am remembering to recognize sibling struggles and strengths by honoring Avery and purposely NOT the other kids this week.

Last week, she was the star student in her first grade class, referred to as the "Best Buddy of the Week" by her particular teacher.  The kids in her class focused on her the whole week.  She worked really hard on a poster where she got to tell the other kids all about herself.  We printed off special pictures of her doing her favorite things and hanging out with her family and friends.  On Friday, I was privileged to attend her fabulous parent-teacher conference where I was blown away by the positive review of her work and her behavior in class.  Her teacher had wonderful things to say about her.  The only ding was really the fact that her perfectionism gets in the way sometimes and can build up to a meltdown when she can no longer bear the frustration of being human.  She is definitely a first child.  And MY child.

Below is the letter that I was asked to write about her to culminate the week.  I sent it in a sealed envelope and she read it out loud for the entire class on Friday.  Happy Seventh Birthday, Miss A.  We love you more than words can say.

Dear Miss A:
Congratulations on being the Best Buddy of the week!  How exciting for you!  I have enjoyed learning more about you this week including that your new favorite color is light blue.  That makes Daddy happy because it is the same color as the Tar Heels! In our family, we love to watch North Carolina basketball!  Go Heels! I was a little surprised to hear that you have a new favorite color, though. All your life you have loved the colors pink and orange, but I guess you are growing up and your taste is changing.  I can’t believe you are going to be seven in a few days!


Watching you grow up has been so wonderful.  We love you so much and are so proud of all that you have become:  a songwriter, an artist, a piano player, a cheerleader, a dancer, a star student and especially a great friend.  When you were in preschool, you made friends with Rylee by lying next to her in a crib during a parade at school.  Ms. Tozier and I put you two down together and then we were talking to each other and we suddenly heard Rylee crying.  We had no idea what started the crying.  You were smiling a big grin.  Later, I looked at the video that I took of the parade and saw that you had reached over and tried to “love” on Rylee a little too much and grabbed her ear, which made her cry.  I know that you did not mean to hurt her but were trying to learn about her and make friends.  It was so nice to see you standing up for her and bonding with her all through preschool.  It takes a strong-hearted girl to always stick by her friends.  But you are not afraid to do hard things! I think you and Rylee will be friends forever.  I love that you have also made lots of new friends at East Side and in our new neighborhood, too!

 I love that you stand up for the people you love. My friend Judy talks about the first time she met you when we went to a conference in Florida.  Something had gone wrong with Ella's implant while you were in the kids room with her and they sent Judy in to help figure out the problem.  The problem was easy to fix-- her little magnet had just come off.  However, the real problem was that you were standing guard over her and not letting anyone get too close without approval from you.  In our family, our hearing and speech is a special gift—and you have the gift of both!  Your sister and brother will really be lucky to have you to teach other people about their hearing differences. You have learned so much about hearing loss! What a great big sister you are to them.  Thank you for taking care of Wyatt and Ella and watching over them.

You have always been a spirited little girl and sometimes it surprises us, but we know that it will take you far because you will always go after what you want.  When you were little, you never wanted to get dressed in the morning.  That is still true, right? One time when you were one, I had to really work hard to get you into your clothes.  I put you down to get my work computer and my purse.  Then, I turned back around after just a few seconds and you had your coat and hat and shoes off and you were working on taking off your socks.  I had to start all over again!  That is funny to me when I think about it.

Daddy always tells everyone how smart you are.  He loves  to tell people that you knew who all of the American Presidents were when you were just two and a half years old.  He had a big poster with all of the Presidents’ pictures on it and he would work with you on memorizing the names that went with each picture.  In just a couple of weeks, you were able to name all of the Presidents on the poster even though you could not read yet!  Very impressive!

Here are some other things that I love about watching you grow up:

I love to watch you cheer and dance!

I love to watch you learn to swim!

I love to hear you sing your songs that you write!

I love the hugs you give us!

I love to see how much you like to learn in school!

I love your smile and your strawberry blonde hair!

I love when you are silly with us!

I love to see you draw an amazing picture—like the ones in the dog book that you made in kindergarten!

I love all that you are and all that you are growing up to be!

You are my special first born girl!

Daddy and I love you very much.

Keep up all the good work and keep being sweet forever!

Love,

Mommy

xoxo