#TBT: Magic Made Real

From Two Days Ago (June 24, 2014)…

We are at the happiest place on Earth for the AG Bell Convention.  Here were my birthday thoughts from the other day.  Magic's gettin' real, y'all.

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They say it’s my birthday (and by they, I mean the people on Facebook).  I’m so happy for me.  J 

This birthday marks 39 years for me and 5 years since we found out that Ella was deaf.  Just 18 days after her birthday, we returned to the birthing hospital for rescreening.  We assumed we would be redeemed that day—that her “ear fluid” would have passed and that we would get a clean bill of hearing health for our sweet newborn baby.  

Redemption would not come that day.  Nor would it come the next day, which was my birthday, because the next day after the rescreening there was a an opening to get a full Automated Brain Response (ABR) for diagnostic purposes to see what level of hearing loss we might be looking at. It still seemed unreal. We went for pictures earlier that day and so we showed up on my birthday at the audiologist’s office, all of us dressed in yellow, expecting magic—someone to make the possibility of hearing loss disappear. 

Then, they said the word that changed our lives forever:  PROFOUND. I was so blown away by the word that I actually did not understand the results at all.  I took the audiogram home and called my friend, Susan, whose husband’s birthday is coincidentally the same day as mine.  “I’m sorry to take you away from Chris’s birthday, but I have no idea what I’m looking at.  Can you help me figure this out?”  She knew audiograms because her son had a unilateral loss. After a few minutes, she said “It’s not good.  (Long Pause).  But let me give you the names of my audiologist and my ENT." A lot of good has come from that dark, lonely, confusing day and it started to turn around during that conversation…I had the very first steps in my path for Ella.

Fast forward to five years later. 

It’s 4am as I type this post. It is the second Tuesday in a row that I am up at 4am.  Last week it was because I had to clean my house, more specifically the playroom, before I let Wyatt’s new music therapist and our Part C Coordinator for the county into our home.  The playroom is IMPOSSIBLE to keep clean these days—summer contributes to that, but really it is because of the sudden influx of toys that comes in June due to Ella, and now Wyatt’s, birthdays.  I usually have no time (read desire) for cleaning between the kids and my busy work and travel schedule.  However, the playroom was insanely out of control and there was no way that a brand new therapist was going to get a window into what the playroom normally looks like.  At least not on the first visit. 

That is a secret about raising kids who are in early intervention for hearing loss that you don’t necessarily know.  Somewhere along the way, they decided that good early intervention must take place in your home.  And this inevitably forces already stretched parents to clean a lot more regularly or choose to completely expose their therapists to he frenetic life that we live.  I mean, if it comes down to cleaning my playroom or running to the audiologist to get a broken hearing aid fixed, then, I’m sorry, but the hearing aid wins.  And that actually takes longer but can be done in the light of day, instead of in the wee hours before my people get up.  Oh yes.  Playroom cleaning must absolutely be done under the cover of darkness so that we do not have to keep every ratty stuffed animal and puzzle with missing pieces.  Removing broken toys permanently is something that must be done without hindrance.  Or whining.  Therefore, 4am it is.

Last week as I cleaned, I had many happy thoughts running through my head in addition to anticipation of the new music therapy sessions that Wyatt would benefit from every two weeks.  It was one week until my birthday, less than one week before we left for Disney World on vacation and to attend the AG Bell Convention. I was physically doing something completely ordinary, but magical thoughts were happening while I deposited single Barbie shoes and papers with one marker line on them into the trash and sorted the plastic food into the play kitchen and organized the musical instruments in the corner with the keyboard.  Here are some of my magical thoughts:

1)      I thought: I am beyond excited to see one of my favorite bloggers and authors, Glennon Melton at Momastery, speak at my church to a crowd of 350 moms.  Anticipating that event was just as sweet as attending it because I knew that it would be a magical night and that the crowd would be all moms just like me.  My dear friend from church had organized it, but little did I know that they would be playing some of my favorite music in the sanctuary before, that my pastor would introduce her, that she would hug me upon her arrival into our narthex and that she would promise a mom who lost a child that her baby would get 170,000 Happy Birthdays this year.  I had no idea, as I moved Ella’s drum set into a better, how that speech that I was about to see would stick with me so that I would think about the concept redemption for days afterward.  Anticipation in the darkness is not something reserved for a small child on a magical Christmas morning, but could also be something magical for a grown woman on a random Tuesday who is trying to get rid of the broken crayons in her playroom before her people get up.  As Glennon would say a few hours later (paraphrasing here), everything is magical in the morning while it is dark and before the people get up.  And then the people get up.

2)      I thought: Birthday parties are not about the random toys and activity books and stuff that the kids get as presents.  They are a celebration of life itself, of another year of progress and growth.  That is why I attempt Pinterest-worthy cakes and plan themes for months in advance.  It is not only a great creative exercise for me, but it should be memorable to the child and the parents. The themes, special food, invitations and activities help color the photos we take and make them into memories.  So, while I know that birthday parties just create more hoarder-worthy stacks in our playroom, I love them and they are the part of the magical parts of parenthood that I would clean a thousand playrooms for. Here is my childrens’ Mickey and Minnie Themed cake this year:

3)      I thought: Birthdays are aplenty in our house in June and we had just casually skipped a huge one the night before. I hadn’t technically forgotten, but Ella fell asleep super early last night after a very busy day at dance camp and swimming in the neighborhood pool.  The day before was one of the most magical of June Birthday’s to mark:  Ella’s Hearing Birthday.  In the world of cochlear implants for children, parents usually add a birthday to their child’s life—the day that marks something in the journey to hearing by either receiving an implant or getting it switched on.  June 16, 2010 is Ella’s hearing birthday.  Ella turned five at the beginning of the month and then two weeks later, we celebrate the day she had her first cochlear implant activated.  It was a pretty magical day because we got to breath a huge sigh of relief that she did in fact hear something through the implant after four hours of trying. 

However, it was not the perfect smiling reaction that everyone who goes through this experience hopes for.  There were still doubts as to whether auditory training and the process of learning to talk would really all happen—all of the magic was in front of us.  We still had a lot of worry and doubt, but that day marked the beginning of something great.  Four years later, I look at my FB post about the event and I tried to be hopeful and see the achievement in the moments that she winced or pointed when she heard something, but you could hear the doubt in my words as well.

It is hard to believe that it has been four years since I first felt that feeling— a flood of joy and hope wrapped in wonder and doubt about the future.  I still have frequently have this feeling when I look at Ella and I see something that is still not where it should be—like when she drops the “ed” in a past tense verb or she fails to identify a sight word that we have been practicing.  Will she be able to do it? Will she maintain her age-level fluency in English as she grows?  Will she learn to read on time?  That feeling makes me push on and try harder with her to get her where she needs to go next.

The point is that Hearing Birthday is something for her so that she realizes how magical that day was; so that she understands that  she was  given the profound gift of a different future. It is also our acknowledgement of the past—that all of those things we doubted would happen have in fact happened.  You can see the fairy dust in that…the path behind us is covered with small achievements all along our journey that we need to remember and recognize on the Hearing Birthday.   

Celebrating is not just about the ice cream cake we would eat that week, but about the purest form of redemption—when you make a choice as important and serious as using spoken language for communication for your deaf child and the grave decision to do elective surgeries as a part of that choice, there  must be redemption.  It is only fair that no one, as Glennon would put it, should feel like a door is slammed in your face because you made the “wrong” choice.  I still do believe that redemption comes for all families of children who are DHH, just in different forms, according to the choices that they feel are right or that work for their child.  The stakes are high when you choose the surgery over the much less medically risky route.  Looking down the path in front of you, you can anticipate the glittery magic that may come as part of the path and it eggs us on to continue to take the next tentative steps.   Here is the real magic of the redemptive path for my children who are DHH as I see it in the past and in the future…

4)      I thought about the fact that we were going to Disney World in less than a week!!!  I love the Magic Kingdom because of the illusion that Disney manages to create with everything they do.  Just a few days later, I would watch my five year old Ella stand in front of Cinderella’s castle, with her Minnie Mouse dress on, and look in awe as the classic princesses (Snow White being her favorite) encourage her to force the evil queen to run off by joining with the hundreds of other children to say, “I believe dreams come true”.   Mickey Mouse told her it would work.  She heard the show.  She followed the directions she heard.  She saw magic happen, as far as she could tell.  She made all of those connections on her own without me interpreting or coaching her.  She felt pure joy because of the illusion that she was able to easily enjoy, just like her hearing older sister who stood right next to her the whole time.  I believe in dreams coming true, too. Abso-darn-lutely. 

5)      I thought: Wyatt is making incredible progress in his language development.  On his birthday, he responded to the question, “How old is Wyatt?” by holding up one finger and then clapping with us when we cheered for him.  He is saying so many words.  I need to recap his hearing journey from this year in a future post, but let’s just say it has been a much smoother path than Ella’s for sure.  His latest word is “out” with a very clear “t” sound.  He wants out of everything.  Especially his car seat on long trips.  We spent all of Father’s Day driving Avery to Grandma Camp in North Carolina, and we heard the word “out” from the car seat about 87 times, averaging about 15 times an hour.  Annoying to most parents, including me at times, but also so completely adorable and also quite remarkable for our boy.  Early intervention is magic—it teaches parents to be miracle workers and then the miracles just happen.  They say words.  Repeatedly.  In appropriate context.  Amazing.  I planned to laugh a lot at what he said in the car seat on the way to Orlando.  And respond to it, like a good EI mom should. 

Ok, so now we are here in Orlando.  My people are about to get up because the light is starting to come.  Yesterday we were in Magic Kingdom, and don’t get me wrong, the Magic got real y’all.  The best part about Magic Kingdom to me is how parents and kids manage to take away amazing memories in spite of the “real” that happens there.  I will remember the girls’ faces on Splash Mountain, and Wyatt splashing in the puddles, and how amazed they were to see Cinderella’s castle.  But, let’s be honest, there are still diapers to change, and fights over who sits in the double stroller, and stifling June heat to deal with.  In our family, there were tears over having to walk too far, and a slap among sisters who wanted equal time spinning the Teacups, and did I mention,  it was hotter than Hades. We got sent out of the FastPass line at Splash Mountain because my children were wearing swimsuits and not street clothes.  Who knew? (Turned down for what??)  There were implant batteries to change and ear gear to switch out for the Casey’s Soak Station.  There were at least one or two cumulative hours stolen from my life by public restrooms that I will never get back. Not to mention the giant, mortifyingly massive fit resulting in physical removal from the hotel pool for one child.  Yup, that’s how we do Magic Made Real in the Muse fam.

It’s my birthday. We will be in Hollywood Studios and Animal Kingdom today.  Then tomorrow, we will head to the location of the AG Bell Convention at the Swan and Dolphin.  We will see lots of families of children who are DHH of all ages and we’ll get to ask teenagers questions about how they like listening to iPods with their implants. We will see the latest CI models that let kids swim and hear at the same time.  We will watch kids talk with me and then sign with someone else.  We will meet friends that we have not seen in four years and have them meet Wyatt and see how much the girls have grown. We will see Mickey Mouse greet kids with ear equipment and make them feel special without noticing their differences.  We will catch glimmers of the hope and joy and kinship in the eyes of other parents.  We will hear inspiring talks from researchers.  I. Can’t. Wait.  For the continued magic of this week.

I am profoundly reminded of the last time we attended Convention in Disney World, four years ago.    Eleven days after Ella’s CI activation, on June 27, she was able to do this….

Another convention, another one year old with hearing loss in our family who is developing language right before our eyes.  I am presenting on the Family Journey at the convention on June 27.  Everything comes full circle, no? And just to make sure we remember that the magic is not all instantaneous, we finally get Wyatt's broken hearing aid back this week.  Poor guy has been living with a lot of feedback from his loaner.  But, he is still pretty darn happy and chatty. 
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Below is a pic from the 24th.  My little pixie, Ella, is on the left and her brother Wyatt (makin' it real by closing his eyes for every pic I took) and big sister Avery in the middle.

Real.  Magic.

#tbt One Day Late: Mother May I

Happy Mother's Day!  If someone asked me what month I would like to keep forever on repeat, it would be May, or maybe both May and June.  Mother's Day. End of school in the south. Memorial Day picnics.  Perfect weather in my book.  My birthday is in June, but otherwise May is pretty awesome.  I actually love those handmade gifts with handprints on them that we are all receiving this week from our kids schools. Here is a photo of Avery from her Mother's day breakfast in her classroom this morning. 

She carefully crafted all of the items on her desk for me.  Love it.  So sweet and irreplaceable. 

I am inspired to recall May from last year as part of throwback Thursday (#tbt), but wanted to ask permission....So, Mother, May I?  Now someone is supposed to say, "Yes, you May."   :)
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May is always a fun filled, commencement type of month for moms and teachers, where we look back on the year and marvel at how fast it has gone.  We relish the achievements of our children and we prepare elaborate end-of year celebrations.  We parents and teachers might look a little haggard by the end of the month because of all of the special running and doing to make the end of the school year, but it is all worth it and our kids take special memories with them into the summertime.

For our family, this time of year holds even more promise and nostalgia because our daughter Ella celebrates many milestones in May and June.  Her fourth birthday is on June 5, and in fact, her teacher designated today as her official “un-birthday” so that she could bring in a special homemade confection to share with her friends.  Little does she know that next kicks off the summer, but also a series of happy milestones for our girl.

You see, Ella received her first cochlear implant on Memorial Day weekend 2010 when she was just one year old.  I still remember the doubt that I felt right before the surgery and the uncontrollable urge to escape and move to Mexico so that she did not have to go through a voluntary surgery at such a young age.  I understood the controversy around the procedure quite well and always wondered if I was doing the right thing for her.   Would she hate me when she is a teenager because I made a such a big life decision for her so early on and without her input?  Would she come out of the procedure safely?  Would the implant work for her?  But, we trusted the caring medical experts and the superhuman early interventionists who were surrounding us.  We also did our research in the medical journals and in the Deaf community. Then, after careful consideration, and a rude awakening that if we waited, the window of opportunity might close for her, we took a leap of faith.  We opted for the implant so that Ella could hopefully have as many opportunities as possible at her fingertips as she grew.  Since the day we made that decision, I always pictured myself responding to an irate teenager, if approached by her, with the following:

 I know you do not understand our choice, but we did what we thought was best with the information we had at the time.  We considered your safety, your health, your family relationships, your schooling, your ability to read on time, your potential friendships, your future career choices, your identity and your emotional well- being.  All of it.  And still all roads let us to this option as the best one for you.  We felt confident that with help from your early intervention program, we could be successful at stimulating your little brain with spoken language through storybooks and conversation in our home language. And when we moved forward with the surgery, we were already seeing lots of evidence of that success in how social you were, how you loved to tell us when you heard something with your high powered hearing aids and how many words you were speaking before your first birthday. Yes, you were only a baby, and we were worried that one day you would be upset with us for making that choice for you. The bottom line is, we love you and accept you for who you are. No matter what.  So if you would like to take off your implants, change schools and make sign language your primary language, you absolutely have that choice.  And because of our decision, if you choose to stay in the hearing world, you have that option also. Regardless, we will completely support you in any way that we possibly can.  We are and always will be “all in” when it comes to you.

With that plan for the future, we did it.  We held hands and leapt as a family. And Ella took off.

On June 17 this year, we will celebrate Ella’s three year “hearing birthday”—the day she got her first implant activated and started pointing to all of the voices and noises she was hearing in the audiologist’s office.  Lots of CI families celebrate hearing birthdays and I love that tradition we have as a community. 

A few days before activation, we had just celebrated her 1^st actual birthday where she was “in between” hearing devices.  She had no hearing at all on that day, so we taught the group of family and friends that came to her party to sign Happy Birthday Song in ASL so that she would know we were singing to her.  I remember her toothless smile and how she played peek-a-boo with everyone using the paper table cloth to cover her face.  [First Birthday photo] Little did I know that just 13 days later, she was going to be dancing to music that was playing behind her.  And 11 days after that she be showing huge leaps in her receptive language and pre-lingual speech.

 

It really took a whole series of these baby steps toward progress for us to have some more confidence in our decision.

So, fast forward to May 2013.  Another implant and a graduation from the classroom experience at the Atlanta Speech School are two years and one year behind us respectively.  This May, Ella is being promoted from her 3 year old mainstream classroom at a nearby private school to the Pre-K class at the same school for next year.  Her classroom teacher’s assessments show that while she struggled a bit with classroom behavior (she is our little firecracker), her academic skills are somewhere in the middle of the class of her hearing peers.  Even the social emotional measurements of seeking help and asking appropriate questions and making friends were all average for her age.  We were thrilled to see that she is even counting and identifying letters of the alphabet better than some of her peers.

Earlier this week, her Auditory-Verbal Therapist/Speech Language Pathologist gave her a certificate that read “Ella Madison Muse and Family has completed Auditory Verbal Therapy at the Atlanta Speech School.”  Wow.  Never in my wildest dreams did I imagine that at only four years old, she would be where she is today.  Emily gave us some additional goals to work on at home, encouraged us to get in to see a private SLP next year for testing, and recognized that most of her progress was since Christmas vacation.  Probably because that is when we started using her FM system in the classroom.

But, as I look back on this year, I am amazed at Ella’s progress.  In December, she stood up in our family room and recited the pledge of allegiance beginning to end with no prompting from us.

https://www.youtube.com/watch?v=MCZjFdnqOC0

 

 We were so shocked!  Up until then, we wondered how she was faring in her new classroom with 16 kids…was she picking up routines and did she understand instructions?  Seeing her perform a mini-speech that all children learn eventually, but she was doing at 3 and a half,  amazed us!  She knew something that we did not personally teach or coach her to do.  She learned it from listening in her environment, from taking in the words on a daily basis and reciting it with her friends every morning. It brought tears to our eyes and pride to her heart and I will never forget that moment.

Today, when I took Ella’s “un-birthday” treat (tea party cupcakes made to look like little tea cups) [photo of cupcake] to her classroom she ran over to me, gave me a big hug, then quickly ran back to the circle of children to complete her group activity on the five senses. 

“Can we hear popcorn?”, her teacher asked.  “YES!”, Ella said with the rest of the class and circled the ear on her paper with a purple marker. 

At snack time, she waited patiently until the class finished singing “Happy Un-birthday” to her and then without missing a beat, she blew out her candle.  One of her best friends said “Ella, you forgot to make  a wish!”  She squeezed her eyes shut and said, “I wish for ice cream.”  The class laughed in unison. 

On my way out the door, Ella’s teacher said, “I want to show you this.”

It was a portrait that Ella drew of herself back in September.  All in purple crayon—it looked like a lot of scribble with no intentionality.  It looked nothing like a self-portrait.  I remembered back to how her fine motor skills were lagging at the beginning of the year and I cringed slightly on the inside thinking that maybe I had gone wrong by not making sure she knew how to draw stick figures by the time she started school this year. 

Then, the teacher flipped that sheet of paper over to reveal another piece of paper stapled to the back of it.  It said “Ella. Self Portrait, May 2013”.  It had shape. And form.  And her strawberry blonde hair. And her big blue eyes.  She was smiling. In one school year, her identity was already taking shape on the page. I quietly cheered for the progress she had made toward writing by learning to control the crayon, planning in advance of putting the crayon to paper, and thinking through details as she worked through the drawing.  It was totally age appropriate.  I tried not to let my glistening eyes spill over.  I’m so grateful for May.

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I ran into Ella's three year old teacher yesterday on Thowback Thursday and she reminded me of this journal entry but not on purpose.  We are leaving the school next year and I will be talking about how we got to that decision in a future post.  Thank you for last year, Mrs. May. And yes, that is her name. :)

Welcome to…Lichtenstein? Raising two children with hearing loss-My Messy Beautiful

When you have a child with special needs and you start to walk the journey, your senses are heightened to other parents who have walked in your shoes.  In fact, your child may have a different condition than them, may require different care, may have needs that they can’t even imagine.  It doesn’t matter.  You still find a kinship with them. Like me, almost all of the families I have met who are raising children who are different than they imagined have received a copy of an essay called Welcome to Holland.  A friend or a therapist or someone gives it to us. I am not sure who gave me my first copy, but in true, heightened-sensitivity form, I have been given it multiple times since the first time.  And I love it.

The metaphor is not unique, but universal to a small subculture of parents who walk around with a deep understanding of this truth.  The journey you expected is not the journey you planned for. You expect a trip to Italy until your plane lands in Holland.  You need new guidebooks.  You resist at first, but then start to see the profound beauty in the new discoveries of the windmills, the tulips, the art, the people, the Language.  Profound beauty.

Back in December, one of my amazing Lobster mamas, Laila, gave birth to gorgeous twin boys.  She knew going in that perhaps she was rolling the genetic dice, knowing that her sons were at risk for a genetic condition that would cause hearing loss called Pendreds Syndrome.  She did not have a prenatal test that gave her that knowledge, it was something she was already living with her oldest child. A beautiful daughter who is the same age as my Ella.

Laila’s daughter, like Ella, has seen the benefits of amplification (hearing aids and cochlear implants) and has been walking the journey of listening and spoken language with me and the other Lobsters in our little group of moms for the last three years.  Laila’s daughter was diagnosed later than my Ella, and so I was matched up with her through a mutual friend to share my story and support her through her decision to go forward with a cochlear implant.  That amazing angel of a friend has given the two of us the incredible gift of raising our girls together as young cochlear implant users and our families have grown extremely close. We lean on each other during turbulence and enjoy the ride together in the sweet moments.  She is one of the special people.

On the night of my baby shower for my Wyatt, my Lobster mamas gathered and bathed in the excitement of adding a little blue to the Muse family and to celebrate our other friend who was expecting a girl soon after me. That was the night that Laila announced that she was expecting her two boys.  Look how happy and cute we are. Ok, so I look a little rotund, but happy. Very happy. 

Exciting times followed.  We added lots of blue,  after too much pink.  We substituted Tonka trucks for princess dresses and redecorated nurseries.  Laila was buying double of everything. We were both preparing to be moms of three and families of five. And without speaking it, all the ladies in that group were secretly praying for us.  Although each of us would never change our personal journey that brought us together, we also know how hard it is for us and our kids and a second pass at it seems a little unfair. Our group of friends held our collective breath knowing that a repeat journey was a very real possibility for both Laila and me.  Our little boys were so loved (before they were even born by these ladies)—loved just as they were meant to be.  But we all hoped for the best scenario: a “pass” result on the newborn hearing screening and no further tests indicating that a progressive hearing loss would come later.  But we would have to wait until about 24 hours after they were born to see the path we would ultimately take with them.

Then the moment came—the texts started to fly, the emails abound.  Laila’s baby twins were on their way! Not too early and not too late.  Perfect arrival timing, actually.  Both were 6lbs 8 oz!! Secretly, I was a little humiliated by this one detail because Wyatt, born less than six months earlier, was just four ounces bigger than just one of them.  How could my amazing friend manage to carry around TWO that size at the same time?!  Get. OUT!

Then a bit of scary news—one twin was in the NICU, some issues with breathing and eating would keep him there for a week.  For twins, that is no big deal.  For us, we know that meant an even higher risk of hearing loss because NICU babies are more likely to fail newborn screening and end up with a hearing loss.  But the parents remained positive and proud and so were we. 

Then some good news, the baby who was not in the NICU passed newborn hearing screening! We knew this was not the end of the tests, but this was a huge hurdle. I nervously tried to rearrange my work schedule the next day to go visit the boys in the hospital and was unsuccessful. I texted Laila and her fabulous hubby and told them that if they let me come tomorrow instead I would bring cupcakes.  How could they pass that up? 

The next day, I sat in my van and finished a conference call in the hospital parking deck, then texted Laila to let her know I was coming up.  She was cheerful and welcoming.  As I walked into the hospital lobby, another Lobster met me there, just by chance.  I also knew that a third Lobster was scheduled to come and when we got to the right floor, sure enough, she was there.  All three of us picked the exact same time to come visit.  I am convinced it was Divine intervention.

As we wound around the confusing hallways and looked for the right room—the one with two blue storks pasted to the door jam—a woman emerged from a room and started shouting my name down the hallway.  I figured it was Laila’s mother.  “Carianne! She needs you, she is crying.”

Our small army of mamas marched in and circled up to find a lot of messy.  Poor Laila, not yet recovered from surgery, in a hospital gown, standing in her hospital room bathroom and in hysterics.  I could only think, “How is she standing right now? She just had twins!”

Then she cried out, “What does it mean??  What does it mean??  Is he deaf?  I don’t understand.” 

The baby who was in the NICU was being tested for hearing loss as we stood there.  He had just failed his hearing screening and was now moving on to the more detailed diagnostic tests.  Laila was overwhelmed with the grief of what she and baby were facing. All three of us were in awe that we accidentally showed up at the exact moment they needed us...at their lowest point.  Could this really be happening to them again?  Could we really have all shown up at the same time by complete accident?  Yes to it all. 

I put down my silly bag of cupcakes and once seemingly appropriate miniature poinsettia plants for each of Laila’s children.  It was a nice gesture, but this was going to take more. I set my crisis management skills into action and knew that this family needed informational and emotional support right now and I had to hold it together and keep the flashbacks at bay.

We all poured out our love and support and over the next few hours. We took turns sitting with Laila in her room with her baby who could hear or sitting with her husband while they took the two hours necessary to determine the level of hearing loss that baby number two was going to face from birth.

Inside, I was struggling emotionally to hold it together, having been down this road with Wyatt a few months ago. I asked all the questions in my head.  Why him? Why them?  Why us?    I called our audiologist and told her the news on her day off.  Thank God for angels like her.  She was on it and agreed to see both babies soon to retest them after their hospital stay.  I rolled my eyes at the number of appointments that would mean for this family in the early days of living with twin infants—why can’t we be more secure with the diagnosis in the hospital?  It should not be this hard.  It is too hard.

Here were the main messages that I tried to hammer home:

1)     We don’t know anything until all the testing is done, so don’t borrow trouble.  You can’t go all the way down the path to cochlear implant surgery in your mind today because he may never need them. 

2)      Focus on the very next step because you need to move quickly down this diagnosis path.  Do not lull yourself into denial—push past it to acceptance and hit each milestone on time.

3)      You got this.  This is not your first time at this rodeo and you know all the specialists that he will need to see, so who better to raise this baby?  You are not one of the families who will flounder around in the impossibly convoluted system for months not knowing what to do.

4)      Yes, it sucks that he has to be different than most (even than his twin), but if you had to wish for something, this is what I would wish for because of all that is available to you in this day and age to make it a non-issue.  You know these three things:  He will listen.  He will talk.  He will be a part of everything.

5)      Look how well your daughter is doing.  This time you get a head start because you know from birth and you won’t lose any time getting language to his brain.  It will be even easier for him than it was for her.

6)      Since he is so close to you as a newborn, he will hear language and your voice. Start talking to him now.  Every minute you can. Sing often. Respond to his coos with words. Talk close to his ear so that you can give him amplification until his hearing aid fitting. 

7)    You are not alone. You are one of the lucky ones who does not have to wait months or years to connect with other families who can support you.  We showed up during minute one. It is stunning how not alone you are.

      We Lobsters interpreted screening results vs. diagnostic results and gave them some practical considerations about what they were hearing from the hospital audiologist.  We went over next steps together. We hugged them.  We distracted them with funny stories. We held a brand new baby.  We watched them cry.  We watched their parents watch them cry.  We cried when we left.

By that time, Laila was calm again.  She had the first cobblestones in her baby's journey all laid out and she knew what the immediate next steps were.  She was no longer sobbing.  At least right now, she had hope.

The strange thing about this life that we have chosen for our children with hearing loss is that it is virtually unknown to the general public.  Therefore, it is not common knowledge for most parents who hold perfect newborns wrapped in swaddling clothes and listen to the words, “Your child is deaf or hard of hearing.”

Unlike Laila and me, most people are blank slates.  These newbies mistakenly think babies’ brains are nothing but mush at this point and cannot even start to imagine what early intervention would look like for a newborn. Also these parents have just been transported to what they think is Holland.  With the words “Profound hearing loss” or “deaf”, in particular, comes a powerful, silent vortex that vacuums the breath out of our lungs and the “typical” out of your dreams.

But this is wrong.  It is factually incorrect.  It is outdated.  Since 2000, newborn screening, advances hearing technology and early intervention have completely transformed the face of having a deaf baby.   More than 90% of families generally choose a listening and spoken language outcome for their child.  The trick is getting every single one of them to their greatest potential because the system is often unequipped to support that choice. But it is very POSSIBLE with the right support. That is a beautiful fact. The Dream of spoken language and music and integration and family relationships and a “hearing” identity along with the deaf one should not be sucked out of us and evaporated upon hearing the diagnosis.  Not anymore.

And the beautiful fact is masked by the messy messaging.  Most of us think we know what “deaf” looks like.  It looks like Helen Keller, like deaf role models in the media, like children using sign language, like silence, like vibrational enjoyment of music, like communication in a new, unfamiliar language.  We picture Holland.  We know there are tulips and Rembrandts and that it can be beautiful, but truthfully it is not where we really want to go.  And that hurts. Bad. 

Once we get off our misdirected airplane on the journey to Italy and end up in what we think is Holland someone tells us (maybe) that we can actually choose, right now, to make a hard right and go to Lichtenstein instead. 

In complete shock and awe, most of us would reply, “Lichtenstein—Where the heck is that?  I have no cotton-pickin’ clue what it looks it like!   Is it really an option for MY journey with MY child?  I thought I was going to Holland for sure.”    Hopefully, someone sane and helpful would say something like, “Yes it is possible.  It is actually located somewhere between Holland and Italy.  Let me tell you about it.  It’s not the deafness we knew as a child. You can get there if you work really hard, very early.” 

When we hear those words, the vortex closes. The dreams are restored.  What remains is hope, a long rocky road to traverse, and maybe some messy feelings of doubt that your child will ever really get to that seemingly impossible, obscure place.

And a new adventure begins.

By the way, as we veer away from Holland, we find that the Italians still cannot fully understand us and the Dutch may yell at our backs as we go, imploring us to stick with tradition.  It will hurt us and stand right on the raw nerve of our doubt. But we go anyway. Lichtenstein may be virtually unknown and appear smaller on the map, but as more and more parents choose this route, it is getting very crowded with families who are on the same trip.  Maybe way back in the depths of your memory, you think you might have heard of the amazing castles they have in Lichtenstein.  Quite remarkable, those castles. Just wait and see.

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Dear Laila (and anyone else on the road behind me)-

I'm sorry, I  have been meaning to write this for a while, but things have been really busy and messy.

First and foremost, I want to tell you that you are an awesome mom. When someone asks you who you are, say that.  Try it now..."I am an awesome mom." Second, I want to tell you that your kids are awesome.  I could pretty much stop there, but there is a little more, so hang with me for another minute.

Being only six months ahead of you on this adventure where we are each raising two children (a four year old and a newborn) with hearing loss in a listening and speaking environment, I would love it if you would let me tell you some things you might see along the way.  Some of this you know already because of your life with your daughter and some you may not.  Here goes.

This is what your kitchen counter/bathroom counter/office desk/bedroom dresser might look like at some point:

Some days your son will wear his hearing aid proudly, and other times he will pull out the hearing aids 99 times and you will: 1) grab it out of his hand before he eats it, 2) vow to never let him wear it when he is out of your sight, and 3) replace it for the 100^th time and then stare at him while he actually keeps it on.  There are also times that you will give up on replacing his hearing aids for the next couple of hours so that you can do normal things—feed him, bathe him, cuddle and rock him, put him down for a nap, put on his clothes, finally capture that impossible picture of his first tooth, and take a minute to remember that he is a baby. Your baby.  All of this is ok and normal. 

You will worry about everything and ask yourself a lot of questions .  Is he hearing you? Are you doing enough? Will your early interventionist be able to tell what you could not bring yourself do with him that week? (AKA—if you have to narrate the process of letting the dog outside for the baby one more time you are going to go rid of the dog or cut a doggie door with a steak knife. One or the other.) Will he lose the rest of his hearing and, if so, when? Are you so consumed with talking to him that you neglect his siblings? What does the future hold for him to make friends, go to school and play sports?  When you question yourself, say this, "He will do it all."

Your calendar will be a mess because of all of the medical and early intervention appointments to keep. Your finances will be a mess because of all of the providers to pay. Your hair will be a mess because you have no time or energy to deal with it.  You should let your emotions be a mess sometimes because you deserve to take care of yourself. You will forget to take care of yourself along with what time you need to be places and what you had for breakfast and where the extra hearing aid batteries are and whether you changed the baby before you put him in his crib and that you need laundry detergent and milk and that it is teacher appreciation day and that the thingy that goes on the implant for the FM system is supposed to actually show up at school every day and that your boss needs you to read that paper today for the meeting tomorrow. Wait, what time is that meeting tomorrow?? You will worry that you are losing your mind because of all of the mental tabs that are open at once.  You might. Actually. Lose your mind.  Probably while you are on the phone with the insurance company.  When things get extra messy, walk away and take a breath. For you.

Someday, through happy tears, you will watch him say “mama” for the first time and know that it is sweeter than any mom could ever imagine it could be. Because you thought that dream was gone. And when he tells you “no”, you will marvel at how typical that is and try to make him say it again. And when he crawls away at warp speed down the hallway because you called his name, laughing all the way, you too will laugh out loud. A hard, joyful, belly laugh.  And your daughter will love him in a special way for being a lot like her. And peace will come. And your heart will heal enough to notice your profoundly deaf daughter testing your hard of hearing son’s ears with the Ling Speech sounds like this (the last 4 seconds are crucial):

And your messy, beautiful family will somehow make sense. 

  

Welcome to Lichtenstein.

It is messy here.  It is beautiful here.

It is somewhere in between Deaf and hearing (AKA- Holland and Italy). It is still deaf.

It is home. Dreams are spoken here.

Oh, and try not to worry too much about the future right now.  I’ll try to pave the way for you. Six months ahead. The whole way. We will walk together the whole way.

In return, all I ask is that you look behind you and do the same for the next mama. And me.

I know you will. 
xo

This essay and I are part of the Messy, Beautiful Warrior Project — To learn more and join us, CLICK HERE! And to learn about the New York Times Bestselling Memoir Carry On Warrior: The Power of Embracing Your Messy, Beautiful Life, just released in paperback, CLICK HERE!

Little Green People

I recently heard about a thought leader in early education who had just learned that it was possible for children who are deaf or hard of hearing to learn to listen and talk. It dawned on him that in modern times, it is no longer necessary to classify children who are DHH as "off on another planet". He said that, "so what you mean to tell me is that deaf children are not on a completely different planet."

That's right, folks. Modern screening and amplification technology make it possible to identify a child as deaf or hard of hearing shortly after birth and then give them the tools they need to learn language on a typical path. It is a hillier, more treacherous path because of all that parents need to do to drive down that path and all that systems must do to pave the way. But it is more possible than ever that by kindergarten, a child who was born deaf can attend a typical school in his or her own neighborhood. That he or she may not need a sign language interpreter because they use the same fluent language as their family and classmates. That he or she can learn reading and math and science and citizenship directly from a mainstream teacher.

I did not know that when Ella was born. I assumed deaf meant silence to and from my daughter. A visual language, I thought, was the only possibility. 

Yesterday, we celebrated my favorite little green people. Not Martians, but leprechauns. Maybe they are a little different but they are from this planet for sure. 

This little lucky charm made my day and reminded me of her amazing achievements and all we have to be thankful for. For us, deafness has given us a rainbow of new knowledge, new friends, new experiences that color our lives. But, this, my friends, is the pot of gold. 

Ella at 4 years, 9 months and 12 days old. Not on another planet or in a far away residential school for the deaf or using a language that is foreign to me. Nope. 

She tells her story in English. Perfect English.

Thank God.
 

 

Some people would say this was luck, and that she is exceptional.  While, as her mother, I do think she is and out-of-the-ordinary amazing kid, I truly believe this is not the exception.  It should be the rule.  Deaf  children do not have to be out of the ordinary to achieve this-- they just have to have the tools in place and the systems in place and the parent commitment in place and the qualified interventionists in place. 

Wait, when I say it like that, it does sound like luck was on our side. 

So, what can we DO to bring the Luck of the Irish to every family with a child who is deaf or hard of hearing?  Let's stop talking about it being "lucky".

Let's just do it. 

For EVERY family who wants it. Let's make deaf children our "little green people" only one day a year-- March 17.

#TBT: It Gets Better...Really.

A few things have me hearkening back to this time of the year, but four years ago. One of which is a journal entry that I found from a while back that pulled me back into a time when Ella was much smaller-- almost Wyatt's exact age, and times were tough.  Keith was laid off from his job and we were facing Ella's first implant surgery in a couple of months.  We had just been told that she was going to need a hip surgery, which she never actually needed and did not have.  I felt compelled to be at every appointment even when I knew that practically, I probably should have been at work, seeing as though she had another, more than capable parent  at home with her.  I feel so fortunate to be swinging at this hearing loss fast ball with a different bat.  (Count that as my first official sports analogy.)  I am a work-from-home mom this time and I've played this game before.  And I know this one little secret that most people who go through hearing loss with their child do not know...it gets better.

I also have been thinking a lot about Care Maps.  A mom of a child with a disability was struck by how hard it was to keep up with all of her child's appointments and at the same time was struck by the fact that the specialists she was seeing all thought that their part of the puzzle was clearly the most important.  All made valid arguments to that effect and she was having trouble figuring out who was most righteous in their determination to be most important to her and therefore be prioritized.  In order to make her point that there are only limited hours in a day, she made a Care Map for her specialists that illustrated all of the efforts she was putting in with each one and carried it from doctor to therapist so that they could help her prioritize all of her priorities.  It was clear that no one was talking to the other one and therefore they had no idea the rat race that she had been facing.

I drew one for Ella's first year with profound hearing loss.  Yup, it is in PowerPoint.  You can take the girl out of consulting, but you can't take the consultant out of the girl.

It looks like a hot mess.  It translates really into about 3 appointments a week.  Wyatt is a little easier because he only has one impacted ear. Heck, Ella is easier now because she is just plain older, gets fewer ear infections, and needs much less therapy and no more visits for ear mold replacements now that she has her CIs.  In fact, in year 4 (last year) her care map looked like this.

Much better, right?  I wanted to share this with other moms who are going through this and moms who aren't and wonder often why I have visibly aged 10 years in the last five. EACH.  This is why, people.

But the good news is, it usually, by the grace of God, does actually look and feel better in a couple of years.  I knew this on the day that Wyatt was diagnosed and just that perspective in and of itself helped me feel like it was not so bad and I knew I could do it.

But, the first year kinda sucks.

Kay, so, brace yourselves, I wanted to share the stream of consciousness that is a February 2010 journal entry about one of the worst appointment days we had.  It is long, so please feel free to skip and not read every word.  But it is good stuff.  It made me remember what I really wanted to forget.
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6:10 am-- I send the file I worked on over the weekend from my couch. I said I would send it Sunday, but it was Superbowl Sunday and did I really think my boss would read it on Superbowl Sunday?  Not that I know that he is either a Saints fan or a Colts fan, but no self-respecting guy is hanging out by the computer waiting for a work email to come through on Superbowl Sunday. 

Truthfully, I'm just glad that my wireless internet works right now.  It has been spotty at best, and when I turned on my computer at 5:30 am, I did not feel like trekking upstairs and stepping on the creaky board in the hallway floor and waking up Avery before her normal wake up time.  Ella is already making little happy "I'm awake" sounds in her crib.  She is truly always happy.  It seems impossible to me that a baby could be that happy, but she really is.  She wakes up happy and goes to bed happy and is happy all the time in between.  It is the blessing that I'm sure will carry her well through life.  She gets it from her father. 

Suddenly, a little three year old appears next to my knees.  I hit send and get ready to stand.  She moans with her fingers still in her mouth and takes them out only to say, "I wanna watch TV. I want a cereal baaaaarrrr." Clearly, not a morning person. Sigh. She gets it from me. 

We go through our normal Monday getting ready routine. I nurse the baby; Avery fights me on her outfit;  Ella goes through two clothing changes;  the dog looks forlorn at not getting walked before work/school/appointments. Clifford and Curious George serve as background noise and I think, ‘Well, at least she prefers cartoons that teach science and citizenship.’  I pour coffee and mix bottles. I select circle time books. I pull on my skinny jeans and fake uggs and walk five packed bags (diaper, computer, purse, backpack, hearing kit) to the car.  I slide into the front seat of the SUV.  Keith finishes scraping the windows, but leaves frost on the back two.  As he sits down in the driver’s seat,  Avery howls, "Daddy!!! You forgot my window!!  I can't seeeeee." I go back into the house twice before we can pull out of the driveway-- first for my phone charger, then for my jacket.  It's colder than I thought it would be, although somehow I'm the only one who is dressed inappropriately: without a coat.

8:44 am-- Drop off went well today at Primrose and we are half way to the Atlanta Speech School when my phone rings.  It's Linda.  We're going to be there early.  I wonder if she is cancelling. 

"Carianne. It's Linda.  We had 8:30 audiologicals this morning.  Are you almost here?"  Crap. 

"Wait, I thought it was 9am."

"No, we went back and forth on the time and settled on 8:30 because I have a 10am appointment off campus."

I look at Keith.  "I'm sorry, Linda.  We will be there in 5-10 minutes.  Can we still do it?"

"Yes, that should give us 40 minutes or so. Okay, see you in a few."  When we hang up I know she is probably thinking that we are late EVERY week and she may have to speak to me about it.

Keith makes a joke  by revving the engines a couple of times on the way.  I comment that he suspiciously gets annoyed by traffic, but when we have total control over our lateness, he thinks it's funny.  He reminds me that he wasn't the one talking with Linda on the phone, so he has no guilt. I remind him that appointment scheduling is supposed to be his job now and we have to make that complete transition soon because I can’t keep it all straight in addition to my work schedule.  Maybe it was too harsh to say that, but it’s true.

8:55 am-- I jump out of the car in the kiss-and-go lane and pluck Ella from her seat, still asleep. She pops her head up and blinks at me while I gather her hearing kit and head inside.  Linda is waiting at the door with my visitor's pass and has already signed me in. Janice, the audiologist, greets us both and we hurry to the booth.  Linda says to me, "Don't put her hearing aids in yet.  We are going to put her right in the booth."  I apologize again for being late and let her know that we are not really ourselves today, as we are seeing an orthopedist for a second opinion this afternoon.

"For what?"

"I didn't tell you last week?  Get this-- we went to the orthopedist for a routine check-the-box follow up visit and they are saying that her hip dysplasia is not cleared up yet and she needs surgery and a..."

"...cast."  Linda finishes my sentence. 

"Yes, a body cast." 

As she hooks up Ella's equipment in the booth and starts to attach the leads to her ears, she says, "For how long?"

"Are you ready for this...Do you want to sit down?  Six months!"

"That's about right," Janice says, "My niece had one."

Linda sighs and stares at Ella.  Without her saying a word I know she is thinking all of the things I have been thinking:  but she'll miss crawling and walking; how will missing major milestones affect her language pathways in her brain; is she still a cochlear implant candidate; when will they do the hip surgery and how will they time it with the implants;  what physical therapy will she need afterward. And the million dollar question:  how will this family get through this-- a profoundly hearing impaired child who needs cochlear implants and a major orthopedic surgery this year. Who will take care of her in a cast for six months without losing it?  Could she really have such bad luck? 

Ella starts nodding her head at Linda with her whole body the way she has been for a couple of weeks.  She wants her attention and she melts Linda's concern into a wide smile.  We start the test. 

9:05 -- Keith walks in with the diaper bag and goes to Janice's side of the booth.  Ella, Linda, and I are in the other side, separated by a wall of glass.  It is so sound effective, that I literally have heard pins dropping in there.  No idea how they make the walls that impermeable, but sound is really different in there.  There is no background noise.  It's like a tomb but it is also like a window for sound to perfectly enter the ear canals and get to the ear drum and rattle the tiny bones and make sound waves in your middle ear and cochlea whose hair cells vibrate with precision so that the nerve sends a pure, hollow, exact message to your brain. Or something like that. They start playing tones into Ella's ear while Linda keeps her visual attention by silently stacking rings on a wooden toy in front of her.  Ella is on my lap and I see the bald u-shaped spot on the back of her head where she has worn off the hair by spending too much time in the car seat.  The rest of her too-long-for-an-eight-month-old hair is matted because it was wet when she fell asleep last night and I forgot to run a comb through it this morning. She currently has a long piece of hair dangling from the base of her skull like the rat tail of a boy my brother was friends with when he was in second grade.  It was not an attractive look on him and is equally unattractive on Ella, but I love her strawberry blond hair and have refrained from cutting any of it off, including that particular section.  Besides, all of her pictures are from the front and only those who really know her look at the back of her head anyway.  

I know her.  I know that when she nods her head one second after the tone, she is doing it because she hears something.  But Janice looks worried.  She speaks through the microphone and tells us that she is just not whipping her head in the direction of the sound like she was last time, in December.  She can’t get Ella to locate the sound.

Linda attaches the bone conduction headband behind Ella’s right ear, her good ear.  They try the tones again.  This time, when they make a sound, they flash a light on in a glass box in the upper left corner of the booth.  In addition to the light bulb, the glass box has a statue of Big Bird on a bicycle.  It is supposed to help condition Ella to the sound.  When the sound comes from Big Bird’s side of the room, she is supposed to turn to it, looking for him.  She is supposed to make the connection between the direction of the sound and the direction of Big Bird.  The light goes off and a new sound goes into Ella’s ear.  It’s coming from the right this time.  Janice lights up a box with a dog playing the drums.  Ella stares straight ahead at Linda.  A second later, she nods with her body.   Janice is not convinced that it is a response to the sound.  She tells Keith that today’s test is like testing a completely different baby than in December.  She is a different baby.  She sits up unassisted and nods and claps and rocks on all fours and says “Thank you” in sign language every time you give her a toy.  She suggests a tympanogram to test for fluid in her ears.  Ella has had chronic ear infections and it would not surprise me if that is what is causing the marked change. 

We cross the hall to another room and Janice inserts a new lead into Ella’s left hear and presses a button.  A slightly sloping line appears on a computer screen and it has a peak in the center.  Clear.  No fluid.   She inserts the tube in the right ear.  The line on the screen is flat and the volume measurement of  her ear canal is ¼ of what it should be.  Blockage.  Again. After a long conversation about the hip issue and the rapid decline in Ella’s hearing, Janice says that she thinks we need to go back to the ENT this week to see about the fluid in the right ear.  I am amazed that we have to go back for the third week in a row, but that is becoming par for the course for Ella this winter.  She has basically had a cold leading to an ear infection since Christmas Eve. Well,  really since Halloween, but we did get a string of consistently healthy days in December.   Keith and I look at each other and shake our heads.  She has been on her ear drops for the past five days and her ear is still infected.

“I think we need to ask Dr. Herrmann for  a new treatment plan for her. She has not had a cold in three weeks, but this ear keeps giving us problems,”  I say.

We spend a few minutes sharing theories on the source of her difference in responses as compared to  last time.  Janice jokes that Mommy wasn’t here last time, so maybe that was it.  Pangs of guilt. I was in DC for a business trip and Keith brought her.  She did really well that day.  I say that I think it has to do with the fact that she has not been able to have both hearing aids in at the same time for a couple of months and it is inhibiting her ability to locate the sounds she may be hearing. 

Linda starts instructing.  “Well, we really need to get a handle on these ear infections.” No kidding.  Same as what Dr. Herrmann said last week.  “You know, we could worry about her not getting her implants because of the body cast, but really, Herrmann is not going to do the implant surgery unless her ears are clear for at least eight weeks. “ The surgery is approximately 13 weeks away.   “I recommend that you go back to the ENT today, if you can, and see if he will offer you something else to clear up the ears. Now that she is finally out of daycare, she should have a much better chance of staying healthy.” More pangs of guilt. This time stronger.

“Well,” I say, “and the weather should be getting warmer soon.  Maybe that will help.”  We all sigh and shrug and frown at Ella. She claps and smiles. As we are leaving, Linda reminds me to call her to tell her the outcomes of our appointments today.

9:53 am-  We are back in the car. As we approach Trinity Presbyterian Church, where I take the girls and myself to church each Sunday, I dial the audiologist at Pediatric Ear, Nose, and Throat of Atlanta.  PENTA for short.  Rachel answers. 

“Hi, Rachel.  This is Carianne Muse.  My daughter Ella Muse is a patient of Dr. Herrmann’s and we usually see RaDora for Audiology.  We were there last week to get Ella’s ears suctioned and cultured, but we have not received results back yet.  She just had an audiological visit at the Atlanta Speech School and it did not go well.  I think we need to come back this week to see what is going on.  That right ear is still not clear, according to the tymp.”

Rachel replies, “OK.  I’ll look for her lab tests.  We are going through a remodel and things need to get boxed up before each weekend, so we are having a bit of delay on some of the labs.  I’ll also see if I can get her in for a PA visit today.”  She puts me on hold and the muzak begins.   A minute later she comes back.  “I have an opening at 10:30 and at 2:15.  What works for you?”

“We’ll take the 10:30.  We are on our way now.”

I hang up and tell Keith that he will have to feed Ella her bottle in the waiting room while I do my conference call with my boss, also scheduled for 10:30.  Chances are, even if I spend the entire 30 minutes on the phone with him, I’ll still make it to the waiting room before we get called in to see the Physician Assistant.  We arrive at Children’s Hospital and turn to park in the parking deck.   ‘Hello old friend,’ I think to myself as we pass the medical office building and the hospital entrance.  It’s only 10 minutes after 10am and I have 20 minutes until I need to call my boss.  Keith gets Ella settled into the stroller and lugs the diaper bag up to the elevator as I sit in the dark and dial my mother on my cell phone.  I confess my deepest concerns for the day.  What if the new orthopedist recommends the same treatment plan?  I don’t hold back the tears.  They flow like a river.  “And her hearing is worse, Mom.  I just don’t know how much more I can take.  When are you moving to Atlanta, again?”  She tries to comfort and I know she is feeling the same pain that I am.   I tell her how wrong I feel that I’m this upset, when Ella’s conditions are fixable and completely reversible, and there are so many kids at this hospital right now who don’t have that much going for them.  I pull myself together and hang up the phone.  I dial my boss’s number, but then remember that my Blackberry mysteriously sets the time for 15 minutes later than it actually is.  I still have 10 minutes before I should even try to call him.  A few minutes later, I dial again and I get him.  He asks me to call his office phone instead of his cell.  We spend most of the next half hour discussing the file I sent this morning and how it will feed the agenda for his meeting at 3pm, that I will have to miss.  Again.  We settle on few points and he asks me if I can enter some additional data and make the changes to the agenda that we discussed.  At first I agree, because I anticipate having lots of waiting time where I could do some work.  Then I realize that because I’m driving all over town today, the likelihood of being able to get a wi-fi signal to send the new documents back to him is not guaranteed.  I have to decline.  I apologize and try to assure him that now that we have a working draft of how we will proceed each week, I will be able to support the meeting agenda creation for each subsequent meeting.  He does not seem too annoyed, but I’m sure he was hoping to avoid doing that task today.  Life 1, Carianne, 0.

11:11 am-  Before heading into the PENTA office, I sneak in a bathroom break.  When I finally get in there,  the waiting room is packed with families.  All different types of families.  I scan the room. Among the crowd, an older woman possibly with her granddaughter who looks about 10, a nurse and mom with a teenage girl in a stand-up wheel chair, one family speaking Spanish, a mom and a preteen with a trach, kids in jeans and kids in private school uniforms.  We have the only stroller in the room. No kids with hearing aids or cochlear implants from what I can see.  I spend about 15 minutes having a conversation of raspberries with Ella.  I may discourage raspberries as spitting later in her life, but now, if I can get her to imitate my mouth and make the same sound, it is great for her language development.  I do this probably to the disdain of some of the families sitting nearby who may be worried about germs she is passing by spitting into the air.  She loves this activity and would probably do it all day if we could. Keith reads in the chair next to me.  Finally, they call her name.  I recognize the Physician Assistant, but can’t remember her name. Kim? Kathy? She reminds me of her name, but I’m thinking about the last time I saw her and I don’t retain it.  She did Ella’s pre-op appointment for her ear tube surgery back in August. I remember her as efficient and professional, but young  and similar in looks to someone I used to work with when we lived in North Carolina—that woman is a dermatologist now.  The PA has on a beige sweater with wide cream-colored stripes, brown business-casual pants, and comfortable-looking sensible brown leather shoes.  I like her outfit better than mine. She apologizes for the crowds and explains that the Alpharetta office is closed today and she says she is just getting used to the new arrangements in the remodeled Atlanta office.  They apparently moved all of the staff to Atlanta today and they are doing the best they can with the space they have.  I wonder briefly why it is closed, but realize it is really inconsequential and I’m ready to get down to the matter at hand.  I explain the cycle of ear infections that Ella has been experiencing since December, that we were here last week and got a culture, that her hearing is worse in both ears, but the tymp only showed fluid in the right one.  I emphasize that we may be ready to try something new to get her healthy.  She looks in her right ear and says that she believes the tymps ( the one from this morning, and the one that RaDora repeated while I was on my conference call), but that she sees no drainage.  She sighs and stares at Ella with some bewilderment. 

“I would normally ask Dr. Herrmann this question as opposed to parents, but he is out today.  Has he ever talked with you about possibly explanting the tube and inserting a new one?”

“Umm…no.” Please no more surgeries.

“Because sometimes with kids who have these recurring issues, we consider that the bacteria we find on cultures came from the tube itself and may need to be replaced to get a handle on the recurrent infections.” Great.  “I found your culture from last week and there was a strep bacteria in the culture, similar to the one that she had back in the fall.  However, it should have responded to the Ciprodex drops….I recommend that we take a look with the microscope before we decide how to proceed. “  I know this means more waiting. 

The microscope room, is down at the end of the hall.  It has the microscope on a movable arm, a flat table, sometimes a screen that shows what the practitioner sees to the rest of the room, a couple of metal stools and tubes for suctioning and culturing fluid.  We finally get into the microscope room and I put Ella on the table.  The PA calls in Shelley, my favorite nurse, to help hold Ella’s head to the side while the PA looks in with the microscope.  The PA talks to Ella and tells her that she is just going to look.  She is trying to be soothing to her, but Ella 1) knows what’s up, as she has had this procedure numerous times, and 2) cannot hear a dadgum word of what she is saying because her words literally fall on deaf ears.  Does the PA forget or is she talking more to soothe herself or us?  I hold Ella’s left arm down and place my right hand over her left arm and her pelvis to minimize squirming.  Shelley gently but firmly places Ella’s head so that it is turned with her right ear up and her face is staring directly into Shelley’s face. 

Shelley whispers, “You are my favorite, Ella.  Don’t tell the others.”  I chuckle at her because she was definitely saying it for my benefit.  Ella stares at Shelley and does not cry or blink or squirm as the PA looks in.  “Nothing, “ she says.  I do not see any fluid, but I’m going to have Dr. Thomson take a look.  She leaves the room and Shelley picks up Ella.  Ella enjoys the attention, but leans over in my direction and waves both hands at me so that I’ll take her from Shelley.  A few minutes later, the doctor comes back in with the PA.  He introduces himself and puts out his hand for each of us to shake it.   He looks in Ella’s ear and says, “Can you see this?  It is a brown piece of dried fluid just inside the tube.  Can you see it?”  The PA nods, but I’m not convinced she sees it.  The screen is not in the room today, so I can’t see what they see.  Dr. Thomson prepares the long, cake-tester-like metal tube by hooking it up to the suction machine.  He says, “Well, at least in this case she is not going to be scared by the loud sound in her ear.”  I say, “Except that every sound is loud to her, so if there is a sound in her ear, to her it is loud.”  He nods and looks at me like he got a glimpse of the world through Ella’s eyes for a second.  He inserts the tube and applies the suction.  “There. Do you see that?”

The PA leans in and says, “Yes, it is clear now.”  A perfect student. 

Dr. Thomson says, “Well, that should do it.  There was a piece of debris blocking the tube, but there is no fluid in there—it is bone dry.  It should be ready to go and you can put the hearing aids back in. We always believe the microscope over the tympanogram.  The blockage is gone, and the tymp should confirm that.” 

He is right.  After we wait in the holding area—a  round-ish section of the office that is right next to the checkout counter and has good access to the medical exam rooms, the audiological offices and the door to the waiting area—we follow Rachel through the waiting room and into the larger audiological office out in the hallway.  RaDora is in there.  We wave, but she is talking with another family.  We file past her with Ella and I sit next to the tympanogram machine.  Third one for today.  Ella’s ear canal volume is up close to the other one, but not exactly the same and the blockage is no longer showing up on the slope of the line.  We can go.   As we leave, I mouth to RaDora that I’ll call her later.  Keith told her about the orthopedist’s diagnosis and I’m sure she is curious to hear the outcome of our appointment this afternoon.  She may also want to test Ella’s hearing here, in PENTA’s booth to see if she gets the same results as Janice at the Speech school.  RaDora always gets better results because she trusts that the parents can tell when the baby can hear.  She knows we know her better and can tell her if we think Ella responds. 

“That was a good appointment.” Keith says to me as we walk toward the parking deck. 

“Yes, compared to some others we have had in the past week, it was not bad.  So, why is it that we do not need to keep doing drops or an oral antibiotic?”

“Because the culture was from last week…”

“…And, right, right, the ears are clear now.”  Even though this is good news, it does not explain the poor performance on the hearing test in the booth this morning.  Is her hearing suddenly disappearing completely?  I have heard of other kids who had that happen.  I can’t focus on that right now, we have to get to the third appointment for today.

12:05 pm-  Ella is back in the car seat.  Our orthopedic appointment is not for almost 3 hours.  But, it is in Alpharetta and we will have a significant drive to get out there.

Keith asks me what we should do now as we drive to the parking attendant’s booth and pay our fee.  I say, “Let’s head up there now.  There is a McDonalds up there and maybe some other stuff.  We can get lunch and then you can feed Ella her lunch while I do my client conference call.”

12:33 pm – Ella is passed out in the car seat and we are sitting across from each other at Schotsky’s Deli on Old Milton Parkway.  We are using the time to eat and get our questions together for Dr. Schraeder.  During the conversation, I quickly begin to tear up.  I’m scared.  I’m worried that we are going to hear the words that we heard the other day again.  I’m worried that my denial and hope will be shattered and we will have to live with the words surgery and body cast as the truth. 

Keith looks worried and presses me to explain my tears. “Why are you so pessimistic about this? A minute ago you were telling me you were going to argue with the doctor if he told you she actually needed the surgery.  Now you’re looking defeated.”

“I don’t know.  I guess I am still angry and planning to argue, but I’m worried that I will break down completely if we hear a repeat of what you heard last week.  I don’t think I can take it.”

“It’s gonna be ok.  No matter what we have to do, no matter what she needs, we’ll get through it.” Easier said than done.  I’ve been playing that game with my brain and my heart for months now and I still don’t believe my own mantras of “Whatever it takes, it will eventually be ok.”  The stamina is not there for this blow.  I am really unsure if I can fend off complete despair if we have to put our little daughter under the knife 3 times instead of 2 this year and then watch her suffer in a body cast for six months, then deal with the aftermath of not letting her learn to crawl and walk on time.   It just seems like too much. As these thoughts are passing through my head I find it ironic that the thing that will bring me down is something temporary, something that can be fixed and will be a distant memory someday.  The permanent hearing issue that will only be aided by computerized  technology, will always require assistive devices and will make her look and seem different than everyone else would not do it.  It was really the body cast.  How selfish.  I do not want to go through taking care of her while she is in a body cast.  That is what it boils down to.  Well, that and the worry that it will do permanent damage to her language development, her psyche, her sense of self.  I do worry that if it is the last straw for me, that it will surely be the last straw for her and she will not make it through as the same child that she would have been without that experience.  I just felt like we were kicking her when she was down and that her motor skills were where she continued to be consistently normal or above average and we were taking that away from her. And us.

Actually, Linda Lasker from the Speech School was the person who helped me form that mantra in my head.  She was the first person who told me that it was going to be ok.  Not that Ella was going to be exactly as we wanted her:  fixed, hearing, not deaf, perfect, whole.  But that we would cope and that she would be fine. She would learn to hear and talk in her own way and the new plan for her life would form and we would be able to picture it clearly and live it out exactly according to the new normal.  What a great feeling it was to hear that when everything seemed like it was spinning out of control.  Weeks later, when I met Linda in person and visited my friend Comer who was also the Executive Director of the Speech school, I relayed it to him and held it up as evidence that I had made the right decision to reach out to the parent-infant program led by Linda.  She knows what to say to parents when they need something.  She combines instruction and guidance with good sense and comfort in a way that is motherly, accepting, wise and exactly what we need.

Our orthopedist, the first one, was quick to point out that this hip issue is fixable, reversible, completely correctable. With surgery.  That may comfort parents who only have that to deal with.  Maybe some can say, it’s just 6 months and then it is done and we can move on.  It is not comforting to us.  It is overwhelming and seems to be exponentially harder than it probably needs to be. 

As I rise to make my way back to the car, I remind Keith that Ella’s lunch and after-lunch bottle are packed in the diaper bag and that when she wakes up, they should be given to her.  He asks me when my call will be over.  I tell him it is scheduled for an hour, but it could be shorter or longer than that.

1:49 pm- I press the end button on my cell phone.  On my lap is a hard copy of the document I was reviewing with my clients.  It is marked up with red pen now, when before it was only in black and white.  I’m staring directly into the side window of the restaurant where I had lunch an hour before.  Keith has his back to me and is sitting at the same table where I had been.  Ella is facing him in his lap, but I can’t see her.  His back and arms cover any sight of her.  

My call went well and I’m pleased with the outcome.  None of the changes that I needed to make to my carefully crafted document were ones that I had a true argument against.  The client is the client, after all. They pay the bills, so they usually get what they want.  The purpose of the call was to explain some of the choices I had made and perhaps persuade them to see it my way a couple of times so that they realized that I had both of our interests in mind when I wrote it.  The purpose was to have them see that the changes that they thought were obvious were not a product of having selected someone incompetent to write the document, but to the contrary, that each drift away from their own concept of what should have and should not have been written was justified and reasonable, but also fixable.  Completely correctable.  With edits.  I had succeeded and felt rather energized by my accomplishment. It’s really why I work—the thrill of pleasing a client and getting a little of what I want for them at the same time. That, and the health insurance.

As I stare through the window at my husband’s back, I realize I’m having a moment not unlike a biblical story that I have recently heard.  Jesus takes three of his disciples to the mountaintop days after the fishes and loaves miracle.  They appreciate the break from the valley where there are sick and needy folks everywhere.  They have a vision of Moses and another prophet talking with Jesus and then as they all start to leave, they beg Jesus to let them stay and continue to take shelter on the mountain.  Even build some shacks where they can hide out for a while. Wrong answer. God sends a scary cloud to envelope them and tells them that Jesus is his Son and that they should listen to Him.  Then they, of course, go back down the mountain.  I was on a mole hill of my own.  I escaped the day for a few minutes by conducting a successful client conference call and I have  the feeling of a mini-vacation in the car alone, while someone else takes care of Ella’s basic needs.  I did not want to go back down the mountain.  Can’t I stay a little longer? 

No, get out of the car and take your daughter to the doctor.

Dammit. I hate clouds.

2:03 pm- We enter the doctor’s office almost a full hour before our scheduled appointment.  We are supposed to be there 15 minutes early, but there really was nothing to do on Old Milton Parkway and we were ready to head to the appointment that really defined the whole day. I take the paper work from the receptionist and settle into my seat as Keith fills Ella’s bottle with water in the hallway and then mixes in the formula powder.  I was still nursing the baby, but only twice a day now.  I had battled through 4 months of pumping at work during the day so that Ella could get breast milk while I was away from her.  I believed in the principles of breastfeeding because I was in public health and because I had seen the benefits it had afforded both of the girls while they were in daycare.  The quickness with which they recovered from a runny nose always amazed me and I was sure it had something to do with the breastmilk.  I had read in my breastfeeding book that when you directly feed on the breast, the baby actually gives you the virus they are fighting and you make the antibodies and then feed them back to her.  Amazing!  Totally worth it just for that little miracle.  I had also believed that Avery’s total lack of need for antibiotics until she got strep at 18 months and absence of any sign of ear infections until she was two had much to do with the fact that she was exclusively breastfed after she got over the jaundice through her 6^th month.  Ella blew that theory out of the water because she had essentially had an ear infection non-stop since her birth.  Ear infections, I’m afraid, have much more to do with the genetics of the construction of the ear and Eustachian tubes and really very little to do with feeding methods.

*********************************************************************************

Ok, so there you go, all that by 2pm.  The story ends well because New Hip Guy told us that we did not have to subject Ella to the surgery and we immediately switched to him.  By the year 4 care map, he is GONE.  Completely gone.  She is back to just monitoring by the pediatrician.  Hallelujah.

But, seriously, I have no idea how I survived that year.  I had no ability to comfort myself with "been there, done that".  I felt like I was on an island.  I had not met my Lobsters yet. It was a dark and lonely time.  

Not to steal from the LGBTQ community, but every mom of a child who is deaf or hard of hearing should get someone to whisper this in her ear:  IT. GETS. BETTER. 

It really does.