#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.

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

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!