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!