Lobsters

 

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yes, okay.   I hear you loud and clear.

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

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

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

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

Amen!

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