On being open and grounded in parenting

It happened at Chick-fil-et this time.  As I scrambled to grab utensils and ketchup packages before our food made it’s way to the table I saw a man talking to my friend who was listening and also scanning for me.  I approached the table, taking stock of the man’s hearing aids and use of sign while he spoke.  He was deaf and he’d spotted my son’s implant.  

I love when we see adults or kids who wear hearing aids or cochlear implants.  I usually make a point to show Liam and sometimes we’ll say hello.  It doesn’t bother me and I want Liam to see other people who are also deaf.  As I suspected this man had seen Liam.  He asked about his implant and then mentioned when he talked to Liam he’d signed and Liam hadn’t really responded.  Did he know sign language?

“No, not really.  He knows a few signs, we did a little when he was first learning to listen and speak, but pretty soon he didn’t need it as much.” 

“Oh.  You know it might be helpful to have him learn sign.  You never know what might happen that would have him need to be able to communicate with sign.”

I gave a bit of a non-committal answer and commented that yes, we do hope to get him interested in sign someday.  This very kind man and I chatted for a bit longer, he made a point to say he’d be working there through the summer and he’d be happy to help Liam learn sign, adding that he knows how important it is for deaf kids to have role models in deaf adults.  I thanked him and made a point to mention that Liam does have some adults and peers in his life who also wear cochlear implants.  Later he came back to our table to ask if we liked to watch movies.  He recommended one with Marlee Matlin, a famous Deaf actress, about parents with a deaf son who were trying to decide if their son should get a cochlear implant.  I hadn’t heard of the movie and told him I’d check it out.  I’m willing to bet there was at least a little of an anti-cochlear implant sentiment throughout the film.

On the surface it was a pretty benign conversation with a deaf man about my deaf son.  And yet, because I am aware of the intricacies of Deaf culture, the complicated feelings about cochlear implants, and the judgements some make about the decisions hearing parents make for deaf children, I knew there was a lot going on underneath this polite conversations.  I knew what he wasn’t necessarily saying and he likely knew the same for me.

Interactions like this stir in me a strange combination of both defensiveness and openness.  The conversation is loaded and I wonder what assumptions this person has made about our family and our decisions and my ability to parent my son.  I often replay these conversations, defensive about our choices, anxiously crafting imaginary arguments and point by point rebuttals of his unspoken judgments.  And yet he knows something about the world my son exists in that I will never fully know.  And I can’t discredit that.  I want to listen when he speaks because he has something to teach me.  

I am learning the truth that white parents of black and brown children have come to understand for decades, they need to look outside themselves to help their children navigate the world.  There are identity issues and challenges that require parents to reach out to others who can understand these things in a different way.  Even though I carried this child in my body, we will experience the world differently and I need to be open to understanding that.

And so I try to stay open.  When I feel defensiveness creep up, when I want to shout, “I’m not a bad mother!  I’m making thoughtful, intentional decisions for him!” in the face of a man who is genuinely trying to offer help and perspective that only he can, I need to stop and listen.  I need to receive the information and let it shape my parenting.

But before it informs how I parent, I need to sift through it, to hold it up against decisions that I know deep in my bones were the right ones.  I must first ground myself confidently in what I know is true.  I am confident in our decisions.  I know we did the right thing for Liam.  And I know we are doing our very best to surround him with other deaf adults and peers.  

I don’t have to let every opinion and perspective of every well meaning stranger inform my decisions with Liam.  I only have to stay open.  Open and grounded.  Both/and.

I suspect this may be a parenting truth for us all.  To stay grounded in the decisions we have made with careful intention while staying open to the understanding that there is always a different perspective that may be helpful.  If we insecurely let everyone else’s opinions on parenting sway our every decision we will be inconsistent and unmoored, our poor children constantly having to adjust to whatever new idea we’ve decided we must chase down.  But if we stubbornly dig into “our way” without allowing for outside wisdom we risk missing the deeply individual needs of our children, for even those for whom the apple does not fall far from the tree  still are not exact replicas of their parents.

And so maybe we’ll head back to Chick-fil-et this summer for sign language lessons.  I know this second language would be good for Liam and we have always said it’s a skill he needs.  But I won’t regret or second guess our decision to focus first on listening and spoken language.  It was the right choice for us and I'm glad we made it.  

The Protestors

When I was in high school I attended speech camp every year (nerd alert!).  I was way into the forensics team in high school, participating in the acting events where I would compete, performing 8 minute pieces of different plays either by myself or with a partner.  And camp was Mecca for nerds like me.  It was held on a nearby university’s campus.  Every year the campus also hosted a camp for the Deaf during the same week as speech camp.  (Believe me, the irony of Deaf camp and speech camp running at the same time was not lost on me, even then.)

Every year I would watch the kids from Deaf camp in the cafeteria, the only time our paths would cross.  They ate lunch, signing across the table, having whole conversations without a sound.  It always brought up in me the question of whether I’d rather be deaf or blind.  My answer was always deaf, being blind seemed to require so much assistance, there seemed to be many more limitations on the blind to my fifteen year old self.  But as I watched these teens, I wondered if it wouldn’t be worse to be deaf.  To not be able to communicate with the world at large seemed untenable, beyond limiting.  I didn’t know any Deaf kids in my real life and so it seemed like if I was Deaf I’d be all alone on an island, isolated from the world around me.

******

At the AG Bell convention the protesters arrived early.  On Thursday night I caught sight of them as we made our way back to the hotel.  One woman, who I’d later realize was the leader of sorts, noticed Liam’s implant and started signing to me, asking if he signed.  He doesn’t but I didn’t want to get into it with her so I played dumb, smiled serenely at her and steered Liam toward the hotel.  My stomach felt queasy.  The presence of the protestors stirred something in me I couldn’t identify, or wasn’t yet ready to wrestle with.

The protesters were a group from the Deaf (with a capital D) community.  They were protesting what they believed to be AG Bell’s silencing of the Deaf community because, in their opinion, AG Bell doesn’t value ASL and instead encourages Listening and Spoken Language.  Additionally, AG Bell promotes and encourages the use of hearing aids and cochlear implants, which some in the Deaf community object to as they feel it is trying to “fix” or “cure” deafness, a quality they don’t see as a disability so much as a difference in the human condition.  There’s a LOT to unpack with all of this, much of which I’m not going to get into here and now.  I’m still learning a lot with regard to this conflict and as a parent of a deaf child with a hearing aid and cochlear implant, it’s more personal than not. 

All I can say is I went to bed that first night feeling uneasy.  I wasn’t really angry with the protestors.  But I didn’t feel right either.  I looked at my sweet boy knowing he was little d deaf and wondering if that was going to be ok with him in fifteen years.

******

On Saturday afternoon as my friend Lyra and I sat by the pool watching Liam swim she filled me in on what the protestors had been doing down in front of the hotel.  We’d been hearing rumblings about them from within the convention.  Security was on guard, not that any of us really worried for our safety.  The protestors had gotten a little more aggressive today though, arguing with families about their choice to implant their child.

As Lyra relayed one particular exchange she said, “I just feel so bad, some of these families have made an agonizingly difficult decision and these protestors are making them feel terrible about it.”

And with that statement my own feelings of unease came sharply into view.  I turned to her and said, “You know, the protestors make me feel bad because it wasn’t an agonizingly difficult decision.”  We never even really considered not using hearing aids and then an implant for Liam.  It wasn’t an option for us to have him learn ASL and participate solely in the Deaf community.     And seeing the protestors made me feel guilty for that.  They made me wonder if we should have at least considered the other side, looked into it more.   

The protesters made me feel, for a moment, insecure about our decision and the fact that it hadn’t really been a decision so much as the next logical step on our path.

And it wasn’t like I wasn’t empathetic to their arguments.  The Deaf community gets smaller as technology gets better.  Nowadays most deaf kids we know are completely outside of the Deaf community.  We don’t know anyone who exclusively signs, and Liam wouldn’t be able to communicate with them if we did.  I understand the fear that that instills, when it seems that all that you hold dear, the community that has given you everything looks as though it’s becoming obsolete.  And I also know that for some cochlear implants are not an option; the structure of some people’s inner ears make it impossible to implant.  As the Deaf community lesses it is these kids for whom I worry.  Who will be their home if everyone else can hear (with assistance)?  I may not agree with the protesters, but I can absolutely understand where they are coming from.

Which brought me to another feeling the protesters stirred up.  I’m not used to being on the side of the protested against.  Typically I tend to side with protesters, or I have no real understanding of a situation and take neither side.  It was an uncomfortable feeling to be on the side of “power” (not that I really think AG Bell, and those who choose implants and hearing aids are on the “power” side of the scale-it's just that typically those protesting do so because they feel powerless).  In this area of our life, if the Deaf community is the one feeling marginalized, we are certainly not on that side, and would actively fight for our right to continue down the path we have chosen.

In the end, that’s where I land.  I would never in a million years tell a Deaf parent that their deaf child should be implanted and immersed in the hearing world.  And so I’m not going to feel bad about our choice to bring Liam into our hearing community.  I understand all the reasons people would be worried about CI’s and the risks that they may not work, but I’ve watched his progress for the past five years and I know we made the right choice.  When I think back to those kids in the cafeteria at Deaf camp I know they were fine.  They’d had their community, they were confident, self-assured and intelligent.  Liam would have been fine if that had been him.  But, all those years ago, my heart recognized the chasm between those kids at Deaf camp and my peers at speech camp.  We lived in two separate worlds; their world was not better or worse than mine, and given the right tools (sign language or an interpreter) we could bridge the gap.  But by and large the ins and outs of these two worlds remained separate.  

For Liam the choice to participate solely in the Deaf community would have removed him from our community, from our friends and family, from the people we interact with daily.  And as his mom, I wasn’t ok with that.  Many years ago, before technology and organizations designed to help hearing parents learn ASL, many hearing parents of deaf children had no choice but to give up their kids, allowing them to be raised in boarding schools for the Deaf, or with other Deaf families.  I cannot imagine that excruciatingly difficult decision and I am thankful to live in an age where I didn’t have to make it.  I’m not trying to “fix” Liam but I am giving him access to the world I know and love; the same way a Deaf parent who exclusively uses ASL is doing for their child.

********

At the airport on the way home I struck up a conversation with two teachers of the Deaf who had attended AG Bell.  They asked me what I thought, as a parent of a deaf child, of the protesters.  I explained some of my thoughts without going into all of it.  And when these two teachers shared their frustration on behalf of the parents of their students, when they started to make the protestors out to be the bad guys I was hesitant to join in.  I truly can understand their perspective.  AND I am truly confident in ours.  And I suppose that is what peace with your decision feels like.  I didn’t need to fight back, to defend our choices.  But I also didn’t need to follow theirs.  We’d made the right choice for our family, even if at the time it didn’t feel like a decision so much as the next right step, and I had no regrets about it.

Last Day

Today marks Liam’s last day of summer school.  I’m excited to have four weeks ahead of us to finish tackling our Summer Fun List and go back to lazy mornings that don’t involve catching a 7:30 bus.

But I’m anxious today, my stomach jumpy like I drank too much coffee.  Today marks Liam’s last day at Child’s Voice, the only school he’s known, the school which, at the risk of sounding overdramatic, changed his life.  

Liam on his very first day at Child's Voice

Liam has been attending this miracle of a school in Wood Dale, IL since January of 2012.  He’s been working with its therapists for even longer.  Way back when we started going two mornings a week to their group therapy program I’d drive the 30 minutes to school, stay working on things or chatting with other parents, attending his speech therapy, and then drive him the 30 minutes home in time for lunch and naps.  Sometimes, after Ryann was born, my dad would take him.  Or I would drop him off and my dad would pick him up.  My dad always liked picking him up on Wednesdays because he got to attend music class with him.  Liam held a low level of distain for music class, refusing to participate for the most part, which I think my dad thought was funny.  

I remember feeling so conflicted when Liam started that two day a week class at 19 months.  He was so little and I was leaving him in a classroom with teachers and other kids neither of us knew yet.  He wasn’t talking much, he’d only been hearing for maybe 6 or 7 months at that point.  I knew this was what he needed, to be in a program that was going to help him learn to listen and speak, but I kind of hated that this was what he needed.  I wished he didn’t need so much to find his voice.  

And then he started to soar.  At one and a half years old he was able to stand in line to wash his hands before snack.  He knew the routines of the day and participated in them willingly.  He could follow directions and play well with others.  He was listening and starting to speak.  School was doing it’s job.  I got my first taste of the parent side of parent/teacher conferences and before I knew it 18 months had passed and Liam was ready for “big school.”

Liam on his very first day of "big school."

Taking him to school a few hours twice a week (while I stayed in the building) was nothing compared to the heart wrenching act of faith it took to send my three year old on a bus with a stranger to school all day, five days a week .  I send my heart to that school each day and each day it came back home, a little more verbal and a little more independent.  He was finding his voice.

another first day of school.  he was so excited about that backpack with wheels

One cochlear implant surgery and three years of “big school" later, Liam was done.  His teachers, Tommy and I all deemed him “ready for regular mainstream school.”  At his IEP meeting this past spring you could sense the pride and almost warning in the voices of his Child’s Voice teachers as they described Liam’s progress.  He had done about as well as any kid could at this school, so don’t mess up our success story.

In May Liam participated in the graduation ceremony for Child’s Voice.  While I usually tend to think pre-school/kindergarten graduations are kind of silly and unnecessary, I will admit that for Liam this graduation meant something.  When he walked in the doors of Child’s Voice four and a half years ago he spoke only a handful of words.  At the graduation ceremony he confidently walked up to a podium and delivered a 48 second speech to a auditorium full of people.  He had found his voice.  It was beautiful.

Liam at graduation.  Cap and gown and all.

In just under a month Liam will start first grade at the elementary school just a few blocks away from our house.  This is a big deal, a turning point for him.  It’s the end goal we had when he started at Child’s Voice all those years ago: to go to the mainstream school with all the regular mainstream kids.  To be able to do what they do.

When you parent a kid with any kind of disability or differing ability there is always a fine line you walk when it comes to others’ expectations of him or her.  I never wanted anyone to underestimate Liam because of his hearing loss.  He isn’t dumb, or incapable.  He doesn’t need you to yell or speak in simple sentences to him.  But, I also don’t want anyone to overestimate his abilities.  He still has hearing loss and hearing aids and cochlear implants don’t work like eyeglasses.  Liam still has to work twice as hard to hear and he still may need some modifications, particularly in the classroom.  It was important to me that people recognized the both/and of his hearing loss.  He can do anything AND he has to work harder to do it.  

At Child’s Voice I didn’t have to worry if people knew how to walk this line.  They set the bar high for Liam AND they gave him all the extra tools he would need to achieve it. 

But even more then that, they loved him well during the process.  I wrote a letter to the staff last month to share our appreciation for all they’ve done for Liam.  In it I said, 

“At the age of three Liam started spending as many of his waking hours with you all as with us.  In so many ways you have helped to raise him these past few years.  And for this we are so incredibly thankful.”

He was taught well at that school but more importantly he was loved well.  This afternoon he will walk out the doors as a student for the last time.  He’s ready.  We all are.  

Today is a good day and a sad day.  We are ready to head into the next chapter but we recognize that we are closing another significant chapter.  Liam’s voice is ready to take on the world and today I’m feeling extra grateful for the place that helped him find it.

What Happened in Colorado

Liam and I had to fortunate opportunity to attend the A.G. Bell convention in Denver, Colorado this past weekend.  AG Bell is an association for the deaf and hard of hearing and their convention draws mostly educators of the deaf and hard of hearing, but also members of the community and their parents.  I got to go with Med-el, the company that makes Liam’s cochlear implant.  This is my second year as a part of Med-el’s patient support team, where I travel occasionally to connect with prospective CI candidates and parents of pediatric candidates, sharing our story of Liam’s cochlear implant.  For the convention Liam and I were presenting as part of a panel on “Self-Advocacy through the Ages” talking about how Liam advocates for himself with regards to his hearing loss.  

It was three and a half days with my guy and our Med-el family.  As we made our way through the Denver airport on our return trip Liam kept saying, “I’m going to miss Colorado so much.”  I don’t think he necessarily meant the state of CO, which is lovely, but rather the experience he had there.  He’s six so he doesn’t understand that the people we hung out with for three and a half days don’t all live in that space and time forever.  He didn’t understand that the Med-el booth we worked in was torn down and packed away mere moments after we finished our shift on Sunday morning.  In his mind if he were to board a plane tomorrow and fly back to Colorado everything and everyone would be just as he left it.  

To him Colorado equals Mom saying yes to pretty much everything.  It means treats throughout the day and multiple trips to “It’s Sugar,” the candy store down the street from our hotel.  Colorado is the place where he got to be “one of the guys” with Jeff and Joel, Max and Garret.  Where Max and Garret, two older boys with cochlear implants, played catch for hours on end and gave him a million piggy back rides.  Colorado is where he could go from booth to booth collecting all the free goodies his arms could hold.  Colorado is the place where he and mom got to have a lot of fun together, just the two of us.

To me Colorado now equals three days with people who spoke the same language, the language of hearing loss and cochlear implants, electrode array and MRI capability.  It’s the place where I was reminded again and again just how lucky we are that Liam is doing so well with his implant.  It was the place where Garrett and Max and Rachel, three teens with CI’s gave me a glimpse of what will be possible for Liam in just 7 years.  It was where I got to connect with the people who know, who know the journey we’ve been on and who can tell me what’s ahead.

I’ve gotten so used to Liam’s hearing loss that I almost forget he’s deaf.  (I should qualify this by saying I “forget” his hearing loss in the same way that I can “forget” my dad is dead, which is to say that I never for a moment actually forget.   It’s just become the normal in a way that I’m not continually reminded of it’s reality.)  We’re out of the woods, so to speak, in so many ways.  Liam is listening and speaking.  Clearly.  He’s reading and writing and carrying on full conversations with adults and his peers.  This is the goal when you are first diagnosed with hearing loss.  This is the thing you are not necessarily guaranteed.  

And so it wasn’t until I was with a group of people that were a bit further ahead on the path that I realized how much I still needed to be reminded of what’s in store.  To talk to those teens, watch them interact with each other and the adults on the trip, witness their composure and their self-assuredness.  Oh man, did my mama heart need it.  They are teens, doing the normal teen thing, with friends and confidence and humor and just all around awesomeness.  Which, this side of the journey, is all I hope for Liam.

I sent an email to one of the boys, one who had been particularly kind to Liam during our stay.   I told him that we really know any older kids with cochlear implants and that I was so thankful Liam now had a role model in him.  I remember hearing a parent of another CI wearer talk about a turning point moment in their life.  Like Liam her son went to a deaf school where all of his peers wore implants and hearing aids.  But also like Liam, there were not really any older children and adult users in his life.  One day she realized that he thought he would no longer be deaf or have to wear CI’s when he was an adult because all the adults he knew were hearing.  It was in that moment that she realized she needed some role models in his life asap.

I’m thankful to be able to create that for Liam.  I’m thankful for Max and Garrett and Rachel who give Liam a peek into middle school and high school life.  And I’m grateful for Mr. Chuckie and Mr. Jeff who show him that CI wearers can be police officers or creative directors.  In Colorado we both got a peek at what’s possible still and let me tell you, it’s pretty exciting.

When the Best Thing and the Hard Thing are the Same

Monster has two ears again.  His implant was activated last week with little fanfare and stress.  He did great at the audiologist, cooperating fully with the mapping and all the things that went along with it.  He seemed proud of his new ears, showing them off to friends and family.  He asked to call Aunt Ry that first day so that she could “see new ears!”  I was so proud of my little man, breathing a little easier with that hurdle cleared.

And then the hard part came.

Part of his activation process is to spend some time each day using only the implant.  His hearing aid must be turned off for one hour each day to allow his brain to get acclimated with the implant.  Initially the cochlear implant makes everything sound strange.  The best explanation I’ve been given is that everything sounds kind of squeaky, like Minnie Mouse and differentiation between voices or different types of noises is all but impossible at first.  Over time his brain will be retrained to understand the electronic impulses but at first everything sounds like the inside of Minnie Mouse’ head.  Monster does not like this one little bit.

The first day I turned his hearing aid off while he was outside playing.  Immediately agitated, Monster kept crying, “turn back on, turn back on” while reaching for both devices trying desperately to return his hearing to normal.  My mom distracted him with a lollypop and he calmed down.  He asked for his aid to be turned back on intermittently throughout the next 40 minutes but overall he acquiesced to hearing with just his implant.  Unfortunately he did not appear to understand anything that was said during that first hour.   It was unsettling: the blank looks whenever we asked him a question.  Eventually we turned the hearing aid back on and let the tension of those 40 minutes settle, assuming it would be easier tomorrow.

It wasn’t.

Day two I put both devices into his ears after naps but never turned the hearing aid on in the first place.  It was an epic failure on my part.  I did it this way because I thought it would be smoother, rather than taking away the comfort of his “regular hearing” I thought it would be easier to not introduce it at all after naps.  In retrospect I think he thought this mode of hearing was permanent and everything had changed forever. 

At any rate he cried and cried devastated tears.  This time he didn’t even ask for his hearing aid to be turned on.  He just grieved.  I held my boy as he sobbed knowing he was being thrown unto an uncomfortable situation where he felt little control, knowing he was unhappy and frustrated and didn’t have the language to communicate or understand why.  Knowing he must be scared and confused and more than a little freaked by how different everything sounded.  I wanted desperately to take it all away, but I didn’t.

I don’t know what was harder, watching him cry and mourn and wrestle with these big feelings or knowing there was an easy fix and choosing not to use it.

Because that’s the crux of it, isn’t it?  I could have turned his hearing aid on, problem solved.  It would have made everything better, lightened the load for my sweet boy who has already borne so much this year.  It was all I wanted to do really.  Just turn the damn hearing aid back on and make it better.

But, though it may have been better, it wasn’t best.  I’m realizing that parenting requires a lot of “doing difficult things.”  Some of these hard things are flung upon us, matters in which we have no choice but to put our head down and one foot in front of the next, each step more unbearable then the last because there are no easier options.  Those situations are hard, but in a way the lack of choice helps.  There is only one way to go, difficult as it may be, and so you go.

Sometimes though as parents we must choose to do the hard things even in the face of easier options.  Because the hard thing is the best thing.  It is the thing that will shape our kids, define their character, enable them to survive on their own.  Painful and torturous as it may be to send our kids into the fire alone, it is there where they are refined.  Keeping them safe is more dangerous in the long run.

And I remember my Jesus who chose the hard path time and again.  Who could turn water into wine and fish into more fish but chose to fast in the wilderness for forty days because it was the right, hard thing to do.  And I think of his Father who sent him into the world fully human to suffer not just death, but a life where he would be misunderstood and mistreated.  He chose to put Jesus into a life of hard things because that was the best thing.

And I realize Monster and I, we’re in good company.

On Not Being Thankful Yet

A video went viral recently.  In it a hearing-impaired baby boy has his cochlear implant device turned on for the first time.  He hears his mother’s voice and immediately smiles, his whole body reacting in pure joy.  It is a heartwarming moment at its core and it’s no wonder that the video has been shared so many times.

When I saw it I felt a strange sense of frustration and annoyance.

Last week Monster received the same implant as the baby in the video.  His device hasn’t been turned on yet so for now we’re just in that middle place, post-op but pre-new hearing.

I saw this video a day or two after Monster’s surgery.  The frustration lingered, turning into anger.  It took me a while to put my finger on why exactly I felt this way.  It’s a joyful video, the way this baby turned to his mother’s voice, the smile that emerged as she continued talking.  There was nothing in this that should elicit the kind of dull rage I found myself experiencing.

And then, as I wrestled Toots into her clothes one morning about a week and a half post surgery, I realized the source of my bitterness.  I was frustrated because that video made me feel like I had to celebrate a decision I was still grieving.  I wasn’t ready to celebrate this miracle of technology that allowed my son to hear.  I wasn’t ready to be thankful for it.  I was still mourning the reality that my son needed this technology to hear in the first place.  I was still digesting the fact that the hearing aids were no longer enough.  I was still grieving the choices I didn’t want to have to make.

While well-meaning people on Facebook cheered and celebrated the miracle technology that allowed a nine-month-old they’ve never met to hear his mother’s voice, I was mourning because my three year old couldn’t hear my voice well enough without it.  And every share and “oh wow” comment made me feel guilty for being so ungrateful.

****

I feel for the device as I wash Monster’s hair now.  The bathtub is the only place he’ll allow anyone to touch the strange, dense bump protruding from his head.  It’s circular, the size of a quarter only much, much thicker.  It’s hard and it hurts my stomach to touch it.  I don’t think it hurts him, but for some reason it pains me, this intruder budging out above his ear, threatening to burst through the skin.

There is a foreign object in my son’s head.  And I’m not ready to be thankful for it yet.

****

In the aftermath of the surgery I found myself steeling for people’s inquiries about the implant.  Inevitably someone would bring up the YouTube video and marvel about how wonderful it all was.  Usually I put on a happy face and agreed that yes it was wonderful.  Yes we were lucky. 

There is a foreign object in my son’s head and I’m not ready to be thankful for it yet.

****

My brother and sister were asking about the implant, how it works, what it is.  At one point I explained that Monster had a magnet in his head now and my brother perked up.

“There’s a magnet in his head?  Oh man, now he can never use a compass.  What if he wanted to be an explorer?  Wait.  There’s a magnet in his head.  Can we test it?  Will stuff stick to his head?”

I told him that when Monster was nine and wanted to show off for his friends he could test it, but I wasn’t willing to get out the fridge magnets and see what happened.  Outwardly I laughed with my siblings, knowing that they love my kid and they mean no harm.  Inwardly though I wondered if that would be Monster’s party trick.  Would he be the kid who could stick stuff to his head?   I pictured him at a sleepover, laughing with his friends as they placed magnetic objects on his head.  I couldn’t decide if that image made me laugh or feel profoundly sad…

There is a foreign object in my son’s head and I’m not ready to be thankful for it yet.

****

I know one day I will be thankful.  One day I will feel right about this decision.  I will celebrate the miracle technology that helps my son hear his mother’s voice.  I know this because one day I was thankful for his hearing aids.  One day they were just a normal part of him and he looked a little strange without them. 

But I’m just not there yet.

The “buck up and carry on” voice reminds me how good we have it.  That in the grand scheme of things this is really very small.  He is alive and well.  He will overcome the challenges his hearing loss throws at him.  There are far, far worse things he could be dealing with.  I nod quietly with this voice and try to be thankful.  Try to keep perspective.

But I’m also holding space for the soft, tender part of my heart that breaks still.   I’m giving it room to grieve and lament, to feel a little ill when my fingers run over the foreign intruder just above my son’s left ear.  I know there will be a “one day.”  And I know that it’s not today.  This season is for heartache and sorrow and I’m going to hold space for it.  It won’t be forever but it is for right now. 

There is a foreign object in my son’s head and I’m not ready to be thankful for it yet.

And that’s ok.

On Advocating for your Kids and Not Being That Parent

Currently two aspects of my personality are warring each other.  On one hand there is an incredibly large part of my persona that doesn’t want to make a fuss.  I don’t want to be difficult, don’t want people to have to spend a lot of energy accommodating me, nor do I want to be perceived as anything short of “go with the flow.”  I’m a fairly adaptable person, and would much rather be the one adjusting to circumstances than force others to adjust around me.  The thought of someone thinking I’m difficult or hard to please makes me all hivey and twitchy.

I’m trying very hard not to raise selfish, difficult, “please accommodate me” a-holes.  I want them to be able to work around others’ needs and preferences.  I want them to be able to handle change and hiccups with grace and consideration for others.  However, three year olds are not particularly great at this, especially three year olds as adverse to change as my Monster.

Therein lies the problem.  Currently, this core value of being “easy going” directly conflicts with my other core value of advocating for my kids.  I found myself in the principal’s office of Monster’s school asking if it would be at all possible for him to stay with the same teacher for summer school.  He started school with only two weeks left in the year and his transition has been, shall we say, not great.  (See also: awful, frustrating, and traumatizing for everyone involved.)  The one bright spot has been his attachment to his sweet teacher, Ms. Kim.  He talks about Ms. Kim at home, finds comfort from her alone, and can be seen holding her hand during the day.  In short, Ms. Kim may well be the only thing Monster likes about school.

I completely understand that things will have to change and my kid will need to learn to adjust.  I want him to learn to adjust, believe me.  It would make my life a heck of a lot easier.  But this transition has been so difficult and he’s had to deal with so much change already, I’m a little concerned losing Ms. Kim will make his head explode. 

So there I was in the principal’s office, my mama bear instincts asking for someone to accommodate us, to plan around us, while my “be as undifficult as possible at any cost” side nervously sweated and paced, so uncomfortable with the conversation.  I stood their hating this, reading every look on the principal’s face as proof that I had been deemed “that mom” and would forever more be placed in the
“demanding parent” category.  Yet I persevered because it’s my kid and he needs me to advocate for him.

Where do you draw the line?  How much advocating do you do, and how much do you let your kid learn to adjust?  How do you keep from being a “troublesome mom” without neglecting your kid?  I know at my core that speaking up for Monster is much more important than what anyone thinks of me.  And yet I still die inside imagining the staff complaining about me in the teacher’s lounge!  Has anyone else struggled with this?  How did you decide when to speak up and when not to?