Tiny Miracle? Hoping the Other Shoe Doesn’t Fall.

For many months I have agonized over the decision to allow my daughter to try a controversial drug to help her manage the pain in her KT leg.

We were told that it would take time to see results.  Typically, most patients feel relief 4-6 weeks after starting the medication. We were told that this is not a miracle drug.  They weren’t even sure if she was receiving the correct dosage; or if the medication would even be effective at all.

We were very skeptical about this new and expensive (as it is not covered by insurance)  journey, but we felt we needed to try.  We have (unsuccessfully) tried everything else to manage her pain.  We have tried other interventions, medications, surgical procedures, reiki, physical therapy, etc. All to no avail.  I often wonder if some of these other interventions caused more harm than good. In some instances I rejected certain proposed interventions, such as low dose chemotherapy.

Currently are just under 2 weeks into taking the new medication.  Words cannot express how I feel about how this drug is changing my daughter’s life, for the better.

FEAR – fear is the first emotion I am experiencing.  I know, weird, right?

Let me explain. I am fearful that the medication will stop working.  I am fearful that she is enjoying her new-found freedom just a little too much and may be pushing herself too hard to have fun. I am scared she may crash and burn.

But, OH MY JOY! <– look! A good emotion!

HAPPINESS for her, my heart and my ears:

  • “WOW! Mom, I was actually running today. With my friends!  It felt so good to not have to walk, or have my friends wait for me to catch up to them. “
  • “Now I can have FUN!”
  • I asked her why was she limping “Because my whole body hurts from running yesterday.  It’s not just my usual leg pain this time.  But its okay, it feels so good because I am using muscles I haven’t been able to use in a long time.”
  • “I mean, my leg hurts a little, but Mom, just a little.  If I tried to do all this running around last month, I would be dying of pain.  But look, yes, I mean, it is swollen, but it doesn’t hurt as much as it usually does.”
  • “I can’t believe I did all this running and the pain isn’t that bad.  I mean, most days I wake up with this kind of pain and my day just gets worse.  But now I know what it is supposed to feel like to wake up with no pain.”
  • “I can feel how out of shape I have become because everything hurts, but now my body is working again!”
  • “It’s miracle that I can do these things again!

Anyone living with Klippel-Trenaunay Syndrome, or with any form of chronic pain can attest that on most days, a few hours of fun usually results in days of pain and eventual recovery.  It seems that there is always a heavy (painful) price to pay whenever she seems to have fun.  My child has been experiencing that horribleness. But this new medication seems to be turning the tide for her and offering new hope.

I am trying to let go of the fear of the other shoe falling.

I need to embrace this moment in her life.  Her moment of pain-free joy.  I love the smile on her face.  I love watching her flex her new-found muscles, and freedom.  I love my happy (and for the moment, pain-free) girl.

I pray that this wonder drug will continue to help improve the quality of her life.


When You Find the Right Pediatrician, it’s Like Magic

I fired my children’s first pediatrician when they were 13 months old.  The pediatrician was fantastic – so long as you had a healthy, full term baby.  I did not know this about him when I initially entrusted him to care for my premature babies.  Both he and his wife (who worked with him) were very much laid back in their care.  I found them both to be very condescending whenever I would bring up issues and concerns.  I think they truly did  enjoy watching babies grow, but they didn’t seem to know or want to help those babies that needed help or extra care.

The pediatrician’s wife was like the high priestess of La Leche League – and very much of the “shame on you if you don’t breastfeed your babies” mindset. Don’t get me wrong, I wanted nothing more than to breastfeed my dumplings, but after 6 weeks in the NICU, we never bonded in that way.  My breast pump and I were inseparable for the first 10 weeks of my children’s lives. Every 3 hours I fed one twin, then other twin and then I pumped.  It was like feeding tr, every 3 hours, every day, for 10 weeks.  I pumped until the twins were consuming more than what I could pump. It did not make sense for me to continue pumping if the amount I was pumping was less than half of the amount of fortified formula that was added (and needed to sustain them).   As a side note, I was also admonished for continuing to work despite having premature twins at home. It wasn’t like she was dipping into her pockets to pay my mortgage. But I digress.

The 1st pediatrician and I had an epic falling out after he misdiagnosed my son, for the 2nd time with a major illness.  The pediatrician first misdiagnosed my son’s RSV (Respiratory Syncytial Virus) when he was 9 months old.  Two months later, he misdiagnosed my son’s Kawasaki Disease.  Years later, I would realize that he also missed the sleep apnea diagnosis too.  And we won’t even discuss my daughter’s vascular malformation.

I was beyond furious that fateful day.  I was distraught.  I was angry!  This man was endangering the wellbeing and lives of my children!

After bitter words were exchanged in his office, I stormed out of his office (with my sick boy in my arms) and drove to straight to the hospital where my children were born (prematurely) and well cared for in their NICU.

Thinking about it now, I must’ve been quite the sight leaving that office. I remember balancing two, year old toddlers – one child incredibly ill in my arms and the other bubbly and cooing in her car seat. My son was lethargic from the relentless high fever that raged in his body for days. He was also precariously dehydrated. But here I was trying to balance the twins, a diaper bag, my purse and my uncontainable rage.

Upon entering the emergency room, the pediatric hospitalist seemed to be expecting us. Without examining him, and without hesitation, she immediately announced “It is so very clear to see that his child has all the classic symptoms of Kawasaki Disease.  He needs a transfusion. STAT!”  I was amazed!  How did she know?  But there was no time for questions.  She quickly pointed out the critical symptoms he was clearly experiencing.  He was rushed to the pediatric unit and given a lifesaving IVIG transfusion.

Once my boy was stable, I toured the hospital and visited all the specialists we had seen up until that point. I started with my high risk specialist who carefully monitored me during the first trimester, and worked my way back to the NICU and took a poll.  I was looking for recommendations for an excellent pediatrician.  At first, everyone was reluctant to provide a referral (it’s against hospital policy), but after hearing how the first pediatrician misdiagnosed my son with a 2nd major illness in less than 2 months, they were willing to bend the rules and start coughing up some names.

I was down to two solid contenders.  I called both offices to schedule interviews.  I was no longer willing to just take someone’s word.  I needed to interview the doctor, I had some serious questions!  Most important, I needed to feel comfortable with the doctor whom I am trusting to help me keep my children healthy.  It turned out that doctor #2 did not accept any form of health insurance.  He was strictly private pay.  Judging by the fact that this was my son’s 2nd hospitalization in two months, choosing doctor #2 would have been the fast track to the poorhouse.

I was worried that doctor #1 might be of the same mindset as my newly fired pediatrician.  I was nervous to meet him.  I was asked to schedule an appointment to meet him after my son was discharged from the hospital.  I was not comfortable with that directive, but I had no choice.  In the meantime, I was asked to have the fired pediatrician send my children’s medical files to this new doctor for review.

The following morning, a doctor entered my son’s room with a broad smile and cheerful hello.  He walked in and asked me “So how is my boy doing?”  as he started perusing my son’s medical chart.  I stammered “Not well, he is still running a fever of 105, he is so very weak and the transfusion doesn’t seem to be working… I’m sorry, but who are you?”

He put the chart down and smiled and said “I’m your new pediatrician. I came by to say hello and meet my new boy!  I would like to see you the day after our boy gets home.  Don’t you worry darling, you are in good hands.  He’s going to be fine.  Now get some rest and I will see you in a few days.”

I was in shock!  This doctor made it a point to come to the hospital, find us, introduce himself and welcome us.  Right at that moment, I felt like I had just hit the jackpot, at last, a caring doctor! He was like a male version of Mary Poppins.  He made everything better!

That introduction happened in early 2004.  After all these years, he continues to make everything better.  He is a great doctor who cares very deeply for his patients.  He has helped us navigate all the illnesses, syndromes and diseases my children have been diagnosed with.  And when he doesn’t have all the answers, he knows who to send us to help us out.  But most importantly, he listens!

…all the better to hear you, dear…

Its been 3 years since our son was diagnosed with sudden onset sensorineural hearing loss and tinnitus.  Its been 2.5 years since we acquired his hearing aid that serves as a tinnitus masker.

The tinnitus masker was a life saver for him.  In the beginning he wore it all the time.  He was not timid or embarrassed being seen with it.  He knew it helped and he didn’t care what people thought.  Very few people commented on it, in fact.  Like everything else, over time, he grew accustomed to the omnipresent ringing in his ear and learned how to block the sound and prevent it from affecting him.  His annual checkups have been uneventful, the hearing loss unchanged.  Even the evaluation he had this past April.  One time he thought he was hearing the tinnitus in his unaffected ear, but it was unfounded.

What began as an “observation” on his part, gradually, but steadily became intense concern.  He merely commented that he thought the frequency in his tinnitus had changed.  Every day he was more vocal about how distracting the ringing was at night and how it interfered with his sleep.  By the end of the month, he was now asking me to please make an appointment to get his hearing re-tested by his audiologist.  He had tried in vain to get the hearing aid to help, but the frequency was so disparate that the hearing aid was in effect, useless.  It would need to be re-calibrated to match the new frequency in his head.

My son has been super-mature and super-responsible with this hearing aid since the day he got it.  He had never misplaced it.  At all times, he always knew where it was (even if it didn’t belong somewhere) he always knew where it was.  Up until a day or two before his appointment, he was still trying to use it at night.

About one hour before his scheduled appointment, he called me at work to ask me if I had seen his hearing aid.  Naturally I was upset.  How could he not know where it was? He ALWAYS knew where it was!  He and his dad looked for the hearing aid relentlessly.  All to no avail. **POOF**     **GONE**

The audiologist evaluated him without the hearing aid and confirmed his suspicion.  The frequency of the ringing in his ear did change, but so did his hearing.  Three short months ago, he fell squarely into the category of having moderate hearing loss.  Now his hearing loss fell into the moderate-to-severe spectrum.  I won’t lie.  I cried.  A lot.

So now we are waiting for the replacement hearing aid.  My son and I have had intense conversations about what his life is like with hearing loss and tinnitus.  It is hard for someone who doesn’t live with hearing loss or tinnitus to understand.  Conversely, I can only imagine that it is difficult to explain if it is something that you have become so accustomed to that you hardly recognize it for what it is.

We have been sparring about his ability/inability to hear properly.  Because my son has adapted to the changes in his hearing, he keeps telling me he can hear just fine.  In fact, he has told me that *I* have the hearing problem, because I am not listening to him.

In an effort to understand how he hears, I took a deep dive into educating myself about sensorineural hearing loss and tinnitus.  I scoured the internet to gain knowledge. I think I finally learned how to decipher the hieroglyphics of the audiogram.  I came across a wonderful website, http://www.hear-it.org where you can hear what it is like to have hearing deficits.  Impressions of Hearing Loss

Thinking that I struck gold, I asked him to listen to the various sound files of hearing loss and tinnitus to see which matched his.  He listened with interest, but in the end said that none of the samples were comparable.  He asked why was I bothering to look at websites like this.  I explained that I love him and I want to help him.  But first I want to understand what he is experiencing.  If I can better understand what, and how he hears, maybe I can be a better advocate for him.

Sensorineural Hearing Loss and Tinnitus – Our Story

One Saturday night, when he was 12 years old, my son was at a sleepover at a friend’s house.  He started serial texting me around 11pm that night because there was a ringing in his ear that was distracting him and keeping him from having fun.  Puzzled, I switched on my medical-to-mommy remedy brain and came up empty.  He didn’t have pain, so acetaminophen would not help, nor would ibuprofen.  I was at a loss.  My best offer was for me to pick him up from the sleepover, but that was quickly declined. But the texting continued as his friends were finally falling asleep and the room grew quieter, the noise grew louder.

When I picked him up Sunday morning he said he had a lot of fun, except for the ringing in his ear.  Again, I didn’t know what to do.  I suggested he take a shower and get cleaned up from his sleepover, after all 12 year old boys needs showers, like all the time, no joke.

I heard him get into the shower and I started washing dishes when all of a sudden I heard him screaming for me, with terror and panic in his voice.  I feared the worst as I raced to the bathroom half expecting to see blood, or worse.  He was screaming, quite hysterically that he could not hear out of his right ear.  When I finally got him to calm down, he explained that when he turned his left ear to the shower, he could hear the shower clearly.  But when he turned his right ear (the ear that was making the ringing sound) toward the shower, he could only hear it distant and muffled.

We are so lucky to have a pediatrician who answers calls 7 days a week.  I was able to speak with the chief pediatrician who happened to be on call that weekend.  He surmised that it was probably an ear infection or built up wax giving him trouble.  I assured him it was not an ear infection.  He chuckled and ask how could I be so sure.  I told him “I checked his ear with an otoscope that I own.  Don’t ask how I acquired it, but just know it’s not an ear infection. And I don’t see too much wax either.” My pediatrician must think I am crazy, but he takes me seriously enough that he scheduled my son to be his first patient of the day Monday morning.

Monday morning I got my son ready for his appointment and made him breakfast.  As I was getting dressed to go to work (hubby was taking our son to the appointment) I heard my son vomiting up breakfast.  Panic started to bubble in my chest.  My brain started screaming “Heavens forbid, but this is a sign of a brain tumor!”  Stifling my panic, I calmed him down, helped get him cleaned up and then headed to work.  I called the pediatrician before my son got there and reported the incident.

The pediatrician looked him over and gave my husband strict instructions to go directly to an ENT.  Within 2 hours my son was prescribed a short course of steroids and was told to return in 10 days to re-evaluate his hearing.

Ten days passed with no change.  I took my son to the 2nd ENT appointment.  The ENT looked at the results of the audiogram and remarked “Oh, it’s a shame that he has failed his hearing test again.  We will need an MRI of his brain.”

“WHOA! What?? What do you mean he failed his hearing test? AGAIN?? What do you mean again? I didn’t know he failed the first test?  And an MRI? For what, exactly??”  She assured me that I should not panic [too late, lady].  The MRI was just to make sure that ‘things were in place.’  My brain was screaming “She is saying she wants to make sure he doesn’t have a brain tumor!”

I took a copy of his audiogram and tried to make heads or tails out of the triangles, “X”‘s and circles and how everything seemed to be on an even plane, except for the last column.  The last column took a serious nose dive.  It was the first time I read the words: Sensorineural Hearing Loss and Tinnitus.

The MRI revealed that everything was in place and thank goodness – no brain tumor.  But the MRI did not give us a clue as to why, out of the blue, he would suffer hearing loss and tinnitus.  The ENT was happy with the negative MRI results and scheduled us for a follow up visit…in one year.  WHAT?!?! In one year?? How about finding out why this happened?  What else could happen?  How do we protect the remaining hearing he does have?  So many questions….so few answers.

I immediately reached out to several friends and doctors and I was referred to an incredible audiologist who took the time to help me understand what sensorineural hearing loss and tinnitus were.

She explained that while a majority of his hearing was within normal limits and intact, he did suffer from high frequency hearing loss.  She further explained that the hearing loss and tinnitus is permanent, and could potentially, and typically does worsen over time.  The inability to hear high frequency sounds prevents him from distinguishing between certain speech sounds such as F, S, TH and SH.  Example: without facing him, he may not be able to determine if someone were to say fifty or sixty.

At her urging and recommendation, we sought the advice of a rheumatologist and endocrinologist. We connected with a fantastic Otolaryngologist and Professor of Molecular Medicine who ended up inviting us to partake in her genetic research to try to find the cause and potentially, a cure for sudden hearing loss in otherwise healthy children.

The months following the sudden onset of the tinnitus was the most challenging.  The ringing in his ears at night was simply awful.  He tried with all his might to overcome the overwhelming sound in his ear, but it was too much for a young boy to manage.  The most heartbreaking moment was when, in the middle of a sleepless and frustrating night, he sobbed how he would never know what it was like to have quiet in his head.  For the rest of his life…

The relentless high pitched ringing was wrecking his boy.  He slipped into a depression and his anxiety at night was overwhelming all of us, most of all, him.  Again, through the patience and goodness of practitioners who listen and care, his audiologist recommended we get him a hearing aid with a tinnitus masker.  The hearing aid is not used to amplify sound.  Rather, it generates a sound that nearly matches the frequency of the tinnitus.  In theory, the sound of the hearing aid is soothing and is supposed to cancel out the irritating sound of the tinnitus.

The hearing aid helped him a lot in those early days.  These days he does not use it as much, as he became accustomed to the ringing and learned how to drown it out.

Until recently………..

Images courtesy of https://www.audicus.com/hearing-loss/signs-and-types/

Mom, I Can’t Sleep

It’s funny how you inherit your child’s sleeping problems.

Through no fault of their own, I have inherited the inability to fall asleep due to my children’s collection of medical issues: chronic obstructive sleep apnea, painsomnia, regular insomnia due to headaches, fluctuations in tinnitus frequencies, anxiety and the run-of-the-mill sleep challenges like thunderstorms, stomach-aches and nightmares.

In the very beginning I knew there was something off with my boy’s sleep patterns. While they were in utero, I would feel my daughter swishing and twirling around in my belly, like a little mermaid all day long. And like a good little girl, around 8pm or so, she would settle down and I assumed she would sleep. There would be an occasional stretch, but the top portion of my burgeoning belly would be calm as her activity was low.

At around 10pm, my night owl would emerge from his slumber and he would be ready to rumble. Every night without fail, twin B, my boy, would open up “Club Utero” and kick up a storm. It felt like he was at a rave (with maybe 3 other babies) thrashing about in the lower part of my abdomen until the wee hours of the morning. He would abuse my bladder and whatever other internal organs are located in that area. I knew he would be my night watchman.

After 4 weeks in NICU my little mermaid came home and fell into a sweet sleep pattern.  After 6 weeks in NICU, I thought my son’s clock was re-adjusted from the NICU schedule.  He too settled into a decent sleep schedule.  I don’t mean to make it sound like they slept the night.  Trust me – hubby and I struggled with feeding the beasts every 3 hours.  We tried to keep them in sync.  It just seemed easier to have them both up at the same time.  But most nights we slept in 45 minute intervals.  Typically, one baby would be fed, and just as we finished feeding, cleaned up the bottles, changed their diaper and put our heads to rest, 45 minutes later, baby #2 was ready to eat.  And then 45 minutes after that, boobs needed to be pumped, expressed milk measured, labeled and the breast pump parts steralized.  But at least it was a somewhat reliable schedule.

At around 7 months old my boy started to suffer from what I like to call Freddy Kruger nightmares.  He would scream blood curling screams in his sleep for no obvious reason. He sounded as if he was being horrible tortured and harmed.  We would rush into his room where we would find him with his eyes closed, body stiff like a board and screaming.  Sometimes there were tears, sometimes none.  He would howl and wail upwards of 2 hours.  We would try to stimulate him awake: sing to him, gingerly put water on his hands and feet; play his favorite video, Elmo’s World.  Some nights his crying would slowly get softer and he would remain asleep.  Some nights he would finally wake up and just be exhausted after expending so much energy.  Those nights were brutal.

Each night we would settle them down and pray for uninterrupted sleep.  But every night, until he was about 16 months old, it was the same thing.

His pediatrician at the time did not believe us.  I would tell him about these episodes and he would just downplay it and say patronizing things like “You are a mom of twins, you are not supposed to sleep.”

After 2 more misdiagnosed illnesses RSV and Kawasaki Disease, both that required hospitalization and resulted in long-term ill-health effects, by the time the twins turned 13 months old, we changed pediatricians.

Our new pediatrician assessed our son and had us undergo the first of what would be a total of 5 sleep studies over the next 6 years. We had his adenoids removed.  A year later, we re-did the adenoids (they grew back!) and we took out his tonsils.  We were prescribed melatonin and a host of nighttime rituals, most to no avail.

In the end, my night owl was diagnosed with asthma and obstructive sleep apnea.  Although no one could determine the cause of the night terror episodes (despite being witnessed in the hospital when he was admitted on 2 separate occasions) it seems that he never outgrew the apnea episodes he suffered with while he was in NICU.  We were given a C-PAP machine. But he does not use it because he is a stomach sleeper.  Most nights he would sleep through the beeping of the machine as the mask would shift.  After a couple of months he grew to despise the mask and refused to use the machine.

Fast forward to 15 years later and he still has difficulty falling asleep.  And my once reliable sound sleeper, my little mermaid, finds herself also unable to sleep.  We keep our new pediatric sleep disorder specialist pretty busy.  This doctor is new as our old doctor stopped taking insurance.  This new doctor is very nice and seems to be knowledgable, but is having difficulty trying to help get this house back to sleep.

Today, every pediatrician and sleep specialist are quick to blame the use of electronics before bedtime as the cause for many sleep disorders, and I can see why.  And they are also teenagers and every teenager is notorious for staying up late.  One can even blame hormonal surges and lunar and tidal ebbs and flows.  But I will tell you first hand that my sleep deprived boy has always been my night owl.

This morning I am groggy as I am getting ready for work.  I had my own hard time falling asleep.  My mind was swirling with typical mom thoughts: Did I do enough for them today?  What appointments do they have this week? Which appointments do I have to make for them for next week? What time is it? Darn! I left clothes in the dryer. Again, but at least they aren’t still in the washing machine.  I mean really, how many times do I have to re-wash the same load?? I finally nodded off after 2 hours of tossing and turning.

At around 1:30am, my night visitor let me know that despite taking his usual dose of melatonin, he could not sleep.  I do not know what time my poor boy finally got sacked by Mr. Sandman.  My girl also had trouble getting sleep as I heard her moving about her room until late.  I am sure she will tell me about it later.

So here I sit at 7am, thinking about my nightlife and remind myself to pick up 5 Hour Energy on my way to work.

Is it too early to take a nap?

Invisible Illnesses Are Not Imaginary

Being a mom of twins is challenging.

Being a mom of teenage twins is tougher.

Being mom of teenage twins, each with separate rare medical conditions is a mind-blowing experience.

People always wonder how I manage.  To be completely honest, I have no freaking clue.

I float from one crisis to another. From specialist to discuss one aspect of a condition to another.

My knowledge of the human body and an array of rare medical conditions expands with each doctors appointment.

I absorb whatever information they share with us and then go home and Google my life away. I dig deep for information.  I have this fire in me to try to educate myself  and learn as much as I can.

I prepare for the next appointment as if it will be a final exam. My list of questions is dizzying as I prepare to challenge the specialists with my imaginary honorary doctorate in whatever condition we are exploring. I ask the tough what-if’s that most doctors are not comfortable answering.

My children have been diagnosed, re-diagnosed and newly diagnosed with syndromes and illnesses ranging from the mundane to the exotic, more times than I care to recall.

Pneumothorax; Pneumonia; Respiratory Syncytial Virus; Venous and Lymphatic Malformations with Thrombosis later re-diagnosed as Klippel-Trenaunay Syndrome; aneurysm in popliteal vein; Epstein-Barr Syndrome; aneurysm in coronary artery due to Kawasaki Syndrome; tonsillectomy; allergies; FAVA lesion; Inguinal Hernia (which required surgery); idiopathic and sudden onset of tinnitus and sensorineural hearing loss; asthma; Amplified Musculoskeletal Pain Syndrome;

99% of these conditions are INVISIBLE.

One of the most frustrating aspects of all this is watching them with their pain and not being able to do much to help them.

An added layer of utter frustration is the “well-intentioned” comments: “Oh but they look so healthy, you would never know they are dealing with all this.”; “Are you sure it’s that serious?”; “But I just saw them last week doing (insert an activity) and they seemed like they were having fun.”

It’s so hard to understand what we cannot see.  Invisible illnesses are not tangible so people often question the validity of is being told to them.

Yes, that was my daughter you saw dancing away at the Sweet 16 for her friend.  Yes, you did see her laughing and having fun.  What you did not see was her taking anti-inflammatories shortly before she left the house so that she could have fun at the party.  You did not notice that she was shifting all her weight to her unaffected leg so that she could still dance and stand.  You did not see her leg gradually swell as the night wore on.  You did not see her collapse in the car in exhaustion from all the fun, but also from hiding her pain.  You did not witness her limping across the driveway and our home and into her bedroom.  She did not ask you if she could get an ice pack or ace bandage to wrap her leg to take the edge off; or if she can now take acetaminophen for the pain.  No one knows that for 2 days after that night of fun, she was bedridden and unable to put any weight on her affected leg.  You did not watch her drag her pained body and drop onto the living sofa and stare into silence because she was trying to distract herself from the pain.

You did see my son loading up on his asthma medications for weeks prior to his next big game; nor did you see me racing home immediately after practice to get him to his nebulizer in order to avoid a visit to the emergency room for shortness of breath.

You do not get awaken in the wee hours of the late night/early morning with your child, near tears telling you that he cannot sleep because the ringing in his ears is obnoxiously irritating and he cannot get silence in his brain.  Ever.

You don’t deal with the emotional and psychological aspects they go through when their bodies let them down,  when their bodies hurt, when they hurt.  You don’t recognize the strained smiles as they trudge through their day to keep up with the rest of the healthy and able-bodied world.

But just because you don’t see it doesn’t mean it doesn’t exist.



My Teacher of Great Patience – Listening to My Child With Hearing Loss

During the summer of 2006 or 2007, while at a carnival, I sat with a psychic who told me a great many things that was, for the most part, pretty accurate.  Despite not having my children in tow with me that particular evening, he somehow knew I had twins and that they were not identical. One of the things he said was that one of my children, my son in particular, would be a “teacher of great patience.”  I chuckled one of those “how did he know” chuckles, at the notion.  It was an interesting and peculiar thing to hear, but it stuck in my head.

The more I thought about those words, the more alive they became.  And through the years, they have taken on a richer meaning.  My son has certainly taught me how to be patient, and he is still teaching me.

My first lesson from my Teacher of Great Patience occurred during those early NICU days.  We desperately waited for him to breathe without the use of the C-PAP machine.  We longed for his lung and the stitches from the chest tube to heal.  With bated breath, we had to wait for his brain, lungs and heart to synchronize so he could stop having apenic and bradycardic episodes (his brain would forget to send the signal to his heart and lungs to beat and to breathe).  It would take weeks before I could hold him; or that he would be able to suckle from a bottle and not be fed through a tube down his throat; or come home.

Eventually, he would come home and continue to teach us how to be patient.  In his own time, he would learn how to speak as we would patiently try to help him communicate with the outside world.  We have had to learn to be patient as his body continually recovers from frequent infections, viruses, syndromes and diseases.

My most recent lesson from my Teacher of Great Patience came now at the end of 9th grade.  Let’s rewind to the summer between 6th and 7th grade when he was diagnosed with idiopathic, sudden onset sensorineural hearing loss and tinnitus.  He had a very difficult time adjusting to the tinnitus.  We acquired a 504 plan from his school.  “504 plans are covered by Section 504 of the Rehabilitation Act. Under this civil rights law, students have the right to a free appropriate public education (FAPE). And that’s the whole point of 504 plans: to give students access to the same education their peers are getting. (FAPE is also guaranteed under the special education law IDEA.)”

Federally protected accommodations were set in place to ensure that he would be able to access the curriculum throughout the year; and ensure comfortable testing locations that would minimize distractions and triggers of his tinnitus so that he could concentrate on state administered exams.  In New York State, high school students must take NYS Regents exams to satisfy the requirements for their high school diploma.

Three days before the first scheduled state exam, my typically docile, easy going, quiet child (now teenager) began a campaign to reject any accommodations for the upcoming state exams.  I tried to explain that these accommodations are for his benefit and he should just go with the program.  But he was resolute.  What began as a discussion as to why his ‘want’ to abandon the accommodations was more important for my ‘need’ to make sure he is given, and takes advantage of every opportunity to help him succeed, escalated to the quintessential mom vs teenager argument.  It was “I know what is best for you.” versus the “You’re not listening to me.  AARRGGHHH, I am old enough to make my own decisions.”  For him to argue and challenge me the way he did, it was very obvious to me that this was very important to him. It was an ugly and painful point in our relationship, but it was necessary and important.

I tossed and turned all night debating whether I should stick to my guns, and keep the accommodations in place, or if I should take a step back and listen to him.

These are tough decisions for any parent to make.  Do I let my child spread the wings I have been pruning and preening for the last 15 years? Or do I still pull the “I’m the mom, you’re the child and what I say goes” card?

For parents with children with disabilities, its even harder.  At times, being a parent of children with disabilities takes on a hypocritical role. On one hand I hear myself trying to empower and encourage my kids to not set limits for themselves; I encourage them to push themselves, to keep up with their peers; I push them to challenge themselves.  If someone says that due to their condition, they should not….I challenge my kids to prove them wrong.

But at the same time, as I am hollering to the world, “my child is no different than yours, my child can keep up with the best of the best”, I am speaking from the other side of my mouth and saying we need accommodations, we need to level the playing field.

I see the hypocrisy, but I cannot avoid it.

Feeling conflicted, I called a good friend who lives in my world.  She has 2 children with disabilities and is extremely well versed in dealing with schools and 504 plans.  I relate the argument, the hurt feelings, the conflicted feelings and the hypocrisy, and she immediately gets it.  She reminds me that we have to let them have a say in their world.

Taking my friend’s advice, I left a message for the school guidance counselor to expect a visit from my son and to please take the time to listen to him.  Then I asked her to confer with our amazing advocate, his Teacher for the Hearing Impaired and get her to weigh in on this debate.

My son’s passion and expression of what he is experiencing was very articulate.  The mature tone in which he spoke when explaining how his tinnitus affects him was convincing enough that the guidance counselor’s message to me was instructions on how to remove the accommodations and give my son what he was asking – to take his test alongside his peers.

In the end we all agreed that it was important to:

  • listen to him;
  • spare him the emotional turmoil and resentment he would have experienced if we didn’t give him what he was asking;
  • allow him to be treated no differently than his peers;
  • let him not set limits because of his hearing loss and tinnitus and let him challenge himself;
  • let him fly.

My little man of few words used his voice to defend his decision to take his exams in the general testing location with his peers.  He became a man of action.  He became a leader, in the sense that we followed his lead.

He did what I have always told him to do.  “They” said that he should not test in the general testing locations because of his condition.  He set out to prove us all wrong.

He tested and he succeeded.  He aced his state exams.  He learned to use his voice.  But most importantly, he taught me, once again, to be patient with him, to listen to him, to let him grow.

The definition of patience according to the Cambridge English Dictionary:
noun [ U ]

US /ˈpeɪ·ʃəns/

the ability to accept delay, suffering, or annoyance without complaining or becoming angry:

My definition: LOVE