Left Side

I figured I might as well blow the dust off my blog for International Cochlear Implant Day.  Hey, why not?  Yay… My son is now bilateral, he had surgery for his left cochlear implant on January 20, 2016.  Man that kid amazes me every day, he’s such a trooper & he’s been through so much already in his short life.  Hearing loss is a journey I never planned for but I sure do love my tour guide.  Dr. Parry was awesome as always & his magnets line up perfectly.  I’m a little OCD at times & that was actually a concern for me, I’ll admit it.  Surgery was completed in less than 90 minutes & my boy came out of anesthesia fighting just like his Momma!  It took his dad & I both to hold him down once he woke up.  Between trying to pull the ear cone headband off, rip out his IV & taking off his hospital bracelet, we each had an arm & a leg then held on for dear life while he trashed around.  He calmed & I was able to take him home to recover.  This kid was eating pizza & drinking juice like it was a regular day, he’s incredible.  The incision was smaller this time, only behind his ear but he had quite a bit a swelling which was scary.

Activation was February 5, 2016 he had such an unbelievable response!  His eyes opened so wide & he kept looking to his left then he reached for his implant on the right but he wasn’t wearing it.  He figured it out & started to cry.  Wow, what an experience!  It’s just been such a journey from his initial failed newborn hearing screening to where he is now, 2 & a half years later no longer waiting to hear but hearing & from both “ears” along with several dates I’ll never forget.  I have a special tattoo in mind for my bionic boy, I just need to figure out where exactly I’m going to put it.  It feels almost like a huge weight has finally been lifted, no more surgeries (hopefully), just ongoing speech therapy & a regular visits with his Audiologist.  I’m now part of a whole different world full of love, encouragement & success.  I have enjoyed seeing posts today in honor of International Cochlear Implant Day, it reminds me that being Deaf doesn’t have any restrictions, just endless possibilities.  God changes caterpillars into butterflies, sand into pearls & coal into diamonds by using time & pressure.  He’s working on all of us, myself included but I refuse to lower my standards to accommodate those who refuse to raise theirs.  You have to be honest about who you are, flaws & all.  You never know who you are inspiring by simply being you & that’s what keeps me going.

 

Bilateral

And, we are on our way to being bilaterally implanted!  My son’s CI Team which includes his ENT surgeon, Speech Therapist, Audiologist, Pediatrician, Physical Therapist & Social Worker have signed off on & received approval for his left cochlear implant.  I’m looking forward to scheduling his surgery without the hassle of the right within the next couple of months.  He has made some very significant improvements in listening, comprehension & spoken language recently.  It’s amazing the difference in just a short amount of time.  “He that has ears to hear, let him hear!”-Matthew 11:15

“You’re now in a secret world.  You’ll see things you never imagined; ignorance, rudeness & discrimination.  But you’ll also witness so many everyday miracles & you’ll know it.  You won’t think a milestone is just a milestone, you’ll know it’s a miracle & be present in that moment.  You’ll treasure things most wouldn’t think twice about.  You’ll become an advocate, an educator, a specialist & a therapist but most of all, you’ll be a Mom to the most wonderful child.”-Geraldine Renton

I decided very early in our journey that I did not want to know what wearing a cochlear implant sounded like.  I was approached today by a co-worker who is studying Phycology at the University of Arizona & is taking a Language Foundation course.  He asked if I’d like to hear what a 16 channel electrode sounds like & I agreed.  It brought me to tears!  How awful!  It was so demonic, I was terrified!  My son’s CI has 22 channels so I’m hoping there is a major difference.  I do not regret the decision I made in choosing cochlear implants for my Deaf child but I do regret going against my better judgment & listening to that recording because I still have not recovered.

I haven’t written a post in a long time due to the opinions of someone very close to me who said my blog made me sound not only unhappy but desperate.  I was absolutely crushed & devastated!  That was not my intention at all, I never wanted to be seen that way at all & have been hesitant ever since.  However, I will not allow someone who does not understand what I’ve gone through as a single Mother of a Deaf son to judge me or deter me from sharing.

Overtime

Wow!  I have been working myself to the brink with 55+ hour weeks & every Saturday for the last 8 weeks.  And, let me tell ya the overtime isn’t worth it because it just throws you into a higher tax bracket.  I don’t have to work tomorrow & honestly, I’m not even sure what to do with myself.  I’ve missed my son & he’s missed several of his in-office speech therapy appointments.   His “hearing age” is approximately 4 or 5 months, his listening & comprehension is currently 9 months but his spoken language is only 3 months.  He uses mostly vowel sounds to communicate along with whining. That’s something I’m working on, after 2 years of anticipating his needs, I now need to let him tell me what he wants verbally or through sign.  He says, “Mom” pretty darn clearly though.  He loves music, its hysterical to see my Deaf son dance along to the beat.  He’s got some moves which he must get from his Dad because I have 2 left feet.

Summer in Arizona is coming to an end, well the school year is beginning but the heat isn’t going away any time soon.  It’s the busiest time at the Children’s Clinic so I was finally able to schedule weekly speech therapy in September along with another mapping session with his Audiologist in August.  He has been maxed out on his current mapping program for several months & now needs more access to sound.  I don’t think he was able to hear my voice until his most recent mapping in April, that’s when I noticed more response to sound.  He doesn’t do very well during mapping, he blows a screw!  I’m hoping over time he’ll get used to them & it’ll get easier on both of us.

I can’t believe that in 10 days, I will have a 2 year old!  Here comes the terrible 2’s & potty training.  I’m not exactly sure how that’s going to work with a Deaf child who has issues with communicating, who has shown no interest & me not having the required equipment.  We shall see, wish me luck!

Coping

Change is something we’re used to doing & coping with everyday, some of us handle change better than others. Tomorrow my son will enter yet another change in his life with a new babysitter. 2 weeks ago my life changed when new opportunities presented themselves & I felt a wave of emotions. I am beyond blessed that I was able to find such a kind, generous & loving women to watch my premature, Deaf son who she treated like one of her own. She not only became a friend but also now is part of our family. I wish her the best of luck in her new career! He will now spend his days with one of my beloved ex-coworkers who’s been like a 2nd grandma to him. I’m so happy that she was willing to come out of retirement to watch my bionic boy!

I’ve never met a strong person with an easy past but this is my life & right now I am both happy & sad, I’m still trying to figure out how that can be. I’m not sure if I’m closing myself off again but sometimes it feels like if I don’t reach out, no one else will. I’ve always kept my circle small but lately it seems an awful lot smaller.

RIP Momo

I met Carla in October 2008, she was my best friend, Alex’s “roommate”. She quickly became lovingly known to me as “Momo”. I was part of Alex’s family & was always treated as such. I spent many evenings in her Arizona Room, contemplating life while watching Survivor over the years. How she dealt with us young nuts night in & night out is beyond me. I’ve never laughed so hard in my life as I did with Alex, Papa & Momo. As an only child, she included me in their annual Christmas Eve celebration. She was a brilliant women who gave me strength in my darkest days. She told me I was a pretty crier hours after a broken heart. She gently held my tiny son when he was just 6 weeks old & told me what a blessing he was. She encouraged me & I am a better person having her as a part of my life. Until we meet again, Momo you will be loved, missed & admired. 

Priorities

If you’re struggling, you deserve to make self-care a priority!  Whether that means lying in bed all day, eating comfort food, putting off housework, crying, sleeping, driving without a destination, rescheduling plans, finding an escape through a glass or bottle of wine, watching your favorite movie, reading your favorite book or just by doing nothing at all.  Give yourself permission to put your healing first.  Quiet the voice telling you to do more & be more.  Today, whatever you do, let it be enough.  Feel your feelings, breathe & be gentle with yourself.  Acknowledge that you’re doing the best you can to cope & survive.  And, trust that during this time of struggle, it’s enough.  Being a Mother is learning about strengths you didn’t know you had & dealing with fears you didn’t know existed then add to that being a single, first time, working Mother of a Deaf son.  There are days my mind thinks so far in advance that I’ve realized my son will be the high school graduating class of 2031 & nights where it never shuts down.  You’re no good to anyone if you’re not good to yourself.  I have to stop comparing myself to others, God made me unique with a special plan in mind.

Right now, I’m happy, healthy & absolutely adore my son.  He’s making some amazing steps towards listening & spoken language.  Life is good & is only going to get better. Love is just a word until someone special gives it meaning.  True love isn’t about being inseparable, its about 2 people being true to each other even when they are separated.  The few hours I spend with him are worth the hundreds of hours I spend without him.

Happy belated Mother’s Day!

I know I’ve been slacking on blog posts lately, life gets hectic.  I spent my Mother’s Day weekend continuing our tradition of Mother/Daughter pedicures for the 3rd year in a row & again without any acknowledgment from the person who gave me the decision to become one.  “Still the most magical day of my life was the day I became a Mom.” -Linda Becker

My son is doing awesome at keeping his implant on, he’s actually fussy when he’s not wearing it.  Since his most recent mapping appointment he can finally hear my voice.  Hearing my Deaf son say, “Momma” for the first time is something I’ll never forget!  I’m pretty sure the first time he says, “I love you” there will be tears.  His signing has picked up quite a bit lately & he’s mimicking several sounds.  Ma, Hi, No & Go are his current spoken words.  Not too shabby for 4 months hearing!

There’s never a dull moment.  Weekly speech therapy, bimonthly physical therapy, monthly Audiology appointments & sometimes I don’t even know what day it is.  My son’s wonderful & amazing babysitter has generously allowed his rep from ASDB into her home for twice weekly visits.  She has honestly been a Godsend, I don’t know what I’d do without her!  “And there appeared to him an angel from heaven, strengthening him.” -Luke 22:43

My longest relationship has been with my car, she gave me 11 good years but it was time to say goodbye to my 2 door coupe & hello to my sporty new 2015 Toyota Camry XSE.  A very good friend of mine helped me get a great deal on the car of my dreams.  So much for being debt free for the first time in my adult life, that only lasted 45 days before I made my first payment.

I’ve decided to surround myself with people who know & respect my worth.  I don’t need many people in my life, just the real ones who appreciate me for who I am & I’ve stopped reaching out to people who wouldn’t reach back.  There was so much negativity around me, it was very draining & quickly began to reach its boiling point so I had to make a decision that would upset others but I’m not going to feel bad or apologize, I can only be responsible for my own happiness & not anyone else’s.

On a more personal note, I recently reunited with someone 20 years later & I never thought I’d get a 2nd chance at my 1st love but sometimes you need a 2nd chance because you weren’t ready for the first one.  A lot has happened in our lives over the last 16 years since we’ve seen each other but at the same time it feels like nothing has changed.  My life is turning into a Nicholas Sparks novel & I can’t wait to write it with him, its not going to be easy but it will be worth it.  “To the wrong person you’ll never have any worth but to the right person you’ll mean everything.”

Go!

My bionic boy spoke his first word this morning in speech therapy…Go!  Yes, I’m sure he’s said other words or at least close to others but this is the first time I’ve actually heard him speak in context.  I got a little teary!  I’ve been trying to juggle all of his appointments with my employer & I’m starting to get burnout.  Working 9 to 10 hour days with a 30 minute lunch break everyday has taken it’s toll on me.  I missed almost 20 hours of work in the last pay period & had just shy of 2 hours of unpaid time after making up as much of the time as I possibly could.  He’s supposed to have speech therapy weekly, however I’m limited to an early morning appointment or the last appointment of the day & she is usually booked.  It’s not feasible for me to have a 1pm appointment because it causes me to miss almost 4 hours of work.  His speech therapist suggested having video sessions, which would be so great!  I wouldn’t have to drive the 45 minutes to an hour just to get him there, plus getting him back & dropping him off before returning to work.  I’m really starting to wonder if I’m the only single mom of a Deaf child who actually works for a living.  Not everyone will understand our journey & that’s fine. It’s not their journey to make sense of, it’s ours.

My son wears the compact battery on his cochlear implant since it’s lighter & he’s got such tiny ears.  I noticed it wasn’t connecting well to the processor but seemed to be working & keeping a charge.  I took a look at it & the whole top piece came off!  Oh my goodness, it’s broken!  Ahh…What am I going to do?!  I called Cochlear US this morning, the battery has a 1 year warranty & I’ll be getting a new replacement in the mail tomorrow.  Wow, I’m impressed!  They have been absolutely amazing & I’m so glad to be part of the family because that’s exactly how I’ve been treated!

It’s NCAA Men’s Basketball Tournament time, something I look forward to every year!  While my bracket is busted, my Final Four teams remain intact.  Go Arizona Wildcats!  BearDown!

The saying is, “Sometimes 2 people have to fall apart to realize how much they need to fall back together.”  While that maybe true, I think perhaps there were other things we had to find before we found our way back to each other.  This should be very interesting to see how it plays out, you just never know.

Happy International Cochlear Implant Day!

February 25th marks the International Day of the Cochlear Implant, which commemorates the first cochlear implant operation that was performed in the world in 1957.  In 1978, after years of research & development Dr. Graeme Clark successfully implanted a multi-channel electrical stimulation device & teamed up with Cochlear Limited to have his design commercially available all over the world.  Today more than 250,000 people can hear thanks to Dr. Clark & Cochlear, including my son.  He never took no for an answer, didn’t listen to his critics & had champagne tastes on a beer budget.  Given the chance, I’d be honored to shake his hand.

Hallelujah!  The 3rd time’s a charm & my son was approved for Medicaid with an active date of January 1, 2015.  It was such a relief to get that approval letter in the mail on the same day as I received his total amount to be billed from his hospital stay.  Drum roll please… $48,221.25!  Yikes, although my portion to pay would only be $2,144.48 which still doesn’t cover the usual copays.  I’ll now be able to have the insurance company apply that amount towards his Medicaid & then we’ll see what I’m actually looking at for the out-of-pocket expense.  Although, I will say it was just a breath a fresh air to not have to explain to each & every doctor what a Cochlear Implant is & does.  Gotta love a training hospital full of newly schooled minds.

I don’t need a relationship to define who I am, I’ll be fine because I’m a strong woman but I’m not going to let the person who didn’t love me keep me from the one who will.  I’m asked quite a bit why I’m single & to be honest, I don’t have the time to give.  I’m tired of the drama & everything that comes along with it.  Seems, I’m better on my own without distractions.  “You’re not ready to be in a relationship until you’ve learned to be happy while single.  You can’t have an identity without first knowing God & who you are.  Seeking relationships causes an addiction for acceptance from someone who can’t replace the void meant for God in your life.” -Tovares Grey

I’m finally settled into our new home.  Everything is unpacked & in it’s place.  I’ve figured out where things are in the area & how much time is needed to be on time to places like work.  I just wish it felt more like home instead of like I’m house sitting for a friend.  I’m sure that day will come soon enough.  There was a quote I wanted to put on wall in my son’s nursery that read, “No one else will ever know the strength of my love for you, after all you’re the only one who knows what my heart sounds like from the inside.”  Oddly enough, I never did make that purchase.  My son may not have been able to hear my heart beat from the inside but I know he felt it & that bond is still just as strong.

Medicaid

“A child is like a butterfly in the wind.  Some fly higher than others but each one flies the best it can”.  Why are we always compared to one another when each one of us is unique?  My son is 18 months old, was 4 weeks premature & is Deaf so his journey isn’t going to be the same as another child his age.  As a Mother, I understand this completely.  No one has a right to judge you because no one really knows what you’ve been through, sure they may have heard stories but they didn’t feel what you felt & they haven’t had to deal with the things you’ve dealt with.

My son’s had his 2nd Cochlear Implant mapping yesterday with his new Audiologist & a representative from Cochlear which was pretty exciting for me since I was able to ask a bunch of questions.  They were great & my son adores her which is good since he’ll be seeing a lot of her over the years.  I have to piggy back his appointments now so I don’t miss as much time off from work so he also had his weekly Speech Therapy as well.  This kid amazes me, he’s doing so well!  He is mimicking the Ling Sounds & looks cute while he’s concentrating on hearing & listening.  He definitely knows the word, “No” & will shake his head then sign it back.   At the end of the day, the most overwhelming key to a child’s success is the positive involvement of parents.

After his appointments, I was notified that he is no longer covered under Medicaid or AHCCCS (Arizona Health Care Cost Containment System).  I have him covered under my health insurance program through my employer but there’s a big difference.  Mine has a very high deductible & expensive copays.  I had to reapply today after being denied previously due to excessive income, which is odd considering I haven’t gotten a pay increase although I do get child support now.  My problem is insurance doesn’t cover these appointments & the ones it does cover is only 20% because it is Out-of-Network.  So if he is denied again for Medicaid, I will have to start the process all over with his Pediatrician to get referrals for his additional services & he will no longer be able to have all of the necessary therapy sessions.  Physical Therapy will no longer be covered.  Speech Therapy will be monthly instead of weekly.  Audiology will be quarterly instead of monthly.  And, he will no longer receive these services at the Children’s Clinic.  What… A… Nightmare!  I am already looking at approximately $4,000 in medical bills that I’ve paid for out of pocket even though I have a court ordered medical cost split with his Dad, I’ve only seen 1 payment of $75 for reimbursement.  I can only imagine the bills I’ll be receiving shortly for the last 6 weeks of services not including his week long stay in the hospital.  Yikes!

Valentine’s Day is fast approaching & I will be continuing my annual tradition of wearing all black & an item of jewelry from every ex-boyfriend.  I don’t chase people anymore, I’ve learned that I’m here & I’m not going to run after people to prove that I matter.  I won’t let anyone toss my heart around just because they don’t know what they want.  My heart is valuable & it belongs to God so I’ll wait for the man who is ready to not only acknowledge my value but to cherish my love.  We’re all in the same game, just different levels.  Dealing with the same hell, just different devils.  I’m still currently dealing with the heartbreak from the last “El Diablo” his nickname, imagine that.