#TBT: It Gets Better...Really.

A few things have me hearkening back to this time of the year, but four years ago. One of which is a journal entry that I found from a while back that pulled me back into a time when Ella was much smaller-- almost Wyatt's exact age, and times were tough.  Keith was laid off from his job and we were facing Ella's first implant surgery in a couple of months.  We had just been told that she was going to need a hip surgery, which she never actually needed and did not have.  I felt compelled to be at every appointment even when I knew that practically, I probably should have been at work, seeing as though she had another, more than capable parent  at home with her.  I feel so fortunate to be swinging at this hearing loss fast ball with a different bat.  (Count that as my first official sports analogy.)  I am a work-from-home mom this time and I've played this game before.  And I know this one little secret that most people who go through hearing loss with their child do not know...it gets better.

I also have been thinking a lot about Care Maps.  A mom of a child with a disability was struck by how hard it was to keep up with all of her child's appointments and at the same time was struck by the fact that the specialists she was seeing all thought that their part of the puzzle was clearly the most important.  All made valid arguments to that effect and she was having trouble figuring out who was most righteous in their determination to be most important to her and therefore be prioritized.  In order to make her point that there are only limited hours in a day, she made a Care Map for her specialists that illustrated all of the efforts she was putting in with each one and carried it from doctor to therapist so that they could help her prioritize all of her priorities.  It was clear that no one was talking to the other one and therefore they had no idea the rat race that she had been facing.

I drew one for Ella's first year with profound hearing loss.  Yup, it is in PowerPoint.  You can take the girl out of consulting, but you can't take the consultant out of the girl.

It looks like a hot mess.  It translates really into about 3 appointments a week.  Wyatt is a little easier because he only has one impacted ear. Heck, Ella is easier now because she is just plain older, gets fewer ear infections, and needs much less therapy and no more visits for ear mold replacements now that she has her CIs.  In fact, in year 4 (last year) her care map looked like this.

Much better, right?  I wanted to share this with other moms who are going through this and moms who aren't and wonder often why I have visibly aged 10 years in the last five. EACH.  This is why, people.

But the good news is, it usually, by the grace of God, does actually look and feel better in a couple of years.  I knew this on the day that Wyatt was diagnosed and just that perspective in and of itself helped me feel like it was not so bad and I knew I could do it.

But, the first year kinda sucks.

Kay, so, brace yourselves, I wanted to share the stream of consciousness that is a February 2010 journal entry about one of the worst appointment days we had.  It is long, so please feel free to skip and not read every word.  But it is good stuff.  It made me remember what I really wanted to forget.
*********************************************************************

6:10 am-- I send the file I worked on over the weekend from my couch. I said I would send it Sunday, but it was Superbowl Sunday and did I really think my boss would read it on Superbowl Sunday?  Not that I know that he is either a Saints fan or a Colts fan, but no self-respecting guy is hanging out by the computer waiting for a work email to come through on Superbowl Sunday. 

Truthfully, I'm just glad that my wireless internet works right now.  It has been spotty at best, and when I turned on my computer at 5:30 am, I did not feel like trekking upstairs and stepping on the creaky board in the hallway floor and waking up Avery before her normal wake up time.  Ella is already making little happy "I'm awake" sounds in her crib.  She is truly always happy.  It seems impossible to me that a baby could be that happy, but she really is.  She wakes up happy and goes to bed happy and is happy all the time in between.  It is the blessing that I'm sure will carry her well through life.  She gets it from her father. 

Suddenly, a little three year old appears next to my knees.  I hit send and get ready to stand.  She moans with her fingers still in her mouth and takes them out only to say, "I wanna watch TV. I want a cereal baaaaarrrr." Clearly, not a morning person. Sigh. She gets it from me. 

We go through our normal Monday getting ready routine. I nurse the baby; Avery fights me on her outfit;  Ella goes through two clothing changes;  the dog looks forlorn at not getting walked before work/school/appointments. Clifford and Curious George serve as background noise and I think, ‘Well, at least she prefers cartoons that teach science and citizenship.’  I pour coffee and mix bottles. I select circle time books. I pull on my skinny jeans and fake uggs and walk five packed bags (diaper, computer, purse, backpack, hearing kit) to the car.  I slide into the front seat of the SUV.  Keith finishes scraping the windows, but leaves frost on the back two.  As he sits down in the driver’s seat,  Avery howls, "Daddy!!! You forgot my window!!  I can't seeeeee." I go back into the house twice before we can pull out of the driveway-- first for my phone charger, then for my jacket.  It's colder than I thought it would be, although somehow I'm the only one who is dressed inappropriately: without a coat.

8:44 am-- Drop off went well today at Primrose and we are half way to the Atlanta Speech School when my phone rings.  It's Linda.  We're going to be there early.  I wonder if she is cancelling. 

"Carianne. It's Linda.  We had 8:30 audiologicals this morning.  Are you almost here?"  Crap. 

"Wait, I thought it was 9am."

"No, we went back and forth on the time and settled on 8:30 because I have a 10am appointment off campus."

I look at Keith.  "I'm sorry, Linda.  We will be there in 5-10 minutes.  Can we still do it?"

"Yes, that should give us 40 minutes or so. Okay, see you in a few."  When we hang up I know she is probably thinking that we are late EVERY week and she may have to speak to me about it.

Keith makes a joke  by revving the engines a couple of times on the way.  I comment that he suspiciously gets annoyed by traffic, but when we have total control over our lateness, he thinks it's funny.  He reminds me that he wasn't the one talking with Linda on the phone, so he has no guilt. I remind him that appointment scheduling is supposed to be his job now and we have to make that complete transition soon because I can’t keep it all straight in addition to my work schedule.  Maybe it was too harsh to say that, but it’s true.

8:55 am-- I jump out of the car in the kiss-and-go lane and pluck Ella from her seat, still asleep. She pops her head up and blinks at me while I gather her hearing kit and head inside.  Linda is waiting at the door with my visitor's pass and has already signed me in. Janice, the audiologist, greets us both and we hurry to the booth.  Linda says to me, "Don't put her hearing aids in yet.  We are going to put her right in the booth."  I apologize again for being late and let her know that we are not really ourselves today, as we are seeing an orthopedist for a second opinion this afternoon.

"For what?"

"I didn't tell you last week?  Get this-- we went to the orthopedist for a routine check-the-box follow up visit and they are saying that her hip dysplasia is not cleared up yet and she needs surgery and a..."

"...cast."  Linda finishes my sentence. 

"Yes, a body cast." 

As she hooks up Ella's equipment in the booth and starts to attach the leads to her ears, she says, "For how long?"

"Are you ready for this...Do you want to sit down?  Six months!"

"That's about right," Janice says, "My niece had one."

Linda sighs and stares at Ella.  Without her saying a word I know she is thinking all of the things I have been thinking:  but she'll miss crawling and walking; how will missing major milestones affect her language pathways in her brain; is she still a cochlear implant candidate; when will they do the hip surgery and how will they time it with the implants;  what physical therapy will she need afterward. And the million dollar question:  how will this family get through this-- a profoundly hearing impaired child who needs cochlear implants and a major orthopedic surgery this year. Who will take care of her in a cast for six months without losing it?  Could she really have such bad luck? 

Ella starts nodding her head at Linda with her whole body the way she has been for a couple of weeks.  She wants her attention and she melts Linda's concern into a wide smile.  We start the test. 

9:05 -- Keith walks in with the diaper bag and goes to Janice's side of the booth.  Ella, Linda, and I are in the other side, separated by a wall of glass.  It is so sound effective, that I literally have heard pins dropping in there.  No idea how they make the walls that impermeable, but sound is really different in there.  There is no background noise.  It's like a tomb but it is also like a window for sound to perfectly enter the ear canals and get to the ear drum and rattle the tiny bones and make sound waves in your middle ear and cochlea whose hair cells vibrate with precision so that the nerve sends a pure, hollow, exact message to your brain. Or something like that. They start playing tones into Ella's ear while Linda keeps her visual attention by silently stacking rings on a wooden toy in front of her.  Ella is on my lap and I see the bald u-shaped spot on the back of her head where she has worn off the hair by spending too much time in the car seat.  The rest of her too-long-for-an-eight-month-old hair is matted because it was wet when she fell asleep last night and I forgot to run a comb through it this morning. She currently has a long piece of hair dangling from the base of her skull like the rat tail of a boy my brother was friends with when he was in second grade.  It was not an attractive look on him and is equally unattractive on Ella, but I love her strawberry blond hair and have refrained from cutting any of it off, including that particular section.  Besides, all of her pictures are from the front and only those who really know her look at the back of her head anyway.  

I know her.  I know that when she nods her head one second after the tone, she is doing it because she hears something.  But Janice looks worried.  She speaks through the microphone and tells us that she is just not whipping her head in the direction of the sound like she was last time, in December.  She can’t get Ella to locate the sound.

Linda attaches the bone conduction headband behind Ella’s right ear, her good ear.  They try the tones again.  This time, when they make a sound, they flash a light on in a glass box in the upper left corner of the booth.  In addition to the light bulb, the glass box has a statue of Big Bird on a bicycle.  It is supposed to help condition Ella to the sound.  When the sound comes from Big Bird’s side of the room, she is supposed to turn to it, looking for him.  She is supposed to make the connection between the direction of the sound and the direction of Big Bird.  The light goes off and a new sound goes into Ella’s ear.  It’s coming from the right this time.  Janice lights up a box with a dog playing the drums.  Ella stares straight ahead at Linda.  A second later, she nods with her body.   Janice is not convinced that it is a response to the sound.  She tells Keith that today’s test is like testing a completely different baby than in December.  She is a different baby.  She sits up unassisted and nods and claps and rocks on all fours and says “Thank you” in sign language every time you give her a toy.  She suggests a tympanogram to test for fluid in her ears.  Ella has had chronic ear infections and it would not surprise me if that is what is causing the marked change. 

We cross the hall to another room and Janice inserts a new lead into Ella’s left hear and presses a button.  A slightly sloping line appears on a computer screen and it has a peak in the center.  Clear.  No fluid.   She inserts the tube in the right ear.  The line on the screen is flat and the volume measurement of  her ear canal is ¼ of what it should be.  Blockage.  Again. After a long conversation about the hip issue and the rapid decline in Ella’s hearing, Janice says that she thinks we need to go back to the ENT this week to see about the fluid in the right ear.  I am amazed that we have to go back for the third week in a row, but that is becoming par for the course for Ella this winter.  She has basically had a cold leading to an ear infection since Christmas Eve. Well,  really since Halloween, but we did get a string of consistently healthy days in December.   Keith and I look at each other and shake our heads.  She has been on her ear drops for the past five days and her ear is still infected.

“I think we need to ask Dr. Herrmann for  a new treatment plan for her. She has not had a cold in three weeks, but this ear keeps giving us problems,”  I say.

We spend a few minutes sharing theories on the source of her difference in responses as compared to  last time.  Janice jokes that Mommy wasn’t here last time, so maybe that was it.  Pangs of guilt. I was in DC for a business trip and Keith brought her.  She did really well that day.  I say that I think it has to do with the fact that she has not been able to have both hearing aids in at the same time for a couple of months and it is inhibiting her ability to locate the sounds she may be hearing. 

Linda starts instructing.  “Well, we really need to get a handle on these ear infections.” No kidding.  Same as what Dr. Herrmann said last week.  “You know, we could worry about her not getting her implants because of the body cast, but really, Herrmann is not going to do the implant surgery unless her ears are clear for at least eight weeks. “ The surgery is approximately 13 weeks away.   “I recommend that you go back to the ENT today, if you can, and see if he will offer you something else to clear up the ears. Now that she is finally out of daycare, she should have a much better chance of staying healthy.” More pangs of guilt. This time stronger.

“Well,” I say, “and the weather should be getting warmer soon.  Maybe that will help.”  We all sigh and shrug and frown at Ella. She claps and smiles. As we are leaving, Linda reminds me to call her to tell her the outcomes of our appointments today.

9:53 am-  We are back in the car. As we approach Trinity Presbyterian Church, where I take the girls and myself to church each Sunday, I dial the audiologist at Pediatric Ear, Nose, and Throat of Atlanta.  PENTA for short.  Rachel answers. 

“Hi, Rachel.  This is Carianne Muse.  My daughter Ella Muse is a patient of Dr. Herrmann’s and we usually see RaDora for Audiology.  We were there last week to get Ella’s ears suctioned and cultured, but we have not received results back yet.  She just had an audiological visit at the Atlanta Speech School and it did not go well.  I think we need to come back this week to see what is going on.  That right ear is still not clear, according to the tymp.”

Rachel replies, “OK.  I’ll look for her lab tests.  We are going through a remodel and things need to get boxed up before each weekend, so we are having a bit of delay on some of the labs.  I’ll also see if I can get her in for a PA visit today.”  She puts me on hold and the muzak begins.   A minute later she comes back.  “I have an opening at 10:30 and at 2:15.  What works for you?”

“We’ll take the 10:30.  We are on our way now.”

I hang up and tell Keith that he will have to feed Ella her bottle in the waiting room while I do my conference call with my boss, also scheduled for 10:30.  Chances are, even if I spend the entire 30 minutes on the phone with him, I’ll still make it to the waiting room before we get called in to see the Physician Assistant.  We arrive at Children’s Hospital and turn to park in the parking deck.   ‘Hello old friend,’ I think to myself as we pass the medical office building and the hospital entrance.  It’s only 10 minutes after 10am and I have 20 minutes until I need to call my boss.  Keith gets Ella settled into the stroller and lugs the diaper bag up to the elevator as I sit in the dark and dial my mother on my cell phone.  I confess my deepest concerns for the day.  What if the new orthopedist recommends the same treatment plan?  I don’t hold back the tears.  They flow like a river.  “And her hearing is worse, Mom.  I just don’t know how much more I can take.  When are you moving to Atlanta, again?”  She tries to comfort and I know she is feeling the same pain that I am.   I tell her how wrong I feel that I’m this upset, when Ella’s conditions are fixable and completely reversible, and there are so many kids at this hospital right now who don’t have that much going for them.  I pull myself together and hang up the phone.  I dial my boss’s number, but then remember that my Blackberry mysteriously sets the time for 15 minutes later than it actually is.  I still have 10 minutes before I should even try to call him.  A few minutes later, I dial again and I get him.  He asks me to call his office phone instead of his cell.  We spend most of the next half hour discussing the file I sent this morning and how it will feed the agenda for his meeting at 3pm, that I will have to miss.  Again.  We settle on few points and he asks me if I can enter some additional data and make the changes to the agenda that we discussed.  At first I agree, because I anticipate having lots of waiting time where I could do some work.  Then I realize that because I’m driving all over town today, the likelihood of being able to get a wi-fi signal to send the new documents back to him is not guaranteed.  I have to decline.  I apologize and try to assure him that now that we have a working draft of how we will proceed each week, I will be able to support the meeting agenda creation for each subsequent meeting.  He does not seem too annoyed, but I’m sure he was hoping to avoid doing that task today.  Life 1, Carianne, 0.

11:11 am-  Before heading into the PENTA office, I sneak in a bathroom break.  When I finally get in there,  the waiting room is packed with families.  All different types of families.  I scan the room. Among the crowd, an older woman possibly with her granddaughter who looks about 10, a nurse and mom with a teenage girl in a stand-up wheel chair, one family speaking Spanish, a mom and a preteen with a trach, kids in jeans and kids in private school uniforms.  We have the only stroller in the room. No kids with hearing aids or cochlear implants from what I can see.  I spend about 15 minutes having a conversation of raspberries with Ella.  I may discourage raspberries as spitting later in her life, but now, if I can get her to imitate my mouth and make the same sound, it is great for her language development.  I do this probably to the disdain of some of the families sitting nearby who may be worried about germs she is passing by spitting into the air.  She loves this activity and would probably do it all day if we could. Keith reads in the chair next to me.  Finally, they call her name.  I recognize the Physician Assistant, but can’t remember her name. Kim? Kathy? She reminds me of her name, but I’m thinking about the last time I saw her and I don’t retain it.  She did Ella’s pre-op appointment for her ear tube surgery back in August. I remember her as efficient and professional, but young  and similar in looks to someone I used to work with when we lived in North Carolina—that woman is a dermatologist now.  The PA has on a beige sweater with wide cream-colored stripes, brown business-casual pants, and comfortable-looking sensible brown leather shoes.  I like her outfit better than mine. She apologizes for the crowds and explains that the Alpharetta office is closed today and she says she is just getting used to the new arrangements in the remodeled Atlanta office.  They apparently moved all of the staff to Atlanta today and they are doing the best they can with the space they have.  I wonder briefly why it is closed, but realize it is really inconsequential and I’m ready to get down to the matter at hand.  I explain the cycle of ear infections that Ella has been experiencing since December, that we were here last week and got a culture, that her hearing is worse in both ears, but the tymp only showed fluid in the right one.  I emphasize that we may be ready to try something new to get her healthy.  She looks in her right ear and says that she believes the tymps ( the one from this morning, and the one that RaDora repeated while I was on my conference call), but that she sees no drainage.  She sighs and stares at Ella with some bewilderment. 

“I would normally ask Dr. Herrmann this question as opposed to parents, but he is out today.  Has he ever talked with you about possibly explanting the tube and inserting a new one?”

“Umm…no.” Please no more surgeries.

“Because sometimes with kids who have these recurring issues, we consider that the bacteria we find on cultures came from the tube itself and may need to be replaced to get a handle on the recurrent infections.” Great.  “I found your culture from last week and there was a strep bacteria in the culture, similar to the one that she had back in the fall.  However, it should have responded to the Ciprodex drops….I recommend that we take a look with the microscope before we decide how to proceed. “  I know this means more waiting. 

The microscope room, is down at the end of the hall.  It has the microscope on a movable arm, a flat table, sometimes a screen that shows what the practitioner sees to the rest of the room, a couple of metal stools and tubes for suctioning and culturing fluid.  We finally get into the microscope room and I put Ella on the table.  The PA calls in Shelley, my favorite nurse, to help hold Ella’s head to the side while the PA looks in with the microscope.  The PA talks to Ella and tells her that she is just going to look.  She is trying to be soothing to her, but Ella 1) knows what’s up, as she has had this procedure numerous times, and 2) cannot hear a dadgum word of what she is saying because her words literally fall on deaf ears.  Does the PA forget or is she talking more to soothe herself or us?  I hold Ella’s left arm down and place my right hand over her left arm and her pelvis to minimize squirming.  Shelley gently but firmly places Ella’s head so that it is turned with her right ear up and her face is staring directly into Shelley’s face. 

Shelley whispers, “You are my favorite, Ella.  Don’t tell the others.”  I chuckle at her because she was definitely saying it for my benefit.  Ella stares at Shelley and does not cry or blink or squirm as the PA looks in.  “Nothing, “ she says.  I do not see any fluid, but I’m going to have Dr. Thomson take a look.  She leaves the room and Shelley picks up Ella.  Ella enjoys the attention, but leans over in my direction and waves both hands at me so that I’ll take her from Shelley.  A few minutes later, the doctor comes back in with the PA.  He introduces himself and puts out his hand for each of us to shake it.   He looks in Ella’s ear and says, “Can you see this?  It is a brown piece of dried fluid just inside the tube.  Can you see it?”  The PA nods, but I’m not convinced she sees it.  The screen is not in the room today, so I can’t see what they see.  Dr. Thomson prepares the long, cake-tester-like metal tube by hooking it up to the suction machine.  He says, “Well, at least in this case she is not going to be scared by the loud sound in her ear.”  I say, “Except that every sound is loud to her, so if there is a sound in her ear, to her it is loud.”  He nods and looks at me like he got a glimpse of the world through Ella’s eyes for a second.  He inserts the tube and applies the suction.  “There. Do you see that?”

The PA leans in and says, “Yes, it is clear now.”  A perfect student. 

Dr. Thomson says, “Well, that should do it.  There was a piece of debris blocking the tube, but there is no fluid in there—it is bone dry.  It should be ready to go and you can put the hearing aids back in. We always believe the microscope over the tympanogram.  The blockage is gone, and the tymp should confirm that.” 

He is right.  After we wait in the holding area—a  round-ish section of the office that is right next to the checkout counter and has good access to the medical exam rooms, the audiological offices and the door to the waiting area—we follow Rachel through the waiting room and into the larger audiological office out in the hallway.  RaDora is in there.  We wave, but she is talking with another family.  We file past her with Ella and I sit next to the tympanogram machine.  Third one for today.  Ella’s ear canal volume is up close to the other one, but not exactly the same and the blockage is no longer showing up on the slope of the line.  We can go.   As we leave, I mouth to RaDora that I’ll call her later.  Keith told her about the orthopedist’s diagnosis and I’m sure she is curious to hear the outcome of our appointment this afternoon.  She may also want to test Ella’s hearing here, in PENTA’s booth to see if she gets the same results as Janice at the Speech school.  RaDora always gets better results because she trusts that the parents can tell when the baby can hear.  She knows we know her better and can tell her if we think Ella responds. 

“That was a good appointment.” Keith says to me as we walk toward the parking deck. 

“Yes, compared to some others we have had in the past week, it was not bad.  So, why is it that we do not need to keep doing drops or an oral antibiotic?”

“Because the culture was from last week…”

“…And, right, right, the ears are clear now.”  Even though this is good news, it does not explain the poor performance on the hearing test in the booth this morning.  Is her hearing suddenly disappearing completely?  I have heard of other kids who had that happen.  I can’t focus on that right now, we have to get to the third appointment for today.

12:05 pm-  Ella is back in the car seat.  Our orthopedic appointment is not for almost 3 hours.  But, it is in Alpharetta and we will have a significant drive to get out there.

Keith asks me what we should do now as we drive to the parking attendant’s booth and pay our fee.  I say, “Let’s head up there now.  There is a McDonalds up there and maybe some other stuff.  We can get lunch and then you can feed Ella her lunch while I do my client conference call.”

12:33 pm – Ella is passed out in the car seat and we are sitting across from each other at Schotsky’s Deli on Old Milton Parkway.  We are using the time to eat and get our questions together for Dr. Schraeder.  During the conversation, I quickly begin to tear up.  I’m scared.  I’m worried that we are going to hear the words that we heard the other day again.  I’m worried that my denial and hope will be shattered and we will have to live with the words surgery and body cast as the truth. 

Keith looks worried and presses me to explain my tears. “Why are you so pessimistic about this? A minute ago you were telling me you were going to argue with the doctor if he told you she actually needed the surgery.  Now you’re looking defeated.”

“I don’t know.  I guess I am still angry and planning to argue, but I’m worried that I will break down completely if we hear a repeat of what you heard last week.  I don’t think I can take it.”

“It’s gonna be ok.  No matter what we have to do, no matter what she needs, we’ll get through it.” Easier said than done.  I’ve been playing that game with my brain and my heart for months now and I still don’t believe my own mantras of “Whatever it takes, it will eventually be ok.”  The stamina is not there for this blow.  I am really unsure if I can fend off complete despair if we have to put our little daughter under the knife 3 times instead of 2 this year and then watch her suffer in a body cast for six months, then deal with the aftermath of not letting her learn to crawl and walk on time.   It just seems like too much. As these thoughts are passing through my head I find it ironic that the thing that will bring me down is something temporary, something that can be fixed and will be a distant memory someday.  The permanent hearing issue that will only be aided by computerized  technology, will always require assistive devices and will make her look and seem different than everyone else would not do it.  It was really the body cast.  How selfish.  I do not want to go through taking care of her while she is in a body cast.  That is what it boils down to.  Well, that and the worry that it will do permanent damage to her language development, her psyche, her sense of self.  I do worry that if it is the last straw for me, that it will surely be the last straw for her and she will not make it through as the same child that she would have been without that experience.  I just felt like we were kicking her when she was down and that her motor skills were where she continued to be consistently normal or above average and we were taking that away from her. And us.

Actually, Linda Lasker from the Speech School was the person who helped me form that mantra in my head.  She was the first person who told me that it was going to be ok.  Not that Ella was going to be exactly as we wanted her:  fixed, hearing, not deaf, perfect, whole.  But that we would cope and that she would be fine. She would learn to hear and talk in her own way and the new plan for her life would form and we would be able to picture it clearly and live it out exactly according to the new normal.  What a great feeling it was to hear that when everything seemed like it was spinning out of control.  Weeks later, when I met Linda in person and visited my friend Comer who was also the Executive Director of the Speech school, I relayed it to him and held it up as evidence that I had made the right decision to reach out to the parent-infant program led by Linda.  She knows what to say to parents when they need something.  She combines instruction and guidance with good sense and comfort in a way that is motherly, accepting, wise and exactly what we need.

Our orthopedist, the first one, was quick to point out that this hip issue is fixable, reversible, completely correctable. With surgery.  That may comfort parents who only have that to deal with.  Maybe some can say, it’s just 6 months and then it is done and we can move on.  It is not comforting to us.  It is overwhelming and seems to be exponentially harder than it probably needs to be. 

As I rise to make my way back to the car, I remind Keith that Ella’s lunch and after-lunch bottle are packed in the diaper bag and that when she wakes up, they should be given to her.  He asks me when my call will be over.  I tell him it is scheduled for an hour, but it could be shorter or longer than that.

1:49 pm- I press the end button on my cell phone.  On my lap is a hard copy of the document I was reviewing with my clients.  It is marked up with red pen now, when before it was only in black and white.  I’m staring directly into the side window of the restaurant where I had lunch an hour before.  Keith has his back to me and is sitting at the same table where I had been.  Ella is facing him in his lap, but I can’t see her.  His back and arms cover any sight of her.  

My call went well and I’m pleased with the outcome.  None of the changes that I needed to make to my carefully crafted document were ones that I had a true argument against.  The client is the client, after all. They pay the bills, so they usually get what they want.  The purpose of the call was to explain some of the choices I had made and perhaps persuade them to see it my way a couple of times so that they realized that I had both of our interests in mind when I wrote it.  The purpose was to have them see that the changes that they thought were obvious were not a product of having selected someone incompetent to write the document, but to the contrary, that each drift away from their own concept of what should have and should not have been written was justified and reasonable, but also fixable.  Completely correctable.  With edits.  I had succeeded and felt rather energized by my accomplishment. It’s really why I work—the thrill of pleasing a client and getting a little of what I want for them at the same time. That, and the health insurance.

As I stare through the window at my husband’s back, I realize I’m having a moment not unlike a biblical story that I have recently heard.  Jesus takes three of his disciples to the mountaintop days after the fishes and loaves miracle.  They appreciate the break from the valley where there are sick and needy folks everywhere.  They have a vision of Moses and another prophet talking with Jesus and then as they all start to leave, they beg Jesus to let them stay and continue to take shelter on the mountain.  Even build some shacks where they can hide out for a while. Wrong answer. God sends a scary cloud to envelope them and tells them that Jesus is his Son and that they should listen to Him.  Then they, of course, go back down the mountain.  I was on a mole hill of my own.  I escaped the day for a few minutes by conducting a successful client conference call and I have  the feeling of a mini-vacation in the car alone, while someone else takes care of Ella’s basic needs.  I did not want to go back down the mountain.  Can’t I stay a little longer? 

No, get out of the car and take your daughter to the doctor.

Dammit. I hate clouds.

2:03 pm- We enter the doctor’s office almost a full hour before our scheduled appointment.  We are supposed to be there 15 minutes early, but there really was nothing to do on Old Milton Parkway and we were ready to head to the appointment that really defined the whole day. I take the paper work from the receptionist and settle into my seat as Keith fills Ella’s bottle with water in the hallway and then mixes in the formula powder.  I was still nursing the baby, but only twice a day now.  I had battled through 4 months of pumping at work during the day so that Ella could get breast milk while I was away from her.  I believed in the principles of breastfeeding because I was in public health and because I had seen the benefits it had afforded both of the girls while they were in daycare.  The quickness with which they recovered from a runny nose always amazed me and I was sure it had something to do with the breastmilk.  I had read in my breastfeeding book that when you directly feed on the breast, the baby actually gives you the virus they are fighting and you make the antibodies and then feed them back to her.  Amazing!  Totally worth it just for that little miracle.  I had also believed that Avery’s total lack of need for antibiotics until she got strep at 18 months and absence of any sign of ear infections until she was two had much to do with the fact that she was exclusively breastfed after she got over the jaundice through her 6^th month.  Ella blew that theory out of the water because she had essentially had an ear infection non-stop since her birth.  Ear infections, I’m afraid, have much more to do with the genetics of the construction of the ear and Eustachian tubes and really very little to do with feeding methods.

*********************************************************************************

Ok, so there you go, all that by 2pm.  The story ends well because New Hip Guy told us that we did not have to subject Ella to the surgery and we immediately switched to him.  By the year 4 care map, he is GONE.  Completely gone.  She is back to just monitoring by the pediatrician.  Hallelujah.

But, seriously, I have no idea how I survived that year.  I had no ability to comfort myself with "been there, done that".  I felt like I was on an island.  I had not met my Lobsters yet. It was a dark and lonely time.  

Not to steal from the LGBTQ community, but every mom of a child who is deaf or hard of hearing should get someone to whisper this in her ear:  IT. GETS. BETTER. 

It really does.