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.
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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 6th 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.
