From Two Days Ago (June 24, 2014)…
We are at the happiest place on Earth for the AG Bell Convention. Here were my birthday thoughts from the other day. Magic's gettin' real, y'all.
They say it’s my birthday (and by they, I mean the people on
Facebook). I’m so happy for me. J
This birthday marks 39 years for me and 5 years since we found out that Ella was deaf. Just 18 days after her birthday, we returned to the birthing hospital for rescreening. We assumed we would be redeemed that day—that her “ear fluid” would have passed and that we would get a clean bill of hearing health for our sweet newborn baby.
Redemption would not come that day. Nor would it come the next day, which was my birthday, because the next day after the rescreening there was a an opening to get a full Automated Brain Response (ABR) for diagnostic purposes to see what level of hearing loss we might be looking at. It still seemed unreal. We went for pictures earlier that day and so we showed up on my birthday at the audiologist’s office, all of us dressed in yellow, expecting magic—someone to make the possibility of hearing loss disappear.
This birthday marks 39 years for me and 5 years since we found out that Ella was deaf. Just 18 days after her birthday, we returned to the birthing hospital for rescreening. We assumed we would be redeemed that day—that her “ear fluid” would have passed and that we would get a clean bill of hearing health for our sweet newborn baby.
Redemption would not come that day. Nor would it come the next day, which was my birthday, because the next day after the rescreening there was a an opening to get a full Automated Brain Response (ABR) for diagnostic purposes to see what level of hearing loss we might be looking at. It still seemed unreal. We went for pictures earlier that day and so we showed up on my birthday at the audiologist’s office, all of us dressed in yellow, expecting magic—someone to make the possibility of hearing loss disappear.
Then, they said the word that changed our lives
forever: PROFOUND. I was so blown away
by the word that I actually did not understand the results at all. I took the audiogram home and called my
friend, Susan, whose husband’s birthday is coincidentally the same day as
mine. “I’m sorry to take you away from
Chris’s birthday, but I have no idea what I’m looking at. Can you help me figure this out?” She knew audiograms because her son had a
unilateral loss. After a few minutes, she said “It’s not good. (Long Pause).
But let me give you the names of my audiologist and my ENT." A lot
of good has come from that dark, lonely, confusing day and it started to turn
around during that conversation…I had the very first steps in my path for Ella.
Fast forward to five years later.
It’s 4am as I type this post. It is the second Tuesday in a
row that I am up at 4am. Last week it
was because I had to clean my house, more specifically the playroom, before I
let Wyatt’s new music therapist and our Part C Coordinator for the county into
our home. The playroom is IMPOSSIBLE to
keep clean these days—summer contributes to that, but really it is because of
the sudden influx of toys that comes in June due to Ella, and now Wyatt’s,
birthdays. I usually have no time (read
desire) for cleaning between the kids and my busy work and travel
schedule. However, the playroom was
insanely out of control and there was no way that a brand new therapist was
going to get a window into what the playroom normally looks like. At least not on the first visit.
That is a secret about raising kids who are in early
intervention for hearing loss that you don’t necessarily know. Somewhere along the way, they decided that
good early intervention must take place in your home. And this inevitably forces already stretched
parents to clean a lot more regularly or choose to completely expose their
therapists to he frenetic life that we live.
I mean, if it comes down to cleaning my playroom or running to the audiologist
to get a broken hearing aid fixed, then, I’m sorry, but the hearing aid
wins. And that actually takes longer but can be done in the light of day, instead of in the wee hours before my people
get up. Oh yes. Playroom cleaning must absolutely be done
under the cover of darkness so that we do not have to keep every ratty stuffed
animal and puzzle with missing pieces.
Removing broken toys permanently is something that must be done without
hindrance. Or whining. Therefore, 4am it is.
Last week as I cleaned, I had many happy thoughts running
through my head in addition to anticipation of the new music therapy sessions
that Wyatt would benefit from every two weeks.
It was one week until my birthday, less than one week before we left for
Disney World on vacation and to attend the AG Bell Convention. I was physically
doing something completely ordinary, but magical thoughts were happening while
I deposited single Barbie shoes and papers with one marker line on them into
the trash and sorted the plastic food into the play kitchen and organized the
musical instruments in the corner with the keyboard. Here are some of my magical thoughts:
1)
I thought: I am beyond excited to see one of my
favorite bloggers and authors, Glennon Melton at Momastery, speak at my church to a crowd of
350 moms. Anticipating that event was
just as sweet as attending it because I knew that it would be a magical night
and that the crowd would be all moms just like me. My dear friend from church had organized it,
but little did I know that they would be playing some of my favorite music in
the sanctuary before, that my pastor would introduce her, that she would hug me
upon her arrival into our narthex and that she would promise a mom who lost a
child that her baby would get 170,000 Happy Birthdays this year. I had no idea, as I moved Ella’s drum set
into a better, how that speech that I was about to see would
stick with me so that I would think about the concept redemption for days
afterward. Anticipation in the darkness
is not something reserved for a small child on a magical Christmas morning, but
could also be something magical for a grown woman on a random Tuesday who is
trying to get rid of the broken crayons in her playroom before her people get
up. As Glennon would say a few hours later
(paraphrasing here), everything is magical in the morning while it is dark and
before the people get up. And then the
people get up.
2)
I thought: Birthday parties are not about the
random toys and activity books and stuff that the kids get as presents. They are a celebration of life itself, of
another year of progress and growth.
That is why I attempt Pinterest-worthy cakes and plan themes for months
in advance. It is not only a great
creative exercise for me, but it should be memorable to the child and the parents. The themes, special food, invitations and activities help color the
photos we take and make them into memories.
So, while I know that birthday parties just create more hoarder-worthy
stacks in our playroom, I love them and they are the part of the magical parts
of parenthood that I would clean a thousand playrooms for. Here is my
childrens’ Mickey and Minnie Themed cake this year:
3)
I thought: Birthdays are aplenty in our house in
June and we had just casually skipped a huge one the night before. I hadn’t
technically forgotten, but Ella fell asleep super early last night after a very
busy day at dance camp and swimming in the neighborhood pool. The day before was one of the most magical of
June Birthday’s to mark: Ella’s Hearing
Birthday. In the world of cochlear
implants for children, parents usually add a birthday to their child’s life—the
day that marks something in the journey to hearing by either receiving an
implant or getting it switched on. June
16, 2010 is Ella’s hearing birthday.
Ella turned five at the beginning of the month and then two weeks later,
we celebrate the day she had her first cochlear implant activated. It was a pretty magical day because we got to
breath a huge sigh of relief that she did in fact hear something through the
implant after four hours of trying.
However, it was not the perfect smiling
reaction that everyone who goes through this experience hopes for. There were still doubts as to whether
auditory training and the process of learning to talk would really all
happen—all of the magic was in front of us.
We still had a lot of worry and doubt, but that day marked the beginning
of something great. Four years later, I
look at my FB post about the event and I tried to be hopeful and see the achievement
in the moments that she winced or pointed when she heard something, but you
could hear the doubt in my words as well.
It is hard to believe that it has been four years since I first felt
that feeling— a flood of joy and hope wrapped in wonder and doubt about the
future. I still have frequently have this feeling when I look at Ella and I see something that is still not where it
should be—like when she drops the “ed” in a past tense verb or she fails to
identify a sight word that we have been practicing. Will she be able to do it? Will she maintain
her age-level fluency in English as she grows?
Will she learn to read on time? That feeling makes me push on and try harder with her to get her where she needs to go next.
The point is that Hearing Birthday is something for her so that she realizes how magical that day was; so that she understands that she was given the profound gift of a different future. It is also our acknowledgement of the past—that all of those things we doubted would happen have in fact happened. You can see the fairy dust in that…the path behind us is covered with small achievements all along our journey that we need to remember and recognize on the Hearing Birthday.
Celebrating is not just about the ice cream cake we would eat that week, but about the purest form of redemption—when you make a choice as important and serious as using spoken language for communication for your deaf child and the grave decision to do elective surgeries as a part of that choice, there must be redemption. It is only fair that no one, as Glennon would put it, should feel like a door is slammed in your face because you made the “wrong” choice. I still do believe that redemption comes for all families of children who are DHH, just in different forms, according to the choices that they feel are right or that work for their child. The stakes are high when you choose the surgery over the much less medically risky route. Looking down the path in front of you, you can anticipate the glittery magic that may come as part of the path and it eggs us on to continue to take the next tentative steps. Here is the real magic of the redemptive path for my children who are DHH as I see it in the past and in the future…
The point is that Hearing Birthday is something for her so that she realizes how magical that day was; so that she understands that she was given the profound gift of a different future. It is also our acknowledgement of the past—that all of those things we doubted would happen have in fact happened. You can see the fairy dust in that…the path behind us is covered with small achievements all along our journey that we need to remember and recognize on the Hearing Birthday.
Celebrating is not just about the ice cream cake we would eat that week, but about the purest form of redemption—when you make a choice as important and serious as using spoken language for communication for your deaf child and the grave decision to do elective surgeries as a part of that choice, there must be redemption. It is only fair that no one, as Glennon would put it, should feel like a door is slammed in your face because you made the “wrong” choice. I still do believe that redemption comes for all families of children who are DHH, just in different forms, according to the choices that they feel are right or that work for their child. The stakes are high when you choose the surgery over the much less medically risky route. Looking down the path in front of you, you can anticipate the glittery magic that may come as part of the path and it eggs us on to continue to take the next tentative steps. Here is the real magic of the redemptive path for my children who are DHH as I see it in the past and in the future…
4)
I thought about the fact that we were going to
Disney World in less than a week!!! I
love the Magic Kingdom because of the illusion that Disney manages to create
with everything they do. Just a few days
later, I would watch my five year old Ella stand in front of Cinderella’s
castle, with her Minnie Mouse dress on, and look in awe as the classic
princesses (Snow White being her favorite) encourage her to force the evil
queen to run off by joining with the hundreds of other children to say, “I
believe dreams come true”. Mickey Mouse told her it would work. She heard the show. She followed the directions she heard. She saw magic happen, as far as she could
tell. She made all of those connections
on her own without me interpreting or coaching her. She felt pure joy because of the illusion
that she was able to easily enjoy, just like her hearing older sister who stood
right next to her the whole time. I
believe in dreams coming true, too. Abso-darn-lutely.
5)
I thought: Wyatt is making incredible progress
in his language development. On his
birthday, he responded to the question, “How old is Wyatt?” by holding up one
finger and then clapping with us when we cheered for him. He is saying so many words. I need to recap his hearing journey from this
year in a future post, but let’s just say it has been a much smoother path than
Ella’s for sure. His latest word is
“out” with a very clear “t” sound. He
wants out of everything. Especially his
car seat on long trips. We spent all of
Father’s Day driving Avery to Grandma Camp in North Carolina, and we heard the
word “out” from the car seat about 87 times, averaging about 15 times an
hour. Annoying to most parents,
including me at times, but also so completely adorable and also quite
remarkable for our boy. Early
intervention is magic—it teaches parents to be miracle workers and then the
miracles just happen. They say
words. Repeatedly. In appropriate context. Amazing.
I planned to laugh a lot at what he said in the car seat on the way to
Orlando. And respond to it, like a good
EI mom should.
Ok, so now we are here in Orlando. My people are about to get up because the
light is starting to come. Yesterday we
were in Magic Kingdom, and don’t get me wrong, the Magic got real y’all. The best part about Magic Kingdom to me is
how parents and kids manage to take away amazing memories in spite of the “real”
that happens there. I will remember the
girls’ faces on Splash Mountain, and Wyatt splashing in the puddles, and how
amazed they were to see Cinderella’s castle.
But, let’s be honest, there are still diapers to change, and fights over
who sits in the double stroller, and stifling June heat to deal with. In our family, there were tears over having
to walk too far, and a slap among sisters who wanted equal time spinning the Teacups,
and did I mention, it was hotter than
Hades. We got sent out of the FastPass line at Splash Mountain because my
children were wearing swimsuits and not street clothes. Who knew? (Turned down for what??) There were implant batteries to change and
ear gear to switch out for the Casey’s Soak Station. There were at least one or two cumulative
hours stolen from my life by public restrooms that I will never get back. Not
to mention the giant, mortifyingly massive fit resulting in physical removal
from the hotel pool for one child. Yup,
that’s how we do Magic Made Real in the Muse fam.
It’s my birthday. We will be in Hollywood Studios and Animal
Kingdom today. Then tomorrow, we will
head to the location of the AG Bell Convention at the Swan and Dolphin. We will see lots of families of children who
are DHH of all ages and we’ll get to ask teenagers questions about how they
like listening to iPods with their implants. We will see the latest CI models
that let kids swim and hear at the same time.
We will watch kids talk with me and then sign with someone else. We will meet friends that we have not seen in
four years and have them meet Wyatt and see how much the girls have grown. We
will see Mickey Mouse greet kids with ear equipment and make them feel special
without noticing their differences. We
will catch glimmers of the hope and joy and kinship in the eyes of other
parents. We will hear inspiring talks
from researchers. I. Can’t. Wait. For the continued magic of this week.I am profoundly reminded of the last time we attended Convention in Disney World, four years ago. Eleven days after Ella’s CI activation, on June 27, she was able to do this….
Another convention, another one year old with hearing loss
in our family who is developing language right before our eyes. I am presenting on the Family Journey at the convention on June 27. Everything comes full circle, no? And just to make sure we remember that the magic is not all instantaneous, we finally get Wyatt's broken hearing aid back
this week. Poor guy has been living with
a lot of feedback from his loaner. But,
he is still pretty darn happy and chatty.
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Below is a pic from the 24th. My little pixie, Ella, is on the left and her brother Wyatt (makin' it real by closing his eyes for every pic I took) and big sister Avery in the middle.
Real. Magic.
*********************************************************************************
Below is a pic from the 24th. My little pixie, Ella, is on the left and her brother Wyatt (makin' it real by closing his eyes for every pic I took) and big sister Avery in the middle.
Real. Magic.
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