Sunday, November 21, 2010

I'm dreaming of...

Now that we've got the emotionally heavy stuff off our chests (which was wonderful, by the way, Aub :) ... I'm feeling a little frivolous. What can I say? The holidays are merrily approaching, as holidays are apt to do. It's seems that every time I turn around someone is pestering me about Christmas lists. To top it off, I recently read this post by my sister-in-law, Kim, which got me thinking about all the lovely (and not-so lovely) splurges around the holidays. With all these frivolous thoughts swirling about, inevitably, my thoughts turn towards the Great Wish List that I try to avoid thinking about for the rest of the year.

First off, I'm needing some (in the words of the immortal Georgia Nicolson) fabbity-fab shoes.

Or, more realistically, some wear-everywhere flats
Why don't we top it off with one of these cozy little numbers, perfect for winter snuggling with...

...a good book, of course.
Not to mention, my husband knows the quickest way to my heart on chilly nights.

How about y'all? What are some of your Wish List items for this holiday season?

Thursday, November 11, 2010

New Mantra: Personal Experience Part 3

Our new mantra has become: "Now we know why..."

1. Our kid has been a great sleeper since birth, nothing wakes him up. Phone calls, doorbells, vacuum cleaners, thunderstorms, tornado sirens... now we know why. (And here we just thought we were really great at this parenting thing).
2. He only had two volumes, loud and louder... now we know why. (Much to our embarrassment while sitting in the middle of church).
3. He loves loud music with a good strong beat... now we know why.
4. He wouldn't open closed doors, even though he was tall enough and knew how, unless we were behind him instructing him to open the door, he wouldn't do it... now we know why. (Turns out most children won't open doors if they can't hear what's behind the door).
5. He never babbled (not like his sister does), he just screamed (see #2)... now we know why.
6. The few words he did start speaking were mainly made up of vowels, because that is what he could here (for example a dog barking wasn't "Ruff" it was "uuu, uuu")... now we know why

We have found humor in the situation as well. For example, I told my husband the other day that when our son is school age and the students ask him what is in his ear he can say that it is an earpiece for the government and he is actually a secret agent, and then pretend to get a secret message and run away. We've also realized that when he is a teenager he can take out his hearing aids and pretend that he can't hear us when we say something he doesn't like.

The days go on and things are getting better. Like any big change your in life, it just takes some adjusting to, but the fact is you do adjust. When I first started writing this little series of mine, I intended it to be a one-article story. However, as I started writing I found I had more to say than just "here's what happened." It has been very therapeutic for me and I thank all of you who have read it through and supported me with your comments. My intention in writing this was to let everyone know you are not alone out there. Raising children is hard and things don't go exactly as planned. For whatever reason we seem to convince ourselves that this time life will do as we tell it to, but the Lord kindly reminds us that He is in charge. In part 1 a reader shared a link for the following story, I will end my comments here, but for anyone who is interested please continue reading. It spoke to my heart, and I can't wait to see what Holland holds for me.

c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Wednesday, November 10, 2010

Processing: Personal Experience Part 2

Then the emotions hit. According to the Kubler-Ross model I should be undergoing denial, anger, bargaining, depression, and acceptance. I seem to be making up my own stages as I handle my son and his hearing loss. I never went through denial or bargaining. The doctors showed me the results from four different tests and I can't argue with scientific proof. There is a small part of me that says "are you sure?" But the larger part of me wants to take action, it says "what do I need to do?"

Instead I go through anger, blame, guilt, frustration, and acceptance.

Anger - I'm angry with the doctors for not listening to me sooner. I was the one who initiated contact with an audiologist, no thanks to my pediatrician. I am angry with the health department and their not-accurate hearing test. Fluid on the ears?! HA!

Blame - this is the hardest one for me. I blame the doctor (see anger). I blame my husband, maybe he shouldn't have tickled our son so hard, thrown him up in the air, wrestled with him, the list goes on. As time goes on I blame him for working while I handle the doctors, insurance reps, babysitters, and therapy. It's a silly blame, but I often feel so alone in this. But mostly, I blame myself. Was there something I should have done differently? I had a rather perfect pregnancy, but maybe I should have drank more water, refrained from having that corn dog, been more careful about heating up my deli meat. Then there is the whole issue of the labor and delivery. Did his hearing loss occur after being in labor for 28 plus hours and pushing for two? Should we have opted for a c-section sooner? I can't bare to think about it. Or was it when my milk supply started to dry up and I didn't know it, not until he started losing weight? So many things go through my head. The geneticist reassures me that unless I was abusing drugs or alcohol or deathly ill during pregnancy, there was absolutely nothing I could have done differently.

Guilt - you would think the guilt would come from the blame, but this guilt hits me on my blindside. My son has only mild permanent hearing loss, as I start to talk to other families I realize their child's hearing loss is much more severe. They are going in for surgeries and wearing cochlear implants. I suddenly feel guilty for taking this so hard, for stressing out over the day-to-day maintenance of it all. It could be so much worse, who am I to complain?

Frustration - this one is much more complicated. It's the every day routine we are now in. It's the struggle to keep a two year old from pulling out his hearing aids, of searching the store for size 13 batteries, of cleaning and maintaining the hearing aids. It's the hours I now spend in the car as I take my husband to work, my daughter to the babysitter, my son to therapy, home from therapy, pick up our daughter, pick up my husband. How do I know when my son is being a two-year old and ignoring me or simply can not hear me? It's the application of the newest technique they've taught me at therapy, the phone call from his mother's day out when they can't get his hearing aids back in, the exhaustion of it all. It's the opinions I get from all sides of what I should or should not be doing. Sign language or no sign language? It's the realization that grandparents now seem to be afraid to take the kids for the weekend because the hearing aids intimidate them. But mostly, it's the frustration that both my son and I receive when communication fails. I can't understand him and he can't make himself understood.

Some days are rough. My husband comes home from work and takes over the bedtime routine. I curl up in bed, hiding from the stress that threatens to crush me. My husband comes in and holds me till it passes. He somehow transfers some of his strength to me. With a good night's rest, I will be as good as new to handle a new day.

Acceptance - it comes little by little as we fall into a routine. The hearing aids are staying on more often than not, his speech is progressing slowly, and we are making progress. I am learning as I go and have quickly learned to take it one day at a time. Line upon line, precept upon precept. I turn to the Lord in my thoughts and prayers more often. Our son will never remember a life without hearing aids and for him it will become second nature. I hope that one day soon it will become second nature for me as well.

Tuesday, November 9, 2010

Whirlwind: Personal Experience Part 1

"Your son has mild permanent hearing loss." The words bounce around in my head.
"Oh, okay," I say. "What does that mean?"
"Well, we want to run a few more tests to confirm our findings, but it will mean hearing aids and auditory and verbal therapy."
"Oh, okay." My daughter lurches forward and fusses, I hand her a toy to distract her. The audiologist peers at me closely, concern in her eyes. She is under the impression that I am taking this all rather well. I smile and nod as the audiologist and speech pathologist explain the steps we need to take from here, show me a chart of what my son can and can not hear. The information is thrown at me quicker than I can absorb.

It's not until I am strapping the kids into their car seats that my heart starts to drop. My son has hearing loss? HEARING LOSS! It was the last thing I expected to hear. Sure he had never passed his newborn hearing screening and is behind in his speech, but by golly, the doctors kept telling me it was just because of fluid in the ear. Take care of the fluid, take care of the problem. I was expecting at most that he would need tubes in his ears.

I call my husband at work. "How did it go?" he asks.
"Good, he was such a trooper, they did four different tests on him, plus some more stuff. Umm, can I pick you up for lunch?" I can't explain it over the phone.
"Sure..." he sounds hesitant. I am worried he has something going on, I can't go the whole afternoon without talking to him, my husband, my help meet. "No," he reassures me, "I can go to lunch."

He gets into the car and I start in on the explanation I've been reciting in my head for the 25 minute car ride to his workplace. "He will need hearing aids and therapy," I recite.
"Are you serious?" my husband asks.

Then come the phone calls, my side of the family, his side of the family. I spend all afternoon on the phone, explaining, answering questions I barely know the answer to myself. My mom's response is, "Are you serious?" Do I sound like I'm joking? By the end of the day I'm emotionally exhausted. We are going out for dinner that night.

Within weeks, the hearing aids are fitted, therapy is scheduled. There will be two different sessions, a one-on-one therapy and a class therapy. The important thing is to prepare him for school. Both sessions will be held weekly. Insurance does not cover hearing aids or anything hearing related. They will only cover the therapy if it is listed as a specific type of speech therapy. I will need to find a babysitter for our daughter twice a week. The audiologist instructs us on how to fit, clean, and take care of the hearing aids. The batteries must be replaced weekly. There is special cleaning solution and dry crystals and a container that the hearing aids must be kept in nightly. We will need to do a genetic test to make sure the hearing loss is not a sign of something bigger.

I suddenly feel very overwhelmed.

I've been in contact with the state's early intervention program. They will subsidize the therapy and hearing aid costs until he's three, when we will be turned over to the school districts. He will be reevaluated when he turns three.

It's been a few months later and I am still processing everything. An interpreter for the deaf asks me if I have reached the acceptance stage yet. I tell her I don't know. I've been told that we will go through the same stages of grief as one who has lost a family member to death. Denial, Anger, Bargaining, Depression, Acceptance.

I'm not sure where I'm at in those stages, I'm just acting. I'm just taking it one day at a time, trying to do what's best for my child, and all the while worrying that it won't be enough.

Monday, November 1, 2010

Question & Answer: Election Time!

This question comes from an anonymous source:
What do you think about the upcoming elections? What is your criteria for a good governor?

Admittedly, we haven't been keeping up on politics as much this year. I feel like I have failed in my duties as a citizen, but the campaigning has been so nasty this year it's easier for me to tune it out than to listen.

So, to answer your question, we have a guest columnist today. My husband Carlin (who is also an engineer, hence the very technical response), makes a point to keep up on this stuff.

Carlin, take it away...

Election season. Ah, election season, when all the politicians try to convince you that words speak louder than actions. I have been able to vote now for 10 years and most of the time try to keep myself informed, but rarely pick sides early on. I'm not an 'activist' or tout any single political 'agenda'. I think there are merits and pitfalls to both (all) sides of the aisle. This year, 2010, however something changed. I think it's changed for a lot of people. The low-level hum of the political machine leading our nation in Washington has slowly grown to an obnoxious, tumultuous noise in every school, office and home. Something, in my view, happened to re-ignite the fervor/anger/passion of us normally 'passive' citizens. Some people point to one or two single things, like so called 'Obamacare' or the Bank Bailouts in late 2008/early 2009. But I think it's more complicated. There are so many things nation wide that points to the slow deterioration of the Bill of Rights. Judges ruling against our ability to photograph police action. Rulings that covert GPS tracking does not require a warrant. Our freedom of speech has been curtailed to 'as long as it doesn't offend me (and my lawyer)'. The adage "I disagree with you, but will fight to the death for your right to say it" has been amended to "I will fight to the death so you can not say it". All these and more are a catalyst that will ultimately enslave this nation as a Nanny-State, or, conversely lead to a revolution more wide-spread and violent than the one in the 1770s.

The most interesting facet of the elections tomorrow is to see whether or not the voting people give credence to the Tea Party's endorsements/rhetoric, either establishing them with real political power, or writing them off as a one-hit wonder. Again, I understand a lot of frustrations that the Tea Party gives a voice to, and think some things they say are a bit off. Some will mock those frustrations, when they run counter to their agenda, and others will fight for them. That's the wonderful thing about this Country though. We have these powers and freedoms as a people to do so. I think too many of us, including myself, were caught being apathetic toward the policies and laws being passed and rulings being made. We think "Well there are checks and balances in the government and it all evens out". But zoom out for a minute. Get a nation-wide view. Who checks and balances the government itself? What entity has the power to fire the House of Representatives every 2 years, the President every 4 years and the entire Senate every 6 years? Who keeps the metric system down? We do! Sorry got carried away with a Simpsons reference, but my point stands. When the people are apathetic and don't research and get involved to educate themselves on a little politics and social theory, the long arm of the law becomes longer and longer and longer. Power is intoxicating and sometimes our leaders get drunk. I think the elections and ballots is the true spine of this Nation and serve to balance (or disrupt) an otherwise run-away train of lawmakers.

A good Governor for any state or province largely depends on the individuals' personal requirements. Do you want the Governor to enforce XYZ law? Do you want him or her to support XYZ agenda? But since you asked me for my criteria for a good Governor, here:
•Engineering degree (critical thinking is required, with a heavy emphasis on facts).
•Police/military background. Knows what he or she is doing when giving orders and if those orders are feasible, adds 'executive' experience.
•Be a parent. The two Oklahoma gubernatorial candidates had a little spat over this, and yes, Mary Fallin, it was a dirty fight to pick, but I think the underlying issue is the elephant in the room. Nothing changes your focus, alters your world, or gets your head out of the clouds quite like having someone so completely helpless literally dropped into your lap. You think twice about pulling that trigger, you think twice about spending that frivolous dollar. Most leaders do have children, some don't, but I think all would be served to treat our state's budget like the family budget and the military like their own kids.
•When something goes wrong on his/her watch and it's his/her fault, have the freaking guts to get on TV and apologize whole-heartedly and unequivocally. Someone I know told me "Chivalry for the ages is accepting more blame than is yours and handing out more credit than is due."

Aubrey again, just to add one last thought. I have found that this year I am putting so-called "logic" to the side. Too many politicians who promise one thing and then do another, am I really surprised? No. But I've come to realize that what's more important to me right now is that I vote with the party who best represents my ideals and morals. This country was founded on religious principles and I best stick with said principles when voting.

Remember, tomorrow, November 2, is the big election day. Get out there and vote, voting one way or another is better than being apathetic and doing nothing at all.