Faith's New York Room

So, we are a month into living in West Texas (tomorrow is one month from our closing date) and we are settling into the new-to-us house - the house was built in 1976, so I can't call it "new", LOL, but we fell in love with the layout and big - no, HUGE! - rooms. I haven't gotten any one room completely finished yet, but every room has had some progress. Initially I thought I would wait until a room was "done" before posting anything, but since that may take a while, I decided to go ahead and start sharing - plus Faith really wanted me to show off her room! She is so proud of it, and I think she is doing a great job designing her New York-themed retreat!

Here are the before pictures, to give you some perspective of how far we have come:

Faith in her new room on move-in day:

We decided to make Faith's room serve double duty as the guest room, so I wanted to put a queen size bed in there. I had a great solid-wood queen bed that had suffered an accident while being stored in the garage in Grapevine. If you look closely, you can see the bead of glue across the back of the headboard showing where it had broken all the way across, a piece of paneling had come completely loose, and one of the finials had broken off. There were also a couple of pieces of the wood detailing that had broken off that were refastened and several places needed wood filler. Since it was already in bad shape, it gave me the courage to try something new with it. I love how it turned out!

I didn't get a good before pic, but here are some shots as Gramps was working on it:

We painted the chair rail and bottom of the wall, repaired & painted the bed, and added the details to complete the theme. We also took down the brass ceiling fan and replaced it with the black fan from the kitchen, which was replaced with a different non-fan fixture. The ceiling fan war between my husband and I is an ongoing struggle in this household - I won the kitchen, but that is the only room I gained so far! This house had ceiling fans in every single room except the dining room and bathrooms - even the laundry room has a ceiling fan (although it is next on my hit list - insert maniacal laugh here!!)

I think my old street lamp is what prompted Faith to choose the New York theme to begin with. This lamp stood in my room during my youth and then went to college with me! Mom only agreed to let me have it because she thought I would quickly get tired of having it in my room and she wanted to put it out front, but I loved it for a long time and now it has been passed down!! LOL!

There are still a few things we have planned for Faith's room, but here is the "almost-finished" product!

"I feel famous!!"

 

The New York canvas was a gift from Granny!

New York City skyline wall decal from art.com (Faith added more stars after this photo was taken):

Another shot showing the whole decal on both sides of the window:

A close-up of the "crystal" finials on the bed. These are intended to be curtain rod finials and were purchased at Bed, Bath, & Beyond, as was the Statue of Liberty throw pillow (and the canvas gift from Granny).  The skyline pillow came from WalMart. We found a great deal on the comforter set on clearance at Macy's, and even though it is actually a king size, I like the way it fits the bed.

Faith couldn't wait to show off her finished* room!

*Well, almost finished! We still have to hang her marque sign "F" and repaint the dresser that will go in here. She also thinks she needs a fuzzy teal rug for the foot of her bed and maybe a bench... I think I have created a designing monster!!

Legislative advocacy

I have been bitten by the advocacy bug. In 2009, I had the opportunity to attend the first ever Texas Advanced Leadership and Advocacy Conference (TALAC) conference hosted by the Center on Disability Development at Texas A&M University. During that conference, we visited the capitol and identified areas of legislative advocacy that were important to us that we might want to get involved in. Before the legislative session was over, I testified before the House Insurance Committee in support of a bill that would require insurance coverage "for the treatment of speech, language, and hearing impairment". Even though the bill never made it out of committee, it was an awesome experience and it gave me the inspiration to continue legislative advocacy efforts.

The Texas Legislature convenes for regular session every two years, so 2011 is the first new session since my TALAC experience. In the time since TALAC, I have been researching the laws that have been passed in other states, as well as considering the past effort in Texas to secure insurance coverage for hearing aids. I decided I was going to give my best effort to make something happen in Texas. If there was one thing I learned from TALAC, it's that the lawmakers do want to hear from us "little people". They are so used to hearing from the professional lobbiest and and the companies/industries that that have a vested interest in legislative changes, that is a breath of fresh air for them to see a "real person" take the time to make contact and make their voice heard.

I have started a sister blog to chronicle the efforts so I won't repeat everything here, but please, check out "Texans Support Insurance Coverage for Hearing Aids" for ongoing information on our progress.

I will summarize the issue here though:

Current law: The current insurance code in Texas requires that insurance companies offer group plan purchasers (i.e. employers) the option of purchasing speech and hearing coverage. There is no requirement as to when the employer is notified of this coverage or that they be told how much it would cost. The employer has the option of not accepting the coverage or, if they choose to add any coverage for speech and/or hearing services, to negotiate any level of coverage they wish. This assumes that the benefits representative for the employer realizes that the offer of coverage, which is typically buried in the final paperwork, is available or that these services are not already covered under a typical policy. This negotiation takes place between the employer and the insurance company; the employee is never offered the option of coverage if the employer chooses not to elect coverage for speech and hearing benefits. The vast majority of employers do not offer this coverage, even though the change in premiums is minimal.

Proposal: The proposed bill has two parts. This bill would:

• Require insurance companies to notify group plan purchasers of the offer of coverage at the time of initial quotes and bid the policy with the speech, language and hearing coverage included as an option. This would allow employers the ability to make a more informed choice as to what benefits they wish to provide for their employees. This provision, if passed as written, would apply to covered individuals over the age of 18.
• Require insurance coverage for minors under the age of 18, or those over the age of 18 if covered as a dependent for the treatment of speech, language, and hearing impairment. The coverage under this provision these services would be provided at the same rates as other illness covered under the policy.

If you are willing to join the effort by contacting your state representative or senator, please let me know!

I had an appointment with the audiologist today...

I had an appointment with the audiologist today and, while it wasn't what I hoped, it confirmed what I really already knew. I have had a significant drop. My last full audi exam was in '08, so here is how it compares (frequency: '08 result/today's result/amount of change, NMR = no measurable response):

Right ear:
250 Hz: 15 dB / 20 dB / -5
500 Hz: 15 dB / 20 dB / -5
1000 Hz: 20 dB / 40 dB / -20
2000 Hz: 55 dB / 70 dB / -15
4000 Hz: 80 dB / 110 dB / -30
6000 Hz: 75 dB / NMR / >-35
8000 Hz: 70 dB / NMR / >-40

Left ear:
250 Hz: 20 dB / 25 dB / -5
500 Hz: 25 dB / 30 dB / -10
1000 Hz: 45 dB / 50 dB / -10
2000 Hz: 55 dB / 65 dB / -10
4000 Hz: 85 dB / 110 dB / -25
6000 Hz: 100 dB / NMR / >-10*
8000 Hz: 100 dB / NMR / >-10*

*I only think these weren't any worse because they were so close to non-existent before.

So, this is the first time I have had a test where there were frequencies that were absolutely, totally gone. Before, they may have been jet-engine loud, but hey, there was still *something* there! I have known for a while that I wasn't hearing as well, but to see it confirmed in black and white is just hard. No, it's more than hard, IT SUCKS! (And I hate that word, my kids get in trouble for saying it so don't tell them Mommy used that word here, okay?)

I left the audi's office and went and browsed a bookstore for a while just to give myself time to absorb it. Thankfully, my mom had the kids so I had a rare few minutes alone, plus my cell phone battery had died, so I had a good excuse not to have to call and explain my results to anyone right away. It makes it more real when you tell someone else, you know.

We have new insurance that has coverage for hearing aids, which was one of the reasons I scheduled this appointment, to see if power aids might give me more benefit. The audi said he really didn't think they would help much more than what I was getting from the aids I had now, since I was getting fair amplification in the ranges where my hearing was still registering.

I asked about a CI and especially what he knew or thought about the new hybrids. The audi said it would be worth a consultation and suggested I call the clinic doing the trials for the hybrid CI. I am not sure I am quite ready to go that route yet, but I am closer than I was. It never hurts to gather information.

Mostly I am just tired. I am tired of being the one to make my hearing loss look 'easy', the one to make all the accomodations in communicating, the one putting forth all the effort. The audi told me those words I have heard many times that I now cringe at: "I don't 'look' like my loss". In other words, I cope really, really well for as significant as a loss as I have. It doesn't mean I hear any better, just that I have found ways to not let on to other people that I don't hear, and tonight that is not something I am proud of. Part of me just wants to leave my aids in a box and start being deaf so no one else will expect me to hear!

I am in the midst of a huge pity party and in a few days the world will be okay again, but tonight I am in mourning for all those dB's that I heard as recently as two years ago that now are no longer accessible to me, that sliver of sound between '08's slope and today's lines on a grid that means much more than just a mere pen mark. It's a slice of more consanants I won't hear, more meaning that will fly over my head, more requests for something to be repeated because I didn't quite catch that. I am mourning the connection to my loved ones, the accquaintances that might have become close friends and the people I haven't met yet that I may pass by because I don't want to trouble them with the effort it takes to communicate in my world, my not-quite-deaf-but-definitely far-from-hearing world. And today it just got a little farther...

A Proud Momma Moment!

A little background: Foster plays for his school's third grade football team. The girls formed cheer squads for each grade's football team, so the third grade girls cheer for the third grade boys. But if you have a male sibling playing football, they will let the girls from other grades cheer for their brother's team (Thank the Lord!) so that means my 5 YO kindergartener is cheering on a team with girls serveral years older and a few in between. There are three high school and middle school cheerleaders that help coach the girls and they are fantastic with the young ones! I love them to pieces but they are teenagers and don't always understand Faith's hearing loss and how it affects her (not their fault at all), but they do make an effort and I appreciate all they do. So that sets up my proud-momma-moment.

Monday Faith had cheer practice. Ella had fallen asleep in her car seat, so rather than wake her up, I let Faith out and parked where I could watch from the car and let Ella keep sleeping. Faith was at the end of the line (where she usually is because she is one of the smallest) and it was becoming obvious from her behavior that she couldn't understanding what was going on. I had a mommy-dilema; I couldn't leave a sleeping baby alone in the car, but Faith was struggling and needed help!

I was feeling bad about not being in a position to intervene when I saw Faith get one of the teen's attention. She talked with Faith for a quick moment, then I see her move Faith the the center of the group right in front of the other coach leading the practice. Faith quickly caught up on the new cheer they were working on and this momma's eye's got teary.

When Faith came bounding to the car after practice finished up, I asked her non-chalantly, "What were you talking to Baily about during practice?"

Faith answered, "I couldn't understand Shannon and so I told Bailey an' I asked if I could move an' then I could hear her better 'cause I was close to her an' then I could do my cheer!"

WOW! Faith spoke up in a group of older girls she doesn't know very well to say she couldn't hear and needed to move closer to the coach! Talk about being a great self-advocate! I was so proud! I was glad I got stuck in the car so Faith had the opportunity to do that for herself without mom stepping in.

It also makes me laugh because self-advocay goals are one thing I personally should be included in just about every child's IEP, of course they would be tailored to fit the child's ability levels and their needs. Whenever I have brought this up to our committee, I am told by some of the 'professionals' that Faith is much too young to be expected to advocate for herself. (I do have to say we have an awesome deaf ed. teacher that recognizes that Faith is capable of self-advocacy and has said as much.) I can't wait to share that little story with some of them! :)

For a person with hearing loss, the skill of being able to speak up and ask for help when you need it is not as easy as hearing people often think, regardless of age. For a five-year-old to be able to speak up is huge! One of my biggest goals is for Faith to feel comfortable and confident as a hard-of-hearing person, and this little act helped reassure me that we have at least planted the seeds.

El shaddai - God is Sufficient

Our God is so good! I am amazed by the care He takes to comfort me in times of despair. Mark was laid off from his job last week and quite frankly, I am scared to death! Then on Sunday, I was driving out to my mother's house and a small miracle happened. The drive itself was unusual in that I was driving the Mustang and didn't have kids with me. Since I was in the Mustang, the radio was on (the on/off button is broken and if I managed to turn it off, Mark would shoot me!). Because of my hearing loss, I very rarely listen to the radio since it is just meaningless noise most of the time. The only songs I can really enjoy are old songs, ones that I learned and remember from before the onset of my hearing loss. The radio station Mark usually listens to is a contemporary Christian station and I honestly wasn't paying any attention to the songs - they were all recent releases I didn't know and couldn't understand. Then a familiar melody began to play. A simple song carrying a very strong message delivered just as I was wrestling with the fear of how my family was going to survive.

You see, God knows me, He knew my fear, and He knew that I could not be comforted through the words of a new song - I wouldn't be able to understand. In order to reach through my pain, He used a song from my memory, something that would bypass my hearing and touch my heart.

El shaddai, el shaddai, El-elyon na adonia,
Age to age you're still the same, By the power of the name.
El shaddai, el shaddai, Erkamka na adonai,
We will praise and lift you high, El shaddai.

Through your love and through the ram, You saved the son of Abraham;
Through the power of your hand, Turned the sea into dry land.
To the outcast on her knees, You were the God who really sees,
And by your might, You set your children free.

El shaddai, el shaddai, El-elyon na adonia,
Age to age you're still the same, By the power of the name.
El shaddai, el shaddai, Erkamka na adonai,
We will praise and lift you high,El shaddai.

Through the years you've made it clear, That the time of Christ was near,
Though the people couldn't see What Messiah ought to be.
Though your word contained the plan, They just could not understand
Your most awesome work was done Through the frailty of your son.

El shaddai, el shaddai, El-elyon na adonai,
Age to age you're still the same, By the power of the name.
El shaddai, el shaddai, Erkamka na adonai,
I will praise you till I die, El shaddai.

El shaddai, el shaddai, El-elyon na adonai,
Age to age you're still the same, By the power of the name.
El shaddai, el shaddai, Erkamka na adonai, I will praise you till I die.
El shaddai.

El Shaddai by Amy Grant

From Hebrews 4 Christians: The All-Sufficient God (click on the link to read more)

and from another source:
El-Shaddai means God Almighty. El points to the power of God Himself. Shaddai seems to be derived from another word meaning breast, which implies that Shaddai signifies one who nourishes, supplies, and satisfies. It is God as El who helps, but it is God as Shaddai who abundantly blesses with all manner of blessings.

He is sufficient! He will provide! He will bless us if we are faithful to trust in Him! What an awesome God we serve! I hope you take a moment to watch the video and be blessed!