This Is My Story, This Is My Song

Legislative advocacy

2011-02-23T13:40:00.000-06:00

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...

2010-05-19T22:39:00.003-05:00

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!

2009-10-07T13:37:00.002-05:00

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

2009-06-10T11:28:00.012-05:00

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!

A Request to Blog!

2009-05-25T10:02:00.004-05:00

I have to say, TulipGirl made my day (maybe even my weeek!) I had a comment this morning that someone actually checks my blog! Whoohoo! LOL!! I am such a bad blogger! I think about it often and then I get busy on something else. I realized that my last post was the beginning of the school year and now here we are winding down. So much has happened this year!

Chelsea did go to private school, had a rough start because of the higher academic expectations, overcame and made some huge strides, got a part in the school play, had some awesome teachers, made some friends, and now she has decided to go back to public school for her senior year. It's not what I would choose for her, but we promised her the choice if she would try private school for a year. I am proud of her for trying it and how far she has come!

Foster has had a great year. He and his best friend, G. have survived the year with friendship intact. They get regular playdates after school and he sees G. on Wednesdays when the homeschoolers come to campus for their programs.

Faith has not let the hearing loss slow her down at all! Neither has Ella! Both girls recently scored above age level on all of their language tests. I am still worried about Faith's pre-reading skills, but all I have to compare her to is Foster (not the norm! His reading scores came back at 9.o recently, yes that's a 9th grade reading level - he's only in second grade). Everyone tells me she is just fine and right on track so I am trying not to worry! Ella is communicating up a storm. Just in the past month of so it seems she made the shift from repeating things that she hear to expressing her own ideas. Now she isn't completely talking in understandable sentences, but she definitely gets her point across! There other day Faith was at Granny's and Ella and I were at our house. Ella comes up to me with the phone. "Bai(t)... Bai(t)...!" (That's Ella's way of saying "Faith", the (t) is very soft.)

Me: Faith is at Granny's, Honey! What are you doing with the phone? Oh, do you want to call Faith?"

Ella nods furiously and hands me the phone. I call explain to my mom that Ella wants to talk to Faith and Faith gets on the phone. I hand the phone to Ella.

Ella: Bai(t)? Bai(t)? Where you?

Faith: I am at Granny's.

Ella: Wha' doin'?

Faith: Playing outside.

Ella: Dogs?

Faith: Yes, I am playing with the dogs.

Ella: Dogs! (I think this meant something like "Pet the dogs for me!" It was a statement where as the previous "dogs" was definitely a question.)

Faith: Okay!

Ella: Bye-bye! Ha' guhh da! (Have a good day! We always say this in the morning when dropping the kids off for school and Ella has picked it up. In her vocabulary, it goes with "bye-bye". LOL!)

Faith: Bye!

So there you have it! A complete telephone conversation from my hard-of-hearing 20 month old! I was so proud and a little amazed! Even all the therapy and testing and assurances from professionals didn't ease my fears as much as that innocent exchange between sisters on the phone. She's doing fine!

Here's a fairly recent photo of Ella. You can see her sparkly ear molds if you look closely.

Back to Schol!

2008-08-26T09:57:00.003-05:00

The first day of school and with it come some major stress in our household! Our oldest daughter, Chelsea, made a huge decision to change school her junior year. I have to tell you that I am so proud of her in that decision. Foster has been attending a private school since Pre-K but Chelsea would never consider 'wearing those goofy uniforms everyday' (her words, not mine). Well, toward the end of the year last year, she approached us and said she thought she wanted to give it a try! What an answer to prayer! I have long felt like it would be a much better environment for her but only if it was what she wanted. Trying to force her into it would have been a huge disaster. It was a rough year for her, loosing Shelbie, seeing her other friends making poor choices, and another less than stellar experience with a poorly qualified math teacher. I think she knew she would be better off doing something different. That all being said, it doesn't make change any easier! The first day of a new school is scary! She was nervous but I am sure by now, she has already settled in and is making tons of new friends, because that is the way Chelsea is, but that is also what the kids at the private school are like, too!

Foster is in second grade and looking forward to a great year in his class. His very best friend, G., is homeschooling this year, so there is a little sadness that he won't see G. during the school day, but I have talked with is mom and we are going to get them together as much as possible. Foster is in the same class as G.'s twin sister so I think that will help some since he can 'keep in touch' by proxy. LOL!

Faith's school situation is still a little up in the air. I thought we had everything worked out before the end of the school year last year. ARD team had met, placement had been worked out, FM system decided on... until last week when it all fell apart! The plan was for her to split time between a mainstream pre-school and a school for kiddos with hearing loss, until another child with hearing loss applied for a full-time spot and bumped her (since she was part-time, he got priority). I am being told there are compatibility issues with the FM system and the school district is proposing what I consider to be a less than acceptable solution. Of course all this is coming down the pipe days before school is starting for her after months of thinking everything was taken care of! Friday I had my fill of it and gave in to my first 'totally-loosing-it-crying-breakdown' moment of parenting a child with special needs. I am sure it won't be the last! On Monday, I pulled myself together, dived back in and started dealing with it to get my girl what she needed. We haven't given up on the hearing impaired school yet, so hopefully we can get something worked out. On a more positive note, we ordered new ear molds last week and Faith chose pink and purple swirls with purple sparkles! I can't wait to see them! LOL!!

Ella is also starting school this year! Yes, the baby is going to go one day a week to the same mainstream pre-school that Faith attends. I think she will love it; she loves being around other kids, especially ones more her size since Foster and Faith are always running over her!

Since this is our first 'new school year' as a family with children with hearing loss (at least that we knew about it), I am trying to find that balance of informing the teachers, coaches, Sunday school workers, etc. about hearing loss, hearing aids, what works and what doesn't and how it affects not only learning but behavior too. How much information is enough without giving them so much it overwhelms them? I also don't want the people who work with my girls to fall into the mindset of defining them by their hearing loss, they are so much more!

Anyway, it's almost time for the first round of pick-ups, so I gotta run! Yes, typical of the back-to-school routine, it never slows down! LOL!!

Ella's Big Day!

2008-06-13T10:19:00.005-05:00

June 12, the day Ella got her hearing aids! Now since Ella is only 9 months old it was not the huge hearing breakthrough that happened with Faith, but I do think she can tell the difference in how she hears.

The first photo is of her sitting in Granny's lap is just after the first aid was put into her left ear for the first time. Her eyes got big and she looked around; it seems by the look on her face that something is different as Granny is talking to her. She quickly decided, however that putting in the earmolds was no fun at all, and having stuff in her ears was less than pleasant. Ella may hold the record for figuring out how to remove new ear molds faster than any other 9 month old! After a while, she began bothering them less and less. Maybe she will eventually get used to them (I hope!!). She has also already figured out that they make handy teethers.

That brings me to her other big news this week; Ella has teeth! Her first two bottom teeth came through on Saturday. She is all of a sudden much more interested in 'real food'; I guess since she now has teeth she thinks that she ought to be using them! Last night she sucked/gummed/teethed all the inside mushy part out of a french fry and enjoyed it very much! LOL!

Faith also got her new hearing aids yesterday! Now, all three of us have matching pink Epoq XW's (the girls didn't get a Streamer though, that's Mom's toy!). We all have sparkles in our earmolds too, but they are all different collors: Faiths are pink with pink sparkles, Ella's are light pink and clear swirled with silver sparkles, and mine are clear with pink sparkles! Faith said she could tell a difference in how she hears between the Safran and the Epoqs. I think it was a good decision to go ahead and move her up (now just praying insurance pays the difference, I could fill a whole nother blog on my adventures with the insurance company! LOL!). Faith is really looking forward to her camp at the Hearing School next week; I think it will be good for her, even if it is just that she gets to be around other kids with hearing loss (but I know it will be a whole lot more!).

The 'Process'

2008-05-31T13:05:00.003-05:00

My cousin has a friend who has a new baby that has been diagnosed with profound hearing loss. She told me about it a get-together we were at last night and I couldn't stop thinking about this family; I felt a really strong need to reach out to them so I called, got their number and called them. I had a wonderful conversation with the dad and I look forward to talking with the mother soon. Connecting with another parent who has been there, done that, and got the t-shirt helps so much when you are facing issues with your child. Talking to someone else who 'just gets it' without having to explain all the acronyms and the reason for all the tests and why they look for all the seeming unrelated things that might actually be related to hearing loss... yeah, it helps

After talking with this totally awesome dad (hey, he was at home on a Saturday afternoon by himself with the kids in the middle of changing a poopy diaper when I called! That's pretty awesome in my book! LOL!), it caused me to reflect on our own journey and how I got to where I am in relation to the girls' hearing loss. I realized that I had blogged mostly about the process but not about the 'process'. What I mean is, I have talked about the appointments and tests and medical stuff - the physical process we have been going through - but I haven't really talked with anyone about the emotional process you take as a parent with a child diagnosed with hearing loss.

I think I'm doing okay on the outside, at least I hope I do, I feel like I hold it together pretty good for the most part but that doesn't mean there hasn't been bad days; days when I want to stomp my feet and shake my fist and say "Why me? Why my children? Why US!?!?" So just a glimpse into some of the millions of things floating around in the mind and heart of a mom with two children with hearing loss:

Sheer terror - At the initial diagnosis, hearing the words "your child has severe hearing loss" really initiates almost a fight-or-flight response. You don't know what to do, you don't hear most of the words the professional tells you after that, you certainly don't know what questions to ask, and since neither the fight or flight response is acceptable in a medical office from modern human beings, your brains does the next best thing and just goes into a kind of shut-down surreal sense of other-world-ness. It's my opinion that this is your body's way of removing you from a situation that you haven't figured out how to handle yet since you, as a modern human being, have sufficiently suppressed the urge to kick the audiologist in the shins or run screaming from the office.

Depression - I go into kind of a survival mode when I am overwhelmed and depressed, doing the bare minimum to keep the family and household going. I am told that individuals and parents with children of hearing loss go through a grieving process and it is normal to feel all the same emotions as a person who has lost a loved one. It makes sense because loosing something as important as a basic sensory function is a pretty big loss!

Guilt - Why didn't I catch it sooner? I thought something was wrong earlier, why didn't I push for a more thorough hearing evaluation then? I mean I live with hearing loss, I should have known!!

Frustration - Why won't anyone listen to me? I knew something was wrong! Why didn't the doctor say "unreliable" on that first screen instead of "Oh, she just lost interest". I mean I LIVE with hearing loss, I KNOW what I am talking about!!

Guilt(Part 2) - As the parent, is there something I did? Could I have prevented it? Was it something I took/didn't take, ate/didn't eat, breathed, whatever, while I was pregnant? Was it my genes? This is true for me especially since I have hearing loss myself, I feel especially responsible for the girls' loss.

Frustration (Part 2) - Why can't I get an appointment sooner? Why can't I get straight answers from insurance? Why won't insurance do what they say they are going to do? Why does it take so long to get test results? Why can't someone tell my why this happened and what to expect? And where to we go from here?

Relief - It's only hearing loss, it could be so much worse. There are so many parents facing much worse circumstances.

Guilt (Part 3) - Why am I so bent out of shape; it's 'only' hearing loss? It could be so much worse! I should be thankful.

Vanity - Will people still think I have a beautiful baby when she gets her hearing aids? Will they see her gorgeous blue eyes or will they only see the aids on the side of her head? Will people make assumptions about her that aren't true? Will they see past their aids and see what wonderful, beautiful children they are?

Fear - Will they be okay? Will they learn to talk 'normal'? Will kids make fun of them for being different? Will they have a problem with school? What do we do when we go to the pool?

Now I know there is a while lot more, this list just touches the tip of the iceberg. A big one that I left off was "denial". I honestly didn't spend a lot of time with this emotion, I really think I knew in my heart long enough before I could get anyone else to take it seriously that denial was pretty much beyond my capability. My husband, on the other hand, lived here for quite a while. I think that is somewhat normal for dad's though. It seems that mom's have that sense, they know something isn't right, and when their fears are confirmed, they go into hyper-mothering mode and want to comfort, research, prepare, and reach out and connect with other mom's facing the same thing. Dad's just want everything to be right. Dad's fix things and if it isn't fixable by Dad then they don't know what to do with it, so they deny anything is broken. (I'm not saying kids with hearing loss are broken.)

So, I realize this post has focus a lot on the negatives. There has been a lot of surprisingly positive moments on this journey as well. Happy, joyful times that are so hard to explain to someone outside of the world of hearing loss; the look of joy on Faith's face when she really heard for the first time, hearing a string of consonant babbles for the first time, finding out insurance would pay for much more than we thought! But my intent was to be real, and I think a lot of times people only put out the 'sunshine and roses'. I think it is okay to go through some negative emotions as long as I don't get too hung up on them and stay there. Recognize them, deal with them, then I gotta pull up my big girl panties and get on with life! My family needs me. My kids need me. They need to hear me tell them that they are fearfully and wonderfully made by a Creator that doesn't make mistakes. He has a plan bigger than ours and he knows the opportunities that lay ahead for my children, hearing or not. All we can do is trust in that.

Foster knows Laminin

2008-05-26T15:25:00.002-05:00

Foster came in to the kitchen Monday morning, it was Memorial Day so there was no school and I let the kids sleep until they woke up. So in he comes and the first thing out of his mouth this morning was "Mom, there's something on the computer I have to show you!" No "good morning" or "what's for breakfast?", just that he had to show me a video he saw a school. So he goes into the computer and starts to looking for the video he saw. Well, I ask a few questions and he said his teacher showed them (so I breathed a sigh of relief, these days you never know what kids will come across on the internet) and it was on "God Tube" (another sigh of relief!). I pulled up www.godtube.com and then we set about looking for his video. I asked what it was about and he said "laminin". Well, I have a biology background and I wasn't even sure what laminin was, but he told me it was a protien so I typed "laminin" into the search field on God Tube. Several vidoes pop up, a couple of them showing a man with the title "Louie Giglio - Laminin" beside the photo.

"That's it, Louie Giglio, that's the video I want you to see!" Foster said excitedly!

So I played the video and listened. The more Louie talked the more amazed I became. Yes, laminin is awesome, but what was even more awesome to me was that my seven-year-old son saw this video, understood the significance, remembered the scientific name of a protien molecule, remembered the name of the preacher, and thought about it days later and wanted to share it with me! I truly believe God is preparing Foster for a wonderful future, he has a heart and understanding of the things of God beyond his years.

I hope you are encouraged by Mr. Giglio's words as much as Foster and I were!

Louie Giglio - Laminin

On a Scrap Related Note... GASC time!

2008-05-24T09:56:00.002-05:00

I can't believe it's almost June! But I am excited because June means it's time for the Great American Scrapbook Convention held annually at the Arlington Convention Center. This year the show runs June 5-7 and if you are a scrapbooker but have never attended, it really is worth it! This year I am really looking forward to GASC for another reason - it marks my return to the teaching circuit after taking close to a year off due to Ella's arrival. I have missed teaching and the scrapbook community greatly! I would love to see some of y'all in my classes, too! Here's the Rusty Pickle line-up for GASC 2008:

Princess Layout

Jumbo Cards

Love, Love, Love Mini Album

All Boy Layout

Happy Mother's Day

2008-05-11T16:02:00.003-05:00

It's Mother's Day! I cherish motherhood. It sounds cliche but it is the hardest job I have every done but also the most rewarding by far. All those things you hear people say before you become a parent take on new meaning when you start experiencing them yourself.

I am settling in to my new place here in Holland. (If you haven't ever read the story "Welcome to Holland" written by the mother of a child with special needs, you should google it. It is another one of those things that take on new meaning when you experience it for yourself.) I am beginning to feel like audi appointments, hearing aid fittings, special educational meetings and other doctors appointments are just a routine part of life. Honestly, it's not so bad. I do know there are many parents facing much scarier, more dibilitating diagnosis with their children. My heart goes out to them. It reminds me of the photograph of my own parents with my older brother just a few weeks before his 3rd birthday. When I was a child, I never understood the strange look of forced smiles on my parents' faces as my brother smiled happily standing between them in short pants and knee sock (which to this day, he blames for ruining his life! So I guess Mom wasn't completely perfect, but he did look cute!). When I became a parent myself and understood the context of the photograph, I was amazed that my parents were able to smile at all; you see, the picture was taken on the eve of my brother's heart surgery. Since I was 6 years younger, I only knew of that time from stories of how my brother gave the nurses a fit in the hospital and his scar running around his chest. My mother never talked about how scared she must have been, but after becoming a mother myself and looking into her eyes in that photograph, the eyes of a young mother about to hand over her tiny only child into the hands of a heart surgeron, she never had to explain.

After doing much research and finding 'professional' after 'professional' recommend things like 'language-rich environments' and programs that stress important sounding ideas such as 'language models' and focus on 'vocabulary enrichment activites', 'narrating daily activities' and more. Then reading the descriptions of intentional activities designed to help HOH kids develop language, I realized, "These are things my mother does with my children naturally. Isn't this how kids are supposed to be raised?" I had told my mom one time, even before we found out about the girls' hearing loss, that if she could bottle and sell her style of child care, she could make a fortune! My brother and I were both early readers; I was a regular Reader's Digest fan before I even started school. So was Foster; at the end of kindergarten he tested as reading on a 5th grade reading level and has always been well advanced in language acquisition, both receptive and expressive. I credit most of that to the way my mother cares for him. I hesitate to say 'teach' because I don't want you to think it is a set aside time of planned activity. She just naturally realtes to her grandchildren so that they learn language in everything they do. And beyond that, she does it in ways that they think are fun! The 'narration of daily activities' is something that was always a part of my life and now my children's lives as well. Her imaginative stories are so good that for years I have been encouraging her to write children's books. I always thought it was my mom and her silly stories and fun chatter; who would have thunk...? Here's a tip though: if you ever pass a cemetary with my mom and there is an elderly man sitting in a lawn chair, make a quick comment about the weather or the pature on the other side of the road, anything really, trust me on this one! But seriously, I believe that the reason Faith is doing so well inspite of her hearing loss is that she has been immersed in a sort of informal verbal therapy since she was born, without us even realizing it! All thanks to my mom!

Mom, I can not begin to thank you enough for the gifts you have given my children - especially the gift of language! You have helped me be a better mom, too! Thank you for all you do!

HAPPY MOTHER'S DAY!!

About That Storm

2008-03-31T11:47:00.003-05:00

Well, I mentioned in my earlier post about the storms I have been weathering. Here's the deal. Last summer, I was having suspicions that Faith was having trouble hearing. No one else saw it and basically made me feel like I was being paranoid because of my own loss. I even took her to the pediatrician specifically for a hearing screening. They said she did fine at first then "lost interest" but they were sure there was nothing to worry about. It didn't help because I kept seeing things that I thought were not quite right and I kept worrying. Mothers know these things. In February, we had her annual check up and I was determined to get a referral for a hearing evaluation. The ped. beat me to the subject when he recommended speech therapy. I told him I really thought the problem was with her hearing and was showing in her speech so he referred us to the Callier Center.

A week later we were at Callier, an absolutely precious audiologist worked with Faith through a battery of tests: tympanogram (how the ear drum responds)-normal, OAE-refer (sounds emitted back from the ear, refer means it wasn't normal), then a sound booth test using play resonse with another audiologist. Even though I thought Faith had a problem, I was stunned as I saw the pattern developing on the audiogram throughout the testing. Faith has bilateral hearing loss, meaning both ears are affected. She started near normal (20 dB) with lower frequencies then plummeted to 55-80 dB above 1500 Hz. Well over half of her hearing range is in the levels moderate or severe loss. I felt like someone had punched me in the gut. This was much more devastating to me than learning of my own hearing loss. In a whirlwind, the audiologist was talking about hearing aids, ear mold choices and all kinds of things I just wasn't ready to hear. We left with impressions already made for ear molds and an appointment for her to come back to be fitted with loaner aids until I could wade through insurance stuff. The precious audiologists recommended testing Ella as well, so we set an appointment for her too.

In the time between our visits to Callier Center, Faith saw my ENT. He ordered a whole slew of tests to rule out different syndromes and causes: CT, EKG, US, blood work, other lab work... lots of stuff that is just all around scary for a 4 year old! I was a nervous wreck and Faith got to where she was asking each night, "Do I have a 'pointmen 'morrow?" We even had to do the CT twice, the first time we tried it, Faith just freaked out because they tried to strap her to the table. I don't blame her one bit, it's scary, but since she couldn't move at all or the test would be useless, they had us come back and put her under sedation. Talk about a stressed out Mommy - I HATE having to sedate my kiddos for anything!

I do have to share a quick story about the EKG. When the tech was hooking up all the leads, she was explaining to Faith that she was going to measure the electricity in her heart. She asked Faith, "Do you know you have electricity in your heart?" Faith got a very doubtful look on her face and said, "Nooooo, I have God in my heart!" Out of the mouths of babes!

If there was a turning point for me in this journey, it was our second visit to Callier Center. The day Faith got her loaner aids. Her face absolutely lit up and she was so excited she could hear! She kept naming all the things she could hear, like the people talking in the hall. Everyday normal sounds were amazing to her! I remember how she felt, hearing my car blinker or my computer keyboard after getting my own hearing aids, only hers was different because she most likely has NEVER heard these things. Words cannot describe her pure joy in hearing, something so many people take for granted. I know I did before my own hearing loss.

As wonderful as that moment was, it was short lived as I joined audiologists working with Ella in another room. My mother had been with them, but they weren't having much luck getting Ella to cooperate so we traded kids. I was able to get her to quite down and take interest in the booth test but as it went on, my heart began to sink. There were frequencies she definitely wasn't responding to. The OAE was similar to Faith's-refer. After the tests, the audiologist delivered the news I already feared. Her hearing was apparently well below normal, in a pattern similar to Faith's (and mine). Because of her age, she wanted to order an ABR, which measures brain response, to confirm the results. I now have two daughters facing life with hearing loss.

It didn't take long to type out the update but it seems like it has taken forever to get here in real life! LOL! And we still have a ways to go. Tomorrow is our follow-up with the ENT to hopefully get some answers from all those tests. We have an appointment next week with a closer audiologist to talk about ordering Faith's permament aids. Ella has her ABR scheduled and her first appointment with the ENT, which I am thinking will probably be followed by a battery of tests like Faith. We have also already started the process to get services through the school district.

One of the first questions others have asked is, "What about Foster?" We did have his checked to be safe and get a base line normal for future comparison. He tested pefectly normal, although he did explain to the audiologist that he already suffered from male-selective-hearing when asked by his mother to do things he really didn't want to do. That kid!

Thank you so much for all the prayers! I know without a doubt that prayer is one thing that has sustained me over the last few weeks. I know God is in control. The verse we chose for Ella's baby dedication reminds me of that:
8 "For my thoughts are not your thoughts, neither are your ways my ways," declares the LORD. 9 "As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. Isaiah 55:8-9

Girls Just Want 2 Have Fun

2008-03-30T16:56:00.002-05:00

Here's that layout I promised. Just a fun page of an afternoon hanging out at the park. Paper is from Fancy Pants and Ki Memories: Love, Elsie; Pink glitter chipboard - Doodlebug; Felt Flower - Prima, and QuicKutz Merry Alpha.

Have a great Sunday!

I am a Bad Blogger!

2008-03-25T09:10:00.002-05:00

Okay, so it has been forever since I posted anything to my blog. Most of the time I feel like there is nothing that interesting going on in our lives that need to be blogged about. Then when something does happen, it usually has be so busy or over whelmed that I just don't have the time or motivation to blog. Talk about a Catch 22! LOL!

Well, in the midst of our current struggles, I have been feeling quite overwhelmed, to say the least. It is so comforting to me though how the Lord always finds a way to deliver a message that I really need to hear in a perfect way. Sitting in our MOPS meeting, feeling the world crashing around me, watching all the other pre-school moms with their perfect little children, talk about their perfect little husbands in their perfect little world (well, not really, I know they have their share of problems too, but sometimes it just seems that way), not really listening to the speaker, until she mentions Peter. Peter was in a boat in a storm, and when he saw Jesus, out in the waves walking on the water, he wanted to be with his Lord. He cried out to Jesus, asking to come to Him. It's like Peter knew he would be better off on the raging waves with Jesus than in the boat without Him! So Jesus called and Peter stepped out of the boat. Now this is the part of the story where I can really identify with Peter. Once he was out of the boat, Peter realized the fury of the storm around him; he took his eyes off Jesus and focused on the problems instead. And that's when things went south, Peter started sinking; and that's what I had been doing - watching the storm and sinking in my troubles instead of looking to Jesus.

Well, I would like to say I have learned my lesson and since that day I have been resting in the joy of the Lord without worry. But I can't say that truthfully. I can say I am doing better, but I still have to remind myself to turn things over to Him daily (hourly, minutely... is that even a word? "minutely"?). :)

I have even got a got of my creative mojo back and scrapped a page, the first in quite a while. Maybe I can get it posted later for y'all to see.

Hug your kids!

2007-10-19T23:50:00.000-05:00

This is a difficult post to write. Our 16 year-old daughter's very best friend took her own life recently. She was a beautiful young girl, inside and out. We just keep asking ourselves what was so bad in her life that she felt that giving up was the only option? And why didn't she let us know so we could try to help her deal with it? As a parent, the pain is two-fold. You have to watch your child deal with a grief you cannot take away. Anytime a child dies, there is the reminder that as hard as we try, there are things we still cannot protect our children from. As a parent, I try not to dwell on the things beyond my control and do my best to make safe the things I can. The rest I leave up to God and I try to make sure my kids know how very much they are loved. But I am sure Chelsea's friend's parent thought the same. There are just no guarantees. I do not believe God causes bad things, but I do believe that even the most tragic events can be used by Him for His glory. My prayer and comfort these past two weeks has been just that, for some friend or family member to be touched in such a way or the opportunity for a spiritual discussion to take place that otherwise would not have happened. I am so proud of how Chelsea has handled this, a terrible pain that no young person should have to endure; but she has been a true example of Christian love, reaching out to her other friends and Shelbie's family who are hurting. Scrapping has been a form of therapy for me and so it was with this page. I needed to honor this sweet girl that did not realize how very much she was loved. This is for Shelbie:

The visible journaling is from the Michael W. Smith song, "Friends" and reads, "Friends are friends forever If the Lord’s the Lord of them And a friend will not say never ’cause the welcome will not end. Though its hard to let you go In the Father’s hands we know That a lifetime’s not too long to live as friends."

There is hidden journaling behind the photo that says "You hurt because you lost your best friend. That is an indescribable pain that no young person should have to experience.
Chelsea, your dad and I mourn with you for the beautiful young life that was lost too soon. But there is an even deeper pain you will not know until you become a parent yourself. We hurt because we have to watch you suffer and we do not have the power to fix it. We are terrified because the loss of a child reminds us that it could be our own. How a parent faces that is a pain I cannot imagine. Our job as parents is to protect you, but the reality is that there are some things that we cannot protect you from and that scares us. The world will tell you lies and have you believe otherwise, but always know you are valuable, you are worthy, we are proud of you, and above all you are loved."

Please say a prayer for Shelbie's mother and father as well as her younger brother and sister. Then give your own loved ones an extra hug tonight!

Pure Innocence

2007-10-13T16:18:00.001-05:00

It's been a while since I posted. I could blame it on the C-section, it is uncomfortable to sit at a desk or table. But just as much to blame is that I just love sitting and holding Ella! I love watching her little baby expressions; I love to hear her little squeaks and grunts; I love the feel of her curled up on my chest; I love to smell her baby scent. Knowing that I will not have another baby only makes it worse. I want to savor every single moment, and with older kids, I know all too well how fast these moments will be gone. I finally felt good enough to scrap my first page of Ella; trying to capture the feel of those precious newborn moments.

The chipboard shapes from Rusty Pickle are covered in Doodlebug glitter. Stamps are from Autumn Leaves. Title is a combintaion of Rusty Pickle letter stickers and a welded word cut with my Wishblade.

Ella Jae is here!

2007-09-07T16:38:00.000-05:00

Ella Jae Wylie arrived at 4:44 p.m. on Tuesday, September 4th. She weiged 6 pounds and 6 ounces and was 19 inches long.

Ella with her big sisters and brother!

Ella and Faith: Faith kisses Ella every chance she gets and is so super excited to finally be a big sister!

I will post more later! We just got home and I promised pics as soon as possible so here are just a few quick ones. Ella is a perfect doll and I am feeling great! God is good!

"It's Baby Day!"

2007-09-04T08:48:00.000-05:00

Today is the big day! Foster stayed with my parents last night and when his Granny woke him up this morning he said, "It's Baby Day!" I thought that was really sweet. I have been worried about his reaction more than the girls because he still says he really wants a brother. I told him that some day he will make some girl a really good husband since he will be so used to dealing with females. (That is if momma ever lets him get married! LOL!) It makes me feel better knowing he really is getting excited about the baby coming.

Anyway, my C-section is scheduled for 1:30 p.m. this afternoon, which was really nice since my other choice was ~7:00 a.m. - which would have meant getting up to go be at the hospital waaaay too early! The only drawback to it being later is that I am already dying of thirst and I want my Diet Coke, but I would rather trade sleep for a soda. I will post photos of the new bambino here as soon as I can to share with everyone, but it may take a few days. Mark is not very computer savvy and I will be in the hospital several days so please be patient.

On another note, I wanted to share a tragic story with you and let you know how you might help, plus win some awesome Rusty Pickle schtuff in the process! Another one of the Rusty Pickle chefs has a very close friend whose husband was the victim of a senseless, random act of violence. He is now paralyzed and has a long recovery ahead of him, besides a family with 9 children to take care of. You can read more about the news story here: http://www.heraldextra.com/content/view/232793/3/

You can also follow Tracy's progress on the family's blog:
http://tracyarmstrong.blogspot.com/

Lance and Tasha Anderson, the owners of Rusty Pickle, wanted to do something to help Tracy and his family, so several events are being organized with everything being donated by Rusty Pickle! Legacy Scrapbooking is hosting a raffle for $500 worth of Rusty Pickle products. You can purchase raffle tickets online here:
http://legacyscrapbooking.com/catalog.php?category=298

There are also 2 local events being planned for Utah and Arizona. Lance will be teaching classes donated by Rusty Pickle. Watch the Rusty Pickle blog and website for more information on those!
http://rustypickle.typepad.com/

Well, I have some last minute nesting to do before it's time to head to the hospital. I honestly have an almost surreal sense of peace, now that it is almost time for her to be here. Thank you so much for all the thoughts and prayers through my pregnancy. Please keep them coming, because I keep telling my husbamd - it's not over, it's only just begun! LOL!

We have a TIME & date!

2007-08-18T14:06:00.002-05:00

Well, at my OB appointment on Friday, he gave me not only a date, but also a TIME for this bambino to make her debut. I was okay with the concept of a date and a scheduled C-section, but knowing that my name is now written down on a schedule in a hospital and doctor's office makes it all a little too real. We still have so much to do to get ready! The kids are excited, especially Faith. She is so cute and gets so excited when we see a baby out in public at a store or resturant. She has to tell the mommy, "I'm getting one of those! I'm having a baby sister!" She is always coming up and hugging or kissing my belly. I haven't had many pictures taken of my pregnant self, so I had Chelsea snap a few to share. I had to capture Faith being so cute. And yes, I am the size of a house!

Me at 35 weeks and a few days

Faith kissing her baby sister

Foster & Faith saying hello

And just beacuse every time a camera is produced, these 2 think it ought to be pointed at them!

Chelsea & Faith

Oh, the date! September 4th, the Tuesday after Labor Day - unless something unexpectedly happens before then, that will be this baby's birthday.

And for another announcement: the winner of the Rusty Pickle RAK!

The winner is... happyhappyjoyjoy !!! (Joy, be sure and email me your snail mail address!)

Check out Joy's blog: http://obsessedwithscrapbooking.blogspot.com/

Thanks to everyone who read and posted! There will be more Rusty Pickle fun in the future.

It's My Birthday & I'll Blog If I want To!

2007-08-11T10:38:00.000-05:00

Yep, today is my 38th birthday and I thought it would be the perfect day to unveil my new blog! I have been on the fence about blogging for a long time. I haven't really thought there were that many people out there all that interested in what was happening in my life to consider keeping up a blog. A few things have happened recently though that pushed me off the fence and convinced me to take the bloggin' plunge. So here goes...

My reasons for blogging:

The impending birth of our new family member. Blogs seem to be a great way to share news, photos, etc. and who doesn't love a place to brag shamelessly about a new baby? As soon as I can, the announcement will be made and pictures posted. Obligatory "ooos!" and "aahs!" will be expected so be sur eto post your comments! (JK! :D )

As a member or the Rusty Pickle design team (they call us "Chefs"), I have some online obligations that blogging can help with. There is a new company blog soon to be debuted that has links to the other Chef's blogs and I felt like a slacker with out one. I will be hosting challenges, posting Rusty Pickle news, and sharing my work here. You can see a few of my layouts at the bottom of the page.

I left a job in the scrapbook community recently and I wanted a way to hopefully keep in touch with some of those friends. I am not sure what I will do in the future as far as the scrapbook industry goes, but I hope to return to teaching after the new babino is old enough. I want my peeps to know where to find me when that happens!

I hope to use this as a way to document some family moments and other ideas I have for future projects until I get around to scrapbooking them. Even if no one else reads much, my online journal can help me stay motivated and remember all those mommy-moments that you think you won't ever forget (but you do!). Since this is my 3rd time to give birth, I realize all too well how quickly the time flies, memories fade and details are lost. I cannot believe Foster is already 6!

My statement at the right says "I just want to make my corner of the world a better place". Maybe something I share here will touch someone else and help them through a rough time, be a word of encouragement, let them know that they are not alone, and there is someone else out there dealing with a crazy life, chaotic schedule, less-than-perfect-kids, and a marriage that takes work. I am not perfect by any means but I am forgiven, and that gives me a peace and hope to handle anything this life throws at me!

So that's my first post! If you want, you can subscribe to get emails when I update my blog with new posts by entering your email at the right (that way you'll be among the first to see pics of the newest Wylie!). To both my real-life and on-line friends, I hope you will check back occasionally and leave me a note to let me know what is happening in your life!

Now for the challenge! Anyone who leaves a comment on this, my inaugural blog post, will be entered to win a RAK of Rusty Pickle stuff! Yes, it is a shameless ploy to increase blog traffic and get you to post a comment so I don't feel like I did all this work for nothing, but hey, if it works, it works! LOL!! Plus Rusty Pickle released some rockin' new lines at CHA which I am so looking forward to playing with and I wanted to share the love (check back soon for more on those). I will pick a winner on Monday evening, so you have 2 days to post.