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!

A Request to Blog!

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!

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!

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'

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.