Bliss!

Have you ever been so overwhelmed with joy and blessings that it brings you to tears? Yes this has been me. My eyes water a lot these days and it's not because I'm sad, but because God is showing me such grace and love through all that he is providing. When I look at our current situation I can see how God is tying all the beautiful details together. From the financial aspect, the exceptional therapy and Early intervention program, the incredible families we are meeting, and the excellent medical attention Marae is receiving. I only hope that I can be as patient and generous as the families we have been surrounded by. What an amazing community Seattle has of CI families. It has been a long time since I was able to blog. The circus continues here and some weeks it is challenging to have any time to sit down and process my thoughts. A lot has happened in the past 10 days...

To start with, we recieved a letter in the mail from Childrens hospital notifying us that for the next 6 months any costs left over after our insurance will be paid in full by childrens. What a blessing! We are so blessed with amazing insurance through Boeing and we usually only have $200 out of pocket costs per person per year or $675 deductable per family. However, when it comes to hearing aids, insurances dont cover all of it, only a portion. So Childrens has graciously offered to pay the rest of any of our medical bills. The earmolds are also often times not covered by insurances and those are $150 per ear and Marae will have several made before she is implanted. This is SO nice for Luke and I not to have to mess with this right now. We can use that money towards the larger house we are quickly needing to purchase. After the 6 months we can reapply for the aid again.

So if you are like me, you are probably asking what this would mean for Maraes implant surgery. Well, it means that if our insurance doesn't cover the surgery, Childrens will. However, they fully expect our insurance will. We had our apt with the cochlear implant clinic at Childrens last Friday. We got to see the inside implant component up close and try on the outer ear piece. I was surprised at how comfy it was on my ear. We discussed the upcoming process. I'm a bit overwhelmed with all the apts, and therapy that will have to be done after the implanting takes place. Marae will be bumped to 3 auditory verbal therapy sessions a week and one audiological or Dr. apt per week and then per month for probably the first year atleast. Normally this wouldnt be difficult but when I have two other kids in tow, it means finding babysitters and lots of them. Kay will be in school by that time and that will be helpful. Luke and I were feeling very excited after the apt.

They discussed with us the different ways this surgery can happen. Most kids at Childrens have one implant done at a time (because insurance only allows one at a time or one to be implanted before the age of 1 year). Sometimes you get lucky and you can have both implants done at the same time before 1 year of age. This is what we are praying for because it would be easiest. Marae will have an MRI/CT scan done at 6 months just to make sure the inner ear structure is normal. After that, a surgery date will be set and our insurance will be notified. Till then we can put in a preliminary request so we know what our insurance policy is regarding implants. But I'm not worried about this. We have discovered that Childrens is wonderful at helping middle class families like ours achieve their child's medical needs with minimal cost to the family. Praise God!

Today we have a psychosocial evaluation with the psychologist at Childrens. IT sounds a bit scary but it's basically just to discuss with us our feelings about the situation, the implants, and how our family and Marae are doing with the diagnoses. I know at some time before Marae is implanted I will see a delay in her language skills, but thus far this has been like raising the other two kids. Normal! Except having to place hearing aids every morning. She responds to sounds and makes all the same kinds of sounds the other kids did. I am so thankful for the early infant hearing tests. Luke and I would have never known of Marae's loss until she was older and we would have missed this important window of time to work with her.

Which brings me to the next thing. We finished our IFSP (individual family service plan). We wrote it up with the help of our amazing Family Resource Coordinater, Dena, and our wonderful therapist, Star. I just can not believe we ended up with such wonderful people working with us. Dena, Star, and Kim (Listen and Talk Infant early intervention coordinator) are three of the kindest, loving, and generous people I have met. They are so invested in Marae and just as I celebrate at Marae's milestones, so do they. Amazing women! I love that Marae has a whole team around her helping, loving, and cheering her on. From the therapist, counselors, physicians, surgeons, and audiologists. Pretty amazing. Our major IFSP statement and goal is to have Marae speak and hear spoken english. No sign, which is a huge burden off us for now. We want her to learn it later, but spoken english will be her first language and she needs to rely completly on her learned listening and speaking skills without the aid of sign. Our goal is to have her saying first words like momma and dada by the time she is 1 year old as well as repeating sounds we make and following directions when given. Pretty exciting! By the time she is 5 she should be abover her peers in her auditory verbal skills because of all the therapy and special attention she is receiving. (Janet White and Marae)

For memorial Day weekend we joined my dad and his wife Janet at a condo they were at for the week in Birch Bay. The kids had a great time swimming in the outdoor pool, and I enjoyed some time off from the kids. I still had to care (two of my favorite things, Marae and a Mocha to go)

for Marae, but I had the rare moment to sit in a coffee shop with some peace and quiet and one adorable sleeping baby. :) IT was of course great to see dad and Janet. I am so thankful for them and how they love on us and our kids. Janet has taken my kids in as her own grandkids and invests so much of herself in them. I am so appreciative of both of them. After birch bay we came home and spent Monday with our friends, The Latvalas. We hiked up to Twin Falls and then had a BBQ at rattle snake Lake. The kids also got to (The BIG kid Hikers: Noah Rust, Niko Latvala, and Kay Rust)

"pretend fish" with their new fishing poles. The event ended with one soaked Niko (fell into the lake) and one WET Kay (peed her pants). Seriously, never a dull moment as a parent! I am happy to say we all survived the hike and the 4 of us adults managed to keep all 5 of the kids alive and safe on the sometimes treacherous hike. We love (The Latvalas: Henri, Paul, Niko, and Jen)

the Latvalas and were so glad we got to spend this time with them.

Since I've typed this up, we had our psychosocial evaluation. I'll have to save all that for another day, but it went well. Off to get miss Marae to bed!

Holland

Yesterday was our LONG appointment withe the hearing loss clinic at Children's hospital. I am happy to say the ball is finally rolling for Marae to get her cochlear implants. We have a meeting with the surgeon next Friday and then a psychosocial evaluation the following Tuesday with a psychiatrist at the CI clinic. I have made it known that my desire is to have the surgery done and the implants activated before Christmas so Marae can hear her first Christmas. I think it may actually happen as long as our insurance cooperates with us. My boxing gloves are ready to go and since we are jumping on this so soon, I'll have a good while to fight for Marae. The insurance WILL eventually pay but we are fighting for an early implant (before age 1).

I'll spare you the boring details of our 4 hour long apt. in which we were confined to a small room most of the time. But I will touch on a few points. Maraes blood is being tested to see if she is carrying a virus she can contract from me during pregnancy. This virus looks like the common cold to me but it steals your growing babies hearing, damaging the hair cells in the cochlea. There is no reason that I would feel great about for Marae's hearing loss. But I hope it is this virus instead of a genetic cause. If it's genetic it becomes something that could occur for our future grandchildren, or effect any unborn family on Luke or my side (depending on who the gene came from). If the test comes back negative than we are getting approval with our insurance to have the $4000 genetic testing. Regardless of genetics or not, this wont stop Luke and I from continuing to build our family. In fact if they told us that without a doubt our next child would be born deaf just like Marae, we would absolutely want that child!

We had the opportunity to meet a psychologist at Children's who is deaf and has been deaf her whole life. She was beautiful and it was amazing to watch her talk to us with her hands. We had an interpreter of course. It was just amazing for Luke and I to see and to realize we have entered this deaf world and we will forever be apart of it regardless of the implants and Marae's access to sound.

Marae had her first in home visit with her speech pathologist. This woman started Listen and Talk school and program. She use to be an audiologist and has 30 years of experience working with kids 0-3 to help them develop their hearing and speech skills. She asked me how I was doing with the grieving process. I told her that it was much like the grieving process I experienced with my mom. I told her there were times it didn't bother me and other times when something would trigger the tears again. I told her about my fears and the strong sense of self we will raise Marae to have. I told her how we are raising her for more than this life and in the next she will be free from hearing problems. I really like her and am so excited to have her expertise for the next three years. She shared something with me and I thought I would share it with you all. This woman who wrote this is referring to the grief of raising a child with any kind of disability. I still have a hard time calling Marae's hearing loss a disability but I suppose it is, though I'm not sure how exactly it will disable her in life.


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



I would only add to this that I am in Holland because this is exactly where I was meant to be. Holland for whatever reason is a better place for me than Italy. I'll try to remember that in the ups and the downs of this Journey.

I have new things to work on with Marae this week and I am happy to say that a woman with 30 years of experience observed Marae with her aids in and said she definitely felt she was responsive to sound. Praise God for that!

Since it is more than 70 degrees outside, I'm off to the park with the kids. Thank you Jesus for Today and three amazing children you have entrusted in our care.

Listen and Talk

Ok, I'm pretty excited. We visited the Listen and Talk school and we LOVED it! First of all I thought it was located in Bothel, come to find out it's in North Seattle near the UW. Much much closer to us. Only 30 minutes in rush hour traffic. I got to see in person children with implants talking (without the deaf accent), singing, laughing. It was pretty amazing. It made me so excited for Marae. There are 6 classes in all with 6-9 kids in each. The children range from 3-5 in age. There is a teacher with her masters and assistant in each class so each child is getting a lot of attention. They focus a lot on literacy so children leave the school with extensive vocabulary. More so then most of their peers. There is an on sight audiologist who can problem shoot hearing aid/ implant technical difficulties. They have hearing testing booths and equipment. There are also several on sight speech pathologists who do auditory verbal therapy with each child individually. Kay loved the school and got to make a bee with some of the kids. There are also a few natural hearing children in the school as well. The tuition prices looked good so maybe Kay will attend preschool there 4 days a week next fall. This is something Luke and I will have to talk more about, but we hope to get Kay in preschool next Fall. I think Listen and Talk will give her an exceptional foundation before entering elementary school. I am so thankful we have such an awesome resource so close to us.

Our next big event for this week is Marae's appointment with the Hearing Loss clinic at Childrens hospital. We will be meeting with a surgeon, ENT Dr., Audiologist, speech pathologist, family counselor, and educational advisor. It will be a 4 hour long event Wednesday morning and THE appointment that will get things processing for Marae's Cochlear implant candidacy. We would appreciate prayers that this appointment would accomplish much.

Hearing???

I can't be sure Marae is actually hearing any sound till the BAER hearing test. This was the test her hearing loss diagnoses was based off. She will have it repeated in June with the hearings aids in. BUT, I believe in my heart that she is hearing some sounds when her hearing aids are in. Her whole demeanor changes and after we place the aids and begin saying her name, she becomes still and her face lights up with a smile. I cant help but think she is hearing us. The ENT has told us that our observations are vital and are just as important as any test they perform. She seems to love when I slide my voice up and down or growl at the kids. Sometimes the dog even joins in and starts howling with me. I've noticed she is starting to copy simple sounds that come out of my mouth and not always when her hearing aids are in. This means she is noticing already the shape my lips are making. It's amazing how she will lock on to my eyes and even without aids in, she will have so much to communicate. We have fun making faces at each other and she loves it when I bat my eyebrows at her. It makes her smile every time. I am definitely enjoying every moment with her.

Here is a video of us talking the other day. I have yet to catch one of our really great conversations on video, but here is a start.


Tomorrow we are headed to a preschool we are looking into for Marae (yes already!). It's called "Listen and Talk". They use only auditory verbal therapy, no sign. There are are many CI implant kids who attend and we are thinking it will be the optimal place for Marae to hone her speaking and listening skills. This school also has a parent infant program for early intervention and it's the program we are looking at doing. We're hoping the preschool will give us a taste of what the infant program will be like. If you are interested in seeing what the school is all about, here is the link. There are videos on the website of the kids singing as well as videos of the type of therapy they do at home with kids. http://www.listentalk.org/index.html

Deciding which early intervention program we will do has been much more difficult than I thought it would be. We are spoiled in the Seattle area. There are three amazing programs and each one of them has something amazing to offer its' participants. What it comes down to is how we want Marae to communicate. For the first 3 years this program will help her develop our chosen way of communication. Luke and I have chosen to do the implants and for Marae to learn spoken English. At first I thought, "why would people chose to keep their child in the world of silence?" But I have discovered that there are all sorts of reasons why a family may opt not to do the implants. There is a certain pride in the deaf community. Having said that, there is a new generation of children with cochlear implants. I was told that 95% of cochlear implant candidates opt for the implants.
I'll finish with a few recent pictures of Marae, Kay, and Noah.

I am not going to Lie, learning Marae was deaf was one of the hardest days of my life. I can only relate it to the day I lost my mom to cancer. Yes, I still had my sweet baby girl to kiss and cuddle, but I felt such a loss... grieving what I knew to be "normal" for her and feeling so uncertain of what lay ahead. Luke and I NEVER in our wildest dreams would have pictured ourselves here, but we are and we have learned that hearing loss can happen to anyone.

I have had about 5 weeks to digest her diagnoses. Some days are better than others. Most days I feel at peace about it but then there are those days I struggle. I no longer fear that Marae will never hear my voice or hear me say "I love you". I know she WILL and I am so thankful for modern technology and medicine. I am so thankful for Cochlear implants and that she has the opportunity to hear and experience the amazing world of sound and speech. I dont worry that her deafness will hold her back from achieving whatever she desires. I know that she CAN do and be anything she wants. She could even be a singer if she wanted. ( hint hint) ;) All thanks to implants. Having said that, I do worry about how people will treat her once she leaves my protecting arms. As parents we always worry about how our kids are being treated regardless if they have a limitation or not. Even after the implants Marae will always have an earpiece if she wants to be connected to the world of hearing. Though she is a girl and her hair will often hide it, there will be times it doesnt and people will notice and because of it they may treat her differently, like she is somehow broken. I have already gotten this response from some people who have learned she is deaf, even family. Let me be clear, she is NOT broken. Just as many people have to wear glasses to see, some have to wear aids in their ears to hear. Why they are perceived so different, I will never know.

What I do know is that Marae is beautiful. She is sweet and patient. Alert and so interested in the world around her. She is so smart. She already knows how to grab at her ears to remove her hearing aids. Though I appreciate her inteligence, I sure wish she would stop removing them! :) She is a snuggler and a smiler and I am so thankful I get to be her mommy. This is a hard adventure but one I will appreciate. I am so thankful that hearing loss was all I was given. I am glad I do not have to watch my daughter struggle with a degenerative disease or an illness that threatens her life and causes her physical pain. I am glad she is healthy and I am so thankful she is ours. I look forward to life with Marae. Appreciating the simple things and watching her discover all that she can be. One thing she will always know is how much her God loves her and her family adores her.

Prayer Requests:

Prayer for the Implant application Process
for the many decisions that lye ahead including early intervention programs
patience with the hearing aids and perseverance in keeping them on her.
Patience with Kay and Noah as they learn new boundaries we have set between them and Marae's ears