Merry Christmas and A Happy New Year!

Since this is our first year with a blog, I found it only fitting to do the written up portion of our Christmas card online. If not to encourage an occasional glimpse at our blog, maybe it will save a few trees?!

What a year 2011 has been for our family! We entered 2011 anxiously awaiting our third, a little girl who was born March 11th, on her big sister Kay's 3rd birthday! Kay and Marae are exactly 3 years 2 hours and 6 minutes apart. Talk about deja vu! Noah and Kay were elated to have their little sister join them and Luke and I couldn't believe God had really blessed us with 3 beautiful kids. When Marae was 3 weeks old we found out through multiple failed hearing tests that Marae was born deaf. Something we later found was caused by the Connexin 26 gene. Luke and I are both recessive carriers, thus with each child we have, there is a 1 in 4 chance



of deafness. Who would have thought?! Marae has profound bilateral sensoneural hearing loss which basically means the fine hair cells in the cochlea are either damaged or not present at birth. These fine hairs are used to transduce sound waves to the auditory nerve. It was pretty hard news to receive at first. Of course now we look back on that day and we realize what an amazing journey God was gifting to us. We quickly decided to embrace whatever lay ahead and trust God as we knew he had a perfect plan for Marae. I can only attribute our sense of peace and Joy to God because only he can bring that in the midst of something like this.

We learned a whole new way of doing things. We didn't use sign but instead took the auditory verbal approach. Marae wore strong powered hearing aids and had about 5 decibels of residual hearing. We quickly got the ball moving for Marae to receive cochlear implants, which basically restores hearing by bypassing the damaged cochlea hair cells and delivering an electrical impulse to the auditory nerve. Pretty amazing and miraculous stuff. November 1st Marae received her first cochlear implant and was able to hear her first real loud and clear sound on November 28th when the first implant was activated. It was a bit overwhelming for her at first, but within a few minutes she began to explore everything around her with a whole new sense. For Luke and I it was about the most amazing thing you can witness as parents. It rivals seeing your baby born. Not many parents are given the opportunity to witness their child first experience hearing, but as you will see in the video at http://youtu.be/m_JB0Yl8M4U, Marae gave us much to be excited about. She is scheduled to receive her second cochlear implant on January 10th. Needless to say, Luke and I have watched God knit every detail of this journey together in the most beautiful and eloquent way. There's really no other way to explain it. With Marae's implants she will enjoy sound, speak like her peers, and has the ability to do whatever she desires in life. The sky is really her limit.

Marae is a sweetheart, strong willed like her sister, and very determined. At 9 months shes already feeding herself and trying to walk. Something I'm not quite ready for. She loves playing with Kay and Noah and spends hours watching and listening to them, crawling back and forth trying to keep up. Perhaps this is why she is trying to walk so soon. Her favorite things to do are bounce/ jump, swing, blow raspberries on your cheeks, and catch either of the cats as they try to quietly sneak past her.

Kay is almost 4 and is attending preschool this year. She goes to an oral school for the deaf or hard of hearing and is a typical hearing peer in her class. The school, Listen and Talk, is the school that also has an early infant program for the auditory verbal approach, which Marae is enrolled in. We thought this was a great way to introduce Kay and Noah into our new world. Besides the school being an absolutely fantastic education experience, Kay has made a lot of friends and has grown a sensitivity to kids just like her sister. It's become so normal to her that she often asks me why she cant have implants. To which we explain to her that some people are born unable to hear and they need new ears to hear but Kay's ears can hear just fine.
Kay has flourished in school and adores her two teachers. She comes home every night excited to show us her picture page which tells us all the learning activities they did. We love seeing her have such a thirst for learning. She is definitely a smart cookie. Kay loves doing art projects, dancing, playing games, dressing up, riding her bike, helping mom take care of baby sister, reading, making projects, playing with her friends, and cooking.

Noah is now 2 1/2 and what a jewel he is! He is both my sweet snugly little boy and my brave heroic protector. I feel as if the moment he turned 2, he became ALL boy. He turns everything into a sword or some sort of weapon. He loves to wrestle and our biggest challenge is trying to explain to him why it's not okay to wrestle Marae to the floor. Our house has endured many new scratches and dings from his many make believe battles, but in a house full of girls, its a nice change. Noah isn't yet old enough to attend the Listen and Talk preschool so we are doing a co-op all boys preschool group with some of the moms from church. Since most of the boys have older sisters, we have tried to make this preschool time all about raising boys up to be men. So we've talked about the role of protector and visited places like the fire station, dressed them up in armor while talking about the armor of God, and we even have had a few battles with swords. Noah is very sweet. He loves playing football and soccer... or anything with a ball! He enjoys playing with Kay and for a while his favorite thing was to make cakes in his play kitchen. He likes painting, hide and seek, art projects, cooking, reading, wrestling, racing cars, playing with friends, and showing Marae how to do all of the above.

Luke has almost reached his 6th year at Boeing as a mechanical engineer structural analyst. He is one of two guys doing all the stage lighting at church... something that allows him to be a bit creative. He joined a co-ed outdoor soccer league in the spring but has been out this winter with a knee that just needed some time to recover. He keeps busy with his men's bible study group. They frequently like to meet on Alki Beach during the warmer months where they long board while they study the Bible?! Not sure how that one works. ;)

I am keeping busy just trying to keep up with Luke and the kids. I spend a lot of my time running from one place to the next, but I'm having fun while I'm at it. I still enjoy my Tuesday morning women's bible study, Friday morning MOPS (mothers of preschoolers), and some girl time with my girl friends here and there. Marae has us busy with her AV Therapy on Wednesday mornings and I frequent Children's hospital to meet up with her amazing Audiology/CI team. I still find time to do some sewing, crocheting, baking, scrap booking, and other various activities and am looking forward to getting involved with the music at church in 2012.

May 2012 be a year full of blessings!

Luke, Katie, Kay, Noah, and Marae Rust

Finally!

Kay and Noah @pumpkin patch/ Marae swinging 7 months


I've been thinking about my mom a lot lately. Not sure why more now than other times. I was remembering Christmas 11 years ago. Mom was just diagnosed with ovarian cancer. She spent several weeks in the hospital here in Seattle having the cancer removed. The incision itself was a foot and half long and it felt as if we'd never be able to bring her home. There had been several complications and one of those was the pulmonary embolism that hit her lungs and sent her breathing into a downward spiral. She was maxed out on the amount of oxygen they could give her for weeks and her O2 stats were still not what they should be. I remember walking around target with my sister, trying to find sweats we could wear in the hospital. My gums were bleeding from all the stress and I was 17 and terrified. Our world was completely turned upside down with one word and from there it just got worse. We seriously questioned if mom would pull out of this and be able to return home to Idaho. We hung up Christmas decoration in her hospital room figuring that stark room would be where we'd spend the holiday. Year after year She always hated those decorations whenever she saw them. They held bad memories for her.

After much prayer and an honest pure miracle, she got better and her lungs finally recovered from the embolism. We got word just two or three days before Christmas that she could go home. I remember rushing home and getting the house all prepared for Christmas and moms homecoming. To this day that Christmas is my most memorable and my most loved Christmas. I understood what Christmas was really about. It wasn't about handing mom and dad your "want list". All I wanted was to have my mom back. I wanted to feel some form of normalcy and it came in the 11th hour. It was the best Christmas ever. We had hope and we had mom sitting there with us, smiling and being mom. Mom s gone now and every Christmas I long for that feeling of going "home", just like it use to be but its not something I can visit anymore unless I close my eyes and think real hard.

I say all this because I feel like I'm about to experience one of those remarkably special Christmases again. Even though God has been so good and gracious to our family and to Marae, the day we learned Marae was deaf was such a dark day. We've spent the last 7 months teaching Marae to listen and hear those quiet sounds that slip in and out of her hearing. We've spent all this time waiting for her chance to hear. I'm so thankful that I've always felt that Marae understood me without my words/ voice. I have learned so much about and that it is so much more than the words we say. It's been a remarkable experience and one I do not wish to take back or change. I have felt such incredible joy amongst struggle. And in that sense I've come to understand more about the peace that God gives. I remember when we lost mom my sister said she wondered what God was preparing us for. In many ways that experience helped to prepare me for this, though they are two completely different experiences.

So now for the good news. Marae is going in for surgery on November 1st to receive her first cochlear implant. To say that I am excited is putting it mildly. I feel like a little kid at Christmas. I'm so excited, that I have a hard time settling to sleep at night. I am ecstatic for my baby girl to hear EVERY word I say. To hear the dog bark, the car drive by, to hear the birds singing, or the crickets, or the sounds of her brother and sister. These are things we take for granted until they are taken from us. Yes Marae hears some things but they aren't full words, just little sounds here and there as they travel in and out of various frequencies. I've thought about what I'll say to her the first time they activate her first implant. I'm going to tell her how much I love her. She'll have no idea what I'm saying of course, but she''ll know that I'm saying it and she'll hear me for the first time loud and clear. Then begins the fun journey of attaching meaning to all the sounds she will be hearing. It's going to be amazing! The activation of her implant wont happen until November 28th. She'll miss out hearing her first thanksgiving but she will hear her first Christmas season. We'll be sure to post on our blog how the surgery went. Thank you for all the prayers regarding the timing of this surgery. God gave us a surgeon who does the surgery earlier than most, so Marae will receive her hearing before there has even been a delay shown in her speech. God is good!

Welcome Back...

OK, Its a little embarrassing but Its been almost 3 months to the day since my last post. All I can say is life is busy and we have plenty of life in this house! Remember when I said having three kids wasn't that hard??? Well, our little third kiddo has really turned into an active person and let me tell you, 3 is a LOT! I'm trying to remind myself that it's only going to get harder when three are walking and running in three different directions. So enjoy the moment Katie! But I'll do what I have done all along... problem solve on how to wrangle them all in one direction. Whats one more right?! I wonder if it is this complicated when your kids have more of a spread between them? I still believe for us that the closer, the better. Yep, number 4 should be coming soon. We're thinking around Maraes 1st birthday provided her surgery goes well. I grew up in a family with quite the distance between kids. My parents didn't intend it like that, but my older siblings were almost ready to graduate high school when I came along. My closest sibling was 5 1/2 years older. So, as hard as this is sometimes, I'm having so much fun watching all the kids play together.

Marae is now 6 1/2 months, sits up on her own, eats solids, waves hi and bye, vocalizes when she pushes a car, and always has her eyes on those tall yet miniature people who are forever hovering over her.

sometimes all 3 of them will be giggling uncontrollably. Those are the moments my heart melts.

Then there are those moments when Noah is trying to wrestle Marae or like today, poke her in the eye with a straw, and he just doesn't understand that her screaming means NO. We're still trying to teach Noah that Marae is "delicate". Or as Luke likes to say, "delicate like a flower". Only problem is that Noah likes to pick the heads off flowers. He is such a boy!

This has been a great summer...if you could call it a summer and All my fellow seattleites will understand what I mean by that. We managed to have a few vacations and do a lot of activities. Here are some pictures of some of the things we had fun doing.







Marae had a break from her auditory verbal therapy. The therapists have schedules like teachers and are required to only work 4 weeks during the summer break. The great thing was that we were still working hard with Marae and she was young enough that I didn't feel like we needed a hole lot of help yet. Plus, we kept in close contact with Star. I would say our biggest issue was trying to prioritize the busy schedules that we were/ are acquiring and making sure we actually have family time, Luke and Katie time, and some time alone with each of the kids. The bigger the family gets, it's insane how busy things can get.

Luke and I have set a lot of goals and prayerfully set some plans in motion for our family.

We decided for Kay's benefit, and my own, we would enroll her in preschool at listen and talk. She is so smart and really needed to be challenged more. She was ready for a classroom environment. Something that was just tipping me over the edge all the time... Trying to do Maraes stuff, make sure Noah feels loved and played with, and then do all the learning things Kay really wanted to do. So she goes to preschool Monday through Thursday from 12:45-3:15.


I miss her but I am so encouraged during this break. The two younger kids sleep in their seats during the car ride to school and for the first hour there after, while I read or do anything I want. Yes... time to myself, something I havent had in a LONG time! Then when they wake up we either go into the school to the family/parent room and play or I take them for a walk in the stroller down the street to the coffee shop and then the park.


I had forgotten how easy it is to get around with only two kids and how easy it is to give them each their own attention. My attitude and energy have definitely improved with this change.


Listen and talk is located in the maple leaf neighborhood just north of the university district and west of the children's hospital. If you are familiar with Seattle, it's a bit of a drive from our house in West Seattle. Luke and I have felt like we are really at a transitional point in our lives. Our three bedroom town home is getting too small and when Marae turns one we would like to start trying for our final 4th child. So we need to move to a bigger house, AND our needs seem to be taking us up North. We discovered that we liked the Shoreline area. Our church has a campus located there, its a very short drive to Listen and Talk, and the school district historically pays for preschoolers with hearing loss to attend listen and talk. This school is not cheap and can cost up to 2k a month depending on the child's needs. So this would be a huge burden off of us. The only way we would not have help financially from the school district is if Marae did not need an IEP (individual education plan) which could be very possible. A lot of children with implants are NOT delayed in their speech by the age of 3. In this case the price is still expensive but not the amount of our mortgage. The shoreline school district is also great and has built in FM systems in most of their classrooms. It's the ideal place for Marae and all three of the kids should get a great education.

At this point we are planning on enrolling our kids in public school or a charter school and this has been something we have talked back and forth on. I don't want to make it controversial or say that other parents have made the wrong decision, as the decision of where and how to educate your children is the right of every parent and should be tailored to each child. It's not that I don't think having a christian education is a good idea, my own husband attended a christian school, but I am concerned that a lot of christian schools promote and breed an attitude of elitism and don't teach the kids about outreach and sharing their faith. Two combinations that can be dangerous. A good number of the schools we've seen are also affiliated with one church and lack any sort of a music or art program. So everyone from that church goes to that school and then you begin to get a stagnant pond with no creativity, as our pastor put it once. This isn't to say that we wont ever place them in a christian school, but it would only happen if we found a christian school that we really felt good about. We also feel like God placed our family in a city that needs Jesus and we want our kids to grow up learning what it mean to share your faith, be that beacon of light, and to love unbelievers just as Jesus did. I think it is so important that our kids know the difference between being judgmental and having a discerning heart.

Lastly, a move to Shoreline would allow for Luke to move around more in the Boeing company. We would be smack between the Everett campus and the Renton Campus. So lord willing we are planning to rent out our town house in Seattle and buy a 5/6 bedroom place in Shoreline. Hopefully this will all happen in the next 18 months or so. But, we are listening and if God should lead us to a different area in the city, we'll certainly go there.


We are in the final stages of Marae's CI candidacy. Last Thursday she had her MRI and CT at children's hospital. She handled the anesthesia really well and it was pretty much a non event. This Thursday she has a behavioral hearing test just to observe what she does to environmental sounds. Then next Thursday she has her aided and unaided hearing test. With that we should know exactly how much she is hearing and how much of human speech she is actually picking up. Right now we're figuring she is just hearing portions but obviously not everything or she wouldn't need CI's. After next Thursday we meet with the Surgeon and discuss the MRI/CT and all the findings from the hearing tests just to make sure everything looks great for the surgery. Then we set a surgery date. Which is where prayers would be welcomed. We are hoping for an end of November surgery date or beginning of December. After surgery she will have 2-3 weeks to heal before the implant is activated. I have said all along that I really want her to hear for Christmas. It's a very busy time of year to be doing all this but it's also the most opportune time. Luke has a large chunk of time off and with all the follow up mapping apts, its necessary for him to be off work for a bit. I'm hoping we can save his vacation days for a special vaca next summer minus children. The other prayer is that she would be approved by the insurance to have both implants done at the same time. It's rare for insurance to approve that before the age of 1, but if anyones insurance will do it, it would be ours. We are really at an exciting time and I'll save all Maraes videos and new sounds for a post coming to you soon. For now, we are enjoying her just as she is, perfectly made and looking just like her sister. Check out the resemblance below. Happy Fall!



Marae 6 1/2 months Kay 6 1/2 months

Unexpected Blessings

I'm sure most of you look at Marae's Deaf diagnoses and think to yourself, "Thank God it's not me . Thank God it's not my child." I know because I've done it myself when I've had a friend or family member receive "bad" news. I can think of four cases right off the top of my head. I came to a surprising conclusion last week. I'm sure many of you wont understand how I can say this, but after searching deep in my heart God revealed my true feelings about Marae's hearing loss. I think we go through life thinking anything out of the normal, a loss of something immediately means despair, grief, and ultimately a loss in quality of life. God has been teaching me a lot about that stereotype. Maybe you can examine your own hearts.
(Marae on our family walk)
If God came to me and gave me the option of restoring Marae's natural hearing or living life with her hearing loss, from the bottom of my heart I would chose for her to be deaf. I'm sure some of you parents are cringing, wondering how I could say that and still be a good mom. Don't we want the best and easiest path for our children? God knew what he was doing when he gave Marae her hearing loss. It wasn't something that just happened. He planned it this way. He has known from the beginning of time that my Marae would be born deaf. I have realized that Marae's life WILL be better BECAUSE of her hearing loss NOT in spite of it. I cannot explain how much joy has come to Luke and I these past few months. Our journey has been unexpected, and unexpectedly a perfect blessing.

We have come to see all the ways Marae's hearing loss will aid her in receiving so much this side of heaven. The opportunities she will have, the people who have been placed in her life and genuinely deeply love her. The families and friends, the community we have met have been some of the kindest most generous people I have ever met in my life. They grab your hand and they want to do life with you, walk with you. They encourage you, they bless you with their words. I have grown up in the church and even having done that, these parents and families have shown us kindness we haven't experienced before. I am so proud to be apart of the hearing loss community and I believe Marae will be as well.

We attended the "listen and Talk" early intervention program and preschool picnic a week ago. To give you an idea, there are 100 kids with hearing loss in the L&T early intervention program (ages 0-3) and probably another 50 kids in the preschool, maybe more. That's a lot of families! I walked away from that gathering thanking God for the friendships he is giving us and realizing how blessed Marae will be to have these friendships as she grows. That's when it hit me that I didn't want to trade all these blessing and experiences Marae has or will receive for a life with Normal working ears. She will still hear and the slight inconvenience of having to wear an implant is going to be far outweighed by the opportunities and blessings she will receive because of it. What a great place God has brought us to.

I actually Love having Mare's hearing aids visible when I take her out and about. As I expressed in a previous post, I was afraid how people would treat her. Well, her hearing aids have brought about some great conversations and I love talking to people about them. For instance we were out walking the other day and we came across another family that stopped to chat with us. Marae's hearing aids were falling off...again... and I was adjusting them. The mom asked me about them and I told her Marae was born deaf but her hearing aids helped her to hear some sound. Then we started talking about the implants and she shared with me that her boss's daughter has implants and how amazing they are. How random is that? Stuff like this is almost a daily occurrence for me. I love that people don't say, "oh I'm so sorry for you." Most people are just matter of fact about it. I was also at the zoo last week and ran into kids with implants. I think it's like when you buy a car. You tend to notice people who have the same car, whereas before your purchase you never noticed that make and model before.
(All three kids on our family walk)
Another strange coincidence happened to us at the picnic. Last summer we were visiting Mars Hill's (our church) down town campus. As we were walking up to the building we saw a van unloading 4 small children about 4 and under. After the service this family came and introduced themselves to us and we started talking about how close their kids are in age and told them this is really what we wanted for our own family. 4 right in a row. This past year I have thought of that family a lot. When life seemed crazy I thought of them. When I was pregnant with Marae I thought of how neat it will be to have 3 (hopefully 4) kids running around our house filling it with laughter... and screaming. When 'I needed encouragement or a glimpse of what we working towards, I thought of them. When we discovered Marae's hearing loss, I thought of them and wondered if our 4 children would still be as close in age as we had hoped. Would we be able to do it? Well, come to find out that family is in the L&T program. Their second child was born with bilateral moderate hearing loss. Now our church has over 10 thousand people, so those are some odds there. I love how God answers those doubts right away!
Maraes phonek hearing aids. She is wearing them using a "huggie". The huggie helps keep it in place while taking weight off her tiny ears. The huggie is the translucent tube that wraps around her ear and the strap that goes around the hearing aid.)- Love the huggies!


(Marae sleeping with her new hearing aids in)

Marae got her new hearing aids... the really spendy ones. What a gift they have been. They stay on her ears better, the feedback is low pitched so when it does feedback it isn't like nails on a chalk board. We have seen a greater response from Marae when she is wearing them. The second day she had them in, I was at my Tuesday women's bible study. Marae fell asleep siting in my lap. Someone said something funny and the room erupted in laughter. The sound startled Marae awake! She also has started turning to my voice. If I'm just out of her vision, 70% of the time when I say her name she turns to see my face. We also started doing little learning to listen sounds in the form of songs and she loves those. I also do transitional songs for diaper changes, bed times, eating times, play times, stroller time, and car time.
(Luke and I at the Sounders game.)

(Luke and Marae at the game.)

Luke and I took Marae along on our date to the Seattle Sounders FC game (MLS Soccer) on Thursday night. I put her in the carrier and we hopped on the metro bus that stops right outside our house. It's a quick straight shot to downtown and only takes about 10 minutes. We grabbed some dinner at Ivar's on the wharf and then walked over to Qwest field. They opened the game with fireworks and Marae jumped... yep she heard them! In fact she was hearing a lot because she quickly let us know that all this "fan" noise was a bit much. The sounders scored two goals in the first 5 minutes and the noise from everyone cheering hurt even my ears. So we took her hearing aids out for the rest of the game and she was immediately happier... well as happy as you can be while teething.

Off to take a nap now!
(One of my favorite things to do with Marae, snuggle for a nap.)

parenting is never dull

I cant believe we are already three months into this journey with Marae. Sometimes it feels it's gone quickly, other times it feels like so much has happened in those short three months. Life with three kids 3 and under is totally CRAZY! This week has been no exception. There are many times Luke and I look across the room at each other, all three kids screaming, and we give each other "the look". This look is not the "look at our beautiful sweet children, we are such lucky parents" look. There IS a look for that, but this look is the "Dear God, what have we done!" or "can I scream too?" cause that is really all you can do in those moments. Seriously our neighbors have to think at times that we are running a mad house full of running elephants and screaming hyenas. One would think Marae's hearing loss would be our struggle right now, but no, it's the terrible 3's. Who ever said 2 was the terrible year, hadn't met a 3 year old. Kay has displayed some of the loudest and most theatrical temper tantrums we have ever seen. Sometimes all we can do is shut her in her room and start laughing as soon as the door is closed. Other times, it's just the icing on the cake and I close the door to cry. What ever the case, parenting is hard and when you have 3, it's hard times 3.

Temper tantrums were not all the excitement we had this week. Noah gave us a real scare Tuesday night. We were at our community group from Church and THANK GOD it was Luke and my turn to watch the kiddos upstairs. We passed out the kids normal snack of goldfish crackers, everyone's favorite. Literally seconds after Noah began to consume his crackers, his upper lip began to swell and his face became red and blotchy. I quickly ushered Luke and Noah out the door and called Swedish medical center to let them know they were on the way and Noah was having an anaphylactic reaction. The idiot that I sometimes can be, I did not have his epi pen with us. Honestly Noah has seemed to out grow his milk and eggs allergy so I just really didnt see the need to keep a needle in my purse that the kids could have access to. I was pretty puzzled as to why fish crackers was giving him this scary reaction. He had eaten them hundreds of times before. And milk NEVER gave him this kind of reaction. After some thought and conversing, we figured out that the bag used for the snack, had contained peanut butter filled pretzels earlier in the day and Luke saw Noah eat one left over in the bag. So Noah was having a reaction to peanuts. We were told to stay away from nuts since he tested allergic to almonds, but we had no clue he was going to be one of those kids. You know, the kids who have to stay a mile away from anything that has remotely come in contact with nuts. The good news is they made it to the hospital quickly and Noah got the drugs he needed to bring the swelling down and return his breathing to normal. He did however get to spend the night in the pediatric ward. This marks 4 nights Luke has spent on an uncomfortable window bed this year. 2 of those being (Noah's lips at the hospital)

with the kids. I remember my mom once said that having kids was like having your heart walk around outside your body. Wow, did she ever know what she was talking about! Noah is home now and I have to say, the boy's little adventure allowed the girls and I some nice time together.
(The girls smiling and playing together on the floor gym)


(Marae all hooked up for her BAER hearing test)

Marae also had her repeat BAER test this week. I thought it was to be an aided test this time, but it was unaided (without her hearing aids). Last time she took the test she had no responses to the equipments max (95 decibels). This time we actually got some responses from 85, 90, and 95 decibels. This is great news because it is just more confirmation that her auditory (8th) nerve is present. She hears lower pitches better than higher pitches and she seems to have "islands of hearing" along the spectrum. Because money is now no object, they ordered her the best pediatric hearing aids on the market and those will be fitted to her on Monday. Just another one of the many blessings arising from this whole thing. We also had her psychosocial evaluation with the cochlear implant clinic. Believe me it sounds far scarier than it actually is. The psychologist just shared with us the history of the deaf movement, what role implants has taken in the deaf culture, and the entire process of the implantation right down to what we pack for her over night hospital stay. It was pretty interesting learning a bit about the deaf community. It is rapidly changing with a new generation of "hearing deaf". I also learned that for whatever reason, babies who receive implants hear better than adults who receive implants. It has to do with how quickly the infant brain is learning and soaking up new things verses an adult who learns at a much slower pace.

Finally our week ended with taking Marae into the Childrens hospital ER for a high fever. Since she is so young they wanted to examine her in case she had an infection. I'm not sure that I have completely recovered from being up all night on Thursday. They did a cath to test her urine, an IV to give her fluids and test her blood, and a mucus test to see if she had a respiratory virus. All were negative and Marae managed to smile in between tests. They sent us home with the idea this was just a virus and she would heal herself. After the fever was done she broke out with the typical roseola rash. That would explain why there were no other symptoms.

We thank you for your continued prayers, and know we covet them. I think Luke and I have come to learn that when you become a parent you truly surrender yourself to the will of God. There is so much we cannot control. We have to role with the punches and pray hard. Every child has their ups and downs, their proud moments and frustrating ones, and though you can never be sure of what tomorrow brings, you CAN be sure that there will NEVER be a dull moment.

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.