I love this poem many people shared this with me when I first found out about Landen and I thought it was time that I passed it on. Many of the mothers I know with special children like me have taken these words into their heart. Describing my experience with Landen is really hard but this puts words to my feelings. I wouldn't want to give up my time in Holland but I do understand the heartache of missing the trip to Italy.

WELCOME TO HOLLAND
by Emily Perl Kingsley

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're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may 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 supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing 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 and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have 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 Rembrandts.

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 supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, 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 get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

Some video's of Landen in a walker that the PT is letting us use. Unlike the one from the school district this one is the correct size and he is able to use it alone. Watch how good his walking is getting. Even though he doesn't have his braces on in the video he is keeping his legs closer together and picking his knees up!

Just the Start of aBusy Summer

Well summer is here unfortunately so is the heat out here in Arizona! We've already had our first taste of the heat and I have to say I STILL HATE IT!!! But I must say I think I'm handling it better then last year. This year I'm not sneaking in and turning the AC back down to 75 when Scott leaves the house it stays firmly somewhere around 80 and that feels just fine to me. We've started into our busy summer already with our camping trip to Zion National Park. Scott was given the opportunity to have a 4 day weekend and we figured it would be the best time to go camping. I living in Utah all of my life (minus the last two years) have actually not visited the National Parks in southern Utah. People come from all over the world and I never made the drive to the bottom of the state. Scott took me to Bryce when I was pregnant with Landen and we have wanted to go to the other ones but we are always so busy with life. Zion was amazing! We left Bullhead early Friday morning and stayed till Monday. It was only 90-95 degrees the whole time we were there which felt wonderful to us a nice little cool down. The nights were very cold for us some where in the mid 50's BURRR... I know living in Arizona has made me into a wimp. We sent the three days we were there hiking with the kids on our back. We saw some really pretty things. We even hiked a trail that was only 3ish feet wide next to a drop off. I'm terrified of heights but it actually didn't seem too bad. We were warned by several people to turn back since we had the kids on our back but once we got there I figured if we had climbed that steep mountain with 30+ lbs on our back I was going to see the hidden canyon on the end of the trail! The kids loved camping Baby Brayden especially. He thinks rocks and dirt are fun to crawl in plus they make a nice snack when Mommy isn't looking... he got so dirty but they had fun! Scott spent one afternoon hiking Angles Landing it was too dangerous to do with the kids. For those of you who don't know its a hike across a very narrow ledge with sharp drop offs on either side... and yes people have died on that trail... but Scott thought it would be fun. We all had a fun time.

The rest of the week has been busy with therapy and meetings. Yesterday we went to Flagstaff for a hearing evaluation. I've been noticing for about a month now that even with his hearing aids in Landen does not respond to noise anymore. He doesn't turn when you call his name or respond to clapping which has always been his favorite. I've been so worried that his hearing has gotten even worse so I made an appointment a few weeks back for him to be seen. They wanted to do a booth test which has never worked very good for Landen but at his age they wanted to try it. A booth test for those of you who don't know is when they put him in a sound proof room on my lap and face him straight forward then they play sounds on speakers there is on each wall. The hope is that if he hears the sound he will turn towards the direction the sound came from indicating that he heard it. But when we got there they were concerned to find that his ear canals were completely backed up with ear wax just beyond where you can normally see into them without any instruments. They tried the booth test anyway and although Landen did really good at sitting in my lap without wiggling too much he didn't respond to a single sound. The audiologist couldn't clean Landen's canals out with her little "tool" thing cuz they are much smaller then would be expected on a kid of Landen's size so she gave us mineral oil that we are to put one drop into each ear with a cotton ball to keep it from leaking out every night for the next month. No hearing aids until the treatment is done. Which he can't wear anyway cuz one of the molds tore in half when she was trying to remove some hard to get to wax... we can't even make new molds till the wax build up is gone. If in a month when we return the wax is still there he will have to be sedated and have it removed another way (sounds scarey). I'm crossing my fingers that this is the only reason Landen is having issues with his hearing. His hearing has already deteriorated some since birth.

While we were in Flagstaff we got to visit with the Burdick family... they are Ezra's family... the girl who has the same disease as Landen and is the same age... It is always nice to visit with them it is such a relief to be able to talk face to face with someone who knows what you are going through. It was fun to see Ezra she is outgrowing Landen and is looking so healthy and big. She did a little assisted walking back and forth between Joleen and I. She is also learning some words and signs to help her communicate which gives me hope for Landen. Her family is wonderful and so helpful to us. We are very glad to have them near us!

Today we had Landen's IEP (individualized education plan) meeting with the school district he will be allowed services at home and will be having a lot of in home instruction coming this fall. Its almost that time of year for us to start making our annual trips to all of Landen's doctors in Phoenix I will be having a meeting on the 6th with some of the people from CRS (childrens rehabilitate services) to see which ones I can see through them and get referrals for Capstone (CRS and Capstone are insurance Landen is provided through the state) since when he saw them last year he was on a different insurance. It gets very confusing dealing with multiple insurances both private and state. Plus different hospitals and doctors in different towns and to top if off several of his doctors from St Joseph's in Phoenix are now at Phoenix Children's Medical Hospital changing things up again. But in the end its what we have to do there is no way we could afford all of Landen's care on our own. I need to hire someone to deal with all of this paper work!

We have some fun things planned for this summer including (now that the cat is out of the bag) a visit to California next week to see my brother John, a visit from my sister Eva and her kids when they go to the Grand Canyon, our trip to Omaha for Landen's medical conference, and a trip to Oregon to see Scott's family... to top it all off I'm hoping to make another trip to Utah after my brother Isaac's little girl is born. So we may not be seen much of this Arizona summer after all!!!

Another Loss in Our PBD Family

Yesterday evening our PBD family experienced another loss. Nickolaus passed away less then one month shy of his 4th birthday. Its a heartbreaking reminder of the reality of this awful disease. My heart breaks for the family he leaves behind. They are experiencing a heartbreak that I can't even imagine, I only know my feelings knowing that someday it will be my turn to say goodbye to my angle and knowing that horrible pain theirs can only be exponentially worse. Please remember them and all the other mothers who have been left behind while their children move on to their Heavenly home.

Nickolaus 07/05/2007-06/07/2011

No we didn't drop off the face of the earth!

Sorry all I haven't blogged in a couple of weeks we've just been so busy with life. I had to go back and see what was happening last time I posted and what has happened since then.

Therapy of course lots of therapies. Landen is loving his speech therapy which is new (we've only had a few visits). The therapist is really nice and helpful she even likes it when Brayden tags along. He is usually a big distraction during therapies but we are working on Landen learning to say no to him nicely instead of pushing him away. But then again this is a struggle all siblings of this age face no matter the circumstances. Little Brother wants to be part of everything and have what his big brother has and big brother is annoyed!

We have been to several meetings with the school district even with the decision to put him in a home based program we still have to go through all of the testing and qualifying for regular special needs preschool. I think we actually had a meeting to decided if we were going to have another meeting... but I shouldn't complain because they are doing everything they can for Landen and being really helpful and doing what they can for him.

Mostly we have been busy having some fun. We spent a weekend camping. It was a lot of fun Brayden really liked it he seemed to embrace the outdoors loved getting all dirty! We took Grandma Sinex (Scott's Mom) along with us. Landen did good for the most part he loves to sit in his little camp chair and sing. The very next weekend Scott took Landen and Grandpa Sinex out to the father and sons campout with our church. They seemed to have fun although I think Landen was a lot more work then Scott thought he would be. Scott refused to take a camera with him so I have no pictures. They didn't take Brayden and I wasn't invited to the father sons so we got to stay home together we got a little swimming pool for our porch and had chicken and ice cream!

Last week we had a short visit from one of my best friends we've know each other for what seems like forever! I was so happy to have Heather here!!! Although her trip was cut short (sad but that is life) so we squeezed all of our activities into just a few days. We went to all the usual "attractions" that this area has to offer. First to Oatman to see the wild burrows or as Heather put it "demon donkeys". Then to Lake Havasu to see the London Bridge yes the actual London bridge from London is now resting in Arizona a short hour and half away from where we live. Walked along the canal that they built so the bridge had something to go over and spent some time on the beach. And then we went to the Grand Canyon we go a lot but it never gets old. Average temperature at the Grand Canyon in May? 60-70 degrees so beautiful and nice yet somehow Heather, the boys and I ended up in a blizzard. I have to admit being from Utah I've always loved the snow but hated driving in it but I find its like riding a bike or at least I didn't kill us. It was so nice having Heather here we have tons of fun together as close as sisters although I'm still a little tired from staying up all night!

Our other news! The PT from the school district who will be seeing Landen sent over a walker that belongs to thim for Landen to try out. Its a rear facing walker meaning he pulls it behind him as he walks. He loves it he tries to use it and spent half his PT time chasing Mr Tom in the walker but unfortunately its 2 sizes too big for him and hard to maneuver and makes him an easy target for Brayden who seeks up behind him and starts pushing the walker forcing Landen into almost a run... I will admit I did laugh it was funny! But now that we know that he will use it we can apply to Capstone (Landen's insurance through Long Term Care) for a walker in his size. Before we know it Little Landen will be up and mobile!!! I'm way excited for him!

Other then that Its just life for us it keeps us busy!

Lets get this straight my son is a BLESSING!!

I can't believe some people!! I came home from Walmart today in tears... There I was putting my groceries and kids in the car and my two precious little angles where waving their hands and laughing as the wind blew in their faces (both of them especially Landen love the wind). When the stranger getting into his car next to me asked if they are twins. No I said like always they are almost 2 years apart. "Really" he said (I get that a lot) I told him like I always do "my oldest is just small" his response was a first. "I hope he isn't mentally delayed" (it wasn't the words it was the discussed tone he used that surprised me) "Yes he is" I responded then he started into a big long speech about how children like "that" are nothing but a "burden" on parents and society and how children should be like fish so we could throw the bad ones back and try for something better. I was so angry I'm generally really not one to get confrontational. I can listen to someone say rude and insensitive things with a smile on my face... (till I get home and complain to my husband). But there was no way I was going to walk away from this one MY CHILD IS NO BURDEN!!! MY CHILD IS A BLESSING. I'm so grateful to have him. After telling this man this he didn't repent or apologize, instead he went on and on about how my child and me were going to hell the Bible says so. How we must be some sort of sinners who have never felt the love of Christ. I know this is a fight I could spend all day fighting with an ignorant man so I mustered up all the strength I could and got into my car without another word and drove away. But I can't tell you how bad it hurts to think that people think of my sweet boy that way. My baby is the closet thing to heaven I have. From the day he was born I look at him and feel nothing but the love of a Heavenly Father who sent him to me... He teaches me to the true meaning of Christs sacrifice, the true meaning of selfless love! I love my baby and he is no burden. I may stress and worry and work extra hard for him but I do it all willingly, I do it all because of my love for him! I just want you all to hear this and understand even though things are hard and difficult at times I would never "through him back" and hope for a better fish! I already have the perfect fish. I'm not saying there aren't days when I wish that he didn't have this disease and that everything was normal but that is only for his sake. My heart aches for all he is missing... and a little selfish I don't want to have to say goodbye to my son. But if he comes with this disease and all his disabilities I'LL TAKE THEM ALL just for the privilege of having this time with such a beautiful happy amazing son.

Its offical Brayden is short!

Brayden had his one year check up today. I was informed by the doctor that Brayden is very healthy for his age just short! 29 1/4 inches and 19lbs 4oz. So he is getting big but he is only in the 10 percentile so he is actually small... I guess when we compare him to his 22lb brother he just seems big to us. He is doing so well. He gets up in the middle of the room and stands. He can even take a few steps I'm guessing by the end of the month he will be running (I say running cuz this kid has so much energy he's going to skip walking and go straight to running). He is getting more and more determined everyday. He has his best friend a stuffed monkey that mommy doesn't let him take out of his bed usually but being the smart boy he is he tosses it out of his crib when I come get him and as soon as I put him down he climbs all the way up the stairs to go rescue his friend and bring him downstairs with him.

We also got the good news today that Landen has been accepted into Arizona Long Term Care (ALTCS)! Meaning we can get help financially through the state for Landen's medical needs. I got a personal phone call from the lady who was unfortunate enough to be the one to inform us in the past that Landen had been denied because of non diagnosis... she remembered doing his application a year ago and was so happy that they accepted him this time. Although we are insured we still have co-pays and deductibles and some things are just not covered like his hearing aids. This is getting to be a concern since in the last few months I've noticed Landen is getting less responsive to noise. He doesn't respond to his name or even clapping like he use too. I mentioned this to a friend from the School for the Deaf and Blind this week she specializes in hearing. She watched him and was concerned as I am that his hearing may be getting worse and we were afraid that we couldn't afford to get a new ABR (Auditory Brainstem Response) done which will help us determine if this is the case.

ALTCS will also allow us to keep Landen in outpatient therapy in Kingman after he turns three in August. Landen's DDD (department of developmental disabilities) worker was shocked when I told him that even when he starts receiving in home service through the school district I still want to take him to outpatient. Apparently most Bullhead moms hate going to all the way to Kingman every week and prefer to just have in home services. Not me I love taking Landen to the pediatric gym in Kingman! they can do so much more there then they can do in home. He can have OT sitting in a tire swing filled with balls!! Or climb ramps and stairs and all sorts of things that they just can't do in home. So to me the 45min drive is worth it... its only once a week. Its silly maybe its just cuz I grew up out in the middle of nowhere where we had to travel long distances just to get groceries but a 45 minute drive just doesn't seem like that much of a inconvenience to me.

Also on the good news last Friday was Landen's first speech therapy appointment! It went really well. We meet with the therapist and talked about Landen and what she plans on doing with him. Scott came with me to Kingman last week and it turns out that he and the speech therapist worked together when he was doing part time at Valley View Hospital... She use to work there but since they don't take pediatrics patients there and she has a pediatric specially she switched hospitals.

Other then that Landen has just been getting use to his new braces... well kind of... he loves the braces wears them all waking hours with no complaint its the shoes he has to wear over them that he hates. I blame myself... I never wear shoes and I never put shoes on my kids (well almost never) we live in Arizona the most they ever need is socks to keep their toes warm. Neither of them were walking so I just didn't bother with shoes... So now both my kids are anti-shoe! But I've been making him wear his shoes one hour more each day... today he wore them for 5 hours. Not too bad. So we are getting use to shoes!


But in all Landen is doing really well. He is just as snugly and happy as ever. The other day he gave me a moment I will treasure forever... I always climb into bed and lay next to him and read him stories before bed. I didn't know how much he really loved that part of the day until last week. I put him into bed and had to go look for his story book. He had a meltdown climbed off the bed tears and screams then as soon as he saw me coming back with his book he climbed back into bed and gave me the cutest little smile. I laid down next to him and he snuggled close and patted my arm while I read him his story. When we were done he went right to sleep with no complaints. I LOVE MY LITTLE LANDEN!

We are planing to take both Brayden and Landen on a camping trip tomorrow and that should be fun! I love letting the boys be boys and play and crawl in the dirt! They will get all sorts of dirty and have tons of fun and when its all done they are 100% machine washable... okay maybe not machine (I don't want them to shrink in the dryer ;) their already short enough) But they are washable and they love baths. I figure the more dirty they get the more baths they get and we are all happy!