Grand Canyon

Its been a few days since our trip to the Grand Canyon to see my sisters family but I have been so busy getting back to real life that I haven't really had the time. Its been two weeks since I've had to deal with silly things like grocery shopping, bill, therapies, cleaning the house that sort of stuff and it all got backed up.

It was a fun trip! Eva didn't tell the kids we were coming she convinced them I was too busy to make the drive up so it was a surprise. I also made Victoria a cake since she celebrated her birthday the day before it was a surprise as well. So we left our house as soon as Scott got off work Friday morning and drove the 3 hours to the canyon. The kids were out walking down the sidewalk and were very surprised when they bumped into us who just happened to be there (wink wink). It was so nice to see them! We enjoyed walking the rim with the kids. My little boys got so much attention from all of their cousins. Maybe a little too much since Baby Brayden still thinks that someone should be holding him and playing with him at all times. Brayden is so cute and smart he knew just who to smile at to get taken out of the stroller... Eva or was it Tory? I think they are both guilty! I think Jacob spent more time in the stroller then he did. But it was good he doesn't get to see his cousins very often.

It seems like forever since I've spent time with Eva's family and I miss them already. One of the highlights of my trip was when me and Ethan were walking together and he grabbed my hand and said "I love you Aunt M, I miss you a lot" What a sweet kid. I loved watching my sisters girls take care of my kids and mother them. I use to babysit them when they were just babies themselves. Its hard to believe that if I lived closer I could have Tory babysit for me all the time. She use to tell me that if I did it for her then by the time I had kids Tory would be old enough to watch my kids. Now I live too far away to collect on that offer. My sister has five for those of you who don't know and she has done and amazing job with all of them. They have their moments like any kid would but over all they are very very good kids.

We spent the day walking and checking out the rim. Even Jacob seemed to handle everything very well and walked most of the day with us. We had dinner at the canyon and then Scott and I took the boys to Eva's hotel room to rest while they went to do some star gazing. That's when I was able to get Tory's cake out. I just set it on the table for her to find when they got back. Rebecca spotted it first but Tory's reaction was the best! She was so excited and was giving her mom hugs saying thank you over and over again. Then when she found out I made it she was so happy. It was a fun surprise!

Saturday was a long day we didn't get much sleep cuz the only hotel room we could get was in Williams so we had to drive the 50 miles there after the cake before we could fall asleep ourselves. Then it was up early the next morning with the kids. Scott really wanted to go to see the IMAX so we left Brayden with Eva thinking we would be able to catch up with them but because it was so crowded in the park and we had bad cell reception we really didn't meet up till late. Then we had lunch and headed home. Eva and Carl had an even longer day having to go back in the park one more time to try and find her missing camera bag and then had car troubles and so by the time they were leaving the park we were already home. They didn't arrive at our house till 10:30 and had to get going early. Its always hard to say goodbye but hopefully we will be able to go to Utah. I want to make a trip up to see my brothers baby who is going to be here very very soon but we still have so much going on.

California

We just got in from the long drive home from California. My little brother John was graduating from... I have no idea what its called... he was graduating from his army class where he learned to speak french. So his wife asked if the boys and I would come down as his graduation present. It was supposed to be a surprise but apparently the army doesn't like surprises so he found out last minute. I packed up late Tuesday night to be prepared to leave Wednesday morning. I left somewhere around 6:30am it is supposed to be a 8 1/2 hour drive but I knew since it was just me alone with the kids to plan on more like 10. It took 12 hours!!! I was so tired that I had to pull over and rest twice and on top of that my GPS got me lost and made me travel through farmville to get to their house. I was so glad to finally be there and so were the kids.

John Graduated Thursday morning. I can't believe how grown up little scrawny Johny looks in his uniform! It was exciting I was so proud of him. Even if I could barely hear anything above the screaming of my tired kids. Unfortunately the Army didn't ask me when my kids nap time was so they could take that into account when planning this event! We all walked down John's class room where the students and teachers we all gathered for a little celebration. Its amazing how well they speak french. I took several years of french in High School and in College and can barely remember enough to introduce my self and ask what time is it! That is when my camera broke... don't know what happened to it? It was working just fine and I set it in the stroller and picked it up again and it just wouldn't work so we had to head out and get a new camera (no I cannot live one day without mine). John and Heather took us out to lunch and the best part is finally getting to know my sister in law. John and Heather got married in December and we have only met a few times. We have talked on the phone and online but being the only sibling (minus John now) living outside of Utah I really never got to spend much time with her. Turns out Heather has the same hobby as me... Teasing John :)

Being with family is so fun the kids were all giggles and smiles with all the attention they got from their aunt and uncle. Friday they took us to the Santa Cruz Boardwalk. We had so much fun playing on the beach, (it was too cold to get in the water) riding park rides and eating really really unhealthy food! Landen and Brayden both got to ride their first amusement park rides. We took them on the carousel. Landen loved it! He rode twice and was just so happy to feel the wind in his face and the motion of the horse going up and down. Brayden liked it at first but as it picked up speed and his horse started pulling him up away from Heather he started to cry! I love taking the time to do things with Landen that he enjoys even if it takes a little extra time and money. Just to see that smile on his face and his eyes light up just brings me joy! John and I rode a roller coaster together I haven't ridden one since before I was pregnant with Landen. I miss being so close to Lagoon! We had fun reminiscing about Lagoon and the fun things we did as kids. It was a really fun day I even tried a bite of John's deep fried heart stopping extremely bad for you twinkie it was delicious but not quite as good as the deep fried heart stopping oreos. Between the fried food and the rides we were lucky to survive the day!

Saturday and Sunday we went to the beach and played some more. It was grey and cloudy the whole week we were there but even with the gray clouds the ocean is still beautiful! Saturday was Seventeen mile drive and Pebble beach which was beautiful. Brayden loved the wet sand he would hold onto my hands and run town the beach toward the water. He would smile and laugh as long as the water only got his toes if it touched his diaper he would cry. It was really cute. Landen was having a bad day and didn't want to come out of the car much so Heather sat in the car with him while Brayden, John and I explored.

Sunday was Carmel beach which was beautiful! The houses around are so cute I want to live there! We actually weren't their very long although we did manage to wear ourselves out. Landen was in a much better mood and enjoyed the texture of the sand. He would pat it and pick up handfuls. We had to keep stopping him from wanting to rub his face in it. Brayden was a silly boy he loved getting his legs covered and stealing everyone's attention. John even got in the water. We even saw a little bit of sunshine which was enough to BURN poor Heather. Some how we managed to fill every crevice with sand and take it home with us.

Just hanging out at the house with John and Heater was so much fun. I miss being around family. Our family has always been so close and both John and I are far from the rest of the family. We teased and talked and just hung out. I even stayed an extra day, Monday, John had to work so it was the perfect time to get to know Heather more. The trip home today would have been much shorter then the 12 hour trip there if it weren't for me leaving my wallet and only realizing it after I got 45 minutes down the road. I put over 1100 miles on the car this week and 24 hours traveling but it was well worth it! The only down side was missing my husband who didn't get to go with.

Now we are planing on going to the Grand Canyon on Friday to meet up with my sister who gets there with her 5 kids tomorrow and then having them spend a day here. I'm so excited!

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