Snowboarding Lesson #4

Can you believe we are already at half time with the boys Snowboarding lessons for this year? Only four more sessions left but I am happy to say they are making great progress.

Today it was a snowy day in Breckenridge with about 8 inches of fresh new Powder. It must have been the reason why the Slopes and Lodge were packed with people. We learned that new powder gets almost everyone out on the slopes and we learned this to be true :)

One thing that had the boys a bit slow down in the last few sessions was the fact that they had a different Instructor each week. The initial one, D-Rad was suppose to return again today but he went out yesterday to snowboard and fell and broke his shoulder. So today the boys were introduced to a guy named Sparrow who is originally from Hawaii. He has been Snowboarding since age 6 for 17 years and even met Shaun White two days ago and Snow Boarded with him. The boys LOVE him. He is pretty cool but also has a great grip on how to teach boys to snowboard. They were just 15 min short of getting their first lesson on the Ski Lift, so next week they will start out with heading to the lifts and to some new slopes to try out.

Ron and I spend most of the time in the Lodge but there are still some great pictures and videos we got of the boys. I loved sitting back and people watch and at the end we even met a couple that came here to ski from Sidney Australia. He should be a fancy camera he uses when he skies and thought it was funny when I told him in my case all his camera would see was a tree that comes closer and closer. He thought I was joking ... if he only knew ;)

One thing I was asked from another JM Mom after I had posted about our first lesson was that she was surprised that Connor got clearance from the Doctors to Snowboard. Goodness, I did not have the heart to tell her that this thought to clear it with the Doctors never even had crossed my mind. So off I went to send a quick e-mail to Denver and Chicago to tell them what we did and to get some input. It was mixed but very honest news and once again I am so very grateful to have such wonderful doctors looking after Connor's care. They said that the fear of course is bone fractures or breaks since Connor's Bones are still weak. His Spine has improved since the first Bone Density Test but his Femur is still -2.7 in the negative.
Now of course they also said that they realize Skiing and Snowboarding is a huge part of Coloradians lives and as in every sport there is the danger in injury so they said since he loves it so much we can proceed as long as Connor understands he has to be careful. Of course being on the bunny hills is also a comfort for them to know. Ironically, the last two times it was Connor who had more endurance and stamina then Alexander. Alexander only did one extra run today but Connor did three more. So the beauty of doing something that is fun brings out something good for Connor.

We also started the tradition on our first trip to Breckenridge to head to the precious Cookie Shop on Main Street after we finished playing in the snow. This store is pure sugar heaven. Warm, huge, fresh baked cookies in so many variations. Just what our bodies need to get some energy back on our drive home, plus as another treat we got to watch the Ice Sculpture Competition today in Breckenridge and Vote for our favorites. Well, we loved them all but of course we had to support Germany and Alaska/USA ;)

This morning on our way to Breck we also had the 'joy' to climb up Hossier Pass in the 14th spot out of over 30 cars following a little two wheel drive car. How people get up and down that pass in two wheel drive during snowy conditions is a wonder. We found out the School bus is actually very fancy as Chains were required and all the driver had to do is push a button inside and the chains automatically go on the tires. Now we drove Ron's car today but it was interesting to learn this fact.

Wishing you all a great weekend. I am looking forward to staying home watching the X-Games in Aspen on TV. After all the boys new hero is no other the Shaun White --- figures!

Hugs,

R A C A

Auf Wiedersehen Oma & Opa ....

It was time again to send Oma and Opa home to Germany and as with each time we do NOT want to let them go but know we again have to share of course :)

It truly is harder and harder to see them off as we all get older and you know time is only a gift that can run out at any given point.

So we will miss them terribly until they return again this summer!

Yesterday I had a very strange conversation with Connor and Alexander during their bath time when Alexander looked at me and said that he wishes no more babies would be born and no more people would die. I asked him why he would say something like this and he explained to me that he does not want me or anyone else he loves to ever die and that he wishes everything would just stop right now. No more births and no more deaths. Just to freeze everything the way it is now.
I know there are days I fear any shift in nature when it comes to my family and loved friends. Oh to have the absolute power to protect those we love so much!!!

Ron was asked the other day by someone we know if I still had a believe. Now this is not a hard question for me to answer as I do believe, it is however a question in 'how' I believe that has changed tremendously.
I think all cards are out in who may get touched by 'bad luck' or what some might call 'evil'.
I believe no one is safe and I sure don't think God is there looking out for each one of us to keep us all save here on Earth, how else can one explain the pain and suffering some of the most religious people will suffer due to horrendous crimes against them? Also, who in this world actually thinks that God feels it is more important to bring his focus on Tim Tebow and a Football Game all because he bows down to pray all the time? You truly believe a Game is more important then the amount of people that were killed around this world, raped, beheaded or stoned to death during the time the Broncos play? This is were I am on a completely different page at this point in my life! I would feel insulted to think there is a God who looks out over a Game for a couple of hours instead of some of his Children who are truly suffering and in pain.

Well that's some of it in a nutshell :)

Hugs,

R A C A

Welcome to Holland

A person I adore very much and who has been a wonderful support to the boys Cottage School got some very unexpected news that will have an impact on how one might feel about a families dynamics or future.

Here is the part I know I said many times and that I believe to my core. No matter what diagnosis enters your home it will be unexpected and you will feel overwhelmed and possible like hitting a wall.
You will be bombarded with lots of well meaning advice but that can all feel oh so over whelming.
The part I believe in is that there is never a competition to what diagnosis is worse but that at the moment you are told your child's life might be altered you start to grieve the things you think will be lost.

There is a beautiful explanation that rang with me through our journey and I hope it is okay for me to borrow:

Hugs to my sweet friend!

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 out 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....and 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 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.

Port Flush and Blood Work AND the iPad :)

Connor had his appointment today with the Center of Cancer and Blood Disorders in C-Springs to get his Port flushed and also have some new Blood Labs taken.

He did great and what a difference it made having his iPad with him. We joked around with his Nurses as he played 'Talking Tom' and then taping silly videos of himself and me taking pictures of him.

The good news right away were he lost some more weight (1 pound since December), remember we are still on the Steroid taper :), and he also grew 0.8 cm in this past month. Oh and he had an oxygen rate of 98! now that is impressive as well :)

Connor now keeps track on his note pad with all the data which I found cute.

So I am ending this post with a couple of pictures from today.

Hugs,

R A C A

Fun Times with Friends ....

I am so happy that the year 2012 is really lining up with some wonderful visitors that are coming to see us in beautiful Colorado.


Ron and I had from the very beginning of our relationship in 1998 the philosophy that a house full of guests is something to be cherished.
In the first year of our marriage we averaged 6 month worth and it kept a steady pace even when we moved to Colorado or even more so because lets face it ... Texas against Colorado? no fair comparison - sorry TX - haha


This year of course we already had Oma and Opa here when we stepped into 2012, and this past weekend we had first time visitors from Chicago. Now we kept this a surprise to the boys who had no clue that some of their favorite people were going to arrive late Friday. They kept wondering why they were allowed to stay up so late when they had such an early morning and long day on the slopes of Breckenridge for their second Snow Boarding Lessons, but their faces were just priceless when they saw the reason why. 
It was a fun weekend for us all and now we are getting ready for a very busy week that will end with the Departure of my Parents. No, I do not want to hand them back to my family in Germany but I guess I was taught to share so have to hand them over ....


We are now looking towards to our next visitors that are arriving from Alaska on February 1 :) Looks like it will be 5 days of fun with the Gracia Family :)


Hope you all had a fun weekend as well and are enjoying the long weekend :)


We are heading bright an early to the Infusion Center tomorrow to have Connor's Port Flushed and Blood taken.

Hugs,


R A C A

1-11-2010 to 1-11-2012 two years with JDM

Today is Connor's two year Anniversary of his Diagnosis with JM. By then he has already battled the symptoms for a month but until this day we had no clue what we were battling.
Of course I remember the Day so well when the Phone Call came in from Dr. Stephen Smith, Connor's Neurologist. I recall writing down the name 'Juvenile Dermatomyositis' JDM, but having no idea what those words meant.

I then recall calling and e-mailing my friend Jennie Olson, who not only has been the kind of friend you consider Family but who is also an amazing Nurse with an extremely impressive resume in Pediatrics. She knew right away what it all meant and was a world of wisdom and information for us. I know those first few weeks I would have felt lost if it had not been for someone to give us an insight. Of course down the road we found curejm.org and the amazing people that volunteer their time, money and compassion for this cause and for the mission in finding a Cure. With CureJM also came the book 'Mysositis and Me' and some sleepless nights followed after reading it and worrying about the journey ahead.

I am not going to go to far on this today because most of you have been with us on this journey from the very beginning so you know what followed.

In so many ways thinks come back into a circle and today it was again Jennie who put the last two years into a post on Facebook:

Jennie Gulde Olson

Was thinking of the email 2 years

ago today . Not only has Connor come so far, so have 
you all! The incredible things you have ALL done to fight
JM. All the travel, doctors appts., emails, phone calls
, flights, mail, bills, friendships, sleepless nights, having
strangers in your home, learning about and caring for a 
port, shots, meds and so much more. Hats off to you all. 
Love you guys and cheers to Connor! One incredible

family!


This is the part of this journey I am the most grateful for. JM was Connor's fight BUT it brought to light the friends and family that took the news and stepped forward and were a force along with us. There are many of you and you know who you are!
There were the friends and family we thought would be there but who had no idea how to handle this challenge and who sadly moved to the background or disappeared completely. I used to be sad and angry about this but not anymore as I realize we all move in different ways and this was not a path some were able to follow.


Thank You to all of you who stood by our side. You were our eyes, voice and backbone so many times!


Love,


R A C A

Back to school (life), back to reality ....

Oh please, please, please grant me some sanity for the start up of school again.

Who would think that spending 4 hours in an Elementary Classroom would get me so mentally tired and exhausted. Working an all-nighter from Dallas to a Mexican Resort and back was way easier on my body then school is ;)

How can one balance a certain parenting approach with being faced by the complete opposite from other parents.
Ron and I take pride in the fact that the boys have dealt with their interactions towards each other without being snitches or tattle tales since about age 4.
So when I get told from a teacher that another parent complained to her that 'The Twins' have been chasing her son during recess I pretty much take an issue with this on several points.
For one, how can one chase someone else if that person stops running? If I don't want to be chased I stop. Ron of course looked at me and said 'Isn't running around a huge part of recess?'
Second, I am fed up hearing anyone, parents or fellow school kids accuse 'The Twins'. My boys are two identities and both have very different characters. Most of the time they are not even in the same area during recess or you won't see them next to each other during classes. On top of this they are not looking a like at all anymore. Connor is a good 1 1/2 inches shorter, has a rounder face and a shorter haircut. I do NOT dress them alike in school.
Now I am not taking an issue about anyone calling the boys 'The Twins' when it comes to having a conversations about our kids, just don't accuse one of them and not even know who you are accusing so you take the safe road and just say 'One of the Twins'. Of course as they say some ethnic groups all look the 'same' so I guess twins fall into the same category..... sarcasm here...

So what is wrong with teaching your kids to stand up for themselves? I taught mine and I am NOT telling them to back down because your kids or you as the parent prefer to run to the teacher to complain. I guess it is safer because it is always great to hide behind someones back. Not something I learned and not something I ever want my son's to do.

There is also an interesting feel I have about all this. If there is a complain it seems to come from the shadows and not from a parent that I see involved in school. Maybe if that parent would spend some time in the classroom and observe they would see that none of the kids are little Angels (with the exception of a few) and that yours might very well be one of the instigator! Now wouldn't this be eyeopening?

Everyone that knows me should realize if I see my boys mess up or act in a way that could be hurtful to someone else I will step in and correct their behavior. I am not the parent who says her kids are perfect but I also know that some complains come from kids who have been pushing every possible button on my boys and I am not going to teach my boys to take it.

I am in the back of the classroom watching each Tuesday and Wednesday and many times I see behavior from kids that I find unacceptable BUT it is not my place to say anything nor will I, unless that behavior is pointed towards my son's.

So again, please give me the sanity to keep my mouth shut at school and making sure my boys will be armed with using their words and using their brain, after all the biggest weapon man kind has :)

Good Night,

R A C A

Tooth Fairy - Finally ....

Okay, this might be only in my mind since there is no scientific proof BUT today I think we won another battle agains JM!

Our poor little dumpling Connor never had the experience of what it feels like to natural loose a tooth in his 7 years on Earth.
At age 2 he had to have one tooth pulled out when he chipped it on the tile floor and the nerve was exposed. This was a very dramatic event for him. We then entered JM and with it he got to see his brother's teeth become wiggly and fall out but never his. In Connor's case his permanent teeth actually started to come out behind his upper and lower baby teeth. So once again to the Dentist with the event of Connor getting four teeth pulled out last year. This time it all went much more smooth as Connor likes this Dentist and was not in a screaming fit like at age 2. Very composed in fact and it paid off with a visit to a 60's Dinner to have Milkshakes and Ice Cream afterwards. Plus he craved Elvis Fries and I am still not sure how he was able to eat them after his ordeal of having four teeth pulled but he did it! Trooper as always :)
So two weeks ago Connor came running to me telling me that two of his teeth are wiggly! He looked at me and said, Mommy, we are beating JM and I am getting better because now my teeth finally are coming out on their own. Today was the day! He lost one while playing downstairs, a tiny one but never less a tooth! Huge for us!

Today we all watched Video's we took of the boys in 2005 and this brought back so so many bitter sweet memories. The Video's we looked at today were from June 2005 and the boys were just 14 months old. We had Christina stay with us for the Summer and she must have been 10 or 11 years old then! We saw her friend Mika, Marks daughter and also Marks Mom feed the boys Yogurts. There was sweet and precious Andrew as well and lots of video of the boys in our backyard pool. There was Len and Pam as well ... how I wish I could have bottled up some of this time and how truly innocent we all seemed.
Even seeing myself when Ron was filming and wondering where this person went? I have to say I liked myself then as well but most of all I loved looking at the screen and thinking how truly precious life was for us then. This was before we even knew about Alexander's tethered Spinal Cord! 6 years and a combined 6 surgeries later, 10 Anesthesia's between the two of them. Just think, all we knew back then was wonderful family and friends, a house full of fun and laughter with the most beautiful and funny 14 month old dumplings. Oh, innocents of it all.

The truth is, when we put the boys to bed tonight I thought that my love for them has not stayed the same (and trust me I could not phantom a bigger love then) but never less seems to grow more and more each day.
How can one know them insight and out and not see what a gift they truly are. Both Connor and Alexander are sweet, funny, caring, smart and such fighters and survivors. I love how they have a natural confidence in everything they do or attempt to do and how they are such amazing extroverts. They have never seen a stranger and have a curiosity of life that is unmatched.
I feel bad for those that don't see this because they are truly missing out.

The picture above is of course Ron but also Christina and Galina in the summer of 2005.

Good Night sweet friends,

R A C A

First out of eight Snowboarding Lesson in Breckenridge

One could have thought our dumplings would be excited about starting their Snowboarding Lessons in Breckenridge today but nothing had us prepared to see both of them standing next to our bed at 2 am fully dressed to head to the Mountains in Breckenridge. Yes, I did have the alarm set for 5 am and that I thought would be painful enough but 2 am it was and there was no going back to sleep for our super excited boys :)

Oma, Opa, the boys and I left the house at 6 am to head to the Lake George Charter School and the School Bus pick-up, and by 6:30 am we were on our way towards Fairplay for the one stop on our way to Breck to pick up all the kids gears. The boys loved riding on the bus and we loved following in my car :)

All the little ones and helpers made it up the Mountain in Breckenridge via the Gondolas by 9 am and the children were divided into their groups and to meet their instructor for the next eight weeks.

The boys are in a group of 5 and Brad, who is teaching them has been Snowboarding for 12 years and had started at the same age all his little students are now - 7. Talk about a dream Job when you are a teen!

Here is a line-up for Connor and Alexander.

Connor was very focused but was also a bit timid. Alexander was fearless and a dare devil. I think if both trade out some of their temperaments to each other we have reached perfection. I have to say by watching them snowboard for a bit over 4 hours today they truly loved every minute of it and were so enthralled that they did not want to stop. 

On our drive home all we heard was how much they loved it and that they wish they could snowboard every day of their life!

Well, lets see how their little legs feel about this tomorrow ;) also it was so surprising they both fell asleep on the way home - NOT :)

As it was they both went to bed at 7 pm tonight after being spoiled from their Papa with yummy Papa Murphy's Pizza. Next week Ron will go with them as well and they can not wait to show off their new talent.

Thank you once again Park County, Breckenridge and the most wonderful Parent Team out there from Lake George that is making all of this possible. Everything was so organized and we even got spoiled with Hot Chocolate, which was great considering the pricing of the food was of course very fitting for a Ski Resort ;) $9:50 Hot Dogs anyone? ;)

Oh I do have to say I have always loved Breck and I am still in love with this town, maybe even more so now for Ski Season. The Lodge was wonderful, there was music and the crowd was young, vibrant and hip. My parents and I could have had a Jaegermeister out on the terrace but since we were watching over our little ones we decided to passed this time around. Maybe when Ron and I hit the slopes this will come in handy ;)

Hugs,

R A C A

Annoyances

So yesterday my Mom, Dad, Ron and I finally were able to sit down and watch the movie "Christmas with the Kranks". We had all read the book that inspired this movie (Skipping Christmas by John Grisham) so this movie was suppose to be a part of our Christmas movie lineup.

I ordered it around December 18 from Amazon and the tracking showed it would arrive well before Christmas on the 21 st. Well, it did not show up so I figured it was held up due to the Christmas traffic. Not until the 28th did I think about checking the tracking on this Shipment which to my surprise said the package arrived at the Lake George Post Office on Dec 21 at 12:01 pm. Sure enough, Ron went to the Post Office and it was confirmed that it was scanned in that day.

To make a long story short. The Gentleman working there was very apologetic and figured it must have ended up in the wrong P O Box. No big deal on this part as everyone makes mistakes and Christmas is always stressful for a Post Office. We had other people's mail before in our P O Box but there is a drop box for misplaced mail so no big issues at all as you just put it back in the box.

In our case unfortunately the person that received this movie decided to keep it. Truly great Christmas Spirit from their end ...

I know, I know, it is just a movie and my spirit should be AND used to be up to a while back that I would shrug it off and hope who took the movie had a fun time watching it. 

I really wonder why there are such contradictions to my personality, that is so opposite to what the reactions for the majority of the population is when faced with a life changing event.

For one, many feel that small things just don't matter anymore in the big picture and well I know for me it so the opposite... 

Were I used to look for the good in people and believed always in the best outcomes I now have no patients for people who lie, are incompetent, inconsistent, selfish, arrogant (not to confuse with confidence) or just plain ignorant. 

I also did not run towards a stronger believe in God as so so so many of my fellow JM / Cancer Families have done but as you know started questioning a believe that often left me with no answers or true facts....

I started questioning people who had no true connection to me and my trust levels went down a lot.

I don't think there will ever be a chance for me to be the person I used to be and while others around me might miss that part I so many times feel like my eyes finally opened up. I am so grateful to my family and friends who get this!

So here this little event about the 'lost' DVD plays right into my new disposition. Stealing is stealing, no matter how you go about it. Someone being pick pocketed in Rome, broken into their house in Miami or taking something that is not yours to keep ... You are no better then them if you knowingly keep something that is not yours.

I would love to see them sit in Church on a Sunday, trying to make everyone around them think what a great godly person they are.
Oh and by the way there is a Church now in Sweden that made it a Religion to steal and copy online, I believe they are calling their believe Kopimi, and you can feel it is your right to download Lady Gaga for free.

Yes, I am not above everything or everyone, and of course I am not perfect. I can be very blunt now, I am very outspoken and I do know words can hurt just as bad if not worse then actions. I know I have not been the kind of friend I should be. I actually have done a good job at pushing people close to me away. What will always keep me sane and level will be those very close to me. They know I am trust worthy and that I would do anything to keep them safe.

I spend more time with my intermediate Family and I feel that I am more patient with the boys. There is not much patience for others so maybe I should work on cutting people more slack.....

I know I don't put on a show, what you see is what you get, always have and always will. I don't lie or try to be someone I am not just to fit in. I stopped trying to fit in a long time ago - most likely when I turned 20 - but my Mom might say the moment I started talking ;) - haha

So I went and bought us a new Movie and I am happy to say the four of us were laughing a lot last night.


I do want to Thank the Gentleman that works at our Post Office and who made a mistake but took ownership right away and was very apologetic. He right away told Ron he would replace the movie. I am not putting any fault to him as we all make mistakes, it is those that don't admit making them I have issues with.

So this is to keeping people with integrity close to you. I respect those that tell the truth more then anything and those that truly love you always will!

Hugs,

R A C A

FaceTime and Skype in 2012

So technology in communicating with Friends and Family is taking on some new dimension for our Family :)

The boys have been extremely busy e-mailing with Family and Friends and it has been a most wonderful teaching tool. 

THANK YOU to all of you who have been so wonderful about helping the boys do this and it has been an amazing teaching tool. We entered this event at the end of school each day when the boys get to see if they have e-mail and then have to read and answer them. Great reading and typing skills are now added to our classroom. Also working on online etiquette is a great education as well.

Now for a couple days the boys have also taken off to talking on FaceTime and on Skype with dear Friends from Chicago. Right now they have been chatting for almost an hour.

Thank You to G and E, and their Mom for having the patience to do this with Connor and Alexander. This is another great teaching tool to learn how to communicate online.

The biggest Challenge I believe for little ones to learn online communications is by proving the safest haven possible and all of you that are taking the time for Connor & Alexander are being such Angels about this.

Thank You!

The one part I have to work on with the boys is the fact when I tell them time is up and they have to finish a conversation the response should NOT be for them to tell the person they are talking to: 'By I have to go' and hang up - no warning at all to a quick ending of the conversation to the other person. Funny, but I guess it means they take what I say very serious. Next time I have to tell them they get a minute to finish their talks ;)

Hugs,

R A C A