So Thankful....

This year was the first time I really enjoyed November and the whole thanksgiving season.

I admit I was often the German Grinch who felt that Thsnksgiving was a speed bump for me into getting into tne swing of the Christmas Season. 

However something happened to me and it made it all very very different and while I do to know what caused this change I love it!

It started all with me feeling the need to clean out our Home. We drove trunk loads after trunk loads to Goodwill. Our Bedroom and Closet alone donated about 1000 Books and 15 huge black bags of clothing. Our Office donated lots of educational materials, books, Computers and Cameras. 

Out of the downstairs Play and Gameroom came games, sewing machines, DVD's and video games.

This part took about two to three weeks and I can not tell you enough how liberating it felt. We still have ways to go with the attic but just starting it all was such a happy feeling.

Then came the FB Tradition of saying 'Thanks' each day for something in your life. That alone is so eyeopening as you start realizing how good life really is, not perfect but good!

Then came another very happy compromise :) I did start downloading my favorite Christmas songs to my Computer and syncing it with my iPad and iPhone. 333 songs that I have been listening to since about November 15. No I did not feel guilty as I love them and they make me feel happy and also grateful and that is what Thanksgiving is all about, right? I was validated as one of my Sattelite station  switched to 'Holly' at the same time :) I also started to work on Christmas Cards and gifts, because taking stress away from December is also a good thing in my eyes.

So in the end it was my merging and being able to enjoy both that made this such a great month.

I think we all need to stop being critical towards each other in how is the right way to celebrate this season. After all aren't Thanksgiving and Christmas close to the same feelings? We are grateful and we should focus on giving and helping those less fortunate. So to me it does not bother me to see Christmas Trees go up or hearing Christmas Music. If it brings joy to someone it can not be wrong and truly it hurts no one....

I loved November, even the snow that it brought us so very early, and I am now going to dive into my beloved Christmas Season. No Season is more magical once you have kids! Connor and Alexander are truly the two people that made me believe again and my creativity and imagination goes back into high gear thanks to two little people that still BELIEVE ❤️💙❤️

Grateful to each of one of you!

Love,

R A C A

Happy Thanksgiving!

I love this time a year because it reminds me each and everyday about all the things I am so thankful and grateful for!

I have been listing things each day on FB throughout November and while it always seems a bit strange in the beginning it is very easy to warm up and then I feel as if I can't stop posting- lol

As to the actual Holiday it really falls in the same pattern we had for years. No Turkey here today as Ron is flying and working as he does most Hollidays and will on Christmas as well. So the boys and I baked cookies, watched movies and just relaxed all day. Funny part is that my husband had a complete Turkey Thanksgiving Dinner on his layover in South America. It is really something to see what efforts Hotels around this world will do to accomadating Americans that are traveling.

For once this has been an AMAZING year for Connor and his battle against JDM! We as a family have proofen once again that we are the best and strongest when faced with pain.

I am so grateful for the people that surround me, my family, my friends. An amazing gift to have support of so many beautiful people. My husband and my boys are the pillars who give me my wings to fly and my friends are the once who make sure I don't fall.

On a more materialistic level how can I not be grateful for the live I am living? To not have one need! Well a CURE for Juvenile Dermatomyositis would fall under a need, but other then this I am living the life of a successful warrior (if you know me I am not really the princess type - lol). Thanks to my husband I have a beautiful family, live in a beautiful house in a beautiful State. I drive wonderful engeineered cars, have all the tech toys I could want and get to travel frequently. I can go out and buy us the foods we love without a second thought. Now I do NOT take any of it for granted and we do try to pay it forward. I like to think we have a great rythem of donating foods, clothing, toys and household items on a monthly basis and I also realize life will not always be this easy. It has been much harder in the past and we do not have the financial stability we used to have prior to JDM. So while the materialistic items are wonderful and fun the are NOT my strength and pillars.... I know if all that goes away tne warrior in me will still be strong!

I learned to surround myself with people that are grounded and supportive and I truly feel blessed. However no life goes without ups and downs and the biggest loss came with the death of my Dad in June. Nothing had me prepared for this cruciating pain and feeling of loss. Never can I put adequately into words how grateful I am to have been his daughter and for having had the greatest Dad I could have been given. His presence in me is strong and I learned that his confidence in me lives on and in a strange way I feel stronger then ever. Ironically when I was faced with one of my worst nightmares, loosing someone I love with all my heart, I also learned that it takes and breaks my heart but it does not destroy me. I miss him and cry more frequently but also bring him back alive in my heart by asking and reacting to situations with his voice in me.

Yesterday Connor had a checkup at The Children's Hospital in Denver/Aurora and the news are wonderful! He will go from 1 ml of Prednisolone to 0.5 ml daily and from 0.9 ML of his Methrotrexate Injection to 0.7 ML each week. He was given the choice of trying the oral version again which he was on prior to his Flare last year but he declined and said he will stay with the injection. How proud I am of both my boys! So much older then their years when it comes to medical dealings but still precious little boys when it comes to believing in magic! The greatest gift of all!

So my request to you if you have not done so this month. Sit down and write down 10 things you are grateful for and see the snowball effect. No, it will not take your pains and worries away but it puts it all in relations to what the choices are......

Hugs,

R A C A

Gearing up for the Holidays ❤️

It's ironic that my first entry in a while comes while sitting in the waiting room at The Children's Hospital. We got very lucky in regards to both, Connor and Alexander, receiving PT back to back each Wednesday. It makes for two hours in a waiting room for me but it also means just driving down the Mountain once each week :)

We also made a change in tne Boys Cottage School Program and they are now going one day a week from 7:45 am to 3 pm instead of twice a week from 11 am to 3 pm. The boys love it and so far I think the setup is wonderful...

 Well, especially for me as it is almost shocking how much I get done in 7 hours by myself!!! A dream for any homeschool parent - lol

We are also extremely busy preparing for the Holliday Season :) I will be getting my Mom in about two weeks and we are more then excited and happy about this! The boys will be playing the Grinch in the School Christmas Play and while they are excited about this as well they are also very nervous now realizing how many lines they have to learn... One thing our boys do not lack is ambition and confidence - lol

One huge part about our daily life right now however if the newest Fundraiser for CureJM and our part has been selling paintings to raise money. We had several paintings ready to sell that the boys had made throughout the year but we were thrilled and surprised to see how much interest there was and now we are all painting to keep up the demand. Even I picked up the paintbrush and love drawing little Stick Figure paintings with writings on them. Connor has picked up on this and has done amazing work in this as well! Alexander makes great action paintings and I am so proud of their creativity and joy in expressing themselfs.

If you like to see some of the Artwork we have made then please visit Artsonia and look at the Gallery 'Painting for a Cure'

http://www.artsonia.com/museum/gallery.asp?exhibit=720601

We also have an FB Event where you can purchase paintings available for sale and you would directly donate the cost to CureJM, it is public and listed under 'Paintings for a Cure'

https://www.facebook.com/events/1427942177423977/?ref=ts&fref=ts

The link to donate to the boys cause is

http://www.crowdrise.com/curejm-holidaychallenge/fundraiser/ankesmith. So if you find a Painting that has not sold yet on the Event Page then please write your interest under neath the Painting and MSG me your mailing address.

Now there are several other CureJM kids and families offering wonderful art products and sales and with the Holliday Season around the corner it be such a great way to buy a gift and in return give hope for a Cure by giving money for a Research! Have I mentioned yet that a few weeks ago CureJM was awarded the Gold Star for being one of the most outstanding Charities! Run by volunteers/Familes who want nothing more in life then a Cure!

So I will end with a couple of more links for you to please look at and see if they are offering something that catches your heart ❤️

Paracord for a Cure

https://www.facebook.com/events/549423788473099/?ref=ts&fref=ts

And Mary, Martha & Myositis

http://www.livingwithjuvenilearthritis.com/2013/11/mary-martha-myositis/

I wishing all of you a wonderful Holiday Season and that the joy will trump the stress that often comes with it. We are very much looking forward to the next two months but it will also be a challenge how to deal with the Hollidays as well as it will be our first without my Dad and of course it will be the 4th year anniversary of Connors battle with JDM. It all started in the end of November in 2009 and while time has taken some of that fear away I still feel a coldness creep into me when we get closer towards Christmas. 2009 and Christmas will always be tne one that I thought we loose Connor. 

Hugs,

RACA 

A chance to win a copy of the Book 'Living with Juvenile Arthritis'

Here us the most amazing chance to win the book my friend Kim Poston Miller wrote Living with Juvenile Arthritis. If you have a child or know one with JA, JIA, JM, JDM etc this book is a must have. Educational, Informative and a huge Support. 

http://www.goodreads.com/giveaway/show/67666-living-with-juvenile-arthritis-a-parent-s-guide?utm_medium=email&utm_source=giveaway_approved

So go to the link and hopefully you can win a copy. Even if you are not effected by this in your daily life it would still be a great book because if you know me you would get a view into Connors life.

Hugs,

R A C A

Alexanders Bucket List ... by Alexander Smith

Hi I am Alexander and this is my bucket list.
A bucket list is a list were you write down what you want to do in life and this is mine......

1. See the biggest plane in the world.
2. To be Captain America.
3. To be an architect.
4. To see the world.
5. To build the tallest building in the world.
6. Be an the Avenger.
7. To run so fast and never loose my speed.
8. To jump so high and far.
9. To never lose fun.
10. To be so so strong.

Connors Bucket List .... by Connor Smith

Hello my name is Connor Smith and I will write a Bucket List today. A bucket list is a list of things I like to do in my life.

1. Write 100 books in my lifetime or more.

2. Stay up and watch a scary movie at 12 am.

3. See the pyramids in Egypt.

4. Go to Pompeii.

5. See a NASA Rocket take off and blast into space.

6. Jump out of an airplane.

7. Paint another Sculptor.

8. See the World.

9. Have a the best life ever.

10. Eat at a Russian Restaurant.

That is my bucket list for the day or should I say my life?

Alexander's Journey.....

Today was Alexander's turn to see an Orthopedic Surgeon as he has shown some very strange walking and running habits in the past year.

I had brought it to the attention of Dr. Maynard, the boys Pediatrician, who gave us a referral to see Dr. Mindy Siegel. 

Today was the day and Alexander got to meet PA Bershinsky who ordered some x-rays right away.

The results are as followed. Both feet have issues but not the same kinds.
His right foot collapses in the middle, possible due to weak muscles. The assessment is that Inserts and Physical Therapy should be able to correct this by strengthening his muscles in his foot.
His left foot sadly is another matter as his ankle is not aligned with his knee. Most likely the insert and PT will not have much of an impact if at all. In that case he will look at it again in 4 months and then most likely will schedule surgery to correct the bones by breaking and resetting them. That will mean 8 weeks in a cast and crutches. 

Alexander was NOT thrilled to hear this but the brave little boy he is he accepted it and asked many questions already about the procedure and the rehab. 
This of course might hit right during the Winter Snowboard and Ski Season but then we also had Connor in casts for 8 weeks during that time two or was it three years ago? Gosh my brain is tired......

We have been very very busy either traveling or having visitors all summer which has been WONDERFUL and I will post about our adventures later on, but right now I admit I am sleep deprived, have not been eating well and my workout session pretty much disappeared. So now I am tired and we are facing a 5K this Sunday - lol

Hoping this will put me back into gear and move towards a healthier life style again.
Also the boys are now back in full time school and not to happy about it... they do come after their Mom in that regard ;)

Hugs,

R A C A

Reminiscing about JDM and 3 1/2 years .... pictures now and then.....

The JM Mom's and Caregiver Page on FB has got me thinking today. 

For one I was motivated to post a couple of pictures of Connor. One from when he was first diagnosed and being treated in the Hospital and one from just yesterday. JDM is a life sentence for now until there is a Cure, but for those who are newly diagnosed there is also a view into this life that shows it goes on and even if it is a roller coaster of ups and downs our kids will not always look the way a high steroid treatment makes them look.

Now there was also another post that asked the Question what are our biggest fears or worries since the Juvenile Dermatomyositis Diagnosis. This one is easy to answer but with a painful feeling inside:

My biggest fear is loosing Connor to this Disease. The next worry after this is if he can survive it and fight it all his life then what impact will it have on him throughout his life? 

Will it hold him back to live a 'normal' life? 

Will it stop him to pursue certain dreams or jobs due to this limitation?

Am I doing a good enough job to teach him that while he has JDM it will and should not rule him?

That he can go out and search for things that will full-fill him and make him happy and can he ignore that disease even if the daily medications and weekly shots might be a passenger for him for the duration of his life?

I think we as a family are making a great effort to do just this. We travel, we play and we find the things to do that he is able to do. So while he will never play Football or might never get to go on a Roller Coaster, neither of these are things a human needs to feel great and have fun.

As I tell him daily. His greatest gift and power comes in the form of his brain. It can be his best friend or biggest enemy.

That part goes for all of us. Same for Alexander and his ADHD. Same for me.... I can chose to see the good or focus on the bad.

So easy to type and not always to do....

Hugs,

R A C A

Missing Betty Mak....

Thanks to my friend Heidi, who I often refer to as my little sister, I was adopted into a most wonderful family.

First, thanks to FB, I met her beautiful Mom Nancy, and then was introduced to Heidi's Aunt and Nancy's sister Betty.

So many times I felt as if Nancy, Betty and I were the three Musketeers when it came to political issues and matters of humanity and human rights. Betty was also a voice for CureJM and had so much wisdom for me in regards to questions on how to deal with a rare Autoimmune Disease.

Her insight came from living with an Autoimmune disease for years and using many of the same medications Connor is and had been on....

We talked and messaged about the fear and frustrations that the side effects of some medications have. How they are needed to fight the disease but are also a thread to other areas in our body.

Getting to today's date, July 30, 2013, was not an easy journey for her. She had been in pain for weeks fighting Leukemia that with pretty good likelihood was caused from years and years of medications to control the Autoimmune Disease. More added pain came when it was detected that she also had Bone Cancer. Morphine was not a match for her pain and once again we learn how devastating Cancer is...

She passed away today and died way to young. My heart hurts for my friend Heidi and her Mom, Nancy. Betty's husband and her daughter and family..... 

Goodby Betty 💔 and may we meet again so we can talk some more about all the injustice going on in this world!

You are loved and adored by so many... And I will miss you so much on FB.

Ron, Anke, Connor & Alexander 

CureJM Conference and the Social Aspect....

There were many factors as to why we wanted to go to the Conference so much this year! For one missing it now for the last two years in a row after attempting to be there had been frustrating but also it brought us back to Chicago, the one place that brought us HOPE when Connor got sick...

I pointed out the medical news and seeing our beloved Doctors in another post and it really was a most wonderful part of this conference. Then of course there was the race part which was so much fun and really brought home how far Connor has come since December 2009!

However the one part that really was the heart and core of it all at the Conference was the social aspect... To finally hug and talk face to face with friends I had through CureJM and Facebook was absolutely a huge highlight for me and the boys. I wish I could list names but there are so many and I feel horrid to forget one or two. If you talked to me while we were in Chicago then know I mean you! You made me laugh, think and cry this weekend and I left more motivated thanks to you all.

I so wish everyone could experience this at least once but I know we will try to make the next Conference as well. As it looks it might be, but is NOT confirmed, in San Jose, CA in October next year :)

Hugs,

R A C A

Rock n Roll Race pictures....

When a Parent dies...

No I am not in a slump today but I have been reading a very fascinating book/magazine that revolves all around death. The stories and reports are mesmerizing and one of them pulled me in as to why the passing and death of a parent or parents is so hard.

We are looking at mile stones in regards to growing up and becoming 'Adults', but it is not the coming of age, moving into our first home or buying a house. It is not the part of starting our own Families and having kids of our own... No, through all this we are still children in our own eyes and to those of our parents.

When your parents pass you finally are hit with the fact that you are now not a child anymore as the one you looked up to is now gone. So to many of us the feeling of being truly pushed into Adulthood comes when your parents are dead and you can not switch into the role of a child and go to them for advice, rely on them to have the answers, and rely on them for that unconditional love.

So while I lost the unconditional love and support of my Dad, I am so grateful to still have my Mom as I am NOT ready to loose my Childhood yet. I still want to be someone's child!

Hugs,

A

Dr. Pachman, Connor and the Twin Research Study with Alexander

I am going to write about the past weekend events in section as to put all into one post would make for a lot of writing and information.

On Saturday, June 20, at the CureJM Conference were break out sessions in the morning and then sessions with Dr. Rider and Dr. Pachman in the afternoon.

Dr. Rider talked about Muscle Involvement and Physical Therapy which was very interesting and which brought me face to face with a Doctor again who we admire tremendously! We met Dr. Rider almost three years ago in Washington D.C. for the JDM Twin Research Study. She asked me how Connor was doing and when I told her about Connor's still stand in his tightness in his legs she right away told me we should come back to D.C. and see her as she thinks more can be done...

I was so grateful for her warm and friendly embrace and we had a few laughs as well 💙

The new Research on her end is focused as in part hw exercise can benefit but also which exercise needs to be avoided. Benefitting are Swimming, Yoga and any low impact sports.... The important part is to use the muscles but to not stress them. The ones to avoid are high impact Sports as in Karate, Football, Skiing and for example Jumping Robe on a Cement Floor. Another huge no no is Roller Coasters...

Then came the session with Dr. Pachman. She talked about the progress made in Research and also how the money raised from CureJM (this is were your donations went and are going :) are being used.

They found out the four trigger points for JDM/JM as in:

Trigger points are Stress, Antibiotics, Sun and Vaccinations

Ron and I knew pretty much what has been Connors trigger points. The first obvious one was the Vaccination as in the H1N1 Flu Shot Connor received in November 2009, and then we are guessing the second trigger was Stress when Connor had the Meltdown at the JA Camp last year in Estes Park. He had a Flare right after and since we don't think te sun and antibiotics where involved during this time we are sticking with Stress.

It felt good to see those points out in the open as I know many find the vaccination issue very controversial. 

Also with the money a Nutritionist was hired for the program and I love the fact that the impact of food is also now being considered. Many of us know there are foods that are antiinflamatory so why not utilize this or our children.

More good news came in regards to two new Research Programs being opened by Dr. P. She is now as well doing a Twin Study as well is looking for patients with JDM/JM that are now between 40 and 50 years old.

Now when I first entered the session I had Connor with me who had left the playroom to see Dr. Pachman. We had just gotten thru the door wen we saw her sitting all across the room in front of the stage. Connor took of running as fast as he could and yelled 'Dr. Pachman....Dr. Pachman!!!!' He have her a huge hug and it was such a joy to see Connor next to our Hero! 

She said she had no idea we would be here and was right away asking me if we would please enter her Twin Research Program. I asked her when and she asked if we could come in Monday morning. So after texting Ron and talking to him I made plans to spend an extra day in Chicago with the boys.

On Monday we arrived nice and early at 8:45 am and were promptly called in for the nail fold picture taking for both our dumplings. After this Connor was weight and measured and we were brought to a room for Connors PT assessment. Here Connor showed he improved by 1 point on the CMAS Score, up to 49!

Then came Dr. Pachman's assessment and while I thought she be happy at the improvements Connor had made she instead pointed out several things that needed to be addressed. First she said he needs to be back in Physical Therapy as the tightness in his legs should not be satisfactory for us. Then she said he needed his Thyroids checked and needs to have an eye exam every 6 months.

At the end she told me she wants to see Connor back in Chicago at least once a year but preferable every six months again.

We then had to go to the Lab to have both boys blood drawn. Lets just say Alexander had a very hard time with that one so a Child Life Specialist came in to help the boys through it. I truly or got what a huge heart and kindness everyone in Chicago had! They truly know how to get kids over their fears!

So and today on my way home from Texas I received a phone call from Dr. Pachman's Office to have me schedule an appointment for Connor for November. So I guess we will be back in ChiTown around November the 11th.....

More to come about this past weekends events but this was my view from the medical end.

Hugs,

R A C A

Santas Visit to our CureJM Kids in Chicago!

So Santa made an apereance this weeken to visit with all the kids at the CureJM Conference. He wrote an email about his experience to our Ninja Nana and here is what he said:



Was thinking about Santa's visit to the Cure JM conference Saturday. One request the children had was to sing a Christmas carol. I suggested Silent Night but was outvoted easily so we sang Rudolph the Red-nosed Reindeer.
Previously I listened to a wonderful Advent sermon series based around Rudolph. This morning my idle mind was in receive mode and I was hit with this:

Rudolph is so special now and arguably the most popular reindeer, but it wasn't always that way was it? Rudolph was different, visibly different, and that made him an easy target for the other reindeer.
They were mean, banned him from playing with them. It wasn't 'til Santa noticed the one special thing about Rudolph - his shiny red nose that others made fun of. Rudolph wasn't the strongest, not the most handsome reindeer, but he put to use his one special quality and did something that none of the others could.
The JM kids know they are different; we need to help them discover what is unique to everyone of them. They need to feel (you've heard this before somewhere) Wanted, Welcome, Useful and like Rudolph, Needed.
Santa

Now I like to add that I was told from our beloved Ninja Nana who knows Santa, that each story given by the kids put tears in Santas eyes....

She said he could not recall if it was Connor or Alexander but one of them sat on his lab and asked for Opa to come back from Heaven!

Hugs,

R A C A

Chicago Rock n Roll Marathon

So I am taking the easy route right now and will add my beloved friend Monica's Blog in here about some of the events from her perspective by running the Mini Marathon with Alexander....

http://thechubbygirl8partmarathon.blogspot.com/2013/07/inspired-and-excited.html?spref=fb


I ran it with Connor who completely amazed me as well. He said he wanted to try and run the race and his competitive being pulled through on each step he took. First his motivator was the fact he wanted this CureJM race to be his race and get through the finish line before his brother. The second push came by our fellow CureJM runners because each time Connor saw a bright yellow shirt he picked up his pace again as be wanted to pass as many as possible. It made me laugh how he would speed up to pass and then once he got passed them start walking for a while only to have to pass them again ;) the last 100 meters he took of as a sprinter that even I could not keep up with and he pulled off this race with a 13 min mile average!!! Take that JDM!

To read about Alexander's accomplishments which were just as amazing and inspiring you need to read Monica's blog. If you are inspired to start running or walking then please keep reading her blog as she truly is a motivator all around!

Pictures will follow once we get back home!

Hugs,

RACA 

http://thechubbygirl8partmarathon.blogspot.com/2013/07/inspired-and-excited.html?spref=fb

The CureJM Team!

Me and my hero Alex running!

Me, Alex, Connor and Anne!  This is the first picture in a LONG time I like how I look!  Loving watching the transformation in over the last 3 months since I started this journey!

I may be in that sea of people......  Likely the clump of VERY bright shirts at the start line on the far left side of the picture....

Me and Anke at breakfast.  I am always so impressed by how well she manages everything and has raised two of the politest and kindest young men!  Their compassion is amazing especially considering the medical issues and all.

Grateful and Sad...

The year 2013 has brought so much pain and uncertainty to the inner circle of my family and I am struggling with answers to the why....

So many times I remembered talking to my Dad how lucky and blessed we have been for decades to pass without ever have tragedy touch this huge inner circle we call our immediate family.

My Mom and Dad, five kids ... Four girls and one boy. Now add five spouses and 13 Grandkids where two are married and two are engaged and three Great Grandkids and our core is  32 strong.

Never had cancer or accidents entered that wall that surrounded us and all that changed when JM - Juvenile Myositis causes the first fracture in 2010 that put us all on notice that we are possibly not immune....

Luckily we fought back started feeling safe again.

 Granted I have lived with the fear of my parents approaching age for years but just as I tell my boys we will reach the 100 year mark I thought I could will my parents long lividly as well!

Then 2013 rolled in .... No big waves initially, just the Influenza for Connor which had us miss a wedding in January. Then came the call from my Mom on February 17/18 that my so beloved and adored sister Carmen suffered a Heart Attack during the night and was in the Intensive Care Unit in Heidelberg. Just typing this now gives me goosebumps again as that felt like a punch in my stomach.

Just three days later I received another call from my Mom. This time my beautiful sister in law was brought to the Hospital by my brother due to severe stomach pain. It turned worse in seconds after their arrival with a ruptured stomach and colon and she has been in and out of a coma since then. She is in the Intensive Care Unit now in Bad König and each time we think there is slight improvements as in her opening her eyes she turns two steps back. She fights fevers and had to many surgeries to count. 4 months and counting....

I will forever be grateful to my husband who took the boys and I to Germany for 2 weeks in April to celebrate our babies 9th BD with our family here. Looking back now, but not realizing it then, was and is the greatest gift I could have ever received.

Now I talk to my Mom about every two to three days when I am home and I was very edgy about the news comping from my Dad lately

He had had a checkup and his bypasses were pretty clogged up again and he was told he needed two new stents put in. Looking back this last procedure was the first nail in the coffin ... he was told they could not let him stop with his blood thinner medications as had been done in the past due to their fear of a heart attack. The procedure was done and my Dad went home after three days in the hospital with a huge bruise that covered half of his body. He had also received a new medication that he was unhappy about. He said it made him feel sick and after a few days of taking it and reading the side effects he decided to discontinue it. That was the day I had facetimed with my Mom and Dad. he looked to grey and tired and I recall clearly talking to him to sit down and rest as he had bern standing up and leaning over my Moms shoulder to see us on the iPad. Sadly by then it was already way to late. The medicine had caused internal bleeding and he had lost so much blood that he needed blood transfusions. From the loss of blood his heart valve was damaged and on Saturday the Surgeon told my family that he will be a top priority for a heart valve replacement surgery the following Tuesday. My Mom and Sister drove home after the conversation and after visiting with my Dad who was alert and awake and who signed the surgery documents.

I first got a Skype call from my Nephew Sebastian that very night who said that Papa had gone into cardiac arrest and that the team is working on him and that the whole family was on the way to Heidelberg. 30 minutes later I got a phone call from my sister Carmen that he had left us. The team at the hospital worked on him for 1 1/2 hours and his death was confirmed at 21:45....

Truly I felt as if the earth opened up and I was falling into a crack without anything to hold on. Ron was flying and the boys were luckily playing outside. I cried and cursed the fact that I was so far from home.  Luckily I was able to get a hold of Ron who has been my Rock since this day! He took charge off getting me set up for a flight out and I just had to function to pack bags and then face the boys. They came running in about 45 minutes later and I told them to sit down on Mama and Papas bed and I gave them the news. I was lucky to have had 42 years, Ron 15 and the boys 8. The three of us curled up and cried for a good 30 minutes before I put them on the sofa with their iPads as a distraction.

To this point my biggest challenge has been to stay strong and not let my pain show as I know I need to be the rock to others now that my Dad was to me.

The nights are my enemy now and thanks to Ron again, I am now in Germany to help my Mom and to be surrounded by my sisters and my brother. I know in my heart that it will be hard to go home and deal with this heartbreak without the distractions I have here.

I crave home and the need for everything to be 'right' again but how does one prepare to leave the only parent one has left??????

My parents were the perfect match.... 58 years of a journey that my Mom compares to a river. Smooth and Calm. Never were there fights, and NEVER was there ever the word 'divorce' in either's minds or thoughts. They were friends and lovers who created this amazing proud and strong family.

Now after all this I would have thought how much more can we face as a family? ... My brother in law was admitted into the ICU the week of the Funeral with so much Fluids around his lungs that it caused him breathing issues and lots of pain. He was admitted to one famous Cancer Clinic in Germany, the Thorax Clinic in Rohrbach by Heidelberg. The break we got was that no cancer was found! Now they are still keeping him as there is still no explanation about the fluid which keeps draining at a steady pace....

Klaudia of course is always on our minds. We got to see her last Saturday and we are planning on going back next week. 

I am not going to challenge or question God. My Dad was a strong Lutheran who took great comfort in his believe. We found a very worn piece of paper that he had made and handled often and that we believe gave him peace:

Psalm 23

Der Herr ist mein Hirte,

Mir wird nichts mangeln.

Er weided mich auf einer grünen Aue

Und führet mich zum frischen Wasser. 

Hugs,

R A C A

20 January 1934 - 8 Juni 2013 💔

To this point in my life there had been only one date before June 8, 2013 that caused me pain and fear. That was January 11, 2010, when the word and world Juvenille Myositis entered our life and changed the course of Connors life.

Now I have to add June 8, 2013, as a date that changed my life again and caused me pain I had never known before. I admit I was always afraid of the day I would have to face this but nothing could ever have prepared me.

June 8, 2013, just 4 days after my parents 58 Wedding Anniversary my so beloved Papa, my hero my strength passed away.

If you look at the title of this blog entry you might see he was 79 years old. A good age as we have been told many times that just does not ring true for me. 79 years and about 50 years to short for me! 

I admit I have always been a stubborn child, tne youngest of 5 children who always voiced as a child into Adulthood how unfair I found that I would get the least amount of time with my parents due to the age disadvantage. 

As a teenager I told with a huge confidence that I do not wish to outlive my parents as I knew then that their death would not be something I could deal with. So I lived life to the fullest and never feared death which I admit only changed when I had my own family. All of a sudden I was faced with fact that I have responsibilities and need to be there for others as well....

Now looking back I wish I had spend more time with them and had come to Germany more then once a year. Even in the hospital during my Dads last few days he told every nurse, doctor, patient how he needed to get better do he coud continue to fly to the US and see us there. Just three days more and he would have gotten a new Heart Valve.....

Tears are a constant companion during the night but I know that during the day I need to be strong for my Mom.

I hope everyone knows this kind of love that I received from my parents all my life!

Hugs,

Anke 💔