Health, Disability & Credibility

I started this post in Oct. and have thought about it several times in the past 4 months but haven't had the heart to finish it. I apologize in advance if it turns into a novel.

I think it's time for a health update on Scott. So many of you have asked the same questions over and over but I have been reluctant to post many Lyme updates on our blog. Actually, I am pretty reluctant to include Scott in most of my posts. There are several reasons for this. I think my main reservation is the misconception that follows a diagnosis of Lyme Disease. If you do not have a sick friend or family member, there is no way you can understand this disease. Googling LD does not make you an expert. It was easier for Scott when his paperwork said, "M.S." because people have actually heard of and know someone with that disease. Once that diagnosis changed, people's perception changed as well.

Scott's health struggle started back in 1997 during his previous marriage. He was bitten by something (tick, spider, who knows) followed by the onset of various neurological symptoms. He recalls Bells Palsy, vertigo, extreme pain and other issues. His health went up and down while he sought answers, visited numerous neurologists, endured spinal taps, MRI's and other tests all ending in an eventual diagnosis of MS. He was too sick to work several times during his last marriage and after months of unbearable medication/side effects his disease seemed to go into remission.

Fast forward to 2004 and Scott was feeling pretty good with minimal symptoms and a less stressful home environment. He still suffered from extreme pain but overall felt better than he had in years. During the summer of 2005 Scott made a decision to go commercial salmon fishing to try and get us caught up on bills. We knew it would be tough on his body but he was determined to make a dent in our debt and push thru the pain. He left mid May and fished for 2.5 months and came home a week early due to a severe injury. We have since learned that commercial fishing has a 100% injury rate...everyone gets hurt at one time or another and his time came and he almost had his arm ripped off.

Scott cooked and worked with the nets while fishing in 2005.

While he had been in Alaska Scott had proposed and although I was freaked that he had been hurt, I was ECSTATIC that he was coming home to me a week early!! He came home the last week in July and we got married less than 2 weeks later! We had been apart for 3 long months and since our pastor didn't get back home until Monday, Aug. 8th, we decided that Tuesday night sounded good! :)

This is how Scott looked when I picked him up from the airport. Tan and hairy! He definitely looked like a fisherman! I was the HAPPIEST girl in the world!

My mom took us on a wonderful family vacation in september and when we got back home we quickly fell into our old routine of work, work, work. In December, Scott started having neurological issues again and began dropping things. When he worked at the coffeehouse he would drop plates, cups and a pitcher full of milk. His weakness increased on the right side of his body and the pain returned. From the day he returned from Alaska his health steadily declined until we were sitting in the doctors office in March of 06, discussing Lyme Disease. We went to several doctors, neurologists and had tests, tests and more tests done...the same thing he had pursued during 1997-2002. As his symptoms got worse, he worked less and less and we started antibiotics to kill Lyme. We had no idea how tricky Lyme was at the time and were so relieved that it wasn't really MS. Ha. Little did we know....it would be the biggest fight of his life.

In March of 07, it was recommended that Scott apply for disability because his symptoms continued to get worse and worse. He began spending days at a time in bed and couldn't function many days without help due to the pain and brain fog. We found new doctors, ran more tests and after he lost feeling in his legs we pursued a more aggressive treatment. In Oct. of 2007 we found an amazing dr. here in KC and by Dec. of 07 he had started 2 a day IV treatments. He has been in IV treatments for the past 25 months and we don't have an end date yet. When we filed for disability, we were told that we would be turned down several times before we got our approval and they were right. He was denied 3 or 4 times and each time we appealed. During each waiting period, we continued to get more tests run and each month brought a more complete understanding of what was happening in Scott's body. We decided it would be best to hire a disability rep and we found one in July of 2007.

We made appeals to ODAR and I worked overtime pulling together all of the relevant medical files and our rep. continued to tell us over and over that we would know any week...we of course had no idea how SLOW the SS office was and we passed this same info on to everyone we knew. So, if you have managed to read this far...you may be wondering if I am ever going to get to WHY I was/am reluctant to put Scott on our blog....this is why... In may of 2008, Scott had been in treatment for 6 months and was on the verge of organ failure. His liver was failing, his body was flooded with Ammonia and he felt like he was dieing. We had struggled with his child support from day one and although he tried to get it righted and based on his actual income, he couldn't afford the legal counsel to get this done. It was a long and hard battle for him and when we filed for disability we hoped that this would help him pay cs until he could recover...but the timing never worked out. Scott hadn't spent as much time with the kids because he was so sick and he was really missing them and feeling like a bad dad. We decided to go to 2 field trips with the boys. One afternoon I drove him to the zoo and pushed him around in a wheelchair for 2 hours and the other afternoon we went to a museum where I again pushed him around in a wheelchair for 2 hours. It was painful for him but it was important that he got to see the boys and the boys loved it.

Two weeks later Scott had a court date for CS that he was too sick to attend. He of course was in treatment 6 hours a day still, so I went in his place. We had just filed another off the record appeal with ODAR and were told we would get our answer in 2-4 weeks. We were hopeful that disability would be taken care of soon and we wouldn't have to keep defending his illness and treatment to people who only cared about money. While we were in court, the opposing lawyer stated that Scott wasn't sick because he had just gone to two field trips and spent all day at the zoo and the museum. I was shocked! I hadn't mentioned it to our lawyer because 1. it wasn't an all day event 2. it didn't seem relevant 3. i PUSHED him in a wheelchair because he couldn't walk and 4. Just because you are disabled doesn't mean you can't leave the house! The judge looked at us, I explained the situations quickly to our lawyer and she set the record straight. Yes, he had gone to the zoo but I had pushed him in a wheelchair and he could only handle 2 hours. Yes we went to the museum but I pushed him in a wheelchair and it was also just 2 hours...not all day. I realize that lawyers like to embellish facts but the other side chose to use these 2 events to try and prove that Scott was not sick and that he should be able to get a job. They were not happy that we were asking for Scott's cs to be suspended until we got his disability decision. Thankfully, the judge did not fall for the ugliness and she stayed all activity until a disability decision came thru...

So, because of that one little event, I have been reluctant to post anything about Scott. Yes, sometimes Scott has good moments where his symptoms are manageable and he can participate in our family activities but that is just a snapshot of his day. I am also reluctant to post about many of his bad days/moments because that same summer we were threatened that if Scott was so sick he shouldn't have regular access to his kids. So really, we were screwed either way. Either Scott had a good moment he could share with his kids, and then be accused of not being sick, or he would have bad moments that fueled the fire and caused threats...it was such a stressful mess and I am thankful that our marriage and Scott's body survived the poison...

Whew! Did you manage to read this far? It did indeed turn into a novel and I'm not even done yet!!

So, in our fight for disability our time line looks like this...

• January 2006- Scott is no longer able to work.

• March 2006- Scott was diagnosed with Lyme Disease instead of MS

• March 2007- We filed for disability.

• July 2007- Hired a disability rep.

• July 2007- Off The Record request thru ODAR.

• September 2007- 2nd Off The Record request thru ODAR.

• October 2007- Found a local LD doctor.

• December 2007- Started 2 a day IV treatments.

• June(ish) 2008- 3rd Off The Record request thru ODAR.

• July 2008- Got our KS rep involved in our disability case.

• October 2008- Fired worthless disability rep and hired a new one from KC.

• December 2008- Scott's 1 year anniversary at the IV clinic

• May 2009- We received a letter from SS saying we finally had a hearing for July 9th.

• July 2009- 1st disability hearing. The judge decided she needed more info. on LD so she set up another hearing for August. 19th.

• August 2009- 2nd disability hearing with a medical expert and a vocational expert. We are told that we will have a decision within 6-8 weeks.

• October 2009- We get a letter saying another hearing has been set and will be the day before Thanksgiving. The next week we got a call from our lawyer saying the judge had called her and said we didn't need another hearing because she had made her decision. We are told it would take 4 weeks to get the decision.

• November 2009- We called our lawyer and were told that our decision had to be sent to a Decision Writer who would write up the judge's decision and it should be sent any day.

• December 2009- We called our lawyer again, right before Christmas and they in turn called ODAR. ODAR said that they would try and mail our decision before Christmas...

• January 5, 2010- Our letter was started.....

• January 14, 2010- Our letter arrived in the mail and Scott was too nervous to open the letter so he had me do it. From this point we had been waiting for this decision for 2 months shy of 3 years but it has been 4 years since he was able to work. The letter is 16 pages long and discusses everything....but the most important part is that the judge gave us a partially favorable decision. It is partially favorable because instead of back dating the disability to the date we filed, she made it retroactive to Oct. of 2007 when we had more lab tests and evidence of the illness.

That brings us to today, Jan. 28th. We called the SS office the week we got our letter and were told that it will take 6-8 weeks for the decision to be entered and before we would get our first monthly check...so all in all it WILL BE 3 full years! HOLY COW! No wonder families end up losing everything during the process! Kansas is one of the worst states when it comes to pushing along disability cases and the average backlog is 15,000! It took 5 months for our decision to be written up, submitted and sent to us. THAT IS BEYOND RIDICULOUS!!! We have also heard that it will take about 6 months for our backpay to be released so we are anxiously awaiting that check...where we can finally pay off the debt we have been unable to pay off for the past 3 years.

So, all of that to say that now that we have finally been approved for disability, I am considering adding more posts about Scott. He feels vindicated and justified with his new title and knows it is one step closer to getting back to zero. He no longer needs to defend his illness to those who don't believe him because the State of Kansas has agreed with him and approved his benefits. He no longer feels the need to prove to them that yes, even with good moments, he is still disabled. To celebrate this GIGANTIC victory, we made him a red velvet cake with an apricot sour cream frosting. The boys lit the sparkler candles and we sang, "Happy Disability To You, Happy Disability To You, Happy Disability Dear Daddy, Happy Disability To You!" It was a sweet little moment in a long battle for Health, Disability and Credibility...

Auto Pilot & Baby Books

I've been on auto pilot this week and my poor body is really suffering. I have not had a normal sleeping/eating schedule for months and since I became unemployed....it has gotten worse. It seems that my schedule consists of naps in between activities and it leaves me drained and only eating one meal a day. I can't sleep at night so by the time I finally get to sleep, I have to wake up 2 hours later, drive Scott to treatment, drive back home, nap for another 2 hours, get up drive back to treatment, bring Scott home and usually take another 2-3 hour nap where it's time to get back up, drive Scott to treatment, clean around the house for 2 hours then go back and pick up Scott....then home to get dinner together for everyone and stay up job hunting or more cleaning...and trying to fall asleep before I get to do it all over again...

We are sort of in limbo while we wait for things to fall into place. Waiting for disability, waited 3 weeks for unemployment, waiting for a job, waiting for heart surgery, waiting for the day we can get our truck back from the transmission shop, waiting for Scott's drivers license and waiting for some other life changing things....hurry up and wait! I know that all of these things will fall into place when they are supposed to and I really know that I am supposed to be more proactive during this waiting period...but I am just so tired.

I have accomplished one big thing this week...scanning baby photos. We realized that Scott did not have any baby photos of the kids so we borrowed the books from their mom and I scanned, scanned and scanned. I am not sure what I am going to do with them but since their "official" baby books will come from their mom, I may just make some collages and get them printed for our books. I have been saving drawings, samples of english/writing, math, science and grade cards from each of the kids and have them in their own 3 ring binder. I got them all sorted and labeled this week and put in chronological order. I think I will print the baby photo collages and make pages to add to these books. I want to make some of each child, for each year of their life. Since I only have pics since 2004, I am hoping the baby photos will be enough. I know it was a big step to let us borrow the books so I am grateful to have the photos for our books too.

Last week the boys and I were walking down memory lane and Noah mentioned all the walks we used to go on...so I dug out some photos from May 2005. These photos were taken right before Scott went to Alaska and it happened to be a day where he wasn't feeling too good and stayed home to nap. It was a great Sunday afternoon and the boys and I had a great time. Noah was 6, Eli was 4 and Lucas was 2.

Aren't they adorable? Man am I missing babies right now!!!

Noah's Song

Noah has been playing the clarinet this year in the 5th grade band and he is really enjoying it. He wrote a song a few months ago and Scott promised to help him record and burn it to a CD. They had that opportunity last weekend and they had such a good time together. Scott helped him work out the melody and he played the keyboard and other instruments while Noah played the lead. The sound is fantastic and its easy to imagine he is on stage in a big hall...playing his masterpiece. These 2 are best friends and I know this will be a life long memory for both. Great job boys!

*When I published the video, the photos became blurry so I apologize for that oversight. I will try to fix it but in the meantime you can still enjoy Noah's song.*

Creativity...Where For ART Thou??

Last week the boys and I had a great art filled weekend. We worked on decorations, drawings, sewing, gluing and painting. I love it when we can spend a few hours being creative together. It can be overwhelming to have 3 little boys all begging for your attention at the same time and I love it when we can find common projects and work together.

We finished our Valentine's Tree and are pretty proud of it. Noah ended up sewing most of the hearts and he just wouldn't quit. I though for sure he would get bored after he finished his first one but he really surprised me...and kept right on sewing for 3 hours. Our tree has 3 branches with 7 hearts. Each heart represents a family member. Some have words sewn on them and some just have sparkles. It is a cute little reminder of our unique family tree, full of love....and we made it out of materials we already had...awesome!

This is my awesome art/office/library room. I work in here and we create our art in here. The red walls were here when we moved in and its one of my favorite wall colors. Perfect for an art room! Eli worked on redoing his Amazon map while Lucas and I started the tree.

I had to put in the little photo of Noah smiling while we worked because his two action shots make it look like he was miserable. I promise he wasn't...he was just really concentrating on making the hearts perfect...he can be quite the perfectionist!

After Eli redid his map, he helped me glue the stones onto the vase. We used a cappuccino bottle for our vase and after we covered the entire thing with shiny pebbles...I decided I didn't like it...and took them all off with an ice pick...don't ask...but Eli really enjoyed my hot pink, mini glue gun...have I ever mentioned I LOVE that thing?? I just put the tree on the mantle tonight after I wrapped it with ribbon...I know Valentine's Day is a few weeks away but I love the hard work that went into it and wanted to be able to enjoy it for awhile. Didn't they do a great job?

Here is the new map that Eli made for his post card brochure. The map shows South America and labels all of the countries. The bright green shows you where the rain forest falls in each particular country. He is also modeling the front of his book after he put the final touches on it with special stickers. I know you heard it before...but we are so proud of this project! He did such a fantastic job!

On Sunday Noah decided to spend a few hours painting. He chose a flower and spent the afternoon sketching in the design, painting in the background and starting on the foreground details. He got a little frustrated as he went along because he was afraid he had messed up several times...but I told him the best part about being an artist...you can keep adding paint, changing the design and "fixing" your mistakes until you are happy with it...it just takes practice.

He was so serious while he worked on his art...I need to teach him to relax and enjoy the process too...and not to worry about the finished product just yet...

This is where we are in the process...he is getting ready to start adding some details...but he is waiting for inspiration to hit so it is waiting for him in the art room...

Noah told me that I should post this to the blog too...so here it is. I made this last summer and when we hung it up last fall we put it near the front door to be used as a cork board. I painted cork and secured it to the back of an open frame. It looks like an open shadow box but with more class. :) We put our weekly agenda on there so the kids could see what activities they had that week as they walked out the door. Right before all the leaves fell, the boys took me on a walk down our favorite block. We picked up leaves along the way and I made a fall bouquet that we gave to Grandma for her birthday. It has been in our agenda frame since Nov. and it is just too pretty to move...I really like it! Now I just need to get some vinyl from Ashli so I can keep decorating...it is GREAT therapy!!

Happy Birthday Scotty!

Today is my sweet hubby's 37th birthday! Happy Birthday LOVE!

While I am still adjusting to being married to a man who is waaay to close to 40 for this "29" year old...but I think I will still keep you! There are so many things that I LOVE about you that I think I will go ahead and be sappy...and make a list of 37 things that I love...in no particular order.... so you can check the list anytime you think I have forgotten them. hahaha

1. I love your sweet heart.

2. I love your creative mind.

3. I love it that you want to continue learning so you read and study anything you can get your hands on.

4. I love your beautiful eyes.

5. I love your encompassing hugs.

6. I love your sweet smile.

7. I love our intelligent, thought provoking conversations.

8. I love it that you take the time to discuss physics with me just as if I understood it all. :)

9. I love it that you love your children fiercely and would do anything for them.

10. I love how you treat and speak to your children.

11. I love how you parent your children and show them respect.

12. I love your passion for music and how it moves you.

13. I love and appreciate your great attitude when it comes to Lyme Disease.

14. I love your beautiful voice and how you use it to give praise to your Creator.

15. I love your hearts desires.

16. I love it that you adopted me into your sweet family.

17. I love it that you support me on a daily basis.

18. I love how you tell me you love me multiple times a day.

19. I love your concern for others, even when you feel horrible.

20. I love your random hugs, sweet words and loving looks you give me every day.

21. I love it how you can talk to anyone, in any situation.

22. I love it that I feel safe with you.

23. I love your faithfulness and gentleness.

24. I love it that you believe your biggest achievements are your children.

25. I love how you support me in all situations.

26. I love how your toes wiggle and you play footsie with me in your sleep. (sorry, I had to)

27. I love it that you are a snuggler and want to be with me.

28. I love it that you love my mother, take care of her and respect her.

29. I love it that you are always striving to be a better father and husband.

30. I love it that you are mysterious and giving.

31. I love how you would give your last dime to help anyone in need.

32. I love how you make me a better person by challenging me.

33. I love your music and how you play and sing. (grandma)

34. I love it that we can watch and enjoy football games together. (noah)

35. I love spending time with you & that you are the BEST daddy that a kid could ever have! (Lucas)

36. I love how you make me laugh. (Autumn)

37. I love how you are a good cook. (Eli)

Well, those are the ones I was allowed to post to the blog.......we love you and are so glad you are in our lives. You are a fantastic father, son in law and husband! We love you scotty!

The Tooth Fairy Redeemed Herself....

I almost forgot to tell you that the tooth fairy redeemed herself! You might remember last August when the tooth fairy was BAD...and she forgot about a most important little tooth...well, this time that girl was on.the.ball!! When we picked the boys up on their last snow day, Lucas casually mentioned that he had just lost a tooth and it was in his pocket....that was the only mention...now fast forward ten hours and when every one is in bed...and the tooth fairy panics...realizes that it is late and she foggily remembers someone mentioning a lost tooth...she rummages thru the laundry basket, all the pockets in the jeans...and coat...and then moves her way to the bed...stepping on toys and tripping on shoes as she makes her way...I ONLY know this because she told me before she sprinkled her fairy(?) dust and flew away...as she reached the tiny bed...she slipped her hand under the pillow...and didn't feel anything....so she tried again...afraid to wake the sleeping cutie....but waaaaaay back under the pillow was a little baggie....with the precious loot....and she quietly pulled it out and fluttered away....she was ECSTATIC! She was thinking that a little 7 yr old boy was testing her again...and this time he was sneaky...and didn't mention that he would be testing her....and boy was he going to be surprised in the morning!!!...especially when he awoke to a lumpy pillow...and a bag full of pennies and dimes....because you know, the economy and all...that poor tooth fairy had to scrape the bottom of her fairy bag...and wouldn't you know...early the next morning that little 7 yr. old went running into my bedroom yelling, MOMMY! MOMMY! The TOOTH FAIRY CAME!!!......and mommy smiled...knowing that the tooth fairy had redeemed herself! Whew!

1935

My Aunt Norma sent me some more great photos from 1935. My dad was 3, Aunt Norma 6 and Aunt Betty 5 months. My Aunt Betty said, "Mother and Dad were hard workers. I never saw either one of them in bed. They were out working when i got up and were still working when I went to bed. Mother worked in the fields and made three wonderful meals a day. She made our bread, baked pies, canned lots of fruit and beans, made jelly and fed the hired help. After a full day she would stay up at night making our dresses, drapes, patch quilts, etc....Mother did have some health problems. Women were not made to work like she did, but that didn't keep her down long."

I am sad that my memories are fading the longer my dad is gone. He used to tell us the best stories about growing up on a farm during the depression. I need to get some of these stories written down by my sweet Aunts (hint, hint) so I can read them to the kids. I vaguely remember one where Aunt Norma stabbed my dad with a fork but somehow Aunt Norma's version involves my dad trying to take something off her plate...his version never mentioned that. Funny.

I love these old photos and the memories that come with them. I really like seeing my dad as a 3 yr. old too. It's hard to believe that my grandparents have been gone for about 20 years too. Life just goes by way too fast! Thanks for the special photos Aunties!

It's Not A Contest...But You Feel Like You're A Winner Cause It's FREE!!

I saw this on Mommys Wish List today and thought I'd share it with you. I am always looking for more songs to add to my shuffle and these sound like good ones to keep me moving at the Y. You can download "The Biggest Loser Workout Mix", courtesy of Subway here. This free album of 12 song downloads includes:

Bleeding Love by Leona Lewis
American Boy by Estelle
Umbrella by Rihanna
Stronger by Kanye West
4 Minutes by Madonna
Love Story by Taylor Swift
No Surprise by Daughtry
Sugar by Flo Rida
Paparazzi by Lady GaGa
When I Grow Up by The Pussycat Dolls
Second Chance by Shinedown
Damaged by Danity Kane

P.S.- I took my new songs to the gym and boy do they keep you moving. I wasn't sure I was going to like them when I listened to them at home but when I was looking for that extra burst to keep going at the gym...they worked...down 3 more lbs. yeah!

Pausing can be a blessing...

Our family had a great day today because I now have a chance to...pause. We all got to sleep in, took the weekend off of IV's (due to weather) and played in our PJ's all day. Lucas and I started a Valentine's project and it evolved into a Valentine's tree. It involved wire, painting, lots of sewing and gluing. Both Lucas and Noah worked on it with me and I am very proud of their sewing skills! I was thrilled when Noah asked if he could help me. He said he had always wanted to sew but never really got to....so he spent almost 3 hours sewing with me and I am super impressed with his patience and determination. As soon as we finish the project I will show you our masterpiece.

Today, I had the opportunity to hear Noah's heart and to see how respect is vital to him as a young man. If he does not feel respected, he will not pay attention. If he thinks that you think he is stupid he shuts down and does not retain any information. He thrives on respect and does not do well with sarcasm...the thing about Noah is that he is naturally sarcastic too but we have been talking about it all weekend and he is starting to see hurtful sarcasm vs. funny, non hurtful sarcasm. He is the one who asked for the adults to speak in a calm tone when working out our house rules. There have been moments when I see him shut down if I am frustrated with him and am not talking to him with respect. He has seen and heard that way too much that he just retreats within himself and you lose any teachable moment you may have had. He is such an amazing young man and I love to see what he accomplishes when he feels respected and takes the time to finish well.

We have been challenging Noah to push himself and to take the initiative to learn things...this has led to many trips to the computer to research topics such as mold on plants and what is the point of an Advent calendar. We are very proud of this new spark we are seeing as he pushes himself to learn. Tomorrow, the boys want to paint and Noah wants to work on his blog...he has really got some creative juices flowing lately! We LOVE that!

R E S P E C T

Today ended a very long 2 weeks for us...we hadn't seen the kids since last year(!!) because our half of the holiday came during the first part of their break and then they started back to school last Monday...that made it 2 whole weeks and entirely too long to go without hugs and kisses! We talked on the phone and they enjoyed 3 snow days and got to come home early on Friday. Yeah!

Tonight as we fit as many people as we could in the smallest amount of space, cuddled on the couch (they must have missed us...), I got to have a great conversation with Eli. He looked at me with his beautiful brown eyes and said, "I don't think people respect me." I told him that I respected him...and after a huge grin we had a great conversation. We have talked about this subject before and he is becoming sensitive to what that really means. He had an incident with a cousin that really upset him and after he felt like he had used his words (we are big on them using their words to communicate rather than throwing a fit...) and his message was not being received...he locked himself in the bathroom. This only led to more frustration for him as his cousin kept trying to get in the bathroom and each time Eli would lock the door, the cousin would unlock and open the door...apparently it wasn't pretty. He said he was upset because he felt he needed to be alone but the offending person would not listen and that made him feel like the cousin didn't respect him....

I was proud that this awesome 9 yr. old could recognize respect and a lack of respect even if it was coming from someone close to his age. We talked about family and kids and how his cousin may feel and how he may not even be aware of how to show this to others his age. It's kind of a strange thing to think about respect when it comes to people your own age. It is easy to think about respecting your elders, grandparents, pastors and leaders but not so easy when it applies to your generation. In our home, we want to emphasize loving one another and one way we can do that is by respect. Everyone in our family can show respect by their words, actions and even their thoughts and that led us to write out some family house rules. Most of these came from the kids.

Kids Space Rules
Make your bed
Brush your teeth.
Turn off all lights, fans & radios when you leave the room.
Do not wake up your siblings.
This is a safe zone - no bullying allowed.
RESPECT each other & their space.
Which FRUIT will you choose today?

Family House Rules
RESPECT: given to everyone.
INTEGRITY: doing the right thing when no one is looking.
Leave all rooms better than you found it. (I admit, this is mine)
Eat 1 healthy snack per day.
Get 30-60 minutes of exercise per day.
No biting sarcasm that hurts feelings.
Choose one fruit to practice a day.

Adults specifically- Speak in a calm voice when you are upset.
Kids specifically- Obey the first time.
Be consistent with Lady Bug.

After we went over our list we figured that respect would almost cover all the rules because it can apply to so many areas in our lives. I hate it that Eli felt disrespected but I am glad that a real life experience brought about an amazing conversation and the opportunity to give him tools for coping with future situations. These kids are amazing....what a great testament to some good parenting on all sides!

I'm On A Roll...

With all this extra time I have being jobless...and with all the extra hours in a day due to not being able to sleep(!!) and with being snowed in again...I am on a reading and researching roll. In between searching for and applying to any and all jobs I find that remotely fit my background, I have been looking at other bonus/step mom sites. Oh. My. I would have to say that I am THANKFUL that I haven't looked at these before. I think you could really get sucked into that world and come out wearing your victim badge as proud as punch...do people still say that? Hmm...Anyway, did you know that I am a certain type of step mom? I have a label! I am a CHILDLESS stepmom! Wow...I had no idea...I thought that I had 4 kids...hmmm...ok...OH! So because I haven't actually birthed a child I am childless...Ohhhhh....see I thought that I was ONLY a stepmom BECAUSE I had four step kids.... *Scott thinks you might take that paragraph as me being angry so I just want to clarify and say that this does NOT make me angry...I am just sarcastic... *

I just had no idea that someone dissected the types and roles of StepMom's or StepDad's so much. I have seen people use their "labels" (divorcee, female or whatever) to prolong their victimness and because I don't feel like a victim, I guess I don't need to further label myself. I don't normally use the word StepMom because we are rarely in a situation that requires me to announce that. I don't nec. like the word either but I will use it to explain my relationship with the kids if I need to. I'm not sure why I don't like the word, other than the whole evil step mother thing, but I know that when I dreamed of my life I never in a million years thought I would BE a stepmom...so maybe that is why I can handle Bonus Mom better. I didn't even know that term until a year or so ago and the kids liked it too. When someone asks about my kids I usually tell them I am a Bonus Mom and they always say, Bonus Mom? I LIKE that!

I think maybe the best part about finding these step blogs is to settle my heart and mind when our situation gets frustrating. We have a fantastic co-parenting situation compared to 85% of the other steps I have met online. They have horror story after horror story and sometimes it becomes a competition on who has it worse. I am thankful that things only seem to improve as communication gets better and hearts are mended. Divorce is such a nasty thing and it can hurt for a very long time...even if you filed first or feel justified in your decision. It really messes with your self worth and that may be the hardest thing to get over.

In some of my reading today I found a Bill of Rights for Children of Divorce. I think both sides have done pretty well in our case, though I see a few things that could have been handled better in the past and some that need to be handled better in the future.

1. The right not to be asked to "choose sides" or be put in a situation where I would have to take sides between my parents.
2. The right to be treated as a person and not as a pawn, possession or a negotiating chip.
3. The right to freely and privately communicate with both parents.
4. The right not to be asked questions by one parent about the other.
5. The right not to be a messenger.
6. The right to express my feelings.
7. The right to adequate visitation with the non-custodial parent which will best serve my needs and wishes.
8. The right to love and have a relationship with both parents without being made to feel guilty.
9. The right not to hear either parent say anything bad about the other.
10. The right to the same educational opportunities and economic support that I would have had if my parents did not divorce.
11. The right to have what is in my best interest protected at all times.
12. The right to maintain my status as a child and not to take on adult responsibilities for the sake of the parent's well being.
13. The right to request my parents seek appropriate emotional and social support when needed.
14. The right to expect consistent parenting at a time when little in my life seems constant or secure.
15. The right to expect healthy relationship modeling, despite the recent events.
16. The right to expect the utmost support when taking the time and steps needed to secure a healthy adjustment to the current situation.
17. The right to be allowed to love the new bonus parent(s) in their lives without being made to feel guilty.

Happy Birthday Dad!

Today would have been my dad's 78th birthday. I can't even imagine him that old because I was worried about him when he was only 65. His death affected me deeply and helped develop my faith as a young adult. I was only 19 but felt like I had lived a life time of sorrow in those 7 long months. I learned many, many lessons, experienced a miracle, crashed to the bottom and made my faith my own. I am thankful for the time and the relationship I had with my father and I still miss him after 13 years.

Here is a photo from 1935. My Grandma Hedrick is holding my aunt betty, aunt norma has her arms crossed and my dad was only 3. What a cute little boy.

Blizzard Number 2 Is On Its Way...

I am not a big fan of winter....I HATE being cold and would rather be in the sun...but the kids have been having a great time. We enjoyed our white Christmas and as of right now, are in the beginning hours of our 2nd blizzard. The boys didn't have school today, get another day off tomorrow and I was told they are hoping for friday too...I can handle a little bit of snow, love it when it sparkles but then disappears quickly...but 18" so far is crazy!!

That would be an icicle...dipped in fresh snow...


Because Lady Bug was such a B.I.G. help she had to watch Noah from the kitchen door.

Keeping Up With Mom - Feb. 3rd

Hello family and friends!

This post will be the new place where I update you on mom's health. The original post has 7 months worth of writing and it is slow to load. If you want to reminisce thru that roller coaster ride, visit the 2009 Heart Posts link at the top of the page. As this post moves down the blog, you will always be able to access it thru the Keeping Up With Mary Ann link at the top of our blog.

Now, for your update... I have added some news here and there in our family blog and have included photos of mom when she's feeling good. I still have requests to give more frequent updates so this is for all of YOU! :)

Feb. 3-

Yesterday, we had an apt. with the heart surgeon, Dr. M. He is such a great guy and I got a big hug from him when we were leaving. We had a great conversation about mom's progress. Her o2 was great, blood pressure perfect and her lungs were clear. He could still hear her murmur but her heart was beating strong. I thought he might tell us that she was doing so well that if she wanted to, she could put off or not have the surgery but that was not the case. When I told him my thoughts he kind of laughed. He said that he wouldn't say that because of a few reasons. 1. He didn't feel that mom was happy with her quality of life. 2. He feels like he didn't get to finish the job and he wants to do it right. 3. He feels that this is our window of opportunity.

He feels that mom is just about as strong as she can get with her severe mitral valve leak and he doesn't want to miss this opportunity. My fear for the surgery, is her heart not starting back up when they take her off of the bypass machine but he felt that wasn't our biggest concern this time around. We discussed worst case scenario and we all agree on what that is...but he is still optimistic about the surgery. You might remember that he was always very optimistic along the way but I always needed that. He wants to run a test on her neck/arteries to make sure there are no blockages so the risk for stroke is minimal. He listed a few concerns but said they are the same concerns he would have had during the first surgery. He doesn't seem to think that her first surgery will affect the second one because it has been 10 months and she is much stronger now.

Mom picked the date and he said it sounded great. Unless there is a schedule conflict or mom gets sick, we will stick with the 22nd. I was hoping that this new surgery would be quicker than the last surgery because there is only one thing that needs to be fixed....but I was wrong. Because he will be going back in to places he thought he was done with, he will have to go thru new scar tissue. That can complicate the surgery and make it even longer than the first time! I think the first time was like 12 hours....so I asked him to knock me out for the surgery so I wouldn't have to endure the worrying...he thought that was funny...I wasn't nec. kidding... We discussed all aspects of the surgery and he has decided he will need to completely replace the mitral valve. She already has one organic valve so now she will have two. Overall, I felt good about the appointment and am trying not to freak out about the approaching date. I feel like I need to spend as much time as I can with mom...just in case...and dear Aunt Sandy, your letter was very sweet. I am trying not to be fearful but I am not 100% successful. I believe that God is in control of all things...I am just fearful of an unhappy outcome...though happy for mom...I am being selfish. Thank you for your sweet words of encouragement and your prayers. I love you!

P.S. Mom got her hair cut super, super short last night. Most of it was gone anyway so we just made it official. I am going to curl it tomorrow night to see what kind of body we can give it.

Jan 25-

Well, mom has been sick for over a week now. We went to see her cardiologist last week and he gave her some meds...did I mention this before? I can't rem. Today was her last day of the z pac and she is feeling pretty good. She still gets out of breath easily but is improving. Dr. R. told us that he was very pleased with her progress. He said that she has surpassed all their expectations and they are very happy with how she is doing. He said that in her case, she can not continue to live like this for 5 more years and that at some point, we will have waited too long and won't be able to fix her heart. He said that we really need to think about this next surgery and set a date. Mom shared her fears with him regarding her strength/lack of strength but he reassured her that she won't feel like she did before the surgery and that she can't wait for that because it won't happen. He had us set up an appointment with Dr. Miller

Jan 15-
Mom has felt pretty good for the last week and has only had a few hours of nausea. As you know, in her former life mom was such a hard worker and that hasn't changed at all even with heart surgery. She is starting to work on her taxes because she wants them done before her surgery. We have plans to drive to Ottawa next week to go to her house, make sure it's still standing, get her other tax papers, pack up some pottery and check on her rentals. She continues to be our official "clothes folder" and loads/unloads the dishwasher as well as some light cooking. She is taking care of her own meds and most of her meals now too.

For Christmas, I got her a book about Hymns. She LOVES to sing and loves her Hymns and I thought it might be good therapy for her too. The book tells the story behind the Hymn and she is half way thru it already. She has found her favorite preaching show and stays up till Midnight just so she can watch it. It is very sweet to hear her sing the hymn at the end of the teaching. I just love to hear my mom's heart. We are preparing for something that mom has not done in almost 48 years....a short haircut! She has lost so much hair (from stress & meds) that her once beautiful braid is microscopic...and really too hard to braid. We have begun discussions about getting her hair cut short and as you probably know...it makes her sad. Her long braid has been her trademark for so long that it is like cutting off an appendage...so I think she is going to put it off until the very last minute...but I hope to get it done this month.

Please continue to go before her in prayer as we try to prepare for another surgery. It is very scary for all of us. It is sooooo hard to imagine going thru that again. Last time, we had no idea what was in store for us and I think that always makes it easier. This time, I have a little more of an idea and it exhausts me just to think about it. Can I tell you my thoughts (fears) without you judging me? If you read thru the other heart updates you know that it was a roller coaster and I lived in fear thru most of it. I don't like living or reacting in fear but that is what I tend to do. So, now that I am jobless...I am trying to outguess God...what could he be thinking? What could he be planning? My last job was so great in that my boss was super flexible and let me work from the hospital and from home at all hours of the day and night...but 99% of jobs won't let me do that. That flexibility let me be with mom, take care of her and take care of my hubby who couldn't drive for the past 9 months. So, in trying to figure out our next year, my fears are: 1. I don't need to worry about a less flexible job and not being able to stay at the hospital because mom may not survive the 2nd surgery...(I KNOW! This is horrible to even put out there into the "universe" but it is my #1 fear!!!!!) 2. The reason I was laid off is because I am going to need to be free while mom has this second surgery because it will be similar to the first time. (Not sure this is valid cause He could have just let me keep my flexible job??) So, basically, that is all I have which means my big fear is again, that mom won't survive and so it won't matter what job I have. Horrible huh?

We talked about it 2 nights ago and I know that it is one or the other. Either mom will survive and bounce back (whether it takes 1 month or 10) or she will not survive and we have to figure life out from there. I am praying that she survives because, I really like her! I know that if anyone could do it, it would be her. Her chances at survival get better and better every day as she works harder and harder to get stronger. I can also rest easy in knowing that she won't rem. 95% of what happens before, during and after surgery so she won't really be suffering. I really worried about that before but she does not rem. much from the past 9 months so that is one less thing to worry about. Sooooo, fear is my enemy again. I know that fear paralyzes me and causes me to shut down and it diminishes my faith...but when it comes to the life of my mother...it is hard not to have fear. I don't want to live thru the pain of losing my only parent. I will have no family near me (unfortunately Bill has removed and been removed from our lives as he is so toxic right now) and everyone else is in FL, CA or TX. I am scared about not having a support system and scared of my life without mom...but I am trying NOT to dwell or think about that as that is a lot of extra worrying that doesn't help me one bit...but it lurks in the back of my mind.

So, again, please pray for strength for mom, for a successful surgery, for wisdom, God's timing, God's will and me learning to trust one day at a time instead of fearful living. Love you all!

Jan 10-
Mom had a pretty good day today and helped serve drinks during dinner. She got a refill for Scott and Lucas said, "I know your not our maid grandma, but could you get me some more tea?" It was very sweet and of course grandma obliged. She continues to push herself and exercise every day. Sometimes that involves elastic bands, balls, walking around the house, stretching and going up and down our staircase. She is doing great and was "released" today to take her own shower. We were given a shower chair and as long as I put that in and take it out, the therapist feels she is strong enough to get up the stairs and back down. She is pretty excited about that. Please continue to pray for her heart, endurance and strength. Pray for wisdom as we are discussing a surgery date. For those of you who have her cell phone....she has it on most days and is ok talking now. We are very pleased with her progress. Praise God!

Jan. 3-
It has been 2.5 months since mom moved in and I am happy to say we have only been back to the hospital once. She was there for 4 quick days to get some IV antibiotics to help her get over bronchitis. Since she has been home she has been working, working, working. She has improved so much that sometimes it is hard to imagine her at deaths door on my birthday last June. For the past month she has been working on her stamina by cooking and folding clothes. When she first started, she was very weak and could not stand very long in the kitchen. She would cook something or make a salad as quick as she could and then leave to go rest. My poor kitchen! She couldn't stay long enough to clean up her mess so that became my job. She kept pushing herself and now she cooks every day. Most days she cooks/makes her own breakfast and lunch and will even make dinner for us. It has been a big help, especially since I was sick for 3 weeks starting before Thanksgiving.

She continues to see an Occupational therapist, a nurse and a Physical therapist 2-3 times a week. Her OT told her (after Christmas) that she was the talk of the office because of how great she was doing compared to just a few weeks ago. Everyone that meets her loves her and they get attached pretty quickly. I think we might have to adopt the OT once her time with mom is up. She is very sweet. Did I tell you what happened when mom went back to the hospital? She was admitted as a dialysis patient and put into a beautiful, private room. I was confused, but tried not to panic too much as the nurses argued with me on whether she was a dialysis patient or not. Turns out someone in admitting made a mistake but it allowed us to have a fantastic room. Once the nurses heard that mom was back, they all started trickling in to visit her. All of her buddies from the 3rd floor, Dr. Millers PA, Dr. Millers secretary and some of the docs came to say hi. Even Shiela, who LOVES mom, came to visit from the 3rd floor (we were on 4th) and she took mom outside for a stroll around the building. (It was in Nov. so it was much warmer outside!) It was very sweet for them to show her such love. The nurses even sent her a birthday card once Dr. Miller told them he came to her party. They turned out to be a good group after all...

We are still struggling with a few issues and would love any ideas that you may have. Her main problem is her stomach. She fights nausea almost everyday and it is really hindering her recovery. We are going to start a food diary to see if we can find any patterns but our unscientific guess is that the culprit may be grease. She seems to get sick if she eats meat. Her diet mostly consists of cottage cheese and fruit because it doesn't make her sick. Our second issue is her hair. She has lost most of her hair and it hasn't slowed down at all. I noticed this problem when she was in the Hoeger house last Oct. and since then she has lost handfuls. Her long hair is very thin and her braid is sooooo tiny. I would like to fix her hair so that she feels better about herself, but I am not sure a short haircut will fix the problem. What can you do with super thin hair? I don't rem. grandma having that problem.

I still help mom with her bath because it is upstairs and she must climb 18 stairs. We are both learning about gravity (haha) and what happens to our bodies when we age. She feels she looks like an old woman now and compared to how she usually looks, I can see why it bothers her. She has always looked 10 yrs. younger than she was....until my dad died and then she started to age faster.

We haven't seen Bill for months and months. I am not even sure the last time he saw mom...maybe Sep? He has become an angry young man and is dealing with his own demons. We have had several conversations that end in cruel words and yelling so I am currently keeping my distance. He made the decision to close the Potter's Wheel on Dec. 23rd and that makes me sad for so many reasons. Mom wants to travel to Ottawa so we can pack up her pots and other items and get them moved to her house. So, there is lots going on as usual and lots to pray for. I do have one particular prayer...Mom's rentals. She has 2 empty rentals, one renter getting ready to move in a month or so and one renter who can't pay rent. Please pray that we start to get these rented so I can get her estate in order.

We have a heart apt. on Jan. 20th so no surgery will be scheduled until at least the end of the month. I don't think mom thinks she is ready so she may push it to Feb. or March. Please pray that she will continue to get stronger and that God will go before her... P.S. Mom says Happy Birthday to her dear baby sister!

This was taken at Thanksgiving 2008. Such a beautiful lady!

It's Time To Revisit The Bonus Mom Badge

So my sleeping schedule has really gotten turned around over my extended vacation. Last night (Sat.) I went to bed at 6am (Sun) and even though I only slept on and off for 7 hours, worked hard all day, and got ready for bed by midnight...I am still awake. I tried to go to bed around 1 am but I was still awake at 2:30 and then after reading awhile and trying again...it was 4:30 so naturally (ha) I got up to blog...Scott is starting back on IV's this morning so I figured I should just stay up instead of forcing myself to nap. We will see how long this lasts today....

I have been thinking of writing a letter to the boys' mom in the spirit of a fresh start. We have a strange relationship that doesn't seem to have any consistency. Sometimes she will talk to me and sometimes she completely ignores me...somedays we will text back and forth about kid things and then I get the cold shoulder when I see her in public. It can be very frustrating but I have learned a lot from my bonusmom friends and I am working on showing her grace at all times. I can't imagine how she must feel and so I won't pretend that I do. All I can do in this relationship is be obedient to God and do what I know is right. I can not control anyone's actions, attitudes or words and it is not my job to be their Holy Spirit. My job is to work as for the Lord, no matter how hard that may be.

I found this article last week and thought it was a great insight into our (and every other) co-parenting relationship. The article is called:

"What your stepchild's mom wants you to know about her life."

I got a few hits last week on my Bonus Mom Badge so I thought I would hand out a few more buttons. This Badge of Honor represents your hard work, sacrifice, patience and love that you have shown to your Bonus Son's and Daughters. We have to work extra hard to earn the love and respect that comes with a title such as "bonus mom" but as you know, the rewards are priceless! Thank you for your sacrifice and commitment to loving, encouraging and supporting the children in your life. You will reap a lifetime of blessings! Please feel free to pass the badge along to others and tell them how much you appreciate their commitment to the children in their lives. (original post here)

ahealthystepmother

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stepmamastory

stepmumoftheyear

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Congrats Bonus Moms!