Butterfly Kisses & Bedtime Prayers

"Butterfly Kisses after bedtime prayer. Stickn' little white flowers all up in her hair. Oh with all that I've done wrong, I must have done something right. To deserve a hug every morning and butterfly kisses at night". *** For parents of children with diabetes and adults who are living with Type 1 diabetes. We are looking to share stories, ideas, concerns, and laughter.***

Monday, September 04, 2006

Loss of a Hero

Today we were profoundly saddened by the loss of a true hero. Steve Irwin. The girls loved him and gained their love and knowledge of animals from him. He was a man who you could be proud that your children admired. He had a passion for what he believed in and wantd to educate the world. We felt like we knew him. He meant more to our family than he would ever get to know.

When Carylanne was 4 she began to love Steve and animals. Her dream was to meet him someday. Well when she was diagnosed she told the nurse her dream. Her nurse came in the next day with actual pictures from the Australia Zoo that her sister had taken on a trip there. The sister gladly gave some to Carylanne. After Carylanne went home we went through a horribly rough time. She was sad and angry. She would run and hide from us. She would call me evil because I gave her shots and hurt her fingers and our hearts broke for her. She grew to learn that I gave her shots out of love but in those months my heart was broken along with hers. Well a woman who had an organization to help children with chronic illnesses saw Carylanne's page on Children with Diabetes. The page stated her love for Steve. Nikki wrote to him on Carylanne's behalf. Soon an autograph picture and zoo magazine were sent to her. She cherished that picture and stilll hung onto her dream of meeting him. He gave her smiles and happiness and helped her heart heal. He brought us all together. We all shared in watching his shows and enjoying his message to the world.

Well over these years we have still talked about going there someday. But with circumstances the way they turned out, of course we couldn't begin to save for that yet. BUt I always thought we had plenty of time. We would take her in a few more years. Our time ran out today and my heart breaks for her again. Her dream is gone. She says she understands why we never got to go but in her eyes I see the little girl she was 4 years ago. I always wanted to tell him that story and let him know how much he has meant to her.

I will miss all he taught the girls. I feel so deeply saddened at the thought of his children and wife. He was a gift to all animals from God. And a gift to Carylanne to give her hope and a dream and a plan for her future. Because she wanted to work with animals. Well she feels that urge more now today because she wants to remember her hero always.

Thank you Steve. Rest in Peace......

Friday, June 16, 2006

ZippaDee Doo Da

Wow I realized today that it's been nearly a month since my last post. Boy I thought I'd been busy but I guess more than I thought.

Well Dave had surgery on the 25th. It all went well. He is now in a cast until the 26th. The doctor had to remove some bones and take a piece of tendon from his upper arm and use is as a support for his thumb. YUCK. The way it was described in the or notes is gross. He took the tendona dn pushed it through holes drilled in the bone. Then tied it in a loop etc. Well hope this works so he can use his hand!

I started working on the 30th. So far its been just training.They have so many cast members starting that its hard to get all the scheduled training in. Fine with me as I have my cast ID (for discounts) and haven't had to work much. Tomorrow i am being paid to go on an "urban Adventure". This is where they take you on a tour of the area you are working. ie Magic Kingdom etc. For me it will be Downtown Disney. Too bad I can't shop as I go. Not that my family's wardrobe isn't already entirely Disney.

Carylanne's been doing really well. Good numbers most days. We were informed however that her Cholesterol is higher than it should be for a 9 yr old It was in the 180's. We already skip fries with meals, she usually orders a salad. I guess we have to be more vigiliant. Plus we seem to have another problem cropping up. I have to do a little research on this one but for a month or so shei s having bowel problems. She never feels if she has to go. She doesn't have accidents or anything but she just doesn't feel when she has to go. So she goes in to pee and ends up finding out she has to do more than pee. Kinda annoying at times. Then we have the fun of puberty starting. All the signs are appearing now. I am not ready for this!!

Nothing on the VA front yet. We are still waiting for his rating. I feel like we will be waiting forever! He went for an MRI on his back tonight. Its getting worse. He has 3 herniated disks plus arthritis and nerve damage. Just never gets better.

If anyone has any good ideas for healthy snacks (other than the obvious fruits and veggies) smoothie recipes, etc I would love some new ideas. I am trying to try new things in order to help her cholesterol and weight. I already give her lots of veggies. Salads etc. I am writing down everything we give ehr for the dietician in Sept. We are told "let her be a kid and don't put her on a diet. But then we are told, she is gaining weight too quickly and she has a cholesterol problem. Hello what do I do. I am trying to get her exercise without hurting her joints, and giving her salads and veggies. ARRGGHH!!!!

Well tiem for bed. I have had chest pains all day. Not sure if its stress or arthritis. I have arthritis in my breast bone. But have had a lot of stress this week too.
Oh well a good night's sleep may help.

Friday, May 19, 2006

Great news for once..........

We went to the new Endo today. What a nice guy! We are now part of the Nemours Children's Endo Clinic. They were great. First they checked her HBA1c right there. Too cool. We always had to go for a blood test. She was 7.6. A bit higher than in March when it was 7.2 but then again she was sick a couple weeks ago. Anyway, the doctor sees us and he is soooooo nice. Really great bedside manner with Carylanne. He is happy with her overall numbers and care. Then he explains how the clinic works. 24/7 coverage whenever we need to reach someone. There are 3 doctors there. Then there are CDE's and a dietician all on staff. The whole thing about keeping her out of the ER and calling them first for anything. Great!!! Then he tells us IF she ever needs the ER which one they trust etc. Big relief to know what I would need to do. So the CDE comes in and talks with us. Offers some suggestions and gives us some new sets to try with her. It ws suggested that we see the dietician as we never have been able to and she is gaining weight a little too easily. The dietician is a Type 1 himself who wears the same pump as Carylanne. So great! We see him on our next visit. Carylanne was very happy with her new doctor. Me too. They didn't even scold me for not keeping good records. We download our meter but I know I should be better at writing things down too. But they are happy with 7.6 so they aren't too pushy. So this was just a great relief.

Then I must say that all your good thoughts and prayers have paid off this week so much.

First on Monday we get to see a hand specialist and finally Dave will get his surgery. Surgery is not usually a great thing but he has been in so much pain and cannot work with his hand like it is. Now we will know for sure what use he will end up with, ending our speculation at what job he will be capable of. Plus it should end this terrible pain. At least that is the doctor's goal. The insurance actually appoved the surgery within 2 days and it is confirmed. WOW they never work that quick.

Then Tues as you all know I got my dream job back. Yeah!

Wed was not too good. Dave had an appointment at the VA. Always stressful. Plus he was in more pain this week due to being prodded on Monday.

So Thurs we went to Disney. Our answer and escape these days. We had a great time and got to see things we always miss. Like Cinderellabration. Dave really would like to get a full-time job at Disney when he is better. They do not pay as much as some companies BUT the benefits are worth a lot. Plus we found out they have great healthcare. I think that is why their payscales "seems" low. It really isn't when you add in great benefits.

So we come to Friday and get to meet this great doctor. The week is going really well. Finally things are looking up.

Then they get a little better. You see we were never paid properly from the army for our mileage home. We sent in the paperwork twice and they sent it back to us asking for more info. We were getting so frustrated as we were expecting about 1000.00. Well we get home this afternoon to an email stating that we are being paid 2007.00 and should have it deposited by tomorrow! WOW!!!!! They owed us for mileage but also for travel expenses that we figured we never see and had settled that at least getting the mileage would be great. Oh Boy what a relief. That helps us continue on living on our savings and my part-time pay. He will lose unemployment for 4 weeks during his recovery. (we would have gotten paid by the VA for that time BUT we cannot keep waiting for them to schedule him to see a hand specialist. It has been since March and still the doctor hasn't looked at the referral. Anyway he can't keep waiting. The damage is getting worse the more time goes on. We will try to get paid disability from them once his claim is processed. BUT I won't hold my breath.)

So things are looking up for us a great deal. Tomorrow we will be at MGM for Star Wars weekends. The girls want to meet Jedi Mickey plus the actor who plays Chewbacca among others. Real cool.

Thanks to everyone for their prayers and encouragement. I will have a glass of wine tonight and savor the new feeling of things going right for once!

Wednesday, May 17, 2006

A whole new world-Disney World

I got my dream job back yesterday!!! Starting on May 30th I am officially back at Disney. I was so excited! 6 years ago when we tried to move to Florida I got hired for the Magic Kingdom. A job I had wanted since I was a teenager. I had to give it up however when Dave went active. I had just begun training. I was told then that I could always come back. I was nervous all this time though that maybe I couldn't. Well I decided that even though its a bit more of a drive than I wanted to make it was the only place I really wanted to work. So I went in yesterday and got my job back. Only this time I am going over to the World of Disney in downtown Disney. It is a bit closer to get to than Magic Kingdom. For now anyway. I hate the idea of leaving the girls and letting someone else (even her father) take care of the diabetes but I know it has to be done. I know they can handle it all its just hard to leave. My first attempt at a job was such a disaster and I was trying then to be so close to home. This time I am about 45 mins away. But when I am at Disney I am enjoying what I do and where I am. We will move closer next year so this is temporary being so far away.

Until May 30th we have so much to do to prepare. Plus Dave is having surgery next Thurs. I wouldn't go to work until after that. They are going to try and salvage what the army doctor screwed up. Let's hope they can!

Friday we go to the new endo. We are going to a program at Neumours. I am excited to get her into a whole clinic thing again. Dave wil be with us so he will be right up on her care. I will only be working part-time but still he needs to be back in the swing of things again.

So many changes coming up. I am excited and a bit scared as well. But this whole year has been full of that. The girls are excited about me working at Disney. The perks are great and they feel better knowing I am there. Even if it is a bit further from home.

Sunday, May 07, 2006

An Extreme Act of Kindness

This is a story that if it didn't happen to me I may not beleive it. Last week while shopping at Joann Fabrics we began to chat with a few people over at the embroidery machines. We had set out for a ride to explore new areas and have been trying to find things for our new apartment. That days venture brought us to JoAnn's to search for fabric for kitchen curtains. Mickey Mouse (found the perfect material). As I was getting it cut Dave was looking at the machines and chatting to an older couple. We have wanted to get one for a long time. Mainly because we have talked about starting our own business and have gotten set up on EBay when we were still in Hawaii. Anyway this woman began chatting with me and wanted to show me what she had made. It was a beautiful clock and the background was all embroidered. As we were looking at the machines and the girls were chatting with this nice woman Dave commented that he would love to get me one soon. But not one quite as expensive as everyone was admiring. A Brother most likely.

So this nice woman turns to me and says, "I have a deal for you".


So she takes me a bit aside and tells me that if we come pick it up, she has a new Brother that is ours. I'm thinking this is a joke or a set up. I am even leary of sweet old ladies. She states she got it and never uses it because she has a bigger one. She had been waiting for someone to give it to that she felt wuold enjoy it and use it.

WOW!!! So she gives us directions to her house. Then says she is leaving now for home and we can just follow her and get it then.

So we followed her home. Visited a little. She was a wonderfully generous woman. We offered her $$ twice and she would not take it. She gave us a new Brother embroidery machine with several pattern cartridges. Its a DISNEY machine. Too cool!!! She also gave me a craft case adn the girls a smoothy machine. She had been clearing our her home. She lives alone and had no family down here. What she gave us was worth over 1,000 $$$.

Well I was speechless. I have never run across such a nice woman. We told her that if she needed anything to please call and let us repay her kindness.

So now I can create things with my new machine. Make nice shirts and embroider everything the girls have!!! We haven't gotten to make too much this week but will have that as a new hobby and/or business in the near future.

I am still amazed at the whole thing. There is a true silver lining somedays!!!

Tuesday, May 02, 2006


Thanks for everyone's words of encouragement. (and boycott of Wal-Mart). I am trying each day to see the bright side but somedays its really tough. From everything the Army did to us it feels like the biggest slap in the face to serve your country, for what? We served right along side Dave. We moved around. We waited long hours for him while he was away, we lived in substandard housing. All in the name of serving our country. Now Dave is broken and will never be the same. We get doors closed with every turn. A different answer every time we talk to the VA. He has been waiting for over 5 weeks for an appointment just to see the hand specialist. Still they have not even looked at the referal never mind get him an appointment. HIs hand gets worse. We wait. The answers we get are "Well you'll get back-paid" or "Don't push too hard or your claim will get pushed to the bottom of the pile". This is how our veterans are treated. We are not alone However Dave was forced out while still broken. They knew the surgery had failed and still put him out. He was told to get the next surgery at the VA and not there. More ordered than told. He was enlisted and we were not able to fight the system anymore. Ellen, you made a great suggestion. I would love our story be told. Then I start to think that they won't want to tell it. That many people out there are going through tough times and what makes ours worth telling. I can say that we were treated horribly by the Army. No regard for having a child with so many medical problems. (In fact we were given just 6 months medical insurance. After that we are on our own.) Dave still can't work and I can't go to work full-time and leave them all day. He applied for social security disability benefits because his injuries will take over 12 months to fix. But of course that takes 4 months or more to maybe get. But I am not counting on it. Its a government agency after all. We are surviving on 247.00 a week from unemployment and living off his severance pay. I am greatful for that but the severance pay is a real shaft to veterans. He got this pay from the army due to being put out. However once his claim from the VA is approved he has to pay back the severance because the government considers it "double-dipping" What a bogus concept. Dave would have gone for his 20 years and gotten pension and full benefits etc. Because they screwed up he was put out early. Therefore the severance should be just that/ But once he gets a VA claim they say the money was actually for his injuries so it has to be paid back. Nice huh!!! I would just get a job to support us all but I haven't worked in many years. I am paralyzed with fear to leave them too much as it is. We are in a new home that we are not adjusting well to. I am not liking it here at all but we cannot afford to move. I feel horrible for the girls because we desperately want to find a good home for them and settle down for good. The money from the severance that I hoped could be soaked away for a home someday will be eaten up just to live on. Our Disney tickets were the bright spot for the girls in all of this. We can escape the world and go there for a day.

Well if anyone has any suggestions of contacting a news show or similiar I am all ears. Ellen suggested us telling our story but I don't know where I would tell it or if anyone would care. Is it so wrong to just want to settle down as a family and have our lives back again?

Thank you all for listening (reading) my self-pity bitch fest. Maybe its PMS talking. I will just try to gather up our family for another day of "looking on the bright side" Lately that has been that Dave made it out of the army alive and is not in Iraq right now. That is a lot to be happy about!

Thursday, April 20, 2006

This awful beautiful life!!

So much going on these days my head is about to overload. Some is just so fu^^&% bad but some is a bit of humor in this otherwise sucky life we are experiencing. First, The sucky part to get it out of my system. I spoke with a representative at the Equal Employment Opportunity Commission today. My complaint has fallen on deaf ears. I spoke to the federal line last week and was told that I do fall under the same guidelines for discriminatin if it is a family member or if I was the one disabled. Well this woman tells me NO and that Wal-Mart didn't have to make any specials accomodations for me, I told her I spoke to someone at the federal office. Ma'me we are the federal office. No I'm prety sure your in Tampa lady. Maybe in her mind she is in DC. Then she tells me I made it look bad on myself for walking out. I beg to differ. I will not work for a company with so little compassion for their employees that carrying my own @@#$ cell phone for an emergency is such a problem. End of story. My family and their well-being comes first. So then I have to go in for my paycheck. I go to the back and get my smock out of my locker to turn in along with a letter telling personnel how i was treated. Hey it may alert someone to the rude behavior of the manager. Although I doubt they will care. So I get to the office and poke my head into the window for my check. Sitting there is the horrible $%$%$^ cashier supervisor. She gives me a look of "if you show up for work tonight your either getting written up or fired". So I ask for my check, chicken out of handing over the smock or the letter and high-tail it out of there. I put the smock back into my locker. Think I will mail the letter and the words I quit! This woman got me so furious that I don't want to deal with her again. But I still had the presence of mind to go around the store and get everything we have been needign like comfortors for the girls, material to make all our curtains etc. I go to the checkout cash my check and ask for my employee discount. Hey I got another 15.00 out of them before leaving!!!!

So that is the end of my first job in many years. What a disaster! I will look again when my nerves are more prepared. I found out today that the law does not protect our children. How can we as their caregivers be unreachable in an emergency, or have their sicknesses held against us. We have children who require special care but we also have to work. Now I am just so nervous about going out there to work. The unbeleiveable attitude towards people with diabetes is horrible. I always feel like I am being judged that we somehow caused this. With all the hype about children getting type 2 from poor diets and exercise, ignorant people think this is the same. So there is no compassion at all.

Then speaking of no compassion Dave went to the VA today. You have to know that they pushed him out still broken. His hand surgery failed which they knew amidst the process and they told him that he would have to get it fixed by the VA because they would not stop the MEB. So he has a broken hand that needs surgery. Then his back is so bad he is on morphine for the back pain and the hand pain. He gets referred to the hand specialist over 3 weeks ago. They have the referral but haven't even looked at it yet to call him for an appointment. Then he asks about what more they can do for his back. NOTHING. They never sent him to a neurologist or exhausted all treatments but as far as they are concerned they won't do anymore. Unfuckingbelieveable. I am so stressed out I can't describle it in words. I just want to run away somewhere. But we can't afford to. I am thankful that I have lots of supplies for Carylanne on hand and that we have medical until Sept. I just want to be able to settle into civilian life and find jobs we can manage and take care of our girls. This just totally sucks!!! NOw onto a lighter better note......

We got carylanne's latest HBA1c last week. Mind you this is from Dec to March and includes all of our trip and leaving our home etc.
7.2!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I could have screamed it from the highest mountain! We thought for sure it would suck because of all the stress and change for us all. But it was great. I have found a good way to keep her numbers down these days. walking around Disney. She gets alot of exercise and it is keeping her numbers in great range.

Next I have a bit of humor I just have to relate after all my ranting and raving.... I warn you to not read this with anything in your mouth as you may choke or have milk/wine/soda shoot out your nose!!! Ok here it goes...

Last night well after the girls are in bed, Dave and I were in bed. Not exactly sleeping. So right in the middle or rather nearing the end we suddenly hear

"I can't sleep"

Not from the door oh my $%^$$% word Carylanne is standing right next to us. Dad's butt in the air moaning groaning etc etc (not to be too explicit but you have to really picture the scene to understand my sheer mortification right now). She practically tapped him on the shoulder. He jumps off into the bed and we grab for the sheets.

"Go into your room I will be right there"

She sleepily hobbles back to her room. Now I don't even want to face her. What is she going to ask/say. The girls know about sex. In fact due to their precociousness they know a lot. First they asked too much last year when we learned anatomy. Then my neighbor thought having 5 kids in 4 years would be great. That brought up too many questions from the girls.
"MOmmy if Mr Ben can't afford to have more kids why do they have sex to make one?"
(ok I had todl them that people have sex when they are married to have a child. They thought after that there is no more reason to have sex. NOw I am backed into a corner. truth or make up a stork story quick. I go for truth.

"Married couples have sex because it is a special gift from God. Sometimes that gift does produce a baby and that is one of the resons why God made this a special time etc) "

So she comes out with

"well you and dad aren't having any more kids"

"Well yes honey but..." Then the light pops on

"oh gross you and daddy still have sex!!!"

"It's not gross and most married couples have sex at least some of the time. But its a private matter that we don't discuss or ask about."
Another light pops on

"Grandma and Grandpa too!!"

Mortifiction speads over her and her sister's faces. That night when dave comes home from work Christianne, my forever ballbuster goes up to him and says,

"I know your little secret" then she runs down the hall giggling. Dave wanted to eat by himself because he felt he was being stared at all night.

So now we are faced with totally being caught. I am dying at haviong to answer questions etc. First i ask Dave the obvious question 'Why didn't you lock the door????" I go into her room. Tell her it is rude to barge into our room. I tell her to hug Ruby and go to sleep. She is out in 3 minutes. Was she sleep walking??? Will she remember what she saw??? Jump to this morning. No mention of anything. No remarks from little sister which would tell me she does remember and just told Christi. Christianne would not have resisted saying something. Tonight she can't sleep again. Only this time i am typing. This time I tell her not again like barging in last night.
"mom I'm sorry I must have been confused. All I remember is standing next to you adn having you tell me to go back to bed"

Oh my God she is so traumatized she's going to end up on Dr. Phil someday!!!!! I am buying a lock for the door this weekend and a cow bell for theirs!!!
What a week. I need a good drink. Only don't tell my girls I could go for a "sex on the beach"!!!!