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.***

Wednesday, January 18, 2006

Almost nearly there

Well it's a new week and we are getting things done. Hubby is "Clearing Base". A term in the army which means, "drive the soldier completely insane, making him/her drive to every conceivable service and or service available to see if he/she/or a family member owes money to or has borrowed anything from them. AKA library service/PX Commissary/outdoor recreation" Then the unit clearing making sure you have not left any loose ends. Sounds logical right. Not when those who have to clear you don't particuliarly want to so they make life hard. THEN you make moving arrangements but are told "oh this is just tentative. Call 5 days prior to make sure, otherwise we could change your pick-up days to half past who cares." Then i love the "you have to clear housing and be totally moved out before you can be signed off base, BUT we will take several days after you clear to do that, which time you must stay in a hotel at your expense." In Hawaii no less. Like that comes cheap. Way more than our housing allowance and more than paying the enourmous rent we have been paying. Then finally you clear finance. That is when you finally get to find out what they are paying, what you are paying and when you get your money. Which is always right after they get theirs. Nothing comes easy in this. But each night we collect our sanity for another day.

But if all the tentative plans come together we will have our household goods packed and picked up next week. Move into a hotel on Wednesday night and finish this painful process. If all that goes according to plan our plane leaves Honolulu Feb 1. Please keep all your collective fingers crossed. OK!?

Meanwhile the girls are just beside themselves with joy. I am sure this is not the normal reaction of leaving Hawaii. They have planned out their days in Disneyland to the letter. They have given Grandma their food lists for that portion of our trip. I think they are covered. Of course they have no recollection of a long road trip. This should be good. They are already forbidden to utter those 4 annoying words "are we there yet?" for the duration. That will be my job. Although with new tougher standards on flights I know I cannot ring the flight attendant every 5 minutes to ask this question. But I can ask Hubby across 6000 miles. (I like to see that little vein in his head bulge and turn purple). Seriously we are planning to drive 6000 miles in total. A concept that some find crazy. I find it freeing and liberating.

Meanwhile in my mind I am sitting in my new home, sipping ice tea on my balcony. Hubby is at his new job, kids are playing in their room, and I am reading a good book. Sounds like a good fantasy. Until then I better go pack up some more stuff, get ready to go ship our van and try not go insane until then.

Wednesday, January 11, 2006

How I met your father.

I love the new show how I met your mother. My kids love to hear the odd story on how I met Dave and how we got married. I thought I would share it so that my comments of a marriage that wasnt supposed to work would make sense. Mind you I have told my daughters that they are never to do what I did.

Dave was an irrate customer. I worked for the cable company. He came into my office and was upset at the installation charges at his new apartment. I was told (I kid you not) that "I should just be happy he was a customer and that he paid my salary." After getting him to calm down and offering an installation deal he stopped being such a jerk. In fact he was kind of cute. We started talking on the phone. I lied and said I was looking for an electrician to run some wire in my apartment. I knew he was an electrician because he filled out a job app. as he was laid off. Well after talking on the phone for several hours he came over to visit and check out the wiring. We began dating, once a week, in April. I saw him only once a week. After June I saw him 2 times a week. He was always busy with the fire dept (volunteer) and other obligations. I really though he was married at first or otherwise taken. I had really contemplated breaking up but couldn't. I thought 1 day a week is better than nothing. I really like this guy. I told him I loved him one night. He looked deep into my eyes, smiled and replied "THANK YOU" and went home. OUr phone bills wer really high and I worked closer to where he lived than me. SO I decided to move closer to him. He wouldn't even help me look for an apartment. But I wanted to move anyway so I didn't care. I didn't think we were going to make it anyway. He only saw me 1 or 2 times a week. Finally around July 13 we started spending a lot of time together. I had found an apartment and was moving in the last week of July. He told me one night that he really did love me and that he was thinking of asking me to marry him. He didn't ask however, just said he was thinking about it. He asked me to go camping on the 25th for my birthday. I had never been camping. We went to Maine. On the way I kiddingly said hey they don't need blood tests in NH we could runaway and get married HAHAHA. Near the campground was his Mom's best friend and a woman who was like a second mom to him when growing up. We stopped in to say hi. It was actually a test. Brenda loved me and said his mother would have approved. He told her that he was going to propose. She told him her mother was a JP and blood tests weren't needed in Maine. But there was a 3 day waiting period. Well the following day we were supposed to go back to RI for me to start moving. He asked if I wanted to stay another night and go home on MOnday instead. Of course I did I was having a great time and finally having lots of time together. That night he made a camp fire meal of hotdogs and macaroni and cheese. He got winecoolers too. After dinner he went into this speach about how I had changed his life. Then he asked me to marry him on Thurs. We got the license the next morning. We went Dutch. It was $5 each for the license. We went back to RI announced our engagement (but left out the Thurs part) bought rings and moved me. On Wed we drove back to Maine. Thur we were able to pick up the licenses and on Thurs our friend's mother married us in her living room. We had dated for 3 1/2 months. We had actually gone out on official dates twice before the camping trip. But we just knew. You can imagine how shocked our families were. We went to dinner at my parents that sunday to begin "planning" a wedding. Then I broke the news. (behind our backs the bet was 6 months at the most). Well we are going on 14 years and have lasted longer than our brothers and sisters marriages. Go figure.

I tell him that I am stubborn so we are together to prove my mother wrong. He laughs. The kids think it is so funny that he said Thank You when I said I love you. I told them if a boy does that to them, DUMP HIM! I tell him that I paid $5 for him so that means I own him. He paid for me too. We have a strange sense of humor and that is what gets us through. It can be hard at times. We really didn't know each other well and didn't know what we were getting into. We jumped in head first but decided to be determined to make it work. I have seen so many people who date for years only to be divorced before 5 years. I have decided it is not how well you know someone but how committed you are to making it work. Thinsg have been so stressful and hard this last year that I remind myself often that I am stubborn and will continue to make it work. Somedays we are still madly in love. Some I could trade him to another country. But that is what marriage is.
Not sure whay I wanted to write about this today. Just something on my mind after last night when he took care of everythng for me why I was hurting. He is usually a real great guy. But his moody days are hell. But aren't we all like that??!!

Moving Right Along

Made it through oral surgery yesterday. Boy did that suck!! Still does, my mouth is killing me. Not to mention not wanting to see the gaping hole now in the back of my mouth. Will definately be getting a bridge when we have insurance again. Luckily it is in the back. It took so much tugging to remove the tooth I thought he was going to break my jaw. Well that sent my heart racing and I was so shaky when it was all over I just wanted to cry. But I couldn't in front of the kids. So I had to "suck it up and drive on". Then I went to Vicadin world so it was a bit better. I would still like to be in Vicadin world today but I have to drive later. I'll take a visit there tonight.
In the continuing saga of our move we are finally making progress. The movers will be coming in 2 weeks. Luckily we planned ahead and have already begun packing, our way, and will have 1 last yard sale on Sat. Planning ahead though does not take the stress out of it all. I have to say first that your positive comments and suggestions are truly giving me strength for this. In our last move it was again cyber-buddies from CWD that helped me get through it all. In reflecting on how much we have gone through to gather strength for this I found myself making a list of those things which we have already overcome. They are many. My husband and I have had it tough over the years But we remained strong and together and in these times that is half the battle. Especially for a marriage which was never supposed to work. I will bore you with my list. Not for sympathy but mainly because maybe if I see it in print it will seem less daunting and more like someone else's life.

Up until 2000 we had had our share of troubles and triumphs. But in 2000 we made the decision to start a new life. We tried in Florida but things fell through. It was a horrible time for us. We ended up homeless due to a tragic instance of trusting someone who said they wanted to help us then changed their mind. So Dave went into the active Army. He had been National Guard for 13 years and we had talked about the Army as a back-up plan for a long time. So with two toddlers in tow we headed to FT Drum. This was a tough life in the beginning. We were not used to being told what to do all the time. (he was the soldier but I had to live by the army's rules too. They are totally into your business).
In August 2000 Dave got hurt. We knew his hand had to be broken but they wouldn't do an x-ray. So he had to deploy for training and do everything he normally would but in a great deal of pain. Finally in Jan 2001 they did an x-ray. Yep broken and now destroyed. We were sent to Walter Reed to the specialist. This was cool because I always wanted to go to Washington DC. So the girls and I tagged along. We went a total of 13 times in the next year and a half. Enough to see all the monuments and the Smithsonian. So this was a good thing from a bad.

9/11/2001 we were in DC and staying at Walter Reed. Dave had had surgery 4 days prior and we were planning to go to the Pentagon that morning. It was the only place we hadn't seen and he was feeling up to going out for awhile. What delayed us is a change of appointment with the specialist to check his progress. I think it was more divine intervention. As we were getting ready we had on the news and saw live as the second plane hit the towers. Just as I was saying that I suddenly didn't feel so safe in DC and hubby was replying it will be fine, The Pentagon was hit. We were a ways away but could see the flames burting up int he sky. From then on chaos broke out. We were in lock down on base as the wounded were sent there. Dave's cast was changed and we were released to go home. But we had to wait until next day. No one at first knew where the 4th plane was and being on an army base didn't feel so safe at that point. Next day we drove back to NY. It was a sad and somber day. Signs at every over pass. The base we left was not the one we came back to. With tanks at the gates and soldiers locked and loaded. I watched my husband pack one handed to get ready to go to war. His unit was on stand-by but did not go right then. More prayers answered.
Over the next months Dave healed. Friends went off to war.
On June 7, 2002 Carylanne was diagnosed with Diabetes and Hypothyroidism.
Sept 5, 2002 we went to Walter Reed for Carylanne for terrble joint pain. She was diagnosed with Enthesopahy.
Nov 2002 we moved to Ft Polk, Louisiana. We were barely there. They did not have medical facilities to treat Carylanne. Her diagnoses would have prevented us from going there had the orders been cut after the diagnoses. NOw stuck waiting for a reassignment, Carylanne was getting sicker. I was trying to take care of her diabetes but did not have all the knowledge yet. I got that from CWD and all the wonderful parents there. I learned to Carb count really quick and figure out dosing. Her doctors in NY had still had us calling in her numbers and giving us the dosage info. Carylanne got sick and we had to go to the ER. The doctor was horrible and treated us terribly. She was getting chest pains and they thought it could be her heart. (turned out to be acid reflux disease) I had finally had enough. I went to bat to fight for my family. I did something that still boggles many minds in the army even Now. I sent an email to the Commanding General of the base. I explained my grave concern for my daughter's health while they dragged their feet with our paperwork. He contacted my house PERSONALLY. He called a meeting with my husband's entire chain of command and the hospital chain of command. I had to speak at the meeting. Here were 20 men all on the hot seat and some about to lose their positions for the treatment we were receiving. The General personally handled our transfer. It was determined that Hawaii would be the best place for us. So in a whirlwind move that I barely remember we came to Hawaii.
The doctors here were not as good as we were led to believe but I fought for her treatment right up to this year. I found her a great doctor and fought the army to pay for it. I found her physical therapy for her joints. I got her on the pump when the army doctor wanted us to wait. (due to her not wanting the resposibility, not us) It has been an uphill battle most days. Then all this with Dave's health. We have always felt we were fighting for something or another. Some of Dave's Commanders and bosses have been good. Others just horrible. We never asked for speial treatment and when the unit deployed last year, Dave was left behind due to work reasons and being needed here. But many didn't see it that way. They "thought" he was getting special treatment. Well that didn't lead to many friends or support. All the meanwhile trying to make sure my daughter Christianne is not being left out or forgotten.

Well I think I need to approach all this now as a big relief. It is actually. We have new worries. JObs, health insurance after Sept. BUt we have survived so far. I tell the girls often that our prayers really are answered. Not always in the way we think they should be but God does watch over us. Going to Florida has been 6 years in the making. We have learned and seen a lot along the way. I am excited to get there and will savor the moments. I can picture sitting on my balcony and looking back on all this. Until then I will take a deep breath, suck it up and drive on!

Thanks for all your support and kind words. It really helps!!!!

Monday, January 09, 2006

7.8 and the end of a great Endo (sob!)

Today was our last appointment with Carylanne's endo. He was so great. It is like saying good-bye to a trusted friend. We started going to him 2 years ago. (After a great deal of fighting with the army for a civilian doctor). He has been great. He got Carylanne on the pump. Really helpful with everything and we learned a lot from him. He was great in teaching us a whole bunch so we would be confident and not feel dependant on a doctor for every answer etc. Her latest HBA1C 7.8. Not bad. I would have liked it a bit lower in the 7's but with the holidays and stress of the impending move I will take 7.8. Her thyroid is holding steady without needing a bigger dose of the synthroid. So that was good too. I think we have all our supplies and everything planned out well for the big move. Went over it all with doctor today. Luckily I can call him until we get situated in Florida.

Got a call over the weekend that our apartment has been released from the contractors and could be ready for move-in by Feb 11. We chose Feb 15 to give us time to travel. I sent out the deposit immediately so we are all set. Will have the lease signed and sent out this week as well. At least that is all coming together.

We should finally have our orders tomorrow, unless they find another reason to hold them up. We haven't been able to schedule movers or shipping of our vehicles without them. Once tomorrow hits we will really be off running. We have movers to schedule, cars to ship, reservations for hotels to make. Plane tickets to get. I am dizzy from thinking of it all. Think tonight I will have a beer and relax before it all hits!!! But it will have to be on the warm side. You see in our life we are like EEYORE. Something always has to go wrong. Last week it was my tooth. It seems I ate a killer M & M. I cracked my back tooth in an unusual way, according to the dentist and tomorrow afternoon amist all this confusion I have to go to the oral surgeon to have it removed. It has been killing me for over a week. This was horrible timing mostly because hubby has to get out of work too take the girls and he needs to be able to make all these arrangements. On the good side at least it happened now while we still have insurance. Next month we wouldn't have AND we will be on the road. But alas it rains on us all the time. Somedays I think I should have had EEYORE tattooed on my leg and not Winnie the Pooh!

Next packing and packing and cleaning. URGGHH I hate this part. I wish I had a pair of ruby slippers. There's no place like Florida, There's no place like Florida. As much as I would miss going to Disneyland and Hollywood I would like to be sipping a Bahama Mama overlooking my lake view at the moment and not up to my eyes in chaos!!! But the girls would be terribly disappointed.

Thursday, January 05, 2006

What a beautiful day! For any and all of you who are sitting in cold and snowy weather I appologize right up front for this post. Today is just gorgeous here in Hawaii. Not a beach day. A bit cool at 75 for that. But what was beautiful wasn't so much the weather but the experience of the day. It was a beautiful playground day. The girls played for over and hour at the "big playground" on Hickam Airforce Base (something Carylanne could not do a year ago due to ENTHESOPATHY). One thing that amazes me is that they are playing with fighter jets flying over head. Like it is just the most normal thing in the world. They don't even notice if it is tank on the road or an SUV. Blackhawks and OH-58 helicoptors are just background at daddy's work. They understand WAR and what soldiers do. They saw the events of 9/11 first hand. We were in DC at the time and watched the Pentagon go up in flames. But even with that knowledge comes and innocence about it.

I love watching them run and play. Such innocense. On the playgound it doesn't matter how much money you have, what rank your father or mother is. What race or cultural background you come from. To these children all that matters is who's IT in the best game of freeze tag. I watch these little girls and boys and wish it could be that way for all children. I am glad of their innocense. Of making fast friends at the playground. running and playing as if they have known each other for years. Just having fun without a care in the world. All too soon they will grow up and the world to them will be a different place. I wish I could keep them this carefree forever. I will try to as long as I can. Even in Carylanne's not so carefree life, her diabetes didn't matter today. Mom was on watch. She could just play and be one of the kids. She knows I have it covered. I will give her the appropriate snack before and after. I will remind her to check her Bg discreetly as she gets a drink. She can concentrate on getting to Goo and being IT. She can make friends. Run around crazy and enjoy the cool breezes. When she is tired she can sleep well because she knows somewhere in her sleep she will be checked and be safe from lows and highs. She trusts me to be there for her. She has her sister as well. They watch out for one another. I see them checking to see where the other one is. Christianne asking her sister if she is ok when she falls. It is heartwarming. Through the sibling rivalry and the bickering, they truly love one another.

Someday it will all change. They will be adults. Making their own decisions. spreading their wings. I pray they will always look out for each other just like on that playground today. Carylanne will have to make her own decisions on her care. How she is going to control her disease Will she "cheat", will she forget to check. She knows I will teach her everything she needs to know and be her safety net when she stumbles because that is what moms do. But I love watching them be children. Playing, laughing and enjoying the good times. Think I will go watch them build their castles and remember them as Princesses always. Give them big hugs, butterfly kisses and tell them how much I love them.