Wednesday, November 24

disney always brings smiles

I promised my dad I was heading to bed early and that was my intention.  However, as always, I found more and more to do.  Today was a pleasant day although I am rather sleepy.  I did manage to get to work early and typed for a few hours.  I realize that this job is not going to last long-just enough to make some money and then I will need to leave.  The repetitive motion numbed my hand and cramped me for the next 13 hours.  My hand and forearm is just starting to feel normal. I am sure that three days of it and my arm will be shot.  I was surprised to see my hand fail me like that.  I am hoping to get to the dr next week for my left should that I did something to last week when I jumped down from my attic. WHile I am there, I will find out a bit about my mother, a few things in her past report that bugged me. I also need to get my eyes checked because I am having a hard time driving at night now and my right eye never seems to clear-it always seems cloudy...
SO after work, I drove a friend to the airport.  I was so blessed to have my father go along with me.  It has been a long time since

 we did anything together and I had a great time.  He needs to realize that it is ok to have fun and to enjoy himself.  It is hard because our first reaction is how we wish mom could enjoy this with us.  I reminded him of the fact that going places with mom had never been fun to begin with.  Family vacations and holidays were the dreaded words growing up and it is easy to forget the bad when you see her this way.  I reminded him that if she were the way she used to be, there is no way we would be able to do this little trip or rather no way I would subject my children to it.  She was such a control freak that if things did not go her way, ohhhhh watch out.  Anyway after dropping off our friend, Dad, I and the kids went to Disney village. I love this place because it is free and the kids love it.  It was so nice to relax with my father and watch him interact with my children.It was nice to see him smile.  The kids love him so much!! The amazing thing is how much my daughter loves Gigi.  She asks about her all the time and begs me to bring her over.  She is so excited to have Gigi come play tomorrow. 

I ended up going up to see my mother to count her money and while I was there, my dad could not resist showing me his new toy.  I had a delicious cup of coffee from his new coffee pot.  Dad was beaming from ear to ear-it is not often that someone buys someone a gift that is absolutely a perfect match.  Thank you for making him smile even more!!!

Back at home and I actually negated all of my responsibilities, picked up a book, drew a bath, and relaxed.  Now I am heading off to bed to watch a movie with hubby!!! Happy Turkey day everyone. 
Ganster mom

Recent picture

Why am I still up?

I am very sleepy and yet I feel this strange compulsion to torture myself and write my blog. I know that if I do not write tonight, the feelings and emotions will pass and I will not have a record of it.  I contemplate ending my blog when I actually realize that my personal life is being broadcast over the Internet and sometimes what I write is misconstrued.  But then I remember that I wrote journals all of my life and stopped when I had children.  I have years upon years of memories that I can open at anytime until the birth of my children. Sure I have journals that I wrote in once every five months to say that my children were growing and I would go into detail in the morning. The funny thing is when morning came, a million other things popped up and I forgot.  With my blog, I feel obligated sometimes to right and therefore I do.  I put it on my to do list and as with all my lists, I feel the need to cross it off.  It is also easier to tell people who want to know how my mom is doing to check my blog.  Every conversation, every person, every instance my mother comes up into the topic.  I visit with my dad or brother and guess what-we talk about mom.  I go to visit friends, they ask about my mom. There is another life out there that I forget sometimes-a world that does not involve my mother.  My dad and I talked the other day and he said something that really made me think.  He mentioned how sometimes he does not know how the children are doing or what they are doing, how my life is going.  It was then that I realized our convo's are discussions about mom's meds, her appointments, what he has to do that day before going home to mom's, how to break the death of a love one to her, how to plan our trips around her, how to figure out Thanksgiving-everything has to be figured out and discussed.  That leaves little room for how Mackenzie is doing well on the violin at four years and her instructor never takes children under 6.  How Connor is reading 10+ words at the age of 2.  How both my children are always sick with some cold or some illness -like right now both have bronchitis. How I am now working at a job that pays less then 10 dollars an hour in between the rest of my daily tasks.  I look at the craziness of my life and I realize that some how something must change but I cannot see how.  I cannot make my mother well, I cannot give us more hours in the day, I cannot make my children well, I cannot make people give money to Works in faith so that my hubby or myself can get a paycheck,  I cannot turn my back on what God has called us to do. But I can do it all gracefully and feel blessed that my husband is willing to do what God has called him to do no matter the cost, that I have a brother who is working hard to finish his degree and take care of his mother while cementing a bond that few siblings will ever have the pleasure of knowing, a dad that has provided for his children, his wife, and multiple others and is always willing to help, two amazing and quirky children that can brighten up the worst of days and energize me when I feel depleted, an education that one day will bring me some financial stability, and a Lord and Savior that has given me the gift of eternity. So tomorrow when I crawl out of bed at 5:15 to drive to a job where I will sit at a computer for three hours creating accounts only to leave there to visit an elderly woman briefly on my way home where I can pick up my two children and my friend to drive her to the airport an hour and a half away then come home to prepare thanksgiving dinner, complete my graduate portfolio of 100+assignments, finish two case studys, prepare the books for Works in Faith, and spend some time with my hubby, I will use the strength of God to put a perma smile on my face praise God for the wonderful day and Thank him for all that I Do have, and whistle while I work.  Sorry for the rant but I think I am in need of some pity :)

So tonight-ah tonight what a wonderfully awful experience.  Yet again we had another death-this time my dear sweet Great Aunt that is such an amazing woman.  Or was such an amazing woman.  I contemplated how to break the news to my mother.  With my uncle, we were prepared for it-it doesn't make it easier to grieve but it was expected.  My aunt was completely unexpected.  Since my grandmother's death, my mom has clung to Aunt Irene and felt slightly connected to her mother.  Of all the people, both friends and family, my aunt and uncle continued to love my mother and stay connected.  They never made my mother feel unwanted or a burden.  despite having surgery, my aunt drove just a month ago to visit my mother at a restaurant to spend time with her.  Watching everyone in my mother's life disappear, I was amazed that these two stuck around.  They tolerated her rants, her behaviors, her love, her late calls-they accepted her unconditionally and for that I am grateful.  My aunt was so spectacular and I feel a heavy heart tonight.  I will miss her terribly because I feel she is the only one that truly cared what happened to my mother. She did not turn her back and pretend that this ugly thing was not happening to my mother.  she dealt with it full on and I will always admire such  an unbelievable woman.  Well the amazing thing about it, my mother handled the news well-she cried as any other would and we looked through pictures and shared some memories.  She said her aunt told her she was dying the last time they saw each other and I guess my mother believed her and prepared herself mentally for it.
After that, we picked out a movie and started to watch it.  My mother is incapable of doing much of anything now and is having incontinence and difficulties with all her tasks.  She went to use the bathroom and actually sat on the toilet with all her clothes on.  I tried to tell her to pull down her pants and dainties, but she started to get upset with me.  It took her twenty minutes to figure out what was wrong and to pull down her clothes.  She can do no more self help skills at all-no brushing teeth, washing hands, wiping, etc.  She cannot hang up her shirts, get clothing in and out of the dryer/washer, talk on the phone, and sometimes she has a hard time understanding one step directions.  Her communication is getting to the point where I cannot tell what she is saying and she is forgetting things left and right.  I just realized that it is getting very very late and so with that I will end and say thanks for lett ing me vent.

Saturday, November 20

Buzz Buzz Buzz in honor of the swarm of African bees

I was surprised today to learn about the migration of the african bees.  It seems that my Dad got a new client and is not able to start working because there is an infestation of bees, and not the wonderful honey producing kind, but the I hate you and will attach you if you venture within a mile of my nest kind. I had not realized that the KILLER BEES had made it to the tropics of Florida. After the day I had, I feel as busy as a bee.  I started my day off with an interview at my old school.  It was strange to go back there and I am excited and yet very apprehensive at the possibility of returning to teaching.  I should hear something back after thanksgiving break.  After that, I had a phone call from the neighbor letting me know mom was freaking out crying and running around the neighborhood.  A quick phone call to dad and he was on his way home.  I headed to the house to start a marathon of cooking.  I have decided to try and cook all my food for the next month.  Jason was a dear and bought all the groceries last night so that I was ready to go. I made Mexican casserole (new recipe quite good), taco soup, hamburgers, lasagna, Shepard's pie, spaghetti sauce with meatballs, and prepared for tomorrows continuing marathon.  I went a picked up Kenzie and her friend came back with us.  All the children played while I baked and cooked and labeled and put in the freezer.  Kenzie's friend left and off I went for a second interview for a job which I got.  It is a data entry job and I will start on Monday.  I can work whenever I want to and can earn around $20 an hour if I work at it.  I will let you know how it goes.  I got home and left to go to my mothers.
Mom was pretty good all night and I finally saw what Kevin sees.  She was silly and happy, laughing and calm.  I brought her some of the food I cooked and she liked it all.  I was able to bath her and she had a very difficult time with it.  It was the fastest bath I have ever given her.  She kept her eyes shut the entire time and it was really bizarre.  It was almost as though she could not remember to open her eyes.  She tried to rinse her hair by herself which resulted in her putting her face under the water (remember her eyes were shut so she could not see how close to the water she was).  Bath finished and we cleaned up her room.  She had greater difficulty with recalling words, trying to hold a conversation but not able to get her thought completely out.  During the movie, mom could not stay put.  She would get up go out come in go out come in and go out.  At one point she tried to plug in a hair dryer even though her hair was dry and the bathroom mirror door crashed down on her.  I do not know how it came off the hinges and perhaps it is better that I don't know.  She cried for a bit but I was able to distract her.  At one point, I had her in near tears from laughing so hard because I started to talk in such a twang in honor of the most amazing movie ever "Sweet Home Alabama (insert sarcasm font here).  The best part of the whole night is the set up I did to my brother.  He is now going to have mom calling him snooky pooky since I told her he kept calling her that.  It is about time I got my brother hahahha.  Got to have some fun sometimes.  I am off tonight since I have a full day of dinners planned and a music festival at the state park tomorrow night.  I love days that go like today-I can see God working in every area of my life and just feel so blessed. 

Wednesday, November 17

I hate this

Today was an awful day - a day I felt like screaming this is not fair.  Make it go away.  I hate this disease and want to to disappear and have my mom return to me. Watching my mom the past few days has tugged at strings I did not know existed in my heart. She has become such a zombie from this medicine-there is a cycle.  I have this risperdone down to a T-day 1, 2, & 3 wonderful happy mom no anxiety cheerful, friendly, jokes around.. Day 4 slowly zombified talking slower, losing focus more, loss of directionality or functionaility.  Day 5 loses the ability to run the DVD player and by day 7 we want to pull her off it. Today is day 7 and of course I want her off now! I looked up the drug tonight and hated what I read. This drug can hasten death with a person with dementia-there are so many side effects and things that I hate about it.  I do know that she is better to control and direct.  During the day she is happier and funnier.  She is gaining weight and eating more.  Battles are not quite as bad in fact she lets us have more control all the time.  But she is aware-she knows that she cannot hold a conversation at all, that word retrieval is almost nonexistent.  She is aware that she cannot recognize common objects, cannot work the tv or dvd, cannot understand why the ac blows and makes her cold but off and she is completely on fire.  The biggest pain is that she is aware of the grandmother she could have been and the grandmother that she is.  Just thinking about that makes me tear up.  She would have been an amazing grandmother. I picture movie nights once aweek with Kenzie sleeping over.  The two of them laughing and teasing each other while my mom does her hair, nails, and makeup.  Then out comes the video camera that mom always used to get to tape someone singing and dancing. Finally, there would be my mom, ending the night with her own renditions singing sweet Kenzie to sleep or telling her stories.  So many could have beens that will never be.  Instead, I watch this strong woman that had control of everyone and everything become decrepit and an empty shell unable to process a single thought.  Tonight I miss my mom and want her back. 

Monday, November 15


It is that time of year again-making preparations for the holidays-where to spend Christmas, how long to go to MS, will I have a job that I have to schedule time off. So many questions that I have so I am postponing thinking about. It is also that time to decide on Christmas photos and start taking some preholiday photos. I must say that I am overly impressed with Shutterfly’s quality and design choices. Over the years, I have used their site for a variety of items. First it started with just ordering pictures. Then I found the simplicity of using their site to make little story books for the grandparents. Now I am using them for Christmas cards. I also found their calendars to be of excellent quality and just the perfect gift for those family members wanted my children’s photos plastered all over the place. The best part of Shutterfly is the fact that it is easy to upload and quick to do. In less than ten minutes, I can have the perfect card. In the next few days, I will post some pictures of my children and you can help me decide which one to send out. If you want a Christmas card, make sure you email me your address. I wonder how my mother would enjoy a calendar with the little ones on it. She is obsessed about getting her calendar form a local health food store-she has had it for the past four years. I wonder if a calendar from Shutterfly would mess her up or start a new tradition???? Of course I will have to try. Check out their site!!! .

I am also going to try and get into the Christmas spirit a bit more. I have a slightly cynical view on all the major holidays since they actually originate from pagan holidays. It is not that I mind doing the holidays, I just have a hard time teaching my daughter and son about a great big fat man that is addicted to milk and cookies, is cruel to animals (talk about inhumane-making reindeers pull him and enough toys to give to all the children in the world along with those lonnnng hours in the coldest of all conditions), enslaves those poor elves, breaks and enters into homes, and only leaves a toy if you have been good. Good according to what standards?

Already we have the Christmas music out and starting to look for toys and things to give. My daughter and I had a discussion the other day about Santa as we do each year since she was two. My only hope for this year is that my daughter is old enough to stay quiet about our “secret” and not tell all the other ones that Santa is their mommy and daddy. Just yesterday, she wanted to play pretend that Santa was coming to our house. She tells me to go get some toys and hide them under a tree. Still has fun with it, still finds the enjoyment, and in a few years will not experience the sadness and confusion that I had when I found out my parents were Santa. The only thing I fear is that she will ruin it for those other children…

Mom has been unusual lately. We started her on ¼ ml for the past six days. While it mellows her out slightly, she is still getting quite confused. She seems to have difficulty with coordination and with vision. She looks around for things like me or my daughter and says where are you even when standing straight in front of her. I did manage to get her to church Sunday evening and she did well. She can no longer open or shut her door, stands around waiting for you to direct her where to go, freezes or shuts down when confused, and mumbles a lot. Yet she is able to ask me to buy gold because soon our money will be taken away from us by Obama, tells me to buy MRE’s because we will run out of food, and to sell anything I am not using. She understands refinancing and tithing and yet cannot hold a phone anymore. Strange disease.

Wednesday, November 10

On again off again

Last night I spent some time over at Mom's for Tuesday night movie night.  This time there was no bath-we spent most of the time trying to figure out what movies she wanted.  The night was a series of confusions and difficulties.  Yes the disease is progressing.  Mom was very anxious very nervous, and could not focus at all.  Kevin had a hard time with her during the day for the past two days-there is a huggggggge difference with her off the meds.  Today, mom woke up well and treated Dad fantastic.  That ended by the time Kevin got there.  Her eye hurt her again and she was obsessed about it.  After rubbing it raw, Kevin took her to the eye doctors.  Turns out her pore is completely clogged and has something the size of a pebble that was removed.  During this time, Kevin discussed dosing mom.  He gave her 1/4 ml of her 1 ml dosage and it seemed to do the trick today.  She was mellow and relaxed with an hour of getting the medicine.  She also did not seem as drugged out as previously mentioned.   She actually went to bed at 7-whether she will sleep all night or just for a brief time we will find out tomorrow.  So keep her in your prayers that this dosage works. 
As for me, well I job hunted today.  The results-a second interview with olive garden, a possible at red lobster, a def at a road side assistance/travel place (which I cannot bring myself to do for 9 an hour), and a maybe as a sub at a christian school.  I still have not heard back from my former school and I find myself saddened by that.  I loved working at the school and loved the people there.  I was so hopeful and now I cannot help but wonder why there is no call for interview.  I can only assume that God has other plans for me.  I cannot take a 9-5 job due to my children, my mother, and our non-profit, and the restaurants have the flexible scheduling that I need.  It is hard to picture myself in the restaurant. biz after being away from it for so many years.  Yet, I will do what I must to help my family.  Jason and I are in constant prayer, we know that if it is His will for Works in Faith, He will provide the resources to do so.  Without Works in Faith, our lives would be much simpler and we would have more financial resources.  I cannot help but think of how many people we would not be helping though and am so conflicted as to what our Lord wants us to do.  How do you know if it is God's will or our will-is Works in Faith our endeavor or God's.  I cannot imagine it was our will  considering the sacrifices and selflessness of it (not to mention neither Jason and I are the type to take from others-we like to be the givers and neither of us like the attention or praise of others).  However, the resources are not there-we are stilling waiting to hear from 16 foundations for grants and we do not actively fund raise.  Hmmmm decisions decisions.  I feel we are at a pivotal point.  Keep us in your prayers.

Tuesday, November 9

Long overdue

Quite funny that I actually wrote about writing more often and in actuality, I wrote less.  Ah well blame it on the risperdone-that crazy fickle drug that has us in such a quandary.  This drug is both a miracle and a curse depending on which day it is.  We put her on this wonderful "vitamin B 900" and for a few days, mom really liked it.  She mentioned how it made her laugh and not react to anything and that it did.  Dad was loved again, Kevin was funny, and I, well, I still managed to get kicked out :).  She was relatively pleasant that first Tuesday that I came up.  The bath went well, I remember she was so silly starting to pretend to tickle me and act all babyish (the way you would when playing with a 9 month old).  But she was happy.  She bathed and we styled her hair.  Somehow, during the the styling, she decided that her hair needed to be cut.  She grabs the scissors from me and almost cuts her finger.She is unable to open and shut them.  The scary part is she grabs the front section of her hair and proceeds to cut in an upward fashion about half way up her hair. At this point, I realized that if she manages to cut off a piece, it is going to mess up her hair and make her relatively angry.  I try to remind her that she does not want me to let her cut her hair and to that she gets upset.  Because she is on this new "vitamin" she is on a quest to attempt all the things that has given her difficulty lately.  I persist in telling her that it is too late to start a trimming hair and we wont get to watch our movie.  She replies that she could care less about the movie.  I beg her not to cut her hair and finally resort to pouting and telling her that I cannot sit by and watch her cut her hair.  I am leaving.  She gets upset with me, and kicks me out, but not before asking me to trim one piece.  I smile, grab the scissors, and trim away.  Episode is forgotten, movie night continues.  As I spend more time with her, I start to feel as though I am with a drugged out zombie.  She has this mellow happy disposition, but is completely out of it.  Zoinked.  It reminds me of those olden movies with the opiate induced stupor.  I hate it totally and see no resemblance to my mother at all.  She is helpless-can do nothing and I mean nothing.  Cannot turn on the TV, cannot open the door, cannot walk well she stumbles. The plus side is that she is semi happy, she is out of pain (the neuropathy has receded with it), she does not jerk violently, she eats a lot, she treats my dad as a hero and a lover not as the devil, and she wants to go out.  The bad is that she is completely aware that she is zonked out of her mind, that she is cloudy and cannot think, that she is wobbly, dizzy, and feels sick, that she cannot talk and knows it, that she cannot walk and knows it, that she is completely helpless in every single act or action and relies solely on us.  How do we choose what is best for her? 

Well after a week on the medicine, she wants off.  We want her off as well.  While she is still understanding what is happening to her, we feel it is only fair.  Now however, she is back to screaming, throwing, kicking us out, hating dad, hating me, in pain, miserable, cranky, malicious, negative woman that we have grown accustom to.  The only positive and i mean the only positive is that she has clarity and is able to do the basic things like run her Dvd which believe it or not is the only thing she cares about.  That one task makes her feel completely independent. 

This blog is shorter than most because right now I am tired and achy.  I hurt my shoulder today and I am having difficulty with typing  The reason I have not blogged is I have been traveling to Dr.s that are over an hour and a half away for those sweat tests, endoscopy, fecal fat, etc. My mother in law came into town last week and I enjoyed it so much that I did not have time to blog.  I chose to spend as much time with my husband  in the evenings since someone was at home with the children.  I miss her so much and am so grateful to have her.  She did so much for us and is truly the most amazing woman I know.  If I can aspire to be half of the woman that she is, then I will count myself blessed.  Not only is she absolutely gorgeous, but her heart and nature is of grace, elegance, and godliness.  She is there for me to lean on and I am there for her.  And it is not until this very moment that I realize she is my best friend.  I talk to her more than anyone and actually feel out of sorts if I do not hear from her daily.  I run everything by her and respect her advice, her opinions, and have such a desire to please her. 
Anyway, we still have no idea about Connor and are awaiting a fecal fat test study.  Why the wait-well I need to figure out how to collect every ounce of fecal matter that comes out of Connor.  In theory sounds easy.  Reality is much different.  Considering that he has chronic diarrhea, is still in diapers because of the diarrhea (potty trained for #1), and that the diaper absorbs it all, not so easy anymore.  Tried plastic bags, tried no diaper and constant supervision-but it gets foiled when night time comes...But this last test will help determine what to do next so I will figure this out... As it stands Connor has malabsorption, fecal fat, high celiac numbers, negative biopsy, perfect inside, chronic diarrhea, failure to thrive/low weight 23lbs, an underbite, possible asthma, and the newest issue-a rattle in the chest that turned out to be bronchitis after Friday's xray to the chest.  Mackenzie thankfully only shows failure to thrive/low weight 29lbs, fecal fat in her stools, and as of yesterday, a very deep cough (maybe also bronchitis).  We have yet another appointment this Friday.  We are still mentoring two young teen mothers, working with multiple elderly clients, have now a total of 9 teens in our lives coming to us regularly, and I am looking for a job to help with our ministry.  I have applied for a teaching position at my old school and am awaiting the interview call.  I am also debating on going to waitress.  Since we have not heard one way of another about the grants, I am tired of not being able to help our clients.  Some have money to pay for the materials, others it takes them a month or two to raise some funds, and even others completely go without because we cannot provide the funding and they aer on such a limited budget that there is not a dime.  We have one woman that is in need of dentures-she has only the tops and cannot get the bottoms.  It has been three months and we still cannot get them for her. It breaks my heart.  That is just one of the needs and the worse part is that I do not stop thinking of how to solve the problem.  I spend many many nights trying to figure out ways to raise the money for each of the clients.  I sold my engagement ring to help one person and am trying to sell this beautiful diamond necklace to help another client.  The only problem is finding the person to sell it to.  anyone interested?  So many people play the lottery or have great dreams of what they would do if someone left them a great deal of money.  Yes I dream that someone would donate thousands or hundreds of thousands to us so that I could give it to all those that we see around us.  People will spend so much money sending help to Haiti or Ecuador, Ethiopia and other places and yet they forget that here in America, there aer so many hurting and without.  When Jason and I started this, we realized that this call from God may cause us to lose everything and we are prepared for that.  I have lost the desire for material thing's (well the vado looks pretty good I must admit and I would love to get one)and the family vacation was put on hold.  We have no cable, no money for diners out ( my two year old has yet to go to a restaurant) no movies in the theater.  Everything we have been able to do has been from the generosity of our family.  There are times when the selfishness in me wants to go to cirques de soleil., skiing in the mountains, get my vision checked (blurred eye and bright lights bother my right eye as well has difficulty with glares from lights at night), fix two teeth that need some attention I believe, buy a new book or clothing.  I do miss the selfish spending sprees on new items not bargain items from freecycle, but then I get a call from  a person whose roof is falling in and they cannot fix it.  Or a person that has no insurance is really sick and cannot go get checked because they lack the funds to go. It is in those moments, I am so grateful for what I do have.  God has given us so much and I want to do the most for Him with it.  So pray that I get a job that can supplement what we are doing.  I will miss being home raising my children, but I feel that at this moment, it is something that needs to be sacrificed.   Ah sorry for the rant-it has been a burden on my heart and for some reason felt compelled to share it so that you can say prayers for our ministry!! The best part about all this however, is that we have found a church.  A place to call home.  A place to rejoice and hear the word of God.  What an amazing Lord we serve and I am thankful for His mercy and love!!