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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!!

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