date night!

Eric and I are going out to dinner and a movie. I will be feeding no one but myself. I will cut no ones food. I will take no one to the potty. I will explain no movies to children. I will enjoy my husband and dinner and conversation that is uninterrupted by children shouting "PAPA! PAPA!" It is my Christmas  present and right now there is nothing I can think of I would rather have. When Eric is home it is all but impossible to have a conversation with each other at all, forget about talking something important. As a mom, your dinner is rarely hot and rarely served first.  I don't have a lot of adult interactions outside of school appointments, doctor appointments, and therapy appointments. A night out with my husband without children is JUST what I wanted for Christmas. in fact he asked me what I wanted and I told him about a movie I wanted to see. I havent been to the theater in more than ten years. and we rarely get to go out to dinner together. so getting both in one night is a VERY nice gift. I am really looking forward to it. Since I spend all my time with kids, dogs, and chickens I am sure they will be topics of conversation. but at least we can see each other and hear each other and speak without interruption!

Christmas Memories

When I was a child I loved Christmas. I still do. I love it for different reasons now. When I was young my dad was disabled and mom worked. Many years dad and I would put up the tree and decorate it. I have so many memories of decorating with dad. Mom would come home from work and find it all decorated.  I remember waking late at night and lieing on the floor looking up at the lights. I loved to watch them twinkle in the dark and dream of the presents I would find under the tree.

On Christmas eve I would sneak down after everyone was asleep to see the presents left under the tree. I would peek at the tags and see what was for me. the wonder of it and the excitement were nearly more than I could bear! I would go back to bed and try to sleep. I would always always be up bright and early. Well before my brother and dad. Mom was always up having her coffee. Sometimes she would let me open one present and play with it while I waited. It seemed to take forever for the otehrs to wake up!  I have such good memories of those early Christmases. I can remember the taste of the candies in my stocking. Even when times were lean there were always presents under the tree. How they got there, I dont know. Some of my favorite gifts I saved for many years and passed on to my own children. My special auntie would make me doll clothes and barbie clothes. I see my kids playing with those and remember how I felt receiving them and playing with them for years. My special auntie has been gone from this world for several years. But Christmas always brings her to mind. I miss the way she used to play with me.

Christmas eve was always spent at Gramma Peg's house. I saw Missy that night. I didnt see Missy all year and I looked forward to seeing her Christmas eve.  It was always a late night and I often fell asleep on the couch. Not a Christmas eve goes by without my wishing she was still here to celebrate with us. I miss her smile. and laughter.

Christmas day was always spent at Grandma and Grandpa's.  I would see cousins and aunties and uncles. Many long gone now, either off in their own lives or gone from this world, we no longer get together every year. 

Christmas with ten kids has to be different than my own growing up Christmases. I was one of two kids.  Even though I had tons of gifts, the thing I remember most is family. This Christmas we are focusing on family. we will not have hundreds of dollars of gifts under the tree.  We have no need for anything. We have each other. All the kids will be home for Christmas. My parents and brother will be here for Christmas day dinner. We will spend a quiet day together, having fun, enjoying each other, making memories.  I look forward to many years of making memories with our kids. when you grow up, you realize that it wasnt the presents that made Christmas special. It was the people.

When I see you smile.

Smiles are free. they are what every mother looks forward to. and yet hundres of thousands of kids in other countries have no reason to smile. they have nothing and no one to call their own. Lets help them get their hearts desire, and fundraise to find them families! Money is often all that stands between a child and a family wanting to adopt them. My friend Julia is doing a giveaway at her blog. Go check out. Help a child. We can't stand by and do nothing. http://covenantbuilders.blogspot.com/2012/12/please-see-past-his-picture.html?spref=fb

Persepective

Another mom, A fellow adoptive mom, A fellow mom of a child with disabilities, her child came from the same country as some of mine. Tonight, I tucked my children in for the night with every intention of seeing them in the morning. Tonight, She had to say goodbye forever to her child. I watched Charlie Brown with my kids tonight. She watched her child slip away. I cooked and did the dishes, she lost her child. My heart breaks for this family. My heart breaks that we live in a world where children die.  Perspective. When a child dies you get a new perspective.  Even the most annoying behavior of my children suddenly takes on new meaning. It means they are alive. they enjoy the privelege of surviving another day.  We say goodnight, knowing that we will see each other again in the morning. We believe this wholeheartedly,  and yet, someone else is saying goodnight for the last time.  We eat and clean up never realizing another family has lost their appetite due to the lump of grief in their throats.  My heart breaks for this fellow mom, for her family, for the siblings of the sweet little boy whom they will not bring home again. Rest in Peace Henry. All across the world people are thinking of you with love.

A Child Of Mine
Edgar Guest
I will lend you, for a little time, A child of mine, He said. For you to love the while he lives, And mourn for when he's dead. It may be six or seven years, Or twenty-two or three. But will you, till I call him back, Take care of him for Me? He'll bring his charms to gladden you, And should his stay be brief. You'll have his lovely memories, As solace for your grief. I cannot promise he will stay, Since all from earth return. But there are lessons taught down there, I want this child to learn. I've looked the wide world over, In search for teachers true. And from the throngs that crowd life's lanes, I have selected you. Now will you give him all your love, Nor think the labour vain. Nor hate me when I come To take him home again? I fancied that I heard them say, 'Dear Lord, Thy will be done!' For all the joys Thy child shall bring, The risk of grief we'll run. We'll shelter him with tenderness, We'll love him while we may, And for the happiness we've known, Forever grateful stay. But should the angels call for him, Much sooner than we've planned. We'll brave the bitter grief that comes, And try to understand.

What really matters

Life with children who are damaged by alcohol is never dull. It isn't always fun, but it isn't always bad either. Much like normal peers they have good days and bad days. On some days they may appear to be functioning on all cylinders and others they may have difficulty with daily functions.Today they may know the alphabet, tomorrow they cant remember. They are often impulsive. There is no thinking before actions. They dont have any associations for what might happen after they do something. they just do it. no if/then, no cause and effect. Kids who are alcohol damaged can look very different from other kids visually, and have few effects of the alcohol. Conversely they can look just like everyone else and be SEVERELY damaged. They can fall anywhere in between. some kids are able to function pretty normally. others arent.

In our family, our alcohol damaged kids all have a difficult time academically. Some more than others. Teaching them requires a lot of repetition. Remember they frequently have short term memory loss. its hard to progress when each academic area builds on previous topics mastered. if you cant remember how to do that topic you previously mastered, learning the next step is difficult. It is often one step forward and one step back. repetition, repetition, repetition is key. Getting them to do things routinely, academically or otherwise can take years. We also see a lot of impulisvity. not think then act, rather just act. if you want something you see you just grab it before you even realise what you plan to do with it. We have lost countless items because they were nabbed by our alcohol damaged kids and then they cant remember what they did with them. I would imagine our woods are full of tools taken from the garage. household items removed from the house on the sly. (oh yes they are very sneaky)

We have the same conversations over and over ad nauseum. daily, weekly, monthly, yearly. and yet nothing changes. Changes take a long time. A very long time. it is often said of kids with alcohol damaged brains that if you will want them to do something regularly in the future start including it much earlier than necessary so when it IS necessary it has already a honed skill. Things such as showering daily and wearing deoderant.

Who needs sleep? not them apparently. one wakes crying every single night, is unable to cope with even the slightest changes. if his socks are bunchy or his blanket fell down, or someone went to the bathroom, or the wind blew, or he rolled, or ANYTHING. Another one goes to sleep well, but then wakes and is up for hours in the night. always has been. Another doesnt go to sleep. even with an adult sized dose of sedative medication he is still wired hours later.  if he does fall asleep he wakes with every sound. with a large family, there are often late night bathroom trips from someone. every single time these wake him.  When they are awake in the night they often forage the cabinets and refrigerator, eating everything in sight. One morning I found a boy asleep in his bed with chocolate chips in a bowl next to him, chocolate all over his face, and chest and bed. Not one other child was covered in chocolate, but that child swore up and down it wasnt him that ate the chocolate.

that leads me to another issue, lies. In the same vein of the chocolate, one of them blamed another child for wetting his pants. no, they can not take responsibility for ANYTHING. if its lost, it isnt their fault. the lost thing must be to blame. If they don't know where belongings are it must be someone elses fault for moving them, it couldnt be because they didnt put them where they belong. Lieing is a frequent occurance in this house. I try not to give them opportunity. I dont ask questions that would lead to a lie. if I already know who broke the lamp I wont ask who broke the lamp. It is often very obvious when one is lieing. yet they keep trying. they scrunch up their face or look off to the left every single time but they do it again in five minutes, even after getting caught.

These are all hard hard things to live with, but these kids who have been brain damaged are the most loving kids, the sweetest, huggingest, most lovable,friendly kids. They are outgoing and smile, never met a stranger(incredibly dangerous for them). they dont know how to maintain close friendships but they are always outgoing to people they meet. I must hear a million times a day "I love you Mama."

They think of some really out of the box solutions for things because they do not think like everyone else does.  They like to help. They dont really know how to play imaginatively(they do, however, have "magical thinking" at least at this point. which means they cant really distinguish between fantasy and reality) Because they dont know how to play they love to work. they love to keep busy.  If left to their own devices it often leads to trouble. but kept busy they will be happy all day. not every child, every day wants to work at things, but overall they are good workers. 

As you can see life with kids damaged before birth is hard. It's fun and funny too. It's loving and sweet. It's not what we planned, it's not what we expected, but it's pure love in so many forms, and that is what really matters. Love. Love is what matters most in their lives and ours. We love them despite their disabilities, despite their difficultes, and in some cases because of them. In return they love us freely and without restraint. I wouldnt wish alcohol related deficits on anyone, but I just can't imagine life without the love of my alcohol damaged kids. 

not much to report

moved the toys to back bedroom and seems to be working. Going to put up the christmas tree in the living room. Two actually. In order to have enough room for all our ornaments we have to put up TWO. I also got us a little elf named Caroline. Diana found her at a thrift store. Not your typical red and white shelf elf. she is gold and greenblue and CLEARLY a girl. today she knocked all the books off the shelf and looked very smug about it. The kids thought it was fun. They all know the truth about presents and where they come from. but it was a bit of fun.  Eric took 3 kids to museum today. one kid is at grandma's. and one is at friends house. so that leaves four at home. niiiice quiet. so quiet and strange I am not even sure what to do with myself. so I made carrot cake from some carrots that Eric grew in the garden. I havent been feeling great so he is going to pick up some groceries for me on his way home.  Psych appt for one of the boys on Tuesday morn. Tuesday night is a FASD support meeting. Weds PT/OT and somewhere in there I gotta get the van fixed.

happy thanksgiving. merry christmas. not much time of late for writing

got my nose pierced

I love it. I got the stainless instead of diamond because diamond were on backorder and further delayed by recent hurricane.

Life at home is settling back to normal. I miss Chrysta. she misses home. But she has to stick it out at her dads AT LEAST this year. Hopefully she will meet some new friends and find her place down there. Constant school changing is not good for her. 5 days after she started school where we live she wanted to change schools. Kids have had a few playdates in recent weeks. more are scheduled. Of course we have the obligatory ten billion appointments. Tomorrow is conferences at school. Stephen is coming to visit this weekend also.

Sophie is scheduled to go back to PA for surgery January 9. This should be a short trip. At least short in comparison to the recent 5 week trip. I am ALMOST caught up on laundry from that trip. ALMOST! but not quite. its neverending of course.

busy busy!

I have barely had a chance to sit down since returning from Philly. Its been run run run. appointments, more appointments, things that need doing, still trying to catch up on laundry, cooking, dishes are never caught up it seems. today will be no different. Sophie has pt and ot this afternoon. I am really over this fixater thing. oh shoot thats one more thing I gotta do is get her xray to her doc in Philly. Eric is going hunting this weekend, mother in law may or may not come to the house for a sleepover.  I invited her. she was thinking about it but I never heard one way or another for sure. so if she shows up great, if not, I guess she isnt coming lol.  Greenhouse is up over the pool and hot tub. Glad that job is done. whew! There are a few more details but the big part of the job, the hardest part of the job is done. Well I guess I better get another load of laundry in and send that xray and get ready to pick up Sophie for therapy. I guess the tomatoes arent going to get done this morning.

it has come to my attention

That everyone is in agreement that all of my oldest kids problems are my fault because we adopted"those other kids. ". I'm hurt and disappointed. Chrysta has gone to live at her dads. She is apparently embarrassed by her siblings. Wow. Never saw that coming but parents do not need permission from children to make life decisions. Although we DID ask their input about adopting. If I had given birth to them I wonder if everyone would feel the same.  My adopted kids have problems. We all have problems. Noone has a perfect life. One of chrysta's problem is refusing to be a participatory member of our family. I don't think that happened because we have other kids.  she was never an easy child. Maybe as infant. Started lieing at 4 and never stopped.  I'm sad and hurt that she chose to leave to live with her on again off again dad but I hope she finds happiness in her solitude. And I hope her dad who has never been a full time parent knows what a wild ride he is in for. I fully believe she will lie to him.  she will rage when she doesn't get her way.  I only hope she doesn't become pregnant.  I don't believe her issues come from a large family. Its genetic. And I really truly hope they are happy living together.

If I knew then....

what I know now, would I have lived my life differently?  Would I have chosen not to have so many kids? Would I have chosen not to adopt the kids with the most needs?Would we have chosen not to put Sophie through these surgeries and hard recoveries and difficult time apart from the family?  

I can't say. I think perhaps if I had only a few kids life would be a lot more simple. THat would mean that I would miss out on the joy that my Ukainians bring me. Yes they act like kids. yes they fuss and fight and require loads of work and attention. But they do bring me joy. I cant imagine life without them. Even removing one from the family would change the dynamics completely. I dont think I could imagine a time without them all. 

Would I have chosen not to adopt kids with special needs if I had known how labor intensive they are? Could I wake every day and not know the smiles of my Sophie? Could I live without my Ben's squishy cheeks?  Could I imagine life without my Ethan and Andre?  Those moments when Ethan says I love you Mama, could I live a life without that?  Could I live a life centered around me and my wants and needs?  I don't think I could. 

Since Sophie's surgeries and recoveries and therapies are ongoing its harder to answer this. I can only hope for the best for her. But to imagine a life without watching her make great strides is very difficult to do. She is a go getter. She likes to go after what she wants.  I see her working so hard in therapy and crying and fearful just to get through the hour of effort is so difficult. I question our decisions to put her through it. But I see other kids who have been where she is and are so much better off and I see hope. Thats all anyone can have. No one can say for sure what will happen. will she walk? will it be even more difficult to live a normal life after we changed her? no one knows. but we hope. its what drives us. its what gets us through. we laugh. we cry. we hope.

Since I cant change the past I dont know what my life would have been like if I had made different decisions. Since I cant see the future I dont know what it holds.  I can only cling to today and get through it the best I can and hope for the best.

not really happy today. rant ahead, feel free to move along

dyed my hair. I dont think I like it. still stuck far from home. the management here is crazy. the food is not always great and sometimes doesnt show at all.  I dont sleep. I sent post cards and letters home and not one of my family sent any back. really feeling the love. NOT. many things I cant say here but stuff is on my mind. I wish I could take a nap. but that aint happening. Sophie is entertaining the local girl scout troop.  therapy dog friends come tomorrow. monday doctor again. thinking about if I should switch my flight. but its more $$ to switch and I need to have time to send home some stuff. Accumulated too much here and cant fit it all in bags to take it home. maybe I should just rent a car and start driving and hope I end up where I am supposed to be. but I probably wont.

Defining Moments

Some of my kids are different. They don't learn like other kids. or they don't walk like other kids. Or they dont look like other kids. That said, they are all just kids. Since many things in life do not come easy to them, we cherish the moments when they do something that everyone else can do.

This week Sophie has begun to stand on her own. She is quite proud of herself, and we are proud of her! This alone is not significant since most kids learn to stand, and eventually walk. The thing that makes it a moment like no other is the fact that Sophie is nearly 7.  She was born with Arthrogryposis. This means she has contractures in her joints.  Most kids learn to walk at 1, maybe 2, Sophie is just learning now. 

She can be very labor intensive to take care of but after years of doing EVERYTHING for her, this is the first step to her independence. First she stands, then she walks, then she learns to do more and more. She is loking forward to taking herself to see the chickens. I am looking forward to her taking herself to the bathroom. 

She didn't run a marathon. She hasn't tested out of first grade. She hasn't done anything that most other kid's don't do. And yet its incredible that she does it. This is the first step to the rest of her life.

update on Sophie

fixater removal surgery went well. pink cast was applied and fixater was applied to other leg. She has had bad luck with epidurals. they dont work well for her. This time was different. She had an OUTSTANDING anasthesiologist. They were unable to get an iv in and after an hour of trying(under sedation) they were going to have to put in a picc line.) at the last second before I signed authorization for picc line they got a good iv. She came out of surgery comfortable. she has never come out comfortable before. things went well until about noon yesterday(day after surgery) then she started screaming and thrashing about ONE pin site. always just that ONE site that hurt. (She very much likes fentanyl ) they took an xray thinking since her bones are so thin perhaps there was a break from the pin going in. no break. so they started her on some oral meds and changed solution for the epidural. she was again calm this afternoon. Auntie Becky gave her an awesome new electronic gadget that is like an ipad for kids. that kept her entertained and happy for a long time. but suddenly she wanted to put it away. wise girl that she is, gave me the innotek2 and then told me she was going to throw up. While she had been playing the game I got her to eat two bites of chocolate pudding. she said it tasted bad. within a couple minutes of putting the game away she threw up, chocolate pudding and the eggs she had for breakfast. but she was feeling comfortable again. so all in all things are on track, even better than last time. Epidural is supposed to come out tomorrow morning so I am guessing she will go to the floor tomorrow. As long as she has the epidural she is in PICU. I expect she will be discharged around monday or tuesday.

Meanwhile I am staying at Camden Ronald McDonald house. Its lonely here. I dont know anyone. the people I do know who are in town are not staying here. The friend I was looking forward to seeing is no longer coming. Everyone likes to stay at the other house. We cant stay at the other house for various reasons so we will be here all month. Good thing I brought plenty of school work for the kiddo. I am not making her do homework while in the hospital. but when she gets out we will be able to spend a lot of time on it. If she did homebound she would get one hour per day per grade. so she would get one hour a day with teacher. she will have all day with me so we can spend several hours on it as well as seeing many cultural sights and still getting to our doctor appointments.

Thats about all the news from here. Its boring and I think I will go to bed. I did ride 7 miles on the stationary bike tonight. hope to do that again tomorrow sometime.

The Last Time

Today is bittersweet. I am so glad school is in session. The kids have been driving me nuts. Aj especially doesnt know what to do with himself without schedule and structure. Ben just wanders around. Ethan is ornery and I am his target. The girls help in mess making but shun mess cleaning. Chrysta constantly wants to go go go, take me here take me there, I want to drive. Cody never wants to go anywhere and never leaves his room. I have to call multiple times for him to help me. Jaeger just wants to watch tv all day and gets mad when I turn it off. Sophie is bored to death in her chair and if no one wants to push her around she starts asking everyone who walks past if they will "get me this" "get me that" despite the pile of toys in her lap. So Yes I am very happy to send them to school today. But its bittersweet.

It is the last time I will put one of my babies on the bus for the first day of first grade. I will no longer have a baby at home with me during the day(unless someone is sick or recovering). I will no longer have a toddler, preschooler, kindergartener. All my babies are growing up. When they are babies you think, hurry up and grow! Im tired of diapers, tantrums, etc. Then when you least expect it, when you hadn't even noticed those things have been gone for years, you realize, they HAVE grown. They don't need you anymore. They need you, of course, but not like an infant needs a Mama for survival. Not like a toddler needs a Mama for safety. Not like a preschooler needs a Mama for security as they seperate for the first time. Not like a Kindergartener needs a Mama to wave them goodbye on the bus. No, they don't need you like that anymore. They need you to remind them to do their homework. They need you to plan birthday parties. They need you to prepare meals. Occasionally they need you for some hugs and kisses and broken heart mending.

 Their needs change. As a Mama, probably yours haven't.  You need them to be your cuddly baby. You need hugs and kisses. You need to teach them things, and have fun with them.  You need help with chores! But as I put my last full time student on the bus, I see my needs have changed. I need time for me. I need time to put some effort into things I enjoy. I need to have some peace and quiet moments. I need to run out at the drop of a hat without any preparation for sitters or tagalongs. I need to take some time to take care of me. I happily shoved my needs under the rug for years to give my children the all consuming attention they needed. Now they don't need me like that.

So with bittersweet tears, as I wave goodbye to the school bus I wave goodbye to that time of my life. My baby raising days are over. I am now the parent of school aged children.  I am ready to enjoy adult activities with other adults. I am ready to move on. This might be the last time I send off a child for the first day of first grade, but it won't be the last time I cry over the loss of those busy, crazy, funny, diaper filled(pun intended) baby days.

back to school

its been a busy summer of music in the park, bike riding, gardening, raising chickens, spirit valley days, camp fires, eating on the deck.  We love our deck, we eat out there nearly every night, unless its raining. the garden is full of yummy stuff but since it got a late start and the weather was not cooperative some things are puny and probably wont amount to much. next year though since the garden is all cleared, and fenced it should be easier to get it in early and grow grow grow! We also started clearing in the back yard for the hot tub and pool. of course we dont have a pool but we want one! We already have the hot tub just need to get it installed. The back yard was completely wild and grown over. It is now halfway cleared. We are not planning to clear cut the entire yard. just enough to put in a simple hoophouse over the hot tub and the pool we do not have. lol. and have a little green space left over. maybe some flowers and sod.

We also got a surprise this week. While we hadnt planned on another dog until next year some time we got a call about a 4 month old lab mix who is already spayed, had all her shots, is potty trained and just needed a home. so Now Java the little black puppy has joined Mocha at home.  Mocha has been less than impressed with the interloper who is a little bit of a pip. She is in mocha's face and barks at her and really just wants to play with her but mocha is a crabby old lady of four and does not much want to play with her. In fact she has attacked her again and again. but I am seeing progress. Little Java is so funny. but puppies need a lot of exercise and the kids are doing a great job of that but what am I gonna do when the kids go back to school? that means I have to play puppy all day!!! she likes to walk on the driveway though so we can do a lot of that.

We are almost ready to put the chickens in the freezer.
I will be happy when that job is done. I am the chicken feeder. and often the waterer also. the one breed is dumb and stink. they dont scratch. they dont eat bugs. they just eat and poop. as you can imagine about 50 of those start to stink. and they dont seem to get that they are supposed to move when we move the chicken cages. they just stand there. The brahmas are much smarter and cleaner. they dont stink. they love when we give them grass. the white ones dont know what to do with grass except poop on it.

the kids are anxious to go back to school. Maia and Andre got the same teacher Natasha Jaeger and Ethan had last year. she is a very kind teacher who at the same time doesnt put up with any nonsense. and I love the way she teaches. she will be a great teacher for them. Sophie got the teacher that Maia and Diana had last year. we were hoping for that as she is outstanding also. the others got teachers we dont know. but I have no doubt they are great.

September 17th  Sophie and I will return to Philadelphia for her fixater removal surgery. She will also get a new one on the other leg that day.  Hoping for a nice day on the 18th so we can go to the Philly zoo. I try to build in a day between travel and surgery for something fun. Last time we went to please touch museum, and before that we went to all the historical stuff.  This time I am thinking the weather should be just right for the zoo.  I am not looking forward to being away from home that long again and especially during school.  but the bonus is we will not have to add two days of travel to drive to the twin cities to fly. we were able to get flights from our hometown this time.

we are disappointed that summer is coming to a close and yet excited and looking forward to a new school year and fall.  we have put up some pickles and some jam.  they will be good in the cold winter when we roast a nice chicken.

sick.

I am sick. didnt sleep well. up off and on all night. when I did sleep I had short little dreams. Tara came to me in my dream. she was well and happy and running.  I miss her. She was a real pain but she was my pain and I loved her.  The kids are still lobbying for another dog. Eric and I aren't feeling its the right time.

Sophie went off to clinic with daddy today for an x ray of her leg. they will email it to Van bosse. hopefully he will let us know then if we need to return for another visit or not. (hoping not)

Mocha rarely leaves my side. she is sleeping on the floor near the bed right now. She sleeps under my feet at dinner. if I put on my shoes she is already in the car. She is not going to take a chance on losing me. or maybe she feels I need her. I dont know. I do, though. need her. When the kids go to school she is my company.

Sophie is getting to be a reader. I catch her trying to decode words wherever she sees them. I havent spent too much time with her on her words or math this week as Eric is on vacation and we have been busy doing fun things as a family.

Cody went to his dads for the week. His dad will drop him at summer camp. Chrysta is at camp this week and next. The other kids go to camp a week from now.  Andre Ben and Sophie and I are going to try to do some fun things since they dont get to go to camp. I promised Andre a train ride since yesterdays train ride didnt work out.

Not much else is news around here, except the BIG news is that Stephen is coming to town. He is a friend of ours from twin cities and the kids absolutely go nuts for him. they adore him. so everyone is quite thrilled that Stephen will be here!

Tara

our brown eyed beauty girl Tara got hit by a car a few days ago. it was terrible. it was traumatic. she broke her back. it might have been easier on all involved if she had been killed instantly. we had to put her down. We buried her out by the garden she loved so much to run through. I cry every time I go anywhere because I cant stand to see the road. I cry every time I come back from anywhere because I still have to go across that piece of road and I am reminded she wont be here waiting for me. I cry a lot. I held her on the side of the road with my foot going numb under me, lest I should move it and upset her. I got blood on my clothes. I looked into her beautiful beseaching brown eyes and cried for her.  Eric went home to get the truck and I stayed with her. he stayed in the back of the truck with her and I drove us home. so the driveway hurts me too. Mocha misses her buddy. The kids miss their buddy. I miss my funny girl. Eric misses his hunting buddy that never did hunt. the same day she died we were laughing at her climbing all four legs into a giant watering container Eric keeps in the greenhouse.  the kids have never encountered death before. they have a lot of questions and comments. It is hard for me to deal with them when I am still so upset by it myself. Ben wants to know if she is going to rot. he also says well Tara is dead. Andre worries unnecessarily about Mocha getting hurt. Diana wants to know where it happened. Natasha immediately asked if we could have another dog, but later cried. Maia says she misses Tara. Jaeger and I sobbed together while Eric buried Tara. Sophie tells everyone we meet that our dog died. Ethan was fairly stoic but did get a little tearful/misty eyed. Cody was mad at us for putting her down. Chrysta wanted to stay home from the band camp she has been looking forward to for MONTHS. We made her go to camp. she is doing fine. staying home wouldn't change anything. Tara would still be gone. the kids would love to get a new dog but as much as I love animals I have to say no. I am still so heartbroken about Tara being gone. I dont feel that a new dog is a good idea. Tara cant be replaced. they need to learn that. Important loved ones can not be replaced. So we moved here a three dog family, and we are now a one dog family.

back in philly

kids are being naughty at home. nothing I can do about it from here. should be home on saturday if the house is still standing. a couple of my kids are really ticking me off. and it isnt the little ones. I dont have the energy to say more than that about it.

Sophie sees doctor tomorrow. we are staying at camden. A woman we met here when we were here a couple weeks ago had her baby yesterday. I hope he and Ashley are doing ok. Im thinking of you Ashley!

My Imperfect Child

My child is not perfect. There I said it. She is not perfect. Her body does not allow her to do all the things she wants to do. She was born with something called Arthrogryposis Multiplex Congenita. In layman's terms it means she was born with contracted joints. What is a contracted joint you ask? It is a joint that is fixed or frozen and does not move. She is affected in most of her joints.

She is unable to do most thngs for herself. She uses a wheelchair. She can not dress or undress, use the bathroom without help, bathe herself, and sometimes due to the difficult surgeries she can not feed herself.  I often wonder how she tolerates the painful treatments, the rude stares and nasty comments. People talk to her as if she can not understand. She understands just fine. It's her muscles that don't work, not her brain. I think to myself I would be a mess if I had to live like she does. How would I handle the struggles she faces? 

 And yet, she wakes with a smile every day. She tells me how she is going to help me with housework as soon as she learns to walk.  She tells her "brudders" to wait for her if they are going to play. She goes to school, learns, writes, and generally makes do with what she has been given. She never met a stranger, and makes friends everywhere she goes. She has a bubbly personality that seems to draw people in.  She does well in school and has lots of friends there.

As a parent you look forward to all the things you can teach your children as they grow. You don't think about what it will be like if you can't teach them. What if you never know the joy of teaching your child to walk?  Will it be ok? What if your child never learns to say those special words every Mama loves to hear?  Will you manage?  Will you learn to love her as she is?  If you do, you might find that even though parenting isn't as you pictured it, the person doing the learning isn't your child, it's YOU!

Our little ray of sunshine can't walk with her legs, but she takes us down many roads we may not have chosen to go on our own. She is the one doing the teaching. She leads us. Some of the many things we have learned is how to smile through adversity, to be kind to others no matter their treatment of you, to be brave when you would rather fall apart. I know I couldn't live like she does with her disabilities. I don't have the wisdom. I don't have the brave face. I don't have the never wavering smile.  She is not my first child, but she is the first child to teach me so many hard lessons I never thought I needed to learn.  Raising my imperfect child has taught me more than my college degree. It has taught me more than 40 years of life could teach me.  The next time you are faced with a scary challenge, think about my imperfect girl. She never gives up. Ever. If she fails, she tries again, she tries harder, until she reaches her goals. In spite of all the adversity thrown her way, she just keeps on trucking. It's too bad we all can't be as imperfect as she is.  Imagine what we could do if we were.

another day another tantrum

Andre started the day with another doozy of a tantrum. He decided he didnt want to live here any more. over and over he said it. he says it all the time. so today I told him if he would like he can call me Tammy instead of Mama and I will talk to Eric and see where we can find for him to live since he doesnt want to live with us. his eyes got big,  and the tears started falling like a storm. I asked him if maybe he didn't want to stay is that why he was crying?  He curled up in a ball and wouldnt let go of my arm. I said to him that I thought he wanted to go since he keeps saying that. and I dont want him to stay here if he is unhappy here. no. he didnt want to go. then I asked him if he would like to call me Mama or Tammy. he whimpered Mama. so I told him if he was going to stay and call me Mama then we were a family and he would have to pull his weight and help out around here, not have a tantrum when asked to help out. I dont enjoy washing his wet bedding. but it must be done and we are a family so I do it. and he needs to do jobs that sometimes he doesnt enjoy. if its a job he likes its NO PROBLEM he will work all day. but toss out a job he doesnt feel like doing and forget it. thats what happened this morning when I asked him and the others to put dirty dishes in dishwasher. Jaeger emptied the clean ones, everyone was loading the dirty ones. he absolutely refused to help. refused to sit on his bed. after our little come to jesus talk he has been sweet and helpful.  not that it will last long. it never does. but Ill take a break where I can get one.

I went to the dentist and have a gum infection. that sounds fun doesnt it? the monkeys devoured an entire bag of chips at snack time and didnt save me even ONE! I guess at some point they will be hungry again so I better go work on cooking some dinner. Last night we ran out of water so we couldnt cook because I couldnt clean up. so tonight its fajitas. it was natasha's plan to make them but she is nowhere to be found. I guess its my turn to cook.

back to philly

we have enjoyed being home. sophie goes back to philly next week. her leg is almost straight right now. i am hoping after this visit she will be sent home for the duration until the next surgery scheduled sept 19.(I think) she is bored mostly. and a bit whiny and spoiled. the other kids are having mama boot camp also. they ran wild while I was gone. noone did anything for chores. with the exception of Natasha who did try to keep things clean and has a sense of what its like to clean up after these monkeys. the laundry was 3 feet deep and I am not kidding. on the last of it right now.  good thing I came home early. I cant imagine what would have happened if I stayed gone another two weeks. Natasha also has a sense of what Mama likes and she likes to please. she knows it stresses me greatly to walk in to a disaster and start cleaning the moment I walk in. My standards are not high but I do like to have a trail at least!

My friend Teresa and her husband Mark stopped by today. They drove in behind my friend Cindy that was driving down my driveway to bring me some handmedowns. Cindy called me from the driveway to tell me she was driving down the driveway behind a BEAR! The bear was not at all concerned about the two cars behind it. it eventually turned off at the gas pipeline clearing just down from the house. so the kids are staying close to home this afternoon.  The dogs stay out all night to keep critters away.

It has been very warm here this week. Might have to bust out the one and only lonely fan we have. its an old box fan that doesnt even have a knob any more to change settings or turn it off. its either plugged in and on high or unplugged and off.  Probably going to have to invest in curtains for our room also. the sun beats so hot on our windows and the door always gets blown shut and then we go to bed and its like an oven after baking all afternoon. the rest of the house stays fairly temerate. if you get too hot you just go outside for a bit and suddenly its not so hot inside lol.

Andre had a doozy of a tantrum today. every so often he does. I ended up on his bed holding him (or rather holding myself in a way that doesnt allow for him to get up and leave.  He screamed and hollered and told me all kinds of nastiness. but after awhile he always comes to the point where he realizes it isnt working and asks if I still love him. I assure him that I do love him but I do not like his behavior. He decided to clean his wall after he calmed down. It is filthy from all his pounding with his hands and feet.  They have only beds in their room. Ben loves it because he can walk without falling down. I like it because its easy to keep clean and nothing gets destroyed. Andre does not like it because he equates "things" with love. he is hover extremely irresposible with his things and destroys things so putting toys in his room is just asking for it. clothes in his room just asking for it. so nothing in his room works best. One thing he really wants is a guitar and I wont give him one until he can show me he is responsible. that is proving hard for him to do.

When I got home last week I got a package in the mail. it was a beautiful flower basket arrangement from Pat who reads my blog! It totally made my day. made my week!!! I was thrilled.  Thank you so much Pat! It was so thoughtful of you!

I guss thats all the news from Lake Wobegone. where all the women are strong, all the men are equal, and all the children are above average.

two more weeks at least

at which point I am planning to check out no matter what. He said I could take her home now but would have to come back in two weeks. I am already here. going home and back again is a pain too. She has OT next week. Wonder if Camden is going to kick us out now. but Van Bosse is out next friday so that isnt OUR fault! he only does clinic on fridays. I really miss home and the kids and the dogs. While we have been gone the area has had a lot of flooding and I know the roads are a mess. Not sure how to even GET home with all the roads out. Sophie is doing well. Four turns a day on fixater. making progress but not as much as I had hoped. it will come. it just takes time and I am asking for miracles here because we have been away from home so long. I have not much else to report as not much is going on here. We watch tv, read, do math, visit with people at Camden and yesterday we went to Beckys house(THANKS BECKY!!!). the days start to run together after a bit. We went on a big shopping trip yesterday....to CVS for diapers and a box of cheerios. I also got new headphones because mine crapped out on me. and I have a lot of time to be using them. I think next week we will go to the aquarium in Camden. wonder if there is a movie theater we could go see a movie.  Sophie made a friend named Mikayla here at Shriners today. Mikayla is 7 and also has AMC. Well not much else to report. we are alive and well. missing home and husband and kids and dogs!

moving

we are definitely being moved to Camden. Im not happy about it. but there is nothing I can do about it and at least its a place to stay. Im sure Ill meet someone there. many of my friends here at Erie have gone home or are going home anyways.  When I was a kid I never had a problem meeting people. Every where I went I just made a friend to play with and life went on. even if I never saw that kid again we played while we were able to. its a little harder as an adult. And somewhere over the years, I seem to have lost my ability to just walk up to someone and start chatting. many times over there there are moms with babies still in utero. babies in nicu. or kids in hospital not kids at rmh. I find it difficult to relate and make friends. Last time I stayed there with Ben, Aseel and Bisan were there. we knew that. so I guess Ill have to work on that. meeting people. I guess I get to work on packing up all our crap in a hurry also, since we may be going tomorrow.  Things work a little different in Camden. this is one of the reasons I find the Philly house a little more comfortable and comforting and home like. Certain things are similar, like the food situation. food is available and dinner is served daily.  although if you are fussy you may be hungry.  The big difference is that there are no tv in rooms. only in family room. Apparently this is to encourage those of us with the problem I mentioned above. we are forced to spend time in common areas.  There are climbing areas but not much in the way of toys. so if you can't climb there isnt much to do(although if you can climb its great).  guess we will be working on that math and reading.  here's hoping we a) meet some one with something in common over there, and b) are allowed to go home soon. I miss my OWN home. my OWN way of doing things. a house run MY way. and all the kids in it also my OWN.

unable to comment....

it seems I am unable to comment on my own posts! how annoying. So I am answering them here. Michelle we will be here until her leg is straight as long as that takes.

Rebecca  I am not depressed I am lonely and missing my family and home. I am in a strange city with my disabled child for unknown amount of time. I have no transportation and it is possible I will not be able to stay at the place we are currently staying. so what I was saying is this is a hard time and a little support from home would be nice.

It's lonely here.

I miss my family and my home. An old friend stopped in today to see us. That was nice. He's a guy I grew up with was in the area. If you're reading this, thanks Mike!  Sophie is doing really well. She has gained 25 degrees already! Her leg was fixed at 90 degrees when we came here. its now at 65.  Thats what I call progress. She is very adaptive and while she is still nervous she is adjusting.

We are staying at ronald mcdonald house. Sophie sees her doctor each week. also is working on some OT once a week. however that only makes two appointments a week. even though we live across the country they want us to have three appointments to stay here. so thats all up in the air at the moment. I may have to move to camden if they will have us. the person I need to talk to is not in until sunday at 5. 

I am very disappointed that I try to give and give and give I rarely get anything in return. I reach out to people. people I just met, people I have known for years. occasionally when I am in a dark or difficult place someone will reach back. but here I am across the country with my child for medical treatment and most of the people I know cant be bothered to even shoot us an email asking how we are.  drop me a line on facebook. send an email. acknowledge my existence. Im drowning here and no one will even throw me a lifeline.  

she's out!

busted little queenie out of the joint today. Shriners hospital for children is great but I was getting tired of sitting there all day and running back and forth. now we adjust. Im scared to death. Im on my own with her now. Im doin ok but scared and nervous and sick of hanging around already and still weeks to go! thankfully we have met so many people here. one of our favorite friends will be here in ten or 11 days. that will be fun.

Sophie is doing pretty well. she just refuses to sleep. hasnt really slept in days. she is out cold right now. a little meds, a big day in her chair, back to bed and she just zonked out. This of course means I can watch trash tv. but there isnt really anything on. Figures huh?

things are a little rough at home I hear. I had a morning call to talk to a boy who was hitting. and an afternoon call to talk to a boy who was not listening and insisted on jumping out the window. poor husband is trying to do it all there while working full time. We hardly get to talk because he is so busy. If we do its a pretty quick chat. I miss home and my husband. and the kids. and green grass. and my trees. and my house. and my dogs. and my bed. and my car and a familiar city.

there is a lot of good food here and its very hard to not gain weight. but I have been walking and running trying to keep my weight down. Sophie didnt last long enough after dinner to get a chance to go walk and run. hopefully in the morning she will be fresh and in good mood and I can get in some exercise. not sure if its possible for me to do that without her demanding something again and again.

well I guess Ill go to sleep since I am sure she will wake me partway through the night.

life is hard right now

they turned down Sophie;s sedation and she went ballistic. she could not be soothed. she was very upset and clearly in a lot of pain. I feel bad for putting her through this but I know she can walk if her legs were straight. thats what all this is for, so she can walk. she wants that. I want that. I finally left at 3 because if she was awake she was screaming at me or shrieking in general and if she was asleep she was asleep and I was reading my book watching her sleep. once when she was shrieking about pain(I dont make light of her pain, I am sure she has plenty of it) the doctor and nurse were able to calm her a bit but then I stepped in the room and she went all out again. there is a correlation to my being there and her being wild. and the doctor was so kind to point it out to another doctor who steered him out of the room. dont you just love hearing how your presence is the problem? yes he is right but it still hurts. I want to comfort her but she is beyond that. a bit of shushing and head rubbing is not going to make this better. so they turned the meds back up and she has been sleepin away. I am at Erie RMH. feels a little wierd. I feel a little guilty. but not too much. she needs to rest and if I am there she is getting all worked up. I hope tomorrow will be a better day for her. I really want my sweetheart back.  She is NOT herself right now.  As for the leg they didnt get a lot of straightening from the posterior relase. some but not much. and the fixater is completely wrapped in gauze so you can barely see it at this point. she is not a happy camper. She said I wish I didnt choose this leg! (as if the other leg would be so much better) and she also said I dont want to go to philadelphia anymore! it hurts! and she is right of course. so I am going to bed now and just called. she is still sleeping. I will go do the same.

letter to please touch muuem

I recently visited your museum with my six year old daughter. She is disabled and uses a wheelchair. We were very much looking forward to an experience where she could do what everyone else was doing. She was looking forward to a museum where no one would tell her "don't touch." No one said the words, but there were many ways she was excluded. While we did have fun, we were disappointed at the accessibility of all the exhibits. Some were too high for someone in a chair, some were too low. Some things did not allow her to get close enough to participate. Some exhibits were not deep enough to allow a child in a chair to reach the exhibit. We found the little town area in the lower level to be lots of fun, but the ambulance does not allow a wheelchair, even a really small one, to fit into the driving area. The seat installed there excludes anyone who can not walk up and sit on it. This means kids with disabilities must "ride" in the back of the ambulance area. Kids with disabilities dream of driving ambulances just like able bodied kids. It was very disappointing to see her rush to try something new only to find that it was not accessible to her. In speaking to other families with disabled kids, I found I was not the only one disappointed in the accessibility of your exhibits. I travel to the area often from my home in Minnesota, with my disabled and nondisabled kids. Sadly we will not be visiting your museum again. It isn't fair to my daughter to have to watch all the other kids play while she has to sit on the sidelines because of her disability. We appreciated the handicapped entrance, but the rest of your musuem needs to consider the needs of EVERY child, not just the ones without disability.

going public

I usually only post certain things here. but its time to get real. contrary to popular belief, life at our house is not perfect. it is not dreamy. some days it is barely tolerable. We have several special needs kids. and we have some kids who developed other special needs as a surprise. we have specialists. we have surgeries. we have therapists. we have fun and we have tantrums. Thus far the most difficult to deal with is mental illness. not mine. theirs. second to that is developmental delay. Physical/medical disabilities are SO much easier to deal with. I find the mental illness really wears me down. wears on my patience. the screaming irrational behavior is so hard to live with. the constant nastiness is difficult for me because most of the time its directed at me. either by default because I am here the most, or because thats just the way that child always interacts with me. the simplest request, the kindest rebuke leads to snarky comments and hurt feelings. the other kids dont understand the behaviors. heck I dont unerstand it. the blow ups get worse as the day goes on. as the week goes on. I do not feel that asking children to help take care of their own needs is asking too much. Things like putting their clothes away, putting their dishes in the sink, putting their lunch in their backpack(I dont ask them to make it, only put it in their bags), using their time wisely to be ready in time for the bus. given over an hour to get dressed, serve and eat their OWN breakfast, pack lunch, and brush teeth is not unreasonable. Certain children can get up, shower, get dressed, unload the dishwasher because they felt like being helpful, eat, take meds, brush teeth and still have enough time leftover to play with the dog. One child particularly likes to make the lunches in the morning. all of them. SOmetimes she makes them sometimes I make them. but it is never her JOB. if she wants to do it she does, if she doesnt want to I do it. but lunch is always made. and yet some other children can not get their act together and be ready on time. and all hell breaks loose and the brunt falls on me. I am tired of being abused by my children. I am tired overall. I am looking forward to going to philly and just dealing with one kids issues. so I am having a down day. and I'm letting my humanness show. I have a lot on my plate. most days I dont mind it. but multiple meltdowns before breakfast make for a hard day.

check out the cuties!

Sophie and Ben stole the show on last nights news!! check out my cuties! http://www.fox21online.com/content/activity-extravaganza-kids-disabilities

Preparing for a rough summer

Maybe it wont be as bad as I think. Sophie and I will be headed to Philly for a big surgery that is planned for June 6. Hopefully she stays healthy till then. Took almost a year to get this surgery date. Sophie will be getting herself an Ilizarov External Fixator. Or as I generally refer to it, an ex fix. Life as we know it is about to change. Sophie will no longer be able to scoot. She will wear the fixator for probably 3 months. this will straighten out her knees. Unfortunately we have to stay close to philly for the first month. So Sophie and I will be hanging in Philly for the month of June. July 4 is usually my favorite holiday but we have missed it several times in recent years and looks like I will miss it again this year. That makes me sad. I am sad to think of leaving my babies for a month. they will grow and change and I wont be here to see it. but Queenie must have this surgery if she is to walk. Sophie is going to be a handful during that time. I know this. I will be the only one to deal with it. the only one to take care of everything. of course I wont have to take care of anyone else in that month. but she can be a lot of work. I dont know how everyone at home will survive. then again maybe I am not so indispensable as I think I am. the girls know how to do laundry. they all know how to do dishes. some know how to cook a few things. they all know how to make a sandwich. I guess they will live. So many things I wanted to do this summer and now I wont be able to do it all of june. Hopefully July will be better and we will be home and can still see and do some things.

yesterday we went XC skiing. I didnt do so well. but we had fun. Enough fun that I would do it again. Sophie and I are finally having a quiet day at home just the two of us today. She likes days like this. She likes to go to Grandma's but has been begging to get back to routine. Last Friday I broke out in hives all over and had a miserable day. She went to my Mom 's that day too. so today is jammy day. relax, play, eat lunch, nap, play, eat, play eat all in jammies.

The other kids are doing well. Becoming fabulous readers. Jaeger, Natasha, Maia, and Diana will devour a chapter book. Ethan is a great reader but more reluctant to read a chapter book. he just doesnt have the attention span. He would rather read a short book. Andre and Ben and Sophie are also learning to read. getting better all the time.

Still no date on Sophie's next surgery. Hoping to hear soon, maybe when we go to see Dr VB end of the month. That reminds me I better get my name on the list for ronald mcdonald house. Ben may well come home doing the serial cast thing again. I am fully prepared and expecting that. his feet are STUBBORN!

Natasha has lyme disease and is on antibiotics. Andre has H Pylori and is also on antibiotics. some flu bug went through the house this week also.
I am doing so much better. Got my central line IV out. thats a relief. still a bit on the weak side but stronger all the time and not sick and no lines or medications. Being very careful about what I eat. no pizza. no nachos. no soda. no high fat meals. this translates to not much eating out because I am always nervous about what I will be able to eat at a restaurant.

I am trying to raise funds for Alicia on ReecesRainbow.org I am hoping someone will see her cute little face and make her their own. A large grant will help that happen. Please go to http://allforalicia.blogspot.com/2012/02/all-for-alicia.html and donate. you could win some very nice handmade items or a Michael's gift card to make your own crafts. best of all you help a child have a chance at a future.

All for Alicia

I moved the giveaway to its own page. Allforalicia.blogspot.com Please check it out and share it! lets raise enough money for this little girl that someone would be able to adopt her without a great hardship.

All for Alicia

All For Alicia Giveaway!

For every 5 dollars donated to Alicia's fund at Reecesrainbow.org your name goes in a hat to win one of the awesome donations below.



In addition to the items below, there is a 50 dollar gift card for Michael's! Let's make sure this little girl doesnt go to an institution for the rest of her life. Doesn't she deserve a home?
















disclaimer: all monies donated go directly to Reecesrainbow.org. This is not MY adoption, I am raising funds for this child's grant in hopes that it will help someone to adopt her.

All For Alicia

Alicia is a little girl on Reecesrainbow.org who is scheduled to be moved in August to the institution.
For every 5 dollars donated, your name will go into a hat for some great prizes! Don't let Alicia go to a mental institution. Doesn't every little girl deserve a mama?

I will soon be posting photos of all the great prizes. some of the prizes are a 50 dollar gift card for Michael's craft store, quilts, and tote bags. Various other prizes will be included as well!

another day another doctor appt!

saw surgeon today. everything seems fine. no need to see him again until Dr Shepherd d/c my antibiotics. then See him to get Hohn out. see Dr. Shepherd tomorrow. sadly he also told me that even a little bit of alcohol, like half glass of wine, could set off my pancreas. so now wine is on my list of forbidden things. so many foods are now forbidden. I only just discovered wine a few years back. love it. I do not drink to excess but I do like the taste now and then. but now I cant. at least for a good long while. I dont think I would try it any time soon. my blood work is showing improvement. so I am getting better. from the pancreatitis as well as the abscess. and now I am ready for a nap. whew! looong morning! got kids out the door, did my infuzion, tossed on clothes, ran to appt(rather I drove), then had to walk over to pharmacy to pick up some of the kids meds. and down to a different building to get Ben's AFO fixed. all that walking wore me OUT! I am going to nap before anyone comes home and wakes me.

a weeks time

I have been home a week now. the days are getting longer. I am getting stronger. I am feeling better. Next week I have a CT to check on the abcess and also apppointments with surgeon and infectious disease doc. Hopefully the surgeon will deem me fit for removal of drain. it is a drain on my soul, the quality of my life. I did my infuzion every day. its annoying but I get it done. it is making all the difference. I feel so much better. Weak and tired. but not so much in pain or agony or feeling sick.
I decided we needed a water purifier. our new well is no where near as good as the old one! so I took myself to target. I was EXHAUSTED when I got back. but I did it! I got a water purifier. and then I got a nap. to think I used to walk all over the store and walk to my car at the end of the lot. today I could barely walk from handicapped parking to water purifier and back again. I am also losing weight like crazy. Down to 161! and I have a WAIST! I dont recall having a waist any time in the recent past. I am excited to see 150s. This isnt the way I planned to lose weight. but really I am doing it right, I eat less(not hungry, limited diet plan, and smaller stomach able to hold less) and I am so weak that every trip upstairs or down is a workout. not to mention antibiotic diahrrea. all of it adds up to weight loss. 20 down! 30 to go! I cant eat a lot of stuff I used to. pizza soda mac n cheese. anything high fat! that means I cant eat all the stuff that made me fat in the first place. Ill miss those things but once in awhile I could have a small amount(AFTER I am long better and not risking another pancreatic attack.) I just cant live on it. I gotta find a new way of life. one that includes low fat/no fat. fruits and veggies. so anyways I am getting better. definitely stronger, and in a better frame of mind.

struggling

with why did all this happen? how am I supposed to get through this? I am home now. doing my infuzion. saying to myself every day will get better and before you know it standing long enough to make a bowl of cream of wheat will no longer even register as a question. it will just happen and afterwards I will say WOW! Poor Eric is picking up slack all over the place. my parents are doing what they can. taking care of Sophie isnt easy for them. but they do it because I cant. Im grateful. Im sad that I cant but I cant. Im at a loss as to where to go for help. There is nowhere to go. Ins wont pay for an aide. we could probably qualify for tefra and get one that way but by the time I got through the hurdles Im not sure it would be worth the effort. or SSI and MA by way of. but again by the time I jump every hurdle it will be so long it wont have been worth it. I think I am going to have to cancel sophie's pt/ot eval that has been on the books for months. impossible to get into. I cant pick her up. blah. just get all this over with. im sick of it already, as I imagine is my husband, my hero, who plays mommy and daddy for weeks on end.

well that was a short homecoming. I am back in the saddle again! and I have many of my "people" are here! I have a lot of people here now! they stop in to see me daily. My family practice doc comes also! so every day I hear from FP,GI, ID, and interventional radiologist, and of course the surgeon! just peachy!

I am home!

been home a couple days. almost feeling normal today except a lingering pain in my side which I have no idea where it is coming from. and of course the bitter taste in the back of my mouth from the bitter NASTY pills I have to take. I am having a hard time even keeping them in long enough to do any good! thats how nasty they are. I think I hit on something by taking it with yogurt. last night I tried banana and threw up almost immediately. couldnt even put the med bottle down and I was running for the throne. up they all came. These are some nasty little pills. I cant understand why if they are SO BAD they cant put some sort of coating on it! make life a little kinder for those who have to take it!!!

tough times

still at the hospital. I am sick all the time I cant eat. I can barely drink anyrhin. and now tomorrow I have to go back to surgery to take the stint out of my pancreas that was supposed to come out on is own. hopefully that solves many problems. I am so sick. nauseas. I cant walk, I cant sit, I cant read or facebook or computer all I can do is lay here in misery.

back in hospital

fun times. NOT! nurses are not very attentive. last night I was in severe pain and called twice but no one told my nurse. she just happened to see my light on and stopped to see what I needed. by this time I was in tears and pain was off the charts. Today I am waiting for someone to come help me get everything together(cord,iv,foly) so I can move about a bit. no one has come. its been an hour so I guess they arent coming. Dr was just here and I told him how dehydrated I was. so hopefullly thAT gets figured out. said they need more blood also.