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.