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!