an amazing thing

An amazing thing has been happening here. Sophie has been working very hard in therapy and at home. She can walk in a walker now and cruise around furniture but she has started to walk between furniture. and walk long distances such as room to room if you hold her hand. watching her walk is amazing. I can hold her hand and walk with her just like other parents. she and we get to be normal for a few minutes. Its so great. She is so proud. We are proud of her too. I will write to her birth grandmother and share this news. They will be thrilled. We will order her a walker, she is not yet walking independently with no support. we tried several and finally found one we like. Works well for her and doesnt work against her and it folds compactly. some of the others are HUGE! I imagine in a year or so she will not need it but if she does that will be a-ok. we are just happy she is has come this far. the rest will come. I know it. but finally after years of tears and trials she is making big progress!

Coming Home

Home. The place of comfort, relaxation, peace. Your own place in the world. The place where you can leave your troubles for a little bit and breathe. The place where you find comfort in being surrounded by your own familiar belongings. Where you know where everything belongs and why it fits best there. Sometimes your home, your place of comfort, becomes a battle ground. It becomes a place you don't want to go instead of the place you run to when the world is too much. THere are days when all I long for is to be at home, beside the fire, with my feet up, and my dogs nearby. When the running around gets to feel like its constant I just think about that fireplace. There are other days when I drive as slow as possible on the long driveway, sometimes stopping just out of sight of the house, delaying the arrival home as long as I possibly can. When you are raising kids with special needs home becomes a place where work is never ending and maybe you even develop a sort of post traumatic stress disorder about going home. When you are raising explosive children, home is not a place of peace. It is a place of high stress, constant alert. A place of turmoil rather than comfort for you. You work so hard to maintain the comfort of others, there is none left for you. Home becomes a war zone. Many of the same things that worry a solider in the field worry a parent of a child with special needs. When will the explosions happen? How can we keep damage to a minimum? Is there anything we can do to make it stop? How many will be affected and for how long? How long will the explosions go on before the source can make them stop? The constant combat takes its toll. A light tap feels like an angry punch. A simple expressions becomes a hurled insult. Misunderstandings happen more and more. The entire family is affected. Home is no longer home, but a battleground. Can you imagine going into battle again and again and not coming to a point of fear and battle fatigue? Soldiers go into battle repeatedly and have no choice but to deal. So too must parents of difficult kids. We must face the battle every day, multiple times a day, for weeks. for years. we have no idea when it will stop. Maybe it won't,there is no end in sight. Every day we get out of bed and face the unknown battles of the day. Sometimes they start before breakfast. Many days they continue until everyone drops in exhaustion. We rarely get a chance to go out and do things for ourselves. Who else would deal with the level of stress and chaos we deal with all day every day? When the kids are at school is often the only time we can get anything done outside of the home, but its also the only time there is peace at home. we rush around to get things done and hurry home to our place of peace. If the house is occupied by the ongoing battle, we may linger in the toiletries aisle debating the color of toilet paper we should buy. Anything to keep from going home. Anything to stay out of the battlefield. Next time you rush home to your place of peace and calm and quiet, ask yourself which of your friends is living in the warzone and send us some peaceful thoughts. Maybe send up a prayer for peace. Stop by with some wild flowers or fresh baked cookies. Offer to babysit so we can get out of the battle for awhile. Someone needs to take care of the parents too. If there is no support Parents of special needs kids become isolated. We run out of reserves. And when we do, who will take over the war? The children will need to be taken care of, even when the parents fall ill with stress and pain. It may be you that has to pick up the pieces of their war and battle with them in our absence. Only then will you know the true meaning of peace, after its gone.

another day, another......day

dr appointments for 2 kids today. Therapy for Sophie yesterday. Trialing a new walker. Her posture is much better in this walker than the other. it folds up nicer and easier and I only hope she can adjust to using it. I had to drive the kids to school last week because with all the melting snow the bus wouldnt be able to get in the driveway. Thankfully the culvert worked its magic and the driveway didnt flood but the upper part was pretty soggy. Its back to business as usual now and they are all off on the bus. Only about a month left of the school year. Last year at this time it was 70. this year Im still building a fire in the fireplace every day and there is STILL snowcover in places. Areas to the lsouth of us got several inches of snow yesterday and last night. Looking like the sun might peek out today but it just isnt getting that warm yet. Sophie and Ben and I are heading to Philly again next week. Since our visit to the ocal ortho doctor was fruitless I guess we will be having to run to philly for casting. Lakeisa and Mikayla will be there and Michelle and Britt and baby A will be in town too. Then there's always our good friend and ray of sunshine Becky. I look forward to our Philly trips. I dont really have any close friends here. but I see a lot of great people when I go to Philly. Mostly they are moms of kids with special needs so we sort of "get" each other. Chrysta is still at her dads, still in turmoil. I think she is going to move back here. She will definitely be going to counseling every week. Relationships are very difficult for her. She called last night and talked to her brothers and sisters. they were so happy to chat with her. It has been so hard on them for her to go. They think she doesn't love them, that's why she left us. Still trying to figure out the bedroom situation with her returning. I could just put her back where she was, with Sophie, but Im not sure thats the best place for her. I dont have any more bedrooms. She will stay down there until the end of the school year so she will not lose the year. She will not have as many choices as she did down there. but such is the consequence of rash decisions. I dont write much here as I get so busy. Dr appointments, school appointments, errands, therapies, spelling words, dinners, showers and beds and then I sit down and try to watch tv and fall asleep. The pharmacy frequently drops different meds off their autorefill list so I am running to the pharmacy several times a month too. I guess I have been away from my blog for too long because I dont even know what to write. Time to dig out those blog prompts!

fundraising for Sophie

http://teespring.com/runfeetrun if you read this please go and look at the tshirts we are selling for sophie to raise enough money to take her to a conference for people with her condition. She really deserves to go. SHe has worked so hard and been through so much pain. She needs to be with people who understand that this isnt like your brothers friends cousins neighbors milk man who had a broken leg once. People who understand this is a lifelong issue and a lifelong battle. She needs to see people with her condition who have jobs, have children, and husbands and live the American dream. http://www.gofundme.com/2bpy20 is also a fundraiser for the same conference. We have to have all reservations in by May 28 for July conference. I am a very giving person. I give everywhere I can. I help anyone who needs it. This time, not for me, but for my daughter, I am asking for help. So far we have had 3 donations and 2 commitments to buy shirts if we reach our goal. If we do not reach our goal no shirts will be printed. we do not even have enough for ONE plane ticket, much less hotel costs conference fees meals and a ticket for Me to take her.

AMC conference

I REALLY want to take Sophie to a conference where she can meet other people like herself of all ages. Its very expensive to fly there and stay there a week. I am doing a tshirt campaign to try to raise enough money. No tshirts will be printed if we dont meet out goal of a hundred shirts. www.teespring.com/runfeetrun please look and pass on our link!

sickies

Got a houseful of sickies this week. Started with Maia last week. Progressed to Diana,Ethan, and Andre over the weekend. Andre was able to go to school today. Ethan too, but Diana and Jaeger are still home sick. Only a couple kids left to get it and I am hoping they dont! Easter is the end of the week and we will be hosting dinner for family and friends. I have not heard from the local doctor who said she would call me after doing some research. I guess its back to Philly with him. I was really hopeful but I guess that was a wasted doctor visit. Eric is at school today talking to second graders about bees. He brought the super(empty) and the bee suit to show them where the bees live and tell them all about beekeeping. I guess when they read a book about chickens they will want me to come in and talk about chickens. maybe not. I dont know what I would tell them. That big red rooster attacks me all the time? Eric is getting ready for summer and thinking ahead to planting. I dont know what or when hes going to plant because there is 3 feet of snow on the ground! Maia had a birthday last weekend and turned 9! wow. 9. She was just born yesterday. she was just a baby last week. just a toddler last month. and now out of nowhere she is 9? how does that happen? Miss Natasha is still 10 but suddenly 10 going on 17. tall and leggy and fashionista. her birthday is coming up next week and she wants clothes. not toys or doll stuff. they grow too fast. Diana still loves her doll and plays it all the time. Not much else is new around here. just anxiously awaiting summer and school letting out. Should be a good summer with no fixaters!

a day in the life

local ortho visit was a bust. she didnt want to cast. wanted to cut. its out motto- she's a surgeon, thats what they do. true to form she was wanting to go straight to cutting a bone out. Ben of course heard this and started crying thinking she was gonna do it right then and there. I assured him no one was taking his bones out. not now. not later. she also said the rotation in the foot is femoral. it isnt. we know this. its below the ankle. when his club feet are corrected(before they regress) they are straight! she said his hips are tight but fine. Apparently shriners was unable to send any records. so she had no info on previous plans from Dr Van Bosse. He now has an appointment to go back to Dr Van Bosse. Sophie has an appointment so they got them both in same day same time. Today Maia is home sick. She was up all night throwing up. I couldnt go to sleep after that so I have pretty much been up since about 1230 last night. I have my friends girls coming over tomorrow night for a sleepover. Im a sucker for cute little girls! they are so good though when they are here. should be fine. snow is still out there. not sure we wil see spring for a long time the way its going. late june probably! just 3 days ago we got about a fot of fresh powder. blah Im tired of winter I want spring. Had to put a bazillion dollars into my car this week. it was so hard to be without it while it was in the shop. Sophie missed therapy again because I had no car. but it runs now. life goes on. a bazillion dollars poorer. You know when they say they have to get the part from a ford dealer its gonna be spendy. I can barely keep my eyes open so I think I better take a nap.