A new leaf

Ethan has been a difficult child all of his life. We have tried various medications. Multiple meltdowns in nearly any situation, even the most mundane,like getting dressed became war. After a trip to a psychiatrist and a change to a different class of drugs I am happy to report he is a new boy. he still has meltdowns and he still has bad days but his good moments outshine those and outnumber them. The tone of our house is changing. Its lighter now. We can breath a bit easier. Life is by no means perfect, but it feels so much more doable. All the children are back in school. They are enjoying their new teachers. I am not enjoying having to do spelling words every day and enforce reading time when they really just want to play. Three are in the middle school this year and enjoying that big change and making new friends. One is in the high school so I have three schools and three busses to deal with. That's going fine. So far we have not had very many bus issues. We got a new bus driver on the special ed bus. He seems nice enough, friendlier than the one we had at the beginning of the year. The driver we have had for two years on that bus retired this year. I have finished our Philly trips for a few months. I have put off even calling for the next appointment. I am so worn out and tired of traveling. I love to travel for fun but Philly trips are more stress than fun. They need to return for follow up, no big deals in the works at the moment. Next summer I sure would like to stay home. Last summer I was there with Sophie, This summer I was there with Ben. NEXT SUMMER I WANT TO BE HERE! Pat keeps sending me lovely cards and post cards. they sure are a special surprise that makes me smile when they arrive. Thanks Pat. Eric and I have been learning all we can about Aquaponics. He built a small system in the basement and we are growing lettuce there. It is a really neat process. We have been to visit a few other aquaponics systems owned by others. Its been educational for sure. Now if our Tilapia would just spawn! With doctor appointments, therapy appointments, phone calls, errands, bill paying, shopping, chicken food buying, chicken feeding, dinner cooking, dishes doing, laundry doing, and homework helping I am keeping very busy. Sometimes more than I want to be but I love most every minute of it. Yes, Pollyanna has her own new medication as well. and a new attitude. Every day I get up saying, its going to be a good day. it usually is. If I can find positives and not get upset with the kids, its a good day. Setting myself up to have a good day helps me to do that. The kids are all really doing great. Most of the issues we deal with now are just "kid issues" but we deal with it times 8-10 kids. That can get frustrating sometimes. We just remind ourselves that this is kid stuff. We took them all out to dinner last week at Chinese buffet. We had so much fun together. I love my family!! and I am loving being able to love them. You wouldn't think taking 10 kids out to dinner would be fun, but I can't wait to do it again. I don't find as much time to get on the computer and often post to facebook from my phone. I will try to update this blog more often. Life with FAS, Arthrogryposis, various medical issues can be so much work. but if I can record some of the fun stuff here, as well as the struggles we might encourage someone else. if not, its good to be able to speak your mind somewhere. This is my forum for that.

a busy summer

I have spent more time in Philly than home this summer. Sophie and I are getting ready to go there again in just a few more days. She is having an arm surgery. We will be there about a week. School starts September 3. I really enjoy summer vacation but I am at the point I look forward to school. The kids are at each others throats more often than not after all this togetherness. A few kids need to go back to routine. they are lost without it and try as I might I cant muster a routine in summer around here. Ben spent the summer in plaster going back to philly again and again to correct his club feet by serial casting. He is on his last cast and waiting for his AFO to be ready. He will also see hand doctor when he goes back again. 3 of our kids will head to middle school this year. 5 more will stay in elementary. 1 in high school and 1 in college. The kids had a great summer at summer camp and also at Uncle Bob and Jeannies. I think that was the highlight of their summer. They will be talking about it for years to come no doubt. Eric volunteered as camp counselor this year. Im sure there are tons of things I wanted to mention here but currently there is much carrying on and I cant think of what they were.

blessings in disguise

There is a song I heard on the radio that reminds me there is good in the trials. Even if you can't see them at that moment. Some days are hard. really hard. Some days you don't want to get out of bed. Or you dread going home at the end of the day. We pray for blessings, we pray for peace, Comfort for family, protection while we sleep I have to travel with my kids quite often. I don't have the luxury of having another pair of helping hands when I do. The other day I was struggling to get my carry on luggage as well as my disabled child all gathered into my arms in the 2.5 extra seconds they give us when we pre-board before the other passengers begin boarding. We pray for healing, for prosperity We pray for Your mighty hand to ease our suffering. I also need to close the wheelchair. Many times I do this all alone as other passengers begin boarding, passing me by, oblivious to my struggles, lost in their own world as I am reduced to tears trying to do it all, and quickly. And all the while, You hear each spoken need Yet love us way too much to give us lesser things But occasionally someone sees us. They offer a helping hand. I take it. I used to be too independent minded and strong to take help. Now if someone offers, I gladly accept. 'Cause what if your blessings come through rain drops? What if Your healing comes through tears? What if a thousand sleepless nights are what it takes to know You're near? What if trials of this life are Your mercies in disguise At home I deal with an explosive child. Getting along with the other children is difficult for him. He sees everything as an attack. If we help him he gets upset. If we don't help he gets upset. He is difficult to calm when he reaches his breaking point. We are often at a loss as to how to help him. We pray for wisdom, Your voice to hear We cry in anger when we cannot feel You near We doubt your goodness, we doubt your love As if every promise from Your word is not enough And all the while, You hear each desperate plea And long that we'd have faith to believe Sometimes days are difficult. sometimes everyone gets along. on the days where no one can find a single kind thing to say I will try to remind myself 'Cause what if your blessings come through rain drops What if Your healing comes through tears What if a thousand sleepless nights are what it takes to know You're near What if trials of this life are Your mercies in disguise Parenting special kids is isolating, it is all consuming, and to be honest many people just do not even understand what we do or even why we choose to do it. We do not have very many friends or people we can count on. But for these children we do it all. They deserve our best. no matter how lonely it gets. When friends betray us When darkness seems to win We know that pain reminds this heart That this is not, This is not our home It's not our home sometimes no one sleeps. this causes everyone to be cranky and have a short temper. This is the nature of the beast. That doesn't make it any easier running on only a couple hours sleep. I feel the wrath of their irritability and though I try not to, sometimes they feel the wrath of mine. 'Cause what if your blessings come through rain drops What if Your healing comes through tears What if a thousand sleepless nights are what it takes to know You're near Depression is common in parents of kids with special needs. the more kids with special needs the higher the risk of depression and divorce. Sometimes we argue with our spouses and cry ourselves to sleep wondering where we went wrong and what we ever did to deserve this life that is not what we planned for, not what we hoped for. We wonder if we can survive even one more tantrum, one more day of difficulty, one more minute of this life. What if my greatest disappointments or the aching of this life Is the revealing of a greater thirst this world can't satisfy What if trials of this life The rain, the storms, the hardest nights Are your mercies in disguise yes. life is hard raising kids. Life is even harder raising kids with special needs, harder still raising multiple kids with various special needs. Hard but not impossible. They will grow. Life will get easier in time. I can get through it. If I can remember to look for the silver linings, the blessings in disguise, I can get through it with a lot more grace, a lot more comfort, and a lot less pain and disappointment. Each of these children given to me, by birth, by adoption, are each a beautiful blessing, no matter how hard they are to care for on any given day.

something to celebrate

I know I post a lot of draggy posts airing all my grievances. but here are some fun things. Sophie walking. http://youtu.be/ObWU2UAd3Fs Last night at dinner Ethan exclaimed "where did you come from?" and Jaeger replied " well when a mommy and a daddy love each other..." we all cracked up laughing. One day last week Ethan was very nice. I was calling him Mr Niceypants. Usually he is Mr Grumpypants. Ethan lives on a high stress level all the time. High anxiety leads to high behaviors. So this day when he was adorable and sweet and kind was a welcome reprieve. Cody is graduating in two weeks. It seems like just yesterday we were fighting him to try and spell his spelling words in first grade. Chrysta is coming back soon. She is counting the days. I missed her. She will stay for the summer. Perhaps after that she will stay for the school year. Her brothers and sisters all missed her a lot. Ethan and Maia were the most affected by her leaving. They never knew a time without her. Ethan likes to talk to her on the phone and Maia sometimes calls her out of the blue when she is feeling out of sorts. Helps her feel like everything is ok. Twice in two days two of my kids who are invariably at each others throats played happily and nicely together. Maia and Jaeger were being silly with the lifejackets on and throwing the football back and forth while wearing life jackets. Then they decided that boxing would be fun. so they would hit each other only on the lifejacket, then they were chasing each other around laughing hysterically all the while. Sophie has been spending a lot of time on the back deck with Ben and Ethan. Ben is back in casts and in his wheelchair so he cant go far. they have played a lot on the back deck this year. More than last year or the year before. And Sophie is learning to stay outside instead of fussing because there's a bug or a bird. yes a bird. she was crying to come in because there was a crow in the yard. not on the deck but in the yard. was she afraid it would snap off her nose? I dont know. I made her stay out and play. she lived. and has been out there every day since. Andre is still Andre and will always be Andre. but he tries hard. I love that about him. He doesnt see any obstacles. Ben sees every single one and needs encouragement to keep going at things that are difficult. Not Andre. He thinks he is superman and thinks he can do anything and everything. He follows his Papa around helping with whatever chores he is doing. The greenhouse that protected my chickens all winter fell down in one of the last winter storms. It has since been resurrected and little plants are growing in it now. My husband the farmer enjoys his garden. Our other house has not yet sold but we get good feedback so we are hopeful it will sell. but since there is little we can do about it we try not to fret about it. no sense in wasting our energy worrying about something we have no control over. Soon it will be summer. we can relax our schedule and play. and spelling lessons will be a thing of the past. It takes a long time each night to go over spelling words with each kid! VERY VERY VERY HAPPY to have a break from that. If the sun would ever shine we could start eating on the deck. everyone loves that. we eat lunch out there most of the summer and as many dinners as we can squeese in out there as well. My chickens are doing well and give me between 4 and 12 eggs every day. Looking forward to the new chicks. I would love to add goats or cattle this year but I am not sure if we can swing that right now. I keep trying goat cheese and goat milk but a few of the kids have already decided they will not like it. Our minivan died a terribly painful and moneyhungry death. but being down to two cars, the 15 passenger and the prius, makes us think about every trip we make out. Gas is expensive. I am also enjoying being at home more because I CANT go anywhere. well I could but I dont want to drive the gas guzzler if I dont have to. and seems a waste to drive that monster with just ME in it! Someone who reads my blog sends me notes. and once sent me a flower arrangement. the mail really brightens my day. Sometimes that little moment of "someone thought of me" is just the needed lift I need to get through the days that are hard. No matter what happened in the morning, when its time to leave Ethan is always right there, in front of the line waiting for his kiss goodbye. and he always comes down to give me a goodnight kiss. Even if he had a raging rough day. even if he said this is the very worst day EVER! he still wants his kiss. I could sit here all day and write my list of gratitudes, but laundry and dishes await.

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!