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Saturday, December 31, 2011

New Years Eve

It is the day to reflect on all that the year has been and next year hopes to be. I have much to be grateful for. First and foremost, my faith. I have always been a believer of my faith and especially my God being first in my priorities. To me, He is all that I am and all I can be. My family is a very close second, but Mark, my husband always comes first. He is the most important person in my life. My children are of course extremely important, but maybe some of you will discover, I am truly "old fashioned." Without the solid base of my relationship to God, I would not have the amazing relationship with Mark, which is a covenant with God. This covenant with God and Mark keeps me strong and able to be the best I can as a wife, a mother and a person. I have many faults, I have made many mistakes that I wish I could take back and change. But maybe all that has happened was for a reason that is greater than me? My God will never forsake me, comes to mind as I write this. It is such a powerful statement because humans are weak. We make mistakes, we hurt each other with words and actions, but God, He is a constant. I only believe in a loving God, I'm not one to believe in a cruel, punishing God. I believe God helps Mark and I to be strong and to put each other above all others, but that we allow Him to be part of our relationship. Mark and I are the solid base our family stands on. With all this in mind, I am and will always be, the most grateful for Mark. I am constantly reminded of his love and care for me in the simplest ways, everyday. As I have said before, most nights as I fall asleep in his arms, I say a simple prayer of thanks to God, "Thank you for this man." I am a believer in destiny or fate and I believe we were meant to be together. I believe we were meant to live this journey together. This past year our partnership and teamwork as a family got others to see the vision we so desperately wanted for Teale. Many people outside of our immediate family were part of this culmination of years of advocating. The Universe seemed to hear us and all of you. 2011 will probably best be known for the year I felt like our life and Teale's future finally fell into place. There were many other great accomplishments this past year. Mark and I have remained strong in our love for each other, we were even able to make it stronger. I consider this an extraordinary accomplishment considering all the stress we often live with. We have continued to  built stronger relationships with our children, enjoying their uniqueness and journey as they discover their own gifts. This past year with Mark's Mom living with us we have learned much. There have been many challenges and it has been a tough to see Mom's decline but having her here brings Mark much comfort. I have seen my children learn life lessons I could not have taught them without this experience. They have grown to know their Nana better as a person. We have made many new friends and opened ourselves up to many opportunities this past year. I believe one of the strongest qualities my family has is our ability to care about others. Life is a journey and that journey is not always easy, but with God and Mark on my side, I am living it well. New Years Eve is a day to look back and a day to look forward. Today I am especially overjoyed with what I see in our future. Happy New Year everyone!

Tuesday, December 27, 2011

The Week Before Christmas, part 2

As I pull up to the school, there is much chaos, cars line the streets, a fire truck on a side road taking much space also. Parking is tough, especially since I hope to stay out of view, maybe even hide in or near my car. The activities start outside, a fire truck brings Santa to the school, with many Rochester City firefighters volunteering their time. This event is run by the Rochester City firefighters, heros in more ways than most people realize. They don't get paid to be here today and they take the time out of their very busy holiday schedules to bring this school much joy! Dressed in their "Blue" the firefighters all look great as they wait for the word from the school to "parade" in. This is the only part of the celebration I hope to catch, the parade as the firefighters and Santa surprise the kids. Walking up to the school, I spy a familiar firefighter, his children had attended Mark and my in home daycare years earlier. To me, this is one of those amazing connections life gives us. I had cared for his children and now he was here for my daughter. Already moved by the situation, I am so glad I chose to let everything else go to come. I decide to hide out near the playground, figuring it is far enough from where the kids will be that Teale won't notice me. I have my camcorder and camera to capture this moving event and share it with Mark. Unusual for Rochester, there is no snow on the ground, it is cold, but nothing like our usual. As I wait for all the kids to come out of the school, more and more firefighters arrive. I wonder what am I about to witness? No other parents are in sight, making me wary of my decision to come and more determined to not be seen. The adults in the program line up at the beginning of the parade. They have flags waving and a drummer ready to strum out a marching beat. I know many of the adults, as I have been volunteering in the program much of the fall. They wave to me and yell Merry Christmas, warming my heart. The school is for children with special needs, but there is a whole adult work program in the building also. Volunteering with the adults in the work program is a highlight of my week, every week. I love seeing the interactions between all of them, which also gives me much peace about Teale's future. She can also choose to stay in the building as an adult, working one of the many jobs offered right here, where I know she is safe from the rest of the world. The adults and I have a special bond, they seem to enjoy my company and I know I enjoy theirs. As they get into formation, the parade is about to begin. I see Teale with her classmates and think her aid sees me, but hope she doesn't point me out. The fire truck gets into position, Santa, Mrs Claus and Rudolph have climbed into to the top. The many fire fighters are ready to march in, a sea of blue uniforms. I stand there fighting tears, grateful for Teale being in this amazing school and feeling the outpouring of love. Capturing it on film as best I can to share with Mark. I know I will not be able to share all the many feelings I am having as I watch the kids faces when Santa and his helpers arrive at their school.  (to be continued)

The Week Before Christmas

As I walked away from the parent meeting, I saw the principal whispering to the parent group chair. The chair then quickly caught up to me and asked if I was coming to the school's Christmas party on Friday? "I didn't think the parents were invited?" was my response. They aren't, but parents come and no one says a thing. Being new to the school, stepping on toes is the last thing I want to do, so I ask more questions. She shares with me that the principal asked her to tell me to come. With that in mind, I decide bending the rules is in order and start to mull over all the concerns and details, if I pull this off. With only five days left before Christmas Eve, taking an unplanned morning at Teale's school may be tough. If I go, she will want to come home with me, which creates more problems and less time to prepare. I have the week though and I know I can try to get everything done by Friday. I decide if I hide from Teale on Friday, that will solve much. With me there she may act up, at school her behavior is very appropriate, very calm and very quiet. Although I wish my presence would add a happy medium, I know the risks are too great. With me, she may refuse to do what is expected. Hoping if I can stay out of her view, I will get a glimpse of the real "school Teale," with her friends. The week turns out to be tougher than I hope though, a Christmas card picture mess up by the store has me running back to the store several times. The cards not getting mailed as early as I had hoped and I'm burning both ends to get things done. I plug through though, knowing Friday may be much of a loss, if I go to the Christmas party. Another obstacle hits, scheduled for a repeat endoscopy, to recheck my Celiac Disease and other issues, I go into a vicious migraine and lose all of Wednesday. Thursday I have a classic migraine hangover, only those who get migraines can truly understand. It isn't as debilitating as the actual migraine, but you feel like you were hit by a truck and there is a fog surrounding you. Nothing is very clear and I move at a much slower pace. The next day is the party, will I make it, can I really "afford" the time? Luckily I have help on Thursday, Mark is home, so he shops for the last of the gifts. I also had hired a college girl from our church. She started out as a Mother's helper, occupying Teale while I got stuff done at home. We built her relationship with Teale slowly and then used her as a night sitter, so Mark and I could get out together. She has slowly become part of our family, I count on her much and she seems to enjoy being a part of our life. While I was out cold with my migraine, she was here, so Mark could go to work. She did some light housework and just made sure I was ok. I had asked her if she could come on Thursday also, since I lost Wednesday. Her college schedule being light, she helped me with wrapping on Thursday. By Friday morning, I was a bit stir crazy, I had been in the same comfy clothes for both Wednesday and Thursday. The effects of the migraine were finally really gone. I was going to Teale's school because I knew I would regret it if I didn't. Everything else that needed doing would somehow get done. (to be continued)

Monday, December 26, 2011

Parent Meeting

I went to the parent meeting, tired with much to do. It was Christmas week and I needed the time to shop, clean, wrap, but the meeting was important to me. I was not only interested in the topic, but I also want to build relationships with other parents at Teale's new school. The speaker was a friend, so that helped push me, knowing it would be a good subject and I would get to see her. It would turn out to be all these things and more. After the informative meeting that addressed many of my million questions about future care for Teale, some of the people hung out chatting. Teale's new to the small private school that we worked endlessly for four years to get her into. I'm anxious to fit in, after years of floundering in schools where neither Teale nor I felt connected. So even though I planned on going Christmas shopping after the meeting and it was already late, I mingled. I introduced myself to other parents and asked about their children, sincerely interested in their journey. Many of the parents had had their children at School of the Holy Childhood from the beginning of their education. When they heard we were new and how hard we had fought to get our daughter here, they often looked shocked. I get the impression the families know SHC is a special place, but maybe their journey was a bit easier than ours? Our appreciation of being there may be greater than families who didn't have the challenges we did to get Teale placed there. With my family, the journey was more difficult because the school district we live in had never supported a child's placement there. They had never financially rose up and paid for this very unique private school to take one of "their" special need's children out of the district. Our school district felt they were doing Teale justice and that she didn't "need" a specialized school. Mark and I felt differently, so even after being rejected three years in a row, we applied a fourth year. As I stood in the mists of these parents, I finally felt home. We are finally in our forever school, Teale can grow up here, supported by peers and adults who love her just the way she is. It is an amazing thing to me, just knowing we no longer have to fight. The principal, the assistant principal and the director of services were all at the meeting. All three of these people were pivotal in our fight to get Teale into SHC. They had their doubts about her fitting in, they were not sure their small school could handle all her needs. Teale is not the schools "typical" kid. Even in the special needs circuit, we are different, Teale's needs and "issues" are many, both physically and mentally. The school has a reputation around town as a school for children diagnosed with Downs syndrome. There have been many other diagnosis of children there, but Teale's level of needs scared them. Her mental diagnosis being the most concerning. The school tends to pick the children in the community who do not have behavior issues. This is something Teale has very little of in a school setting, but convincing the intake committee of this was one of our biggest challenges when advocating for this placement. After the meeting the principal seeks me out and says "She is doing very well here you know." I did know, we see the changes. Teale has a calmness to her, a feeling of belonging we have not seen in many, many years. The principal gushes about how much she loves having Teale in the school and about how much she loves Teale. I find I can't resist my next question to her, "Can you tell me, just one time and then I will never ask again, Mark and you were right." She doesn't hesitate, immediately she hugs me and says, "You were right. Teale belongs here." With that, I finally feel justified, I finally let down my guard, knowing Teale "belongs" is all I have ever wanted to hear.

Sunday, December 18, 2011

Our Christmas Letter, written by Mark

Seasons Greetings,
Beau is now 16 and a junior at Pittsford Mendon High School.  He has been dating Mai, a friend he met at school, for the last 8 months.  He continues to play the saxophone and soccer and is going through the process of getting his driver’s license.  He’s actually a good driver so there will be no wise cracks about warning everyone to stay off the road.
Teale just turned 13 and she passed Ellie in both height and weight last spring. She loves Justin Bieber and talks of him coming to our house to sing and play. In August she was diagnosed with Hashimoto’s disease, a thyroid condition, so we have been dealing with regulating that. In July she began attending the School of the Holy Childhood, a small private school for children with various special ed needs. As most of you already know, we are thrilled to have her there.
Gwenn is in 3rd grade and at 8 years old she sometimes drives her Mom and Dad crazy, but most often she is a true blessing.  Gwenn enjoys singing and experimenting on the saxophone, piano and recorder.  If you are lucky, perhaps you will get to hear her beautiful voice; she is quite hesitant to sing out when she thinks anyone other than her immediate family is listening.
Ellie began a blog this year as a means to release some stress.  Go to wearegodsentertainment.blogspot.com if you’d like to check it out.  She figures that she has now been married more than half her life after 22 years of marriage.  Her busy life includes many volunteer activities and, of course, managing a very active household.
I continue working at Child Care Council and playing the saxophone.  Wanting to avoid the Cats in the Cradle syndrome, I look to spend quality time with all the kids and Ellie. Beau and I went to Pittsburgh in June to see his Red Sox take on my Pirates, I visit in Teale’s classroom, and it is not unusual to find Gwenn and I enjoying a game of catch or working out a song on some instrument or another. 
And, the family matriarch, my mother, Ellie Bradley, Sr., continues to live with us. Ellie Jr. does a wonderful job of managing Mom’s needs with the help of many friends and family.  Having her here is both a challenge and a blessing, as her increasing needs require our attention but having that direct and immediate knowledge of her well being is comforting.
We hope that you enjoy the holiday season and that our paths cross so we can catch up with each other in coming year.

Love, Mark, Ellie, Beau, Teale and Gwenn

Saturday, December 17, 2011

Cookies & Christmas

Even though it would be a tradition Gwenn, my youngest would love, I don't bake for Christmas. I'm not a fan of baking, it's precise and messy. I'm ADD and following recipes is not my forte. Besides that, I am Celiac and baking gluten free cookies is tricky. I have virtually stopped baking since being diagnosed Celiac. I'm a decent cook, but that's because I make up my own recipes. Every year I have pulled off gingerbread houses, but only because it has been the activity at Teale's party. This year we didn't do gingerbread houses for Teale's birthday, so I decided I would take some time and make cookies with Gwenn. It started out fine, but I had too many ideas in my head and we got off track.  We started the dough for the gingerbread houses, but it turned out we were missing an ingredient. While Mark was out, he could pick it up, so we moved onto a different recipe. Making many spritz cookies, we ate almost as many as we made! Then Mark got home with the molasses for the gingerbread houses and we went back to that. Somehow four or five hours later, I'm burnt out, Gwenn seems to be also and we abandon the many other cookie recipes we had planned on trying. So maybe I failed, the tradition I planned on starting today, ending with one plate of the same kind of cookies. Oh well, we spent a lot of time together and there is always tomorrow. We can't all be efficient, amazing bakers, who create beautiful plates of Christmas cookies. We can't all have our shopping done and wrapping finished before Christmas eve. Mark and I are often behind, but somehow we always pull it together in the end. With one week to go, may you find the real joy in the season, spending time with your loved ones!

Wednesday, December 14, 2011

The Picture

Well, as usual we left the Christmas picture until the last minute! Teale had her 13th Birthday last Friday. We were stressed for that and needed every moment to prepare. Then Saturday our family schedules didn't mesh well. All three kids were home a short time, but Teale had a cold and was crabby, so we postponed again. Sunday though, it turned out was worse, less time together, Teale's nose looked like Rudolf's and Gwenn was exhausted from a sleepover the night before. Monday was more of the same, Tuesday would have to work, as I needed to get the pictures printed! We went with simple clothes and colors on the kids, to me this picture is about their faces. I hope to capture joy, the spirit of the season and a taste of our family to share. I did capture a taste of my kids, but it was awful. Beau looks crabby, probably because he was. Teale is half smiling, but her sparkle is missing. Gwenn is either trying too hard or not enough, I am unclear about that one. Mark and I had trouble with timing Teale's smile with the camera firing. I had trouble getting the camera to a setting I liked. Neither of us were thrilled with the attitudes we were getting from our typical kids. Teale is usually the challenge in the Christmas picture, but we have learned how to work around her. The instructions for our typical kids are simple. For years now we have done the picture at home, Beau & Gwenn keep a smile, Mark gets Teale to smile and I click endlessly. It has worked well in the past, but this year, so far, we failed. Some say print the one we have, I will, but only for my memories. For the rest of you, I plan on trying again, no I mean, I plan on getting a nice picture taken! After all, the behind the scenes of our Christmas picture is part of the process and the memories of the tradition. There is the year Teale was born, but had not been expected, so only a picture of Beau was sent. There are pictures of Teale blown up on steroids that illicit painful memories. There was the last time we got an amazing professional picture of Teale and Beau. Right after it was taken, Teale slapped Beau across the face and he cried. The addition of Gwenn was tricky, but even from the beginning, she shined! In one of my favorites, Mark & I suggested to Beau and Gwenn to tickle Teale, as she falls over laughing, I capture the moment. There are years it has gone quickly and smoothly, Mark and I are a good team. But then again, there are years it has been down right painful. Either way, it never shows in the finished product, what we have sent has always been something both Mark and I are happy with and proud of. I frame the picture for our keepsake every year and it gets tucked away with all the previous years when Christmas is done and all our decorations are packed away. Bringing out the growing collection of framed pictures each year reminds me how far we have come. They are part of our family's tradition and to me, it is probably the most precious tradition. Looking over all the beautiful pictures from previous years, memories flood my mind, not only of that photo session, but of my life with Mark. I imagine next year, I will look back on this year with the story of the picture that almost wasn't.

The Christmas Letter

Every year Mark or I write a letter. There is no rhyme or reason as to who writes it. It may depend on time constraints of the year, if it has been a tough or easier year, if I'm feeling "up" to it or not. Basically, like much in our marriage, Mark will give me the option first. Some years I have certain things in mind to share and want to write it, other years it is just too daunting. We have had many Falls that have turned into Winters that have been painful. Sharing that pain or writing a simple update and excluding how awful things have been is Mark's specialty. Besides that, Mark is much better grammatically than I am. (that sentence alone, is a fine example!) His spelling and sentence structure are by the book. He punctuates perfectly and never writes the classic Ellie run on sentences. I write solely with heart, if you are looking for perfect written English, please stop reading right here! When I write the Christmas letter and Mark "proofreads" it, he inevitably changes much. My style is not his and quite frankly, I think I drive him nuts! By the time he has "fixed" all my errors, the letter often looks like he wrote it. I often feel like he took out "my heart." Try as I might, this hurts my feelings to some extent. I feel like he may think I am dumb or wonder, how I could not know that rule or correct spelling? We are different people and it comes across in our writing style. Yes, we share a life, but we were raised differently, we learn differently and we share differently. I think sometimes I forget this, my feelings get hurt when in no way is Mark trying to hurt me. Since beginning to blog, I have become more at ease with my style of writing. I know if my teachers were to read my blog, they might be disappointed that I didn't grasp the rules well. I realize there are probably countless errors in my posts, ones that drive some of you absolutely nuts! I stopped asking Mark to proofread my blog after the very first post because I came to the conclusion that although my style is somewhat different, it truly reflects who I am. So this year if you get our Christmas letter, I did not write it. I opted out this year and although I am sure to put in my two cents worth, Mark has a beautiful way of writing that I know you will enjoy! Merry Christmas!!!

Wednesday, December 7, 2011

You Have Got to Have Friends

When we knew Teale finally made it into The School of the Holy Childhood, we were so excited! We had heard, unlike the other programs she had been in, that at SHC, friendships are made. Teale hasn't had a "real girlfriend or a true close friend" ever. She has had typical kids who care about her. She has had families who have embraced her. She has had adults who care deeply and give us breaks by being a companion for Teale. Teale has been loved, don't get me wrong! She sucks in more people than anyone I have ever met. She brings us the gift of friends. More than anything else, Teale connects Mark and I to many, many people. The diversity of people I have met because of her is astonishing. But sadly, Mark and I have struggled to do the same for her. We have not found her one close peer, not one kid who we could call for a play date on a regular basis. It has been a heartache for us like nothing else. To watch Teale alone, to see her entertain herself day after day. She sees her siblings invited to parties, to sleepovers, kids come here for them. The doorbell rings, but never is it a peer for Teale. The phone rings, but not once has anyone ever said, "Is Teale home?" Until today, today the mother who called said, "Hi, this is....my daughter wants to talk to Teale." I hesitated, after all, Teale is not great on the phone, her hearing loss makes phone conversations difficult. Teale benefits from seeing a person and their facial expressions when talking to them. She picks up so much more language from faces and from speech reading than a hearing person. Besides that her ability to stay with a conversation on the phone is poor. As I said, I hesitated, but then I explained and said, "We can give it a try." Thank goodness I did! Teale was so happy to hear her friend's voice. Sure the conversation wasn't fluid, but it was FANTASTIC! The laughter, the smiles, the excitement was one of the most special things I have ever witnessed. The "conversation" went on for about five or ten minutes and I have been on cloud nine since. You see, Teale's new school has privacy policies also, as we experienced in other schools. We are not able to get a phone list from the school, which makes it tough to connect my "special" daughter to others. She is not going to give out her phone number or get a friends number. Teale isn't capable of having a conversation with her friends like a typical almost 13 year old to arrange a get together. This frustration has followed us for the last two years, we cannot just call a parent of a child in Teale's class and arrange a play date for her. So, for open house I made a flier up with Teale's picture, her interests and her phone number. No one ever said I couldn't give out my phone number! But open house was not well attended by her class, therefore not many of my fliers made it into the correct hands. Teale's Birthday is Friday and we are having a pizza lunch at her school for her. This way all the kids will be there. Many travel far for school and we didn't think at this time of year they would travel to us for a party. I wanted the families to know we were celebrating Teale's Birthday this way and why. More importantly, I wanted the families to know that we are a family who wants to connect. So our flier and a sheet explaining her birthday lunch went home with each child today. We want Teale to have social opportunities and we are willing to do just about anything to give her this. Shortly after Teale got home from school, her girlfriend from her class called. To me it was a small miracle. It was a sign of hope that maybe we finally will give Teale the gift she has given us over and over again. I guess we aren't the only family trying to make connections for our daughter. I just know this is the start of something very special.

Friday, December 2, 2011

Broken

This past week there has been much broken at my house.
Our keypad had a drink, thanks to Teale and stopped working. That sent us into the world of looking for a new keyboard and let me tell you, all keyboards are not created equal. We had a beautiful flat, quiet keyboard, that came with our Mac. I never appreciated it, until I got this bulky, loud one. How I hate the clicking of me slowly typing! And it has been the biggest cause of my not blogging, which may be the reason for the third broken thing on this blog. Many stories have run through my head recently, but because I hate this keyboard I have avoided blogging. Sooner or later I may need to break down & get a "good one."
 Gwenn was also "broken" this past week. The poor girl woke up on Thanksgiving morning barking like a seal. She sounded like she had croup to me and there was no way we could expose the family to her illness. So since Thanksgiving is celebrated with Mark's family, it was decided he would go with Teale and Beau. Gwenn reluctantly agreed that she was too sick, we would stay home alone together. Mark sweetly hit the local grocery with Teale to get us a turkey before he left. The trip to Mark's sisters is over an hour away. With family from Massachusetts there, he would be gone most of the day until late. I decided I would try to make Gwenn & my time alone special. I made a bunch of Thanksgiving favorites and then Gwennie and I cuddled up on the couch while it all cooked. She chose the Narnia movie to watch, which we somehow owned, but had not seen. I read all the books to Beau when he was young, but as is often the case with a third child, not to Gwenn. She would enjoy things like reading a series together, but somehow our life is so much more hurried these days. She misses out on many of the things we did with Beau, Teale takes much of our time. As a I mourn such things while sitting with her, I hope she knows how loved she is. I will make the most of our Thanksgiving, a nice dinner together in a warm, cozy, quiet house. I let Gwenn choose the china, my good china will be used for our special Thanksgiving. That is something I would never do with Teale. Her milk I pour into a wine glass and we say a Thanksgiving prayer. When the night gets long, she expresses missing her family, fighting her tired, sick body to stay awake and wait for their return. I worry about how sad she must feel missing out on the traditional day, but then she tells me "We probably had more fun." As I go to bed that night I find a note from her, it simply says "I am thankful for you! Love, Gwenn" All I can think is "Ditto my sweet girl."
  My heart has been broken lately, not sure how to describe it, but the December blahs have hit me. I find December tough for many reasons. Teale was born on December 9th and I have anniversary angst every year. It is a little easier some years, but for no particular reason other years are more difficult. As she turns into a teen this year, I mourn what she doesn't live. The independence she should be gaining, I have come to realize she will probably never have. This year is much better than other years in one way because she is finally in the right school placement. At least that worry is lessoned, it is the perfect place for my special daughter. I finally feel like she and our family have a community, a place to grow old in. Today Mark and I made the decision to not tell Teale that she was going to respite straight from school. That added to my sadness, but our intent was to help Teale by not causing her extra anxiety. She worries about going to respite, especially when we will come for her. But she does well when she is there. Her anxiety causes meltdowns and other behaviors that are difficult as the day approaches for respite. That is why we decided to let school tell her with only a couple hours before the respite bus would come to get her. It all went well and she is at respite now, but the anxiety and guilt I had all day added to my blahs. We have done this many ways over the years, prepping her weeks in advance, days in advance or just hours before respite. I am never really sure we are doing it right or wrong, but we keep on trying. Mark and I have had many situations with Teale we never had with our other kids or in our many years of running in home daycare. We fly by the seat of our pants, often changing the rules that we believed in. I NEVER would have done what we did today to a typical kid, wouldn't that create mistrust? Won't she wonder if she is going to respite every time she gets on the school bus? Won't she be scared to leave us, thinking we may "surprise" her and send her to respite? I don't know the answers of course, I just know weeks or days of worry were tough on Teale and our family, so we changed the game again.
 The broken things in my life will get fixed, they heal, as Gwenn has. I will get used to this keyboard or buy another one. I know my heart won't always ache like it did today. The pain will pass, it always does. Sometimes I just think things have to break for us to appreciate them more...