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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...

Saturday, November 26, 2011

A Christmas Tradition

Every year I make a stencil out of paper to look like a very large boot. On Christmas night after our kids are asleep and all the Santa work is done, I make boot prints leading out of the fireplace. I put the boot stencil on the ground and sprinkle baking soda through a sieve lightly. Lifting up the stencil, I add another boot in a stepping pattern from the fireplace to the Christmas tree. As the prints get farther from the fireplace, I lighten the look of the "fireplace ash" until it is barely there. After I have all the boot prints set, I also add a few pieces of the actual coal ash from our fireplace to the baking soda prints to give a "real" look. This tradition was started the year my second child was born. Teale was in the NICU recovering from her traumatic birth and gastroschisis repair after being born on December 9th, 1998. I was looking for a little extra "magic" as the month had been so difficult on our family. We practically lived at the NiCU that year. Our son, Beau, had turned three in August, 1998. Although I was excited for Christmas with him, I knew it would be tough to wake up Christmas morning without my Teale at home also. Somehow this year seemed like the perfect magical year with Beau. He was old enough to really understand the traditions, the facts around Christmas and the magic. He was so excited to "catch" Santa and was sure he would. I looked forward to seeing his face in the morning when he realized he had missed the "Big Guy." We continue this tradition today and as each child becomes more savvy, I wonder what they think. But the truth is, Teale will probably always believe. Years after her little sister, Gwenn, has discovered the truth, Teale will be talking about Santa coming. So every Christmas eve, after all the gifts are set under the tree and the stockings are filled, I make the boot prints and go to bed dreaming of the magic of the season.

Sunday, November 13, 2011

Day Date, part five

As we were leaving the vineyard, I remember I have our camera and for once I want pictures of Mark and I together. I often take pictures, but I take them, so there are hundreds, no maybe thousands of pictures with Mark in them. There are many pictures with our children and Mark. There are ones of our trips before children, scenic settings and again, many of Mark. There are gigs he played, pictures of musicians and Mark. Pictures where he is on stage singing or blowing his saxophone. There are some but very few pictures of Mark and I together, but on this day date, I am determined to get a couple. A camper pulls up and several people get out, obviously all of them a bit intoxicated. They all enter the building quickly except the driver and one woman. The driver seemed sober and walked into the building slightly ahead of the last passenger. The woman lingered, taking pictures of the building and the scenery. She appeared to be the only option I had to take a couple pictures of Mark and I. As she agreed and I handed off my camera, my nerves were a bit high. This woman had apparently visited more than just one vineyard. I was handing her my camera that I really couldn't afford to replace if she dropped it. Well, she took the pictures and she didn't drop the camera, but the stress on my face in the pictures is apparent. After getting my camera back, we get in the car and decide our next destination. Bully Hill's restaurant was recommended when we asked about local places to have lunch, so we decided to go there. The ride was quick between the two vineyards, but we wouldn't realize until we got home that it didn't include the same road where we saw the mangy cat.  Now we will never know if that cat has a home or not. I still think about him on occasion, wondering if he is wandering those country hills alone. My Mom instilled this love of animals in me, we could bring home any stray and she would let us keep it. My siblings and I had many animals; snakes, turtles, cats, dogs, rabbits, chickens, even an orphaned baby raccoon. My Mom had a soft spot for vulnerable animals, I have the same and from what I can tell, my kids do too. But back to the date, the time is ticking and based on the drive up, we calculate that to be home for Teale's bus, we must leave this area by 1:30pm at the latest. Beau is obviously fine getting home alone, even Gwenn can get herself into the house. She knows how to call my cell if I am not there and besides Nana is almost always home. But Teale, we have to go to her bus to get her off, she can't just walk up the driveway alone. I have even been called by the bus garage when I have had sitters at our house meeting her bus. Her drivers are very protective of her and won't leave her in just anyone's hands. Beau could get her if needed, but considering it is a Friday and his soccer team lost in sectionals the night before, I had my doubts he planned on going home straight from school. His friends and he would probably get together. After all, soccer had been all consuming for months, so this would be one of his first free afternoons in a very long time. We had about another hour and a half, lunch would mostly consume the last of our "free time." We walk into the restaurant, the room tasteful and simple, all warm wood and huge windows overlooking the fall colored hills. The host tells me they can accommodate my Celiac Disease, a bigger plus at any restaurant, no matter how nice the setting. We are seated and both order diet sodas. The wine tasting was quite enough for me and I am still feeling the effects. Looking around I notice we are the only ones without a wine or beer glass. Often at a restaurant, I try to figure out couples around us. I find it interesting to contemplate if the couples are happy, married, newly dating or just hanging on. You can tell a lot about a couple by their body language, whether they are talking or staring into space avoiding each other's eyes. Do they laugh too easily or just "enough?" As Mark reaches for my hand across the table, I wonder if anyone is analyzing us? As we laugh and talk easily, do they think we are newly dating or maybe even a couple having an affair? I look into Mark's green eyes, once again thinking how blessed I am to have a husband who I truly enjoy being with. I'm thankful I conjured up the courage to invite him on that first date many years ago and thankful that he accepted. And at that moment, I am especially thankful that Mark brought a bottle of Dr Konstantine Frank wine on that first date. As that bottle of wine gave us many memories and an excuse for this beautiful day date together.

Thursday, November 10, 2011

Day Date, part four

As we drive through towns without stores or gas stations I realize how thirsty I am. There is nowhere to stop but we know of a small grocery in Naples we have gone to a few times. We will be driving through there on our way and although there is much to do in Naples, our only stop will be the grocery store. As we walk around the store, we grab a few things we need or want. Because I am Celiac, I am always on the look out for new gluten free items. It is funny, the small town stores often carry items I have never seen. Mark and I both scan their GF section, his support with my diagnosis of Celiac has been incredible. It is not always easy to find a quick bite to eat with me, I can't just get a burger or a piece of pizza. At times, it has to be frustrating, after all, he didn't marry me as a Celiac, I wasn't diagnosed until I was 39 years old. But Mark rolls with it, helping to keep me on the diet with his support and sometimes also his protective nature. He will ask questions at restaurants or gatherings, as sometimes I back down with the lack of understanding. There have been many times I have felt like people may think it is an attention getting diagnosis, not a real one. Actually, I hate the extra attention it brings to me in a restaurant or at a party. People trying to work their foods around my need for gluten free often causes me angst. Many times I just don't eat and try to go unnoticed. Parties are the toughest, even if something is GF, a cracker may have been dipped in it, which causes cross contamination. It may sound like I am being neurotic, but if you understand the disease, you get this. I react to even the smallest amount of gluten, physically I may get sick, but it is the unknown that gluten does to my body, that really scares me. Every time a Celiac has gluten, it creates their villi in their small intestine to flatten. The flat villi do not absorb nutrition and so foods go through you "quickly." The healing process after I have accidently had gluten takes about a month. A month of nutrition not being absorbed correctly and the other unknowns this can cause, scare me into following the diet strictly. There are many studies because Celiac Disease is an autoimmune disease, that indicate we are more likely to get certain aliments and cancers if not following the diet. I think this is what drives both Mark and I, our family needs me, so I do my best to stay gluten free. Mark does his best at protecting me from uncomfortable situations and especially from doubters. I grab an apple at the grocery store, fruits are always safe and my favorite, Honey Crisp, is in season right now. We get back in the car and continue toward our destination, only about another half hour to go. As the roads become winding and the houses fewer again, I wonder how people ever find this place without a GPS. We are out there, for sure, the country roads twisting as NRBQ and Skeeter Davis play softly in the background. Mark introduced me to NRBQ when we first started dating, an underground band that never really made it big, but has a good following. Their music is fun, upbeat and happy, it is a welcome change from our kids choices in music! As we drive down one of the dirt roads we spot an orange, mangy looking cat on the side. Mark knows I am a sucker for such situations and immediately says "If it is there on the way back, we'll stop." I make him promise, knowing he means what he says. As we approach our destination, it is all I hoped.  It is a gorgeous setting overlooking the lake and the fall colored hills. The romantic in me is just thrilled! Walking into the building we look around and then see the wine tasting room. A young woman with another couple in front of her asks us if we want to do a tasting. It was much fun, as we talked with the other couple and our host. Many of the wines were delicious, some were not my taste. It was interesting what Mark and I had in common and what we did not. We tried several varieties of whites only, as the other couple did not want to try reds and I can get migraines from drinking reds. The host was very generous and knowledgeable, giving us much history of the vineyard and the Frank family. It was to me like marking off a bucket list item. We were actually at the place that we have celebrated with every December 17th since that first one in 1988. Mark could have brought a wine from California, Germany, anywhere that first date. But that he brought one from a local vineyard and it took us almost 23 years to finally visit it, made it all the more special.

Wednesday, November 9, 2011

Day Date, part three

The drive is long, one hour and a half at least, something we would dread with Teale in the car. A long drive alone though is a welcome treat. We can talk without interruption, relax and I even grab the magazines that I never get to look at, for the ride. Teale likes to blast Justin Bieber or Camp Rock on the car stereo. Whenever she is in the car, she will push repeat the whole time if she is "stuck" on a song. So Mark and I have heard some songs repeatedly, literally hundreds of times. We are both very tolerant of such things with Teale, but sometimes I try to imagine how other parents might deal with this, if they could deal with it? It can get to me, the same song over and over again and very loud! If I touch the volume to take a cell call, it can turn into a battle, so generally I just survive the car trips with Teale these days, glad when we are at our destination. My point is, we never get to listen to music we enjoy anymore. Mark is a musician, he has been his whole life to one degree or another. He has strong musical tastes but over the years of being a Dad, he has rarely been able to enjoy listening to those favored artist of his. As we were leaving our house, I thought to say, grab some CD's. I was thrilled to have Mark be back in control of the music, something I know he misses and so do I. The drive would be at least half the fun on this beautiful fall day with good music and a chance to catch up with each other. We take the scenic route, driving the country roads and talking about memories of our lives. Sometimes we still find out surprising things about our childhoods. Growing up in the same small town, often our lives paralleled each other, even though we didn't officially meet until we were in our twenties. (to read our story of meeting each otherhttp://wearegodsentertainment.blogspot.com/2011/07/mark.html ) Like there was a local restaurant owner not far from our home town that owned a lion, my family used to visit the lion just for the fun of it. As we drove past the remains of the restaurant, Mark remembers going there for dinner once, but surprisingly to me, only once. As a child my older siblings would buzz me out there just for something to do, maybe getting a soda and french fries at the restaurant, maybe just looking at the lion. It is funny how Mark and I had many of the same small town experiences and then other things I am surprised at that we didn't share. The drive is beautiful, the hills, although the fall leaves are mostly past peek, are still a sight to see. I am not a huge fan of fall, but that is the half empty glass part of me, fall means winter is fast approaching. Fall is a favorite season of many in Upstate New York, but spring is my favorite, with the promise of summer around the corner. I can't deny on this gorgeous fall day though that fall is an amazing time of year, the trees are vibrant with many colors rolling over the hills and the sun is shinning brightly. It is a perfect day for a day date and as I sit next to Mark, I feel blessed to have this time. We drive past the ski hill that many of our friends will soon be on as the cold winter is fast approaching. Neither of us are skiers, mostly because we both grew up with Mom's who struggled financially to keep our families afloat. Skiing was for those kids who had more money than our families did. Mark's Dad died suddenly when he was just two years old and as I said earlier, my parents separated and then divorced. Both of us grew up in a fairly affluent town, but neither of our families were in that higher tax bracket. I remember saying to Mark once that "I knew not to ask to go to ski club." and he said he felt the same way. I often think our growing up so similarly in the same town is a big part of what bonds us. I always yearned to ski, but the cost prevented that. Mark had the same desire and also wished to play ice hockey, a sport that costs much money also. We talk about "maybe someday" as we pass the hill. One of the values we share though is that always getting what you want, does not build the same strength and character in a person. If life had been handed to us easily as kids, wouldn't living with the many struggles and loses we experience now be so much more difficult? Might we have given up and walked away? I often wonder if God was preparing Mark and I to be Teale's parents. Our strength and loyalty has helped us persevere. Sure there are times both of us dream of running, but we would never actually do it. That's what makes day dates so important and special to both of us, it is the escape we need, without hurting anyone we are responsible for. As we pass one of the great lakes, we talk about memories of our times there, both together and before we met. Then we reach a small town that we have visited several times, we want to stop and go to the glen that we have hiked, but time restraints prevent us. The buses will bring the girls home and we must be there for their arrival. We are determined this time to get to our destination of Dr Franks Vineyard. We decide, if on the way home there is time, we'll stop. (to be continued)

Tuesday, November 8, 2011

Day Date, part two

So after taking care of rescheduling, we start talking about what to do with our newly found free day. I have always wanted to visit a local vineyard with Mark, but it wasn't just any local vineyard. This vineyard had significant meaning to us. On our first date, December 17th, 1988, Mark came to my apartment for dinner, bringing a bottle of wine. It was supposed to be a double date, a dinner party, but the other couple was running late. So it was just Mark and I and the bottle of wine he brought, the other couple never saw a glass of it. It was a very nice Riesling from a local vineyard, Dr Konstantin Frank is located in the Finger Lakes. The vineyard is less than two hours from our home and has been on our "bucket list" for many years now. Lately it has come up in conversation as a place we keep meaning to go to, but have not. So with that idea, we started researching the drive and discussing the other stops we could make along the way. I joked that after all, this is the place "I blame for our marriage." Our first date sealed our fate, our conversation fluid, (whose wouldn't be after a bottle of wine?) we hit it off well and were engaged less than two months later on Valentine's Day. But Markie quickly corrects me, saying he doesn't "blame" Dr Frank, he "Gives credit to him for our marriage!" Comments like this are common from Mark, he is sweet and corny all rolled up into one. Often the kids and I laugh at his icky sweet comments, but truth be told, we love his corny sweetness. It makes us roll our eyes, exclaiming "I can't believe he just said that!" Our older nieces and nephews take much pleasure in teasing Mark also. Mark is the source of many jokes among them, I can hear my nieces say things like "You know how Mark is? You won't believe what he said now ..." They are quick to laugh at him, but every one of them at some point has said to me, "I hope I find a Markie." Mark is truly an endearing man, his corny jokes and all. So as I roll my eyes at his sweet comment, I too thank God he still enjoys being married to me. Our life can be so stressful, a tiny part of me worries that someday Mark may just walk away. My father basically did that, he walked away. Of course there is much more to that story, but as a young child, that is what it felt like, he was sick of us and walked. My insecurity around that is still very evident at times. Every time a marriage of someone close to us breaks up, I become very clingy. Mark has taken this all in stride really well. He knows it will pass, but for days, weeks or even longer, depending on the situation, I need a little more TLC and reassurance we are ok. I may ask him repeatedly if he loves me and he is good at just helping me ride those feelings the way I need to. So as we decide our day date, thoughts of that first date, our fate in meeting and all we have lived through, floats through my head. There are so many memories at this point, we have begun to lose some of them. Recently we were debating whether we had gone to a restaurant together in Letchworth State Park. I was pretty sure we had, but the memory for both of us was vague and Mark didn't think we had. We discussed it much, finally deciding that maybe we had gone there on an anniversary? It makes life interesting, our discussions about whether we have done something or not, as apposed to talking about strong memories. Yes, we are getting older! So as we plan our day, we also debate if it could possibly be true, that we have never gone on a wine tasting together? We have been together for 23 years this December and we live close to an area that is known for wineries. Many people go on wine tours, using limos to get from winery to winery. It is somewhat of a common "big Birthday" event or bachelor/bacheloret party event. But we both agree, we have never done this! To both of us, that seems crazy, but then again, our life took a much more family focused direction after having Teale. It has been tough for us to pull off "adult" things, getting away, even if for a day, has been nearly impossible. We have gotten fairly used to this, but sometimes it is still tough to swallow. We see other couples pull off vacations alone, weekends away, we can only dream of such things. A day date is our big splurge! We feel a sense of normalcy with several hours to "just be a couple." The magic ends at three o'clock, when Teale's bus returns home from school, but for those precious hours, it is just me and my boyfriend of almost 23 years. (to be continued)

Monday, November 7, 2011

Day Date

On Friday, Mark had the day off. I had somehow missed this day off on my calendar but after mentioning his Mother's doctor appointment scheduled for Friday, we discovered the mistake. Mark's Mom lives with us and I manage most of her personal care. Over the past three or four years I slowly took over her medical care, as Parkinson's and Parkinson's dementia started taking over her body and mind. It had been a slow decline since her diagnosis many years ago, but has been increasing in speed the last few years. We added a geriatric doctor to her care about a year ago and the appointment was with him. I had gone with her just a month earlier and to tweak out some issues that they wanted to check up on. The thing is, in between that appointment and this appointment I had seen Mom's internist with her, tweaking some more, hoping to help Mom feel better. Mom's energy is low, her motivation is even lower, Mom suffers from SAD (Seasonal Affective Disorder) and we are heading into the dark days of winter. I understand this disorder well, as I have suffered with SAD since I was a young teen. It is common in our town, grey days are far too many, the lack of sun and light can go on for many days in a row during the winter months. The feelings your body experiences are similar to depression, as it is a seasonal depression. Feeling tired and having a lack of motivation are some of the symptoms. I also feel cravings for carbohydrates and a desire to just stay home and hibernate. Often I gain weight in the winter from the extra eating I tend to do and the lack of activity. When Mark and I were first married I explained that I suffered from SAD. I had managed it as well as I knew how and knew that often the best thing for me is getting out and doing something fun and or physical. Mark understood SAD and had seen it living with his Mom. He dealt well with my SAD and was able to help me when I wasn't seeing myself slipping into it. I remember times I had barely left the house for weeks and he would insist we go ice skating or for a walk or out on a date. One of my favorite memories before we had children was on a winter day that I just felt awful. I would have gladly stayed home in bed all day, but Mark knew what I needed and took me to a movie, sneaking wine coolers in his coat. Then there were the times he would take me to see a band or just walk the mall. Simple things like that would lift my spirits. Medications for SAD were not used when I was younger. The advice was light treatment, buying an expensive special light and exposing yourself to it a certain number of hours a day, exercise and keeping active through the symptoms. I have used many treatments, but then about five years ago, the FDA approved a drug for SAD, Wellbutrin. I jumped on it, convincing my doctor to let me try it and I have taken it ever since. It is amazing to me how much better I feel in the winter! My friends would say I should be a spokeswoman for Wellbutrin, if you suffer from SAD, it is worth a try. Five years after starting this treatment, I am still in awe of the difference I feel when the endless grey days hit our area. I often comment to Mark that I can't believe I feel this good, it has been an amazing drug for me. Unfortunately for my Mother in law, she can not take it, do to other health issues, so we have been tweaking her medicines, trying to help her feel more energized. Knowing first hand the right medication can make a huge difference, I have been a huge advocate for my Mother in law. We recently made two changes in her medications that show promise, but it will take time to see the full extent of her improvement. So, getting back to Mark's day off. I would usually be responsible and follow through on the appointment, but days off with Mark are precious to me. We had had a few recently, but all of them had been filled with work around the house and tasks we needed to accomplish. I was in need of a day date, but with this appointment for his Mom smack in the middle of the day, it would be tough to fit anything in. I debated rescheduling early in the week, but somehow I felt badly putting Mark's Mom's needs after mine. On Friday I woke to a beautiful sunny fall morning. It hit me as my coffee kicked in, a statement often said to me as a care giver of our special needs daughter and of my Mother in law. "If you don't take care of you, you can't take care of anyone else." I called the doctor's office and rescheduled the appointment for my Mother in law. It won't hurt Mom to see her doctor in a week I told myself. Mark and I need this time, after all we both work hard to keep this family afloat and days like this are few and far between.  (to be continued)

Monday, October 31, 2011

Soul Twin

There are so many times I think about life without Gwenn. Deciding to have another child after the wretched birth we experienced with Teale and the not easy birth of Beau, was in many ways very risky. We were terrified something would go wrong again. There were many reasons though, that I felt another child was a good decision for Mark and I. When I first started talking to him about the idea, I knew he would be open to the discussion because, after all, we had always wanted four or five children. At some point in my reasoning with him I said, "I just think I will always regret it, if I do not." That was all Mark needed, living with regret was not a chance he wanted to take. I can still hear him say to me, "Well, then it's settled, that's all I needed to hear. I don't want us to grow old and for you to regret never having a third child because of me and then possibly resenting me." We have always run our marriage this way though. The "deal" we made in the beginning of our marriage, still holds true. Whoever is more passionate about a decision wins, period. This way of looking at life has worked well for us, we seldom argue or disagree, maybe because we have stuck to this simple rule, passion wins. I had many good points on why I wanted a third child. I hoped for healing in many ways for both Mark and I. I wanted Beau to have a sibling he could share this life with, all the good and the difficult things about being Teale's sibling. Giving him another person who understood how his life was different than most. I also knew, even though Teale was only three years old in the year we talked about trying to have a third child, that Teale would always need care. The responsibility of being a sibling of a special needs person can be very difficult. We never want our other two children to think they can't live their own lives. They can chose to move away from here if they want to, but of course our hope, is that they will always be there for Teale, when Mark I can't be. Someday, Mark and I will be gone, but Teale will still need people advocating, looking out for and caring for her. Somehow leaving all that up to Beau seemed risky and unfair. I had always wanted a large family, but as both pregnancies and births were so difficult, three was "all" I thought we could "handle." I know in the beginning of our pregnancy with Gwenn, I was hesitant to tell anyone we were pregnant. I knew there would be much judgement and criticism, as they wouldn't understand what my heart felt. I trusted in my faith of God that this was the right decision for my family. I had prayed much and had really felt good about it, but I tend to want others approval, so actually telling people was tough. It was Mothers Day when we decided to share our exciting news. Mark, Beau, Teale and I were in church with Mark's Mom by our side when I had an idea. We had told Beau that morning, he was thrilled, wanting a brother, as any seven year old boy would. Mark and I were most uneasy about telling his Mom, she would think we were crazy, our hands were already so full. Besides Teale's many medical and physical needs, we also ran an in home daycare together. It was a busy life and we had much support, but if this child had issues also, would we be able to handle it? Mark's Mom was sure to roll her eyes at us, so we let Beau tell his Nana, during the passing of the peace at church! Yes, that is really how we handled it. We let our seven year old spill the beans in a public place where my mother in law could not overreact! She did react, it was similar to what I expected, but because we were in church, well it was "less negative." Mark is her baby, her youngest of four children and we were the only ones who would have more than two children in our families. I believe she had thought all of us were all done having children. But then again, Mark and I have not followed the norm. We only dated from December of 1988 until Valentines Day, before we were engaged, setting a wedding date for August 12th, 1989, less than a year after starting to date. It was a shock to many and I'm sure there were doubters, but after 22 years of being married, happily, I think we have proven ourselves. Anyway, back to our third pregnancy, we got through all the announcements, all went relatively well.  ( to read about Gwenn's birth story   http://wearegodsentertainment.blogspot.com/2011/07/memories-of-birth-gwenn.html ) We were both set on not finding out the sex of the child as we both enjoy this secret that God gives to us. I secretly hoped for a girl, thinking a sister for Teale and a daughter for me to share all the those "girly" things with would be so nice. So here we are, eight years later and of course any Mom would say having any of their children was the "right" decision, but for me, Gwenn is much more. She is the hope and faith I so needed. She gave me the gift of renewal and healing in many ways. Gwenn and I are connected by similarities that can only be described as a "gift." We share a love of animals, both of us enjoy cooking, baking and trying new foods. She appreciates my diverse cooking much more than either of my other children and she is almost always willing to try something new. Gwenn and I both love gardening. We can spend hours in a garden store together dreaming of all the beautiful gardens we would design if we had tons of money. There have been many times we have purchased plants or seeds to grow because of her passion. She understands the miracle of a plant growing from a seed, her understanding and patience has always been far above her age. My Mother was a talented gardener, I see her in Gwenn often.  Gwenn is a talented artist, she and I could draw or paint for hours. She is often creating "art" with our extensive craft supplies, she loves working with  molding clay and making pottery also. Her musical abilities are amazing, but that is from my husband, not me. I often look at Gwenn and see myself, we have so much in common, Mark often jokes about us being twins. When I was pleading my case with Mark those many years ago that I really wanted a third child, I knew that child would complete us as a family. Gwenn is what I would call my soul twin. We share a depth and a love of numerous passions.  I had dreamt of teaching a daughter but as she matures, I find we actually teach each other much.

Wednesday, October 26, 2011

Respite

In the special needs world you maneuver much of the system alone. From the beginning I found it a game to research all I could about help and programs in our area for our strange new circumstances. Although assigned a service case manager at some point in our journey, I quickly realized it was up to us to find out what was out there. I also discovered that the best place to get information from was often the other parents of special needs kids. Parents who had lived the system and or this crazy life longer than Mark and I had. So I started going to support groups, special needs kids programs, connecting with other Mom's and asking a lot of questions. One of the things we found was overnight respite. We had in home respite, but overnight was different. Teale would go to a home that was specifically for children with special needs and spend a night or nights there. I personally look at it as a band aid for a huge gash. We at the time of applying for out of home respite were struggling badly with Teale's behaviors and her all consuming ways. We had a new baby, Gwenn and a young son, Beau who also needed our love and attention. Those early months with Gwenn were the toughest, Teale was unpredictable and needed to be watched at all times. Gwenn needed our protection and then there was Beau, eight years old and active. I'm not sure how we survived those months and years when Gwenn was very small and vulnerable, but somehow we did. Gwenn never got severely hurt by Teale, thank goodness! Sure there were scuffles, but Mark and I were vigilant in our watching and protecting! Teale was like a large toddler, whatever was hers, was hers. Gwenn was a typical toddler, exploring her environment, she may pick up something of Teale's and all hell broke lose. Those were tough days, but as Gwenn grew, she came to understand "Teale's ways" and she has adjusted, as have all of us! So when overnight respite came to our attention, we researched it, applied, visited and eventually tried it out. There is an overwhelming unspoken truth among special needs families though. We have too much on our plates, but often we also have a very tough time letting go. To have strangers care for my multi handicapped, mentally ill, very complicated 4 year old was huge leap for me. She was still just a little girl the first time we sent her to respite. We looked at two homes in our area, but went with the Christian agency because it "felt" better to Mark and I. There have been bumps in the road over the many years Teale has done overnight respite. But we have worked through much and at this point it is just part of our lives. Like I said earlier though, it is like a band aid over a gash. It gives us a much needed breather, time to enjoy each other and get things done, but it does not solve the everyday struggles we face. It is the states way of trying to help and acknowledge that our lives are difficult. I believe the state hopes the breaks are enough to have families keep their children in their homes, therefore in the long run, saving money. Overnight respite is free for my family, but there is a limit and the need in the area is far higher than the space for children. Teale may go to overnight respite as often as every six weeks for two nights or it may be as infrequent as one time every six months. You can request times if you have a special event, but for the most part, we wait until Teale is invited. It still is not "natural" for Mark or I, it hurts to send Teale to respite, it hurts to need it. We do it because we are here for the long haul with Teale and the breaks do us good, but the worry doesn't go away. It is difficult to pack her, wondering what she will miss from home and if I am sending "enough" to keep her happy. It is a challenge to get the medicines right, the orders from her doctors set, as Teale's medicine bottles often do not say what she is actually on. Her doses change frequently, we are in constant flux, talking to her doctors or texting them to adjust this or that. Teale stresses over going to respite, she fears being abandoned, it is a constant concern for her. The anxiety for days before she goes can be so bad it makes me wonder if the couple days "off" are worth it? Then there is the respite backlash, her behavior can be awry when she comes home, like she is mad at us for sending her, but doesn't know how to tell us that with words so she lashes out. But even with the many stresses, I am convinced the good outweighs the bad. Our other two kids get time with us and we get time with each other. We sleep through the night and even wake late, the quiet in the house is eerie but also soothing to my often frazzled soul. Teale meets people at respite, she experiences new activities and often has much  fun. They treat her well and I believe she may even enjoy the break from us also! Whenever one of us is gone overnight, whether it be Gwenn to a sleepover or Mark on business, we call it respite. It is our way of helping Teale not feel like just she gets "sent away." I also always pack a respite gift in her suitcase, something new to look forward to when she is at respite. Teale just went last weekend for two nights and while she was away we enjoyed some time together. Respite isn't perfect, it isn't the answer to our constant stress, but it renews us to keep on, keeping on.

Saturday, October 15, 2011

Diva Time

I spent yesterday morning with my group of friends named The Divas. The Divas are about as unDIVAish as a group could get. Each of us has a child or children with special needs, who our lives revolve around. We struggle to care for our children's ever changing demands while trying to fit ourselves and our family into society. Divas are not a group of whiners though, instead we may actually be called winers. Yes, part of our relationship often includes indulging a bit. Sometimes we get together pretending to be true Divas and escape our lives. Even if it is only for just a few hours, it is always a great time. Our bond is so strong because our understanding of each others lives is so great. There are people who get my life but there are many more who do not. To be with The Divas is easy, the commonality of our lives bonds us. The Divas don't judge me for example, when trying a new medicine on Teale that is "extreme." Their advice and care is from experiences they have lived similarily, so judgement is not part of it. We share our lives openly with each other and know when one of us is "in trouble." We have rallied numerous times when a Diva was down, taking meals, hugs, coffee, flowers, calling, texting and e-mailing our love and support for each other. When we are not together, texts and e-mails keep us in the loop of each others lives. It is a daily occurrence to get an e-mail and or text from a Diva asking how I am doing or sharing a story only our group would get. We have done many things for each other; babysitting, cleaning, researching, advocating, cooking, but what we do best, is hard to put into words, it is a feeling of belonging. Our group is small, seven including myself, but often we are only six, as one of The Divas works full time. There are many other women who I have similar bonds with, many women I have become close to because of our special children. But The Divas are my biggest supporters, they are the ones I tell my most intimate thoughts to, they are the ones I share my scariest fears with. Don't get me wrong, as any group would, we have had our times when I have wondered if we would survive. We have had times when feelings were hurt and healing needed to be taken slow. In the end we always come back to each other though. Without The Divas I would feel alone in a crowd of hundreds. Summer is always a difficult time for each of us, the schedule is off, some kids are in Summer school, others are not. There are many weeks off of programing altogether for all of our kids. The Summer is often about survival, literally. We just try to get through the days, while our kids who thrive on routine struggle to stay regulated and happy. Our kids are not good matches as a group, so getting together with each of our families rarely happens. We will occasionally break off and get a couple of us together with our kids, but more often, the Divas is just about us Moms. Last year we realized our "easiest" time to do something social together was while our kids were in school. We started gathering for L.L. (liquid lunch) on occasion and often the wine (beer, mimosas, Bloody Mary's, etc.) would be flowing. Don't worry we are careful, we have designated drivers, we don't drink more than a glass, etc., etc. My point is, it is a few hours of escape, with women who truly get what I am trying to escape from. We will, of course, talk about our kids, the doctors, the medicines, the sleepless nights, the IEP's, the school meetings, the difficulty we experience trying to manage our relationships with our husbands and family. But what we do best is laugh! We enjoy each other and the many similarities of our complicated lives. We celebrate the small steps our kids take that only each of us would understand. Yesterday was the first time since last Spring we have all gotten together. We celebrated a Diva's Birthdays, Diva style. We gathered at one of our houses the earliest we could, around 9AM this time. We had breakfast together, including cupcakes for the Birthday girl. Mimosas and Bloody Mary's in hand for some of us. We laughed, talked, told stories and we even watched a funny movie together, "Bridesmaids." It was an escape from the stress we live daily.  It is how I survive the constant barrage of disappointments my family faces on a regular basis. A few hours and a lot of laughs with friends who have a deep understanding of who and what I live. Thank you Divas for the many ways you have enriched my life!

Thursday, October 13, 2011

Balance

How to balance the love and time I give to others is often of concern. Whether it is the new friend in my life or the man I have slept next to for the last 22 years. The people in my life are important to me, they make me who I am and they make this journey much more interesting. When my niece introduced me to Facebook years ago, I didn't get it, what is the point was my reaction? I am admittedly a FB addict these days, but if you really know me, this should not be a surprise. I truly enjoy people. I find it amazing that we can live all over the world, come together on FB and learn we have something in common. My sharing of my life with Teale has connected me to many people otherwise I never would have. I get lots of private messages from "friends" who may or may not be ready to share their struggles as openly as I do, but they feel a certain kinmanship because I have. Many of these people I would not have guessed had similar situations, many keep it hiden. I have never really figured out what or why I decided to start sharing so openly. I knew I wasn't alone and maybe I just needed the release? Maybe I needed to have more people know the truth of what Mark and I live. I know I felt a nudge to do so, a spiritual nudge, knowing that my sharing would connect people. Often in my life, people have shied away from how difficult our life can get. Both family and friends have stepped away when we have needed them to step up. Some of this I am sure is our "fault," as Mark and I put off an air of strength, even when things are at their worst. When Mark's Mom moved in with us a year ago, one of the things Mark said was "This isn't going to be perfect, let's face it, you will be living with Teale." Truth be told there are times both Mark and I wish we didn't live with Teale. It never occured to me how much of an eye opener this would be for my Mother in law. Afterall, she had seen the challenges, she had come to the NICU when Teale was born. She was a teacher and knew much about child development, so she must have seen the slowness of Teale's progression, right? My Mother in law is dealing with her own progression of a disease, which is taking her slowly from us. So she may have known we struggled but truly she had barely ever stepped up back when she could have. Now as she lives our life, her understanding becomes more clear or at least as clear as it can at this stage of her life. There are times I have heard regret that she didn't know how tough it was in our home. Sometimes I have regret also, regret she didn't show her son, my husband, more compassion and care. I believe he has needed that from his family, but rarely has he gotten it. For his Mom it is all but too late, now she needs us to take care of her. The times that she could have helped us are in her past. Her occasional compliment though, that helps both of us know she may finally understand our life. Unfortunately or fortunately, Mark's Mom is not who she was as a younger person. She says hurtful things that imply Teale is just a nuisance in our life, that the old way of "putting away" a child like Teale may be best. She also says kind things about our strength, courage, patience and perseverance. She sees how much energy it can take at times to just keep going, fighting for a better life for Teale. She was not able to step up and help us, for whatever reason when she was more mind and body abled, we were not who she chose to help. She is not the minority either. I have found it is difficult for many to step up and help those who are closest to them. I have seen it in our life and in several of my friends lives, especially those who have children with challenges, often their extended families shy away. It strikes me as funny how people will voluneer for this, that or the other thing, but ignore the people closest to them who are suffering. I know I am not imune to this either. I love volunteering, I would spend much of my time in schools, old folks homes, working on fundraising or dreams for The Dream Factory or persuing many of my other interests. I have family and friends who I am sure would benefit from my giving to them, but often giving to a stranger is easier and somehow more rewarding. Balance, the definition is a state of equilibrium, mental steadiness or emotional stability. We all strive toward this,  in our family, in our work and in our relationships. We may come close at times, but more than likely we miss the mark and don't see the needs that are right before our eyes.

Monday, October 3, 2011

The Journey of My Friend

This past weekend has been filled with sadness for me, as I mourn the death of a friend. His wife and I have known each other since I was in my late teens. I walked into a salon to get my haircut one day and have been going there ever since. It was a simpler place back then, now it is a premier salon. It is considered one of the finest in the area and has had national and international attention too. So my going there seems kinda strange, after all, if you know me, I am not the high maintenance type. My nails are often very short and their being clean is impressive enough for me, much less manicured and polished. I'm not a clothes hog or even know or care what the latest fashion is. I'm sure some people at the salon I go to scoff at me as I walk by, I really just don't look like I belong. My make up is not always applied when I go there and my hair is often just brushed, not styled. The people who work there are always beautiful and really well put together. I usually feel inadequate, but then there is my friend, who loves me and doesn't care if I'm put together or not. She has worked there since she was very young and is now a "senior or master" stylist. She is a talented hair stylist, I often send my friends to her and everyone is always impressed with what she does. Sadly, on me, her talent is mostly wasted. I am simple and like my hair to be easy and generally long. I barely change styles and she knows me well enough to not even bother asking if I want something new. My time with her is a time to catch up on each other's lives, chatting about our kids and our husbands. Often we try to work in going out afterwards, because the time she is doing my hair is never enough. I have planned my cuts as her last appointment of her day for years. Whenever possible that is, so we can go catch a bite to eat or a drink together when she finishes. Our relationship has been this, much of the twenty plus years we have known each other. As we added marriages and kids we needed simple, easy ways to stay connected. Before marriages, we spent more time out together. There was a group, mostly of stylists and me who used to go out. I even shared an apartment with one of them at one point. I was not even of age to go to some places, but somehow this was never an issue. Walking in with all these beautiful women, they never questioned my age. We danced at clubs, ate at restaurants, had parties at each others apartments. Then I met Mark, I all but stopped hanging with my single friends at the bars anyway. After all, the main purpose was to meet men back then and I was perfectly happy with the one I had found. My relationships with girlfriends changed, as they do when someone marries. I was the first of the women to marry and as they all still looked for their soul mates, I pulled away from the group. During those early years of my marriage, some of them would come see Mark at the bars he played at. He was in a local "bar band" back then, so often this was the time I would see my single friends. Soon, one by one, they each found boyfriends some of which would become husbands. My closest friend in this group found what would be her husband and the two of them would occasionally join me at Mark's gigs. Mark's band was fun, so my friends came out to support him and be with me. Then another shift happened after I had my first baby and Mark quit the band. I realized I had friendships that needed to be nurtured more. I started trying to figure out times and ways to see friends. The girlfriend who still styled my hair I saw for haircuts but that was never enough, so we started planning times out after cuts. I loved hearing stories about her husband to be and her dream wedding coming up. With her wedding fast approaching, I attended her shower with my newborn son in tow. I was breaking the rules, asking her sister if it was ok, as I was nursing so often. She agreed but I could tell it was with hesitation. When I walked into the shower, I knew right away I should have left my son home. He was an easy baby and was perfect but there was a tension, like I had crossed a line I should not have. My friend was fine, always making me feel loved, even in a group I knew only a few of. Her sister may have just wanted the party to be about her sister's marriage and my bringing a new baby took away some of that attention? Years later I still have some regret, I wish her sister and I had connected better and have felt like I made a bad impression on her that has never healed completely. The wedding came and it was our first night with a baby sitter. My oldest sister took Beau for the wedding, Mark and I excited to get out as a couple alone. It was a beautiful wedding, much more traditional and formal than ours had been. They were married on New Years eve, ringing in their marriage with the fireworks our city put on at midnight. But Mark and I had never been away from our son and we were  anxious to see him, so we quietly snuck away from the celebration. That was 1995, our friendship has had many twists and turns since then. I had two more children, both girls, one with many special needs. She had two boys. After her first son was born, she worked shifts that made it possible for her family or her husband to care for him. Then at some point, she and I discussed my husband and I caring for their son a couple days a week. My husband and I ran in home daycare, so having our friends kids in our care was common. We loved helping friends, knowing their precious children were safe in our care. It would give her son some socialization with other children. It also took some of the pressure off family members who had been juggling much and allowed her husband to deal with a complicated schedule, that  included a long work commute. The other plus was that it gave Mark and I more time to see both her and her husband. She dropped off their son on her way to work and her husband picked  up at the end of the day. Her husband and I would stand in the driveway talking. We would discuss their son, the day and life in general, the struggles and the joys. I enjoyed getting to know him better during this time, as much of my relationship had been just with his wife. Up until the time we started taking care of their son, I didn't really know her husband well personally. The things I knew were through her stories about him. Uniquely though, she did know Mark pretty well, as over the years he had been going to her for haircuts also.  She was a great "haircut therapist" at times, giving Mark advice on a disagreement we had had or just chatting about our lives. Mark loved her also and knew her almost as well as I did. Contrarily, I only had stories to go on about her home life. The stories were usually funny, he was a guy I knew I would like, but life was busy and we didn't try hard to get together as couples. It was easier to have the guys stay home with the kids, so she and I could get out. Her stories about her husband portrayed him as having a quick wit and a great wry sense of humor. Her laughter as she told me about her family is one of my fondest memories. I developed the same love of him, as we connected during the time we had their son in our care. He and I were similar in our sarcasm and humor, he cracked me up with his subtlety. Keeping a straight face, but saying something totally hilarious, my friendship with him was as easy as it had been with his wife all those years. It was obvious they were good for each other. Knowing him mostly through her eyes first, but then learning his depth of kindness as we stood in the driveway discussing life. Both of them were huge supporters of us, knowing our struggles with Teale, they showed their care in many ways. Their were countless times she helped Mark and I with just the right words or looking at things with a different angle. I knew they prayed for us and I appreciated their unending care and compassion. As we fought for four years to get Teale into the private school she is finally in, their support was amazing. Both of them looking for connections to help us. Both of them praying and believing what we wanted was truly the best choice for Teale. Having people just trust in you gives you power to continue the fight, they gave us that. About a year ago though, the tables turned, my life had always been the complicated one of the two of us. Teale often had medical struggles but her issues would suddenly pale greatly. With what at first was thought to be a stroke, was later diagnosed as ALS. My friend's sweet, funny, caring, loving, compassionate, witty husband, the father of her two young boys and her best friend had the unthinkable. He was just 45 when diagnosed, the disease progressed quickly and this past Friday, his fight with ALS ended. The times I have met with my friend over this past year have been treasured beyond any others. She has taught me so very much with her strength, courage and wisdom. She has been an amazing wife and mother, but also a roll model for all. Amazingly during this most difficult time in their life, they both continued to pray for us. It would have been totally understandable if they had kept all their prayers for themselves. But even in their despair, they were both confident and encouraging that it was finally "Teale's time." This past spring, as the disease had taken much from my friend, he sent me affirmations that we were going to win this time. We were finally going to get our daughter into the beautiful, safe, loving school we wanted. His prayers it seemed, were directly connected to God and with his encouragement, I also dared to believe. He  would give me a "like" on Facebook or a note saying he was praying for Teale. Somehow telling me "we had this one" and "this was her year" the power of positive thought being something both of them, Mark and I shared. When we finally got word that Teale was accepted into The School of the Holy Childhood and our school district was also giving their blessing, Mark and I were overcome with joy. I immediately contacted friends and family, letting everyone who had believed in us, know the news. I can't deny though, that one of my most favorite "texts" was to my friend and her husband. By last spring, his progression was horribly fast, the disease was taking him from us much quicker than expected. Not wanting to put added pressure or stress on my friend, I had not pushed myself into her life.  I let her know I was here, but my gift was "stepping back." Reminding her of my love and great admiration, but knowing this journey was for those who were the very closest to them. Texting her was not intrusive, she didn't have to talk to me, she didn't even have to respond, so often a text just saying "I love you" was all I did. Letting her know what she needed the most, that there is always love. When I told her we had finally won the battle, her response was exactly what I expected "I knew this was her year!" After Teale started at the new school and came home talking about friends for the first time in many years, I shared this with her in a text also. I knew she would understand that their encouragement had been much appreciated and I was giving them some of the credit for this "win." I needed her husband to know his prayers had been heard and he had given us a gift I could never repay. The word spread quickly last week that his passing was close. Not knowing how close it was, I was compelled by something outside of me and sent a text to my friend. It wasn't my usual text, not "I love you" or a "XOXOX' not a "<3" like she so often sent me. My message was "I'm sending angels to surround you." And with that, I said a prayer to God to go comfort my friend and her husband. He left us sometime that same morning, whether it was before or after my text, I may never know. I do know my heart aches because he is no longer here on earth with his wife and their boys. I know I have barely thought of anything else since I got the news on Friday. I also know the lessons I learned because of him will last me a lifetime. My favorites being ~ Pray for others, even when you need the prayers for yourself. ~Keep the faith and trust in Gods plan. My daughter may never understand that he was part of the bigger picture in her life, but then again maybe she will? Sometime in the beginning of his diagnosis, out of the blue Teale asked me about him. She really never knew him well, as she was quite young when their son was in our care. But somehow, one day she had him on her mind and expressed this well. It was concern, that he was sick, but she had not been in my presence to over hear anything.  I texted my friend the strange comment my severely developmentally delayed daughter had said, I knew she would understand. Her response was classic her "She's connected baby!" I guess that says it all, we are all connected, we just need to listen with our hearts and sometimes those who are the least likely to teach us this, do. Rest in peace my friend, the journey is done here, but your memory lives on and will never be lost....XOXO

Wednesday, September 28, 2011

Relief

 The new antipsychotic medication is giving Teale much relief. Her raging has been far less, her badly bitten arm is healing and she is much calmer most of the time. The warning about her increased appetite has proven true at times. She seemed to be unable to stop eating at dinner the other night, concerning us greatly at the time. Luckily, those times are few so far. We are playing with the smallest dose possible that still helps her but hopefully keeps the side effects at bay. This past weekend was the best in a very long, long time. She didn't rage even once and she didn't bite her own arm. Sure it wasn't perfect, we still had to live around Teale much to keep her calm, but that we are fairly used to. Mark and I joke that if we ever separated for whatever reason, no one would want either of us with our family being so complicated. We also have said to each other jokingly that if one of us was ever crazy enough to have an affair, that person gets the kids! Believe me, I won't be having an affair and I truly believe Mark won't either, but laughter and jokes help us. Laughter is how we get through much. Teale's rages are sad at the time they are happening, but usually something will happen in one that can make us laugh after all is said and done. In one of her fits she suddenly saluted us! I'm not kidding, she gave us two fingers at her forehead and out to salute. For all I know about sign language, maybe it was a purposeful sign at us? Mark at the time called her "An angry Girl Scout" and we laughed about it for days. She can be our biggest source of laughter and of sadness. She gives us much comic relief with actions like the angry Girl Scout or the flipping Mark off. There are countless stories of hope from her rages also. Times when we were in public and I felt like God sent the perfect person to help me. Times when one of us was hurt by rude comments, but had a teachable moment in which we were able to change a heart. I was telling a friend at our church about the flu shot incident and when I was done, she said "and you are still smiling, your amazing." I don't find us amazing, but I do know we deal well. Maybe it is because Mark and I have become a bit twisted over the years of living with this level of stress? But I believe it is healthy that we can laugh so often, seeing the humor in our life helps more than anything else. Beau and Gwenn are also able to do this. Beau does a "mean" imitation of Teale in a rage and at the right time, it cracks me up. Often Teale's behaviors are our entertainment, maybe that offends some of you, but we need a way to survive this. Last night Teale said "I can't believe Beau driving!" Beau is just learning to drive and Teale had never seen him pull out of the driveway, but last night she did. I responded "Yah, isn't that weird?" Teale not hearing the word I said correctly replied "Yah, that is willy wude!" Translation: "really rude." I couldn't help but laugh and share the story with Beau. Seriously, I'm glad to have my Teale back, she may not be perfect, but as I seem to learn over and over again, "It could always be worse!"

Tuesday, September 27, 2011

The Flu Shot

Last week I went to the pediatrician office to get both Teale and Gwenn's flu vaccine. With Teale being high risk, she can not afford to get sick with anything as severe as the flu, so her doctor recommends the vaccine for our family. Teale's behaviors have been very unstable for about six weeks now. The latest behavior that has really intensified, is biting her own arm. Her psychiatrist and I had met earlier the week of the flu shot, discussing different medication options to add to her already extensive medication regimen. We decided to increase a beta blocker that she is on for anxiety and her resent diagnosis of Hoshimotos Disease. The beta blocker helps to slow her racing heart, caused by the current hyper state of Hoshimotos. Hoshimotos is a thyroid disorder in which your own body attacks and eventually kills your thyroid. There are two stages to this, the hyper state, when it is still functioning, but at an excellerated state and then the hypo stage, after it is no longer functioning. Teale was diagnosed with this in August when Mark and I followed our gut and had a blood test done on Teale. She had been "off" for a while but then also had some strange vomiting over a few day period that bothered us. Knowing a blood test is often the first step to medical intervention with Teale, Mark took her on a Sunday morning for blood work.  We have standing orders and then we usually also have an order for blood work in hand. The one we had at home checked thyroid levels and by late afternoon, both her psychiatrist and her pediatrician had called me with concern. By the end of that week we had had three additional blood tests done on Teale trying to find the source of the elevated thyroid level. Her behavior also escalating as the week progressed and insomnia became an issue. The week following the blood work, Hoshimotos was the diagnosis. Beta blockers were recommended to give her racing metabolism some relief. Ironically Teale was already on beta blockers at this time, to help with anxiety, so we increased them just slightly. Relief was not found, her body was angry and her moods were not stable. She was raging often and biting her own arm was part of this uncomfortable feeling her body was experiencing. Her psychiatrist compared it to "cuttings," people who cut themselves to "feel something." The guess was that Teale must be in a depressed state of her bi polar or the Hoshimotos was making her feel so high strung that biting her own arm gave her some sort of release. As a parent it is disturbing to watch, the depth of her biting herself increased and she often was drawing blood. Her arm looking so badly bruised and scabbed, I wondered if CPS would be called on Mark and I? After much discussion and many weeks of hell, her psychiatrist suggested a different medication to help Teale, an antipsychotic. She has been on antipsychotic drugs before, but often the side effects are worse than the behaviors we are trying to solve, so I was wary. This one has extreme weight gain as a side effect, something that deeply concerns me. Teale already has sleep apnea, weight gain could intensify that, causing irritability because of sleep depravation. Weight gain is also a concern because she is already bigger and heavier than me and in certain situations, I need to control her behaviors by holding her. It is sometimes the only way to help her calm because otherwise she will hurt me and throw things. The bigger she gets the more difficult it is for me to hold her to calm. Her doctor e-scribed the prescription to our pharmacy and I left saying I would discuss it with Mark and research the medication further. I picked it up at the pharmacy, just in case we decided to go with it. That night Teale had one of the worse rages she has ever had, about one hour of out of control behavior and her practically eating her own arm. We were exhausted, sad beyond words and desperate to help her, I gave her the new medication. We saw immediate results, she was pleasant to her brother, who had been a target for many weeks. She had either loved him or hated him, there had been no in between. He could walk through a room and she would go ballistic at him for just looking at her or he could make her laugh like no one else. The way she had been treating Beau was my biggest frustration, as he is a good big brother, caring about his sister much. I felt her behavior toward him was breaking down their relationship and I was scared it may never be repaired.  To see Teale be happy and "normal" with Beau was a small miracle, so we decided to give the medication a try. Wandering at night started, a side effect of the medication was insomnia and Teale had it. She was up and down all night, playing Wii, watching TV, bugging Mark & I. But the results were decent enough to continue the medication and hope the insomnia would stop after her body got used to it. Going into the flu vaccine appointment, Teale was "loopy." The combination of the increased beta blocker, the new antipsychotic and a few nights of insomnia was affecting her. The pediatrician would be seeing both Teale and Gwenn, as giving Teale a vaccine by anyone but her own doctor was difficult. She was terrified of the new nasal spray but accepted the shot with relative ease. Her pediatrician observed Teale and agreed she was very calm for her, but also a bit loopy. We discussed cutting back the beta blocker, he checked her blood pressure, ears, etc. He gave Gwenn a good check over and she was given the vaccine in nasal mist form. Then we decided on a way to give Teale the shot, telling her and then administering it quickly. She sat still, but then made a noise much like when she has a seizure, an inaudible moan. Her arm jerked strangely at the same time, her doctor and I both alarmed by it. Suddenly ALL color drained from her face and she turned completely grey. I sat down next to her, putting my arm around my daughter, who in any other situation would push me away, but she leaned into me instead. This alone caused alarm, Teale hates to be touched. Her gaze was distant, I was scared. As Gwenn sat across the room from me on the exam table, I gave her a glance over, wondering what she & I were about to witness. Was Teale going into a seizure, was she having a strange reaction? Her color was so grey, there was a look of death to her. Her doctor immediately listening to her heart rate, it had plummeted to 30. A nurse was called into the room, the three of us picking up Teale to lay her onto the ground. Tears are running down my face and I am terrified, is her heart stopping, what is going on? As we lay her down she shuts her eyes and doesn't take a breath in, both her doctor and I are aware of this and tell Teale to breath! She does, but holds her breath again. The look of her without color, her eyes shut and the not taking in a breath was too much for me, I am increasingly scared, as the nurse comforts me. Knowing her doctor is in control of the situation, my emotions are coming out. Is Teale dying before my eyes? It was so unbelievable, a simple flu shot, what went wrong? The minutes were passing,  slowly her heart rate was coming back up and color was returning to her face. Soon she was looking at us like, "why am I on the floor?" She then abruptly stood up, both her doctor and I guarding her. In the end, her doctor believed it was the combination of the new medication, the beta blocker and a nervous reaction to the shot. Although Teale does blood draws easily and has never expressed fear when getting a shot, her doctor believes the shot was the catalyst. It was an exaggerated fainting spell, a vasovagal response. With Teale having a seizure disorder and her being on so many medications, the doctor later admitted to me that he was fearful also. Usually a child who faints from a flu shot would not cause him such alarm, but Teale was different. We sat in the office until Mark arrived, as I was shaken and needed to get Teale home to get her feet up. Mark would drive Gwenn to school and let the teacher know what she just witnessed, in case any fears came out. Finally walking out of the doctors office after what was supposed to be a routine flu shot, I now had perspective. Teale's behaviors over the many weeks had been wearing, frustrating and caused me anger too. I was sick of how badly she was affecting all of us at home, I was devastated and desperate for some relief. But as I walked out of that office, I realized I would never want to live without the chaos Teale brings to our lives. Perspective was the gift that day, a realization that Teale, even in her most difficult stages, is a part of my heart that I could never lose.