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Sunday, November 25, 2012

Changes & Blessings, part 8

I scooped up the box from the front porch & put it in an inconspicuous place in our garage. We would wait until a good moment to open it. A moment with the family all nearby, a moment when Teale was in a good place to accept the gift in all the love it was meant. It would be a couple evenings later before the evening was free of clutter. I called everyone together, explaining to Beau and Gwenn they will want to see Teale's reaction to this gift. I gave them a little background information and then we helped Teale to open the giant box. As she dove into the pink packing peanuts I video taped her reaction. My new iPhone in hand, I taped as she giggled her way through the packaging peanuts. I knew I wanted to capture the moments not only for myself, but mostly for Michelle and Meaghan. I planned on posting it to my Facebook page to share the story, to share the love, to show the generosity of Michelle and her family. I knew Michelle was not looking for praise from others in her generosity, I knew it was sincere and could be kept silent. But my heart told me by sharing we would touch others, by sharing the whole amazing story, someone, somewhere would also "pass it forward" and change a persons life in some way. The opening of the doll was entertaining and also touching. There were moments of joy and moments of confusion. The tape captures some of Teale's struggles and much of her humor and joy too.  When you see her OCD behavior shine through because the packaging peanuts are all over and the mess is too much for her. Her laughter as her Dad doesn't understand how to remove the hairnet from the doll. At one point Teale asks if my friend died, in such a joyous moment it is such a strange question. I have often wondered about that question, was it just because like she couldn't grasp why someone did this for her? I believe she has a depth of spirituality we do not understand and although the question is shocking to us, my bet is that there is a deeper meaning to it that we don't understand. Maybe Teale sees angels who help her and bring her joy and she thinks the angels brought the doll? Anyway, the video says far more than my words could ever say. My favorite moment was when she leans back in complete disbelief and joy as she discovers the doll. Teale shows happiness like no one else I have ever known. The doll has bonded us with a family who I am proud to know. It taught us and many others that giving is indeed far better than receiving....Now, go pay it forward...



P.S. The video would not upload at this time. I will work on it and hope to share it soon...

Monday, October 8, 2012

Changes & Blessings, part 7

I decided to just explain to my high school acquaintance that Teale didn't have one of the dolls she so coveted. That we just couldn't afford them and so a gift from American Girl Doll, although a very sweet gesture, just didn't make sense. She wasn't giving up that easily, Michelle said her daughter and her really wanted to do this. Michelle's daughter, Meaghan, had received many gift cards from her Birthday and with their living so close to NYC they often visited the AG store. They wanted to send Teale a doll! My heart jumped at the thought, all I could imagine was Teale's excitement when she opened that package. I was overwhelmed by the generosity, touched by the kindness and quit frankly confused on how to handle this. It just seemed so greedy, so wrong to accept such a large gift from someone I barely knew. At the same time, my heart was filled, I just couldn't believe the kindness in the world. I thought about how I could share this story, how from sharing it, it would touch more lives. The social media had brought us together, we had a second chance at friendship. Michelle was known to be a sweetheart in high school, but I really never had hung with her. She dated a boy for most of high school and I believe that had much baring on who she hung out with. I actually left high school shortly after Christmas break my senior year. I had fulfilled most of my credits to graduate and was just sick of the everyday routine. My guidance counsellor set me up with the local community college to fulfill my final credit and I took that class at night. As luck would have it I also landed a live in Nanny job for that semester, so suddenly my high school career was done. I would still walk at my high school ceremony, graduating with my class, but I never returned to classes at my high school. I was just ready to move on and the opportunity I ended up in as a Nanny are still some of my favorite memories of my lifetime. The family and I really hit it off and I loved living with them. But my decision to leave high school early meant I missed out on the most fun semester of a persons high school career. I have very little regrets, but every once in a while I wonder what I missed. I only bring this up because I may have missed opportunities to become close to people like Michelle had I stayed in high school that last semester. Her reaching out to me and my daughter was a second chance for both of us, something Facebook really deserves a lot of credit for in my life. I have made many connections, found out many people who have children with special needs or not have followed my family, learning along the way. People often reach out to me privately about their families struggles too. The networking of special needs families tends to be tight anyway in a community but because I am so open about our life here and on Facebook, I have connected with many. People often reach out to us in good and bad times, but Michelle's offer was unique. Not because of the dollar amount attached to it, but because of the sincerity it was given in. Michelle knew she could not solve all the struggles Teale and my family went through, but she wanted to give some joy to all of us. I graciously accepted her offer and the package arrived later that week. Many strange "God whispers" happened that week before the package came though. One time I caught Teale on the computer looking at The American Girls websight, she had up a picture of the exact doll Michelle had picked to send Teale. My heart jumped with excitement! Teale said to me once again "Maybe for my Birthday?" as she gazed longingly at the doll on the computer screen. Michelle and I had started texting each other regularly, so I sent her a picture of Teale looking at the doll on the computer. Her response was "It was meant to be." Another day I took the girls to our local library, a regular easy field trip with the two of them. There is a place where a display is set up and changed regularly for the kids. Often it is tied into the seasons of the year or book characters. As luck would have it, it had recently been changed to American Girl dolls! Teale stood staring at the display behind glass, my heart beating a bit faster as I imagined the package on it's way. Again I sent a picture to Michelle, again her response was "Meant to be." Michelle also texting me regulary, sends me updates on where the doll is in the process of shipping. It is an exciting week, as we await the surprise package. I decide to not tell my family to make the packages arrival even more exciting. One day Gwenn comes to me saying there is a big box on the front porch...

Sunday, October 7, 2012

Changes & Blessings, part 6

I go to sleep worried, this is my normal, but when it comes to seizures, nights are the most worrisome. I say a prayer, asking God to protect Teale and to wake me quickly if she does have a seizure. With exhaustion setting in after several nights of worry, I pray I wake if Teale needs me. My fears of my sleeping through a seizure are huge. Mark is unlikely to wake, he has never in the past until I have and then alerted him. It's a lot of pressure to live with every night, but I am a faith filled person, so I often look at life as "God's will." He will wake me if Teale needs me. The morning comes and Teale seems much better, maybe "they" were right, it was too high a Lamictal level in her bloodstream. I start to feel more relaxed, we are back to "our normal." Hopeful once again that Teale is safe, that her body will stop fighting itself, my fears are dropping with the passing of time. She continues to cherish the new American Girl catalogs, saying to me, "That was so nice of Leah!" my friend's daughter who gave up the catalogues for Teale. Teale owns some dolls similar to the American Girl dolls, but the cost of them prevents us from buying the "real" thing. Raising a child with multiply disabilities has many hidden costs people would not know or understand from the outside.  We have changed our lifestyle many times for Teale. Giving up things often we thought we would do as a family. We have also done things differently for her sake and the sake of peace. We even changed careers at a pivotal time in our lives. We sent Mark back to college and I quit working altogether to be home for our complicated family. Life with a child who is mentally ill is often about keeping harmony. If something costs more, but for the sake of the family it is worth it, we will do it. These are not extravagant things I am talking about. We do not live on credit. But little things all add up. Our taking two cars to our son's soccer games, in case one of us has to leave with Teale, is a good small example. Teale's need to drive to calm also equals wasted gas. Like I said it's the little things that add up. Anyway, the catalogues to Teale are like a constant wish list. She goes through them asking in Teale language "Maybe for my Birthday?" We always say "Maybe?" Pretty much knowing unless we suddenly come into unfound money, maybe is really a very far off hope. So when I get contacted by an old high school acquaintance asking if she could send Teale a gift from the American Girl store, I am thrown as to how to handle it. She had seen my post on Facebook requesting a catalogue and happened to be visiting the store with her daughter. She said it felt like God talking to her to contact me. We were not close in high school, but she had followed much of my journey on Facebook and through this blog. Teale doesn't own a doll and although the clothes can be purchased for a modest cost, the dolls can not and they are what Teale yearns for. I hesitate as to how to say a gracious no thank you. At some point on this journey with Teale, I had learned when people want to help, you are giving them a gift as well as yourself a gift by accepting. There were times I was too independent, trying to stay too strong in my pain to let others in. Then there was this epiphany. I'm not sure how or when it happened, but I finally realized we were going to need a village to raise this child. I was not gaining anything by being stubborn and strong. I realized maybe this was God's gift in this life. He could not prevent her brain injury and the suffering we all experienced, but He could give us the gift of love along the way.

Monday, September 17, 2012

Welcome Back

Although it has been months & I need to finish my story, I woke today thinking about writing. This I have not given much thought to in months. So, I thought I would explain...
I love the Spring & Summer months out on my porch early in the morning. This Spring came especially early for my area. I was able to sit outside enjoying my morning coffee, watching the birds come to my feeders and soaking in the warmth of the sun. The peace I feel early in the morning is very spiritual for me. It is the solitude that I enjoy. My porch is one of my favorite places and a place that brings me much closeness to my God. Being able to get extra weeks out there was very special this year. The time renews my soul before the days work begins. My life of giving care to others is draining and my porch is where I refill my soul. So my blog stood silent, until today when I finally woke missing writing as much as I had missed my porch over the long Winter months...Welcome back to my crazy, loving, God filled life. I missed you.

Friday, April 20, 2012

Changes & Blessings, part 5

As I drop Gwenn at my friend's house, her daughter agrees to give up her AG catalogues for Teale. Leaving Gwenn in trusted hands, I know I could be hours. Emergency rooms are not very efficient & if Teale isn't seizing we will be low on the priorities. When I get to the hospital the catalogues calm her, she flips through them, excited to have new ones. Because she only uses her left hand, she braces the catalogue under her right arm, the tension shows in her arm. Her arm with cerebral palsy tends to "contract" when she is concentrating hard. It gets tight, bending at the elbow where the IV is in her arm, setting off alarms as the IV gets cut off. The alarm can't be stopped by us, so the nurse comes in to reset it. But over and over again this happens as Teale enjoys flipping through the catalogues. We try to explain why this is suddenly happening to the nurse, but whether she understands or cares I am unsure. All she knows is the alarm keeps going off and it is interrupting her work. I try to help hold the catalogues, so Teale's arm won't contract and cut off the IV, but Teale is independent and strong willed. This could go south badly if we don't come up with a solution. I brought her portable DVD player and DVD's, but she wants nothing to do with it. The nurses request a urine sample to see if she has a UTI or her electrolytes are off. This has gone well the last few times with me, so I'm hopeful I can get it done. I'll spare you the details, but let's just say Teale is a big girl, so trying to get a cup under her is tricky, but I do it. This is the last test, blood has been taken too, so now we just need results. I have been there awhile now and have yet to see a neurologist. Mark tells me he had been told there had been a stroke victim admitted and only one neurologist is on staff right now, so there is little chance we will be seen soon. After talking to a couple people about this and the fact that an EEG will not be administered today, we start to debate leaving. What's the point of sitting there when nothing is being done? The seizure like activity Mark had been seeing has long since stopped. I am frustrated and realize going home may be fine, but things could turn at home. There is nothing worse than leaving, only to have it happen again at home. Teale's doctors had wanted an EEG done because they were concerned. This is where medical care makes no sense to me. Teale's doctors know her, they know us, they should have a say in such matters. ER is it's own domain though, they do what they want, not what your doctor thinks is best. Teale's doctors are texting us, they say they have requested an EEG, but again, the man power in ER is low, so it probably won't happen. They can make a suggestion, but ER does not have to follow through on their suggestion. Mark and I say we want to talk to neurology, so we'll wait. Shortly after our "pushing" to see the neurologist, Teale starts getting agitated. She has waited too long and is "coming out" of whatever had been happening to her body. Her loopy behavior is dissipated and she is becoming our feisty child again. She indicates to Mark and I she is done and wants to go home. At this point we tell the nurse we don't think we can wait to see a neurologist, Teale is  getting anxious, so we want to be released. Ironically the neurologists show up and their opinion is that Teale had been in a Lamictal toxicity from the slight increase we had been advised to do on Friday. I argue this much, as it makes very little sense to me and sounds like a scapegoat. Her blood level had been taken shortly after she took her morning dose of Lamictal. Our protocol is to get a blood draw to check levels first thing in the AM before taking her morning medicine. This is called a trouth blood draw. The level ER took has nothing to be compared too, we don't know what her level is after taking her medicine. Basically it turns into a "whatever" situation. We can't "win" the argument and the one test we had wanted (an EEG) they do not deem neccessary. The advice is to now lower her medicine back down to her original dose. Teale is indicating she wants the IV out, so I ask for the release to be given and to get out the IV out ASAP because my strong willed daughter will pull it out. The staff leaves the room, Mark and I talk to Teale about not ripping out the IV and assure her a nurse will do is soon. But, Teale is Teale and my warnings were not strong enough, so Teale takes her release into her own hands, ripping out her IV. Shortly after we are released, released from many hours of frustration and unanswered questions. This is going to be a long "vacation week" I think as we leave the hospital.

Sunday, March 25, 2012

Changes & Blessings, part 4

And I did, I listened most of the night, I woke several times and I slept very little. She made it through without a glitch. I thanked God and our doctors as she walked out of her room the next morning. The "emergency medication" has worked well. We give her a form of valium before she goes to sleep on nights that her seizure threshold is being espially challenged. We now know some of the signs of her being in danger and the valium prevents the seizures when Teale is most venerable. We joke that the other person who needs a valium on these scary nights is me. But of course I need to stay alert and on my game, so I will not even have a glass of wine to settle my nerves on such nights. Mark doesn't or at least never has awoken when Teale is in a seizure in the middle of the night. It has always been my Mother instinct that has suddenly been startled awake to hear the awful sounds. That is one of the many things that I think about when I have been away from home overnight. I always ask Mark to keep the monitor close & to turn the volume up. I have been away from home alone very few times, but the needed breaks are often a catch 22, as the stress of being away is there too. I worry much too much. The day after the seizure was Saturday and all went relatively well. Teale was a bit grumpy and moody, as is often the case the day after a night we have given the valium. She seems unsettled, tired but won't rest. We get through the day and night falls again. I am anxious to get to bed, fatigue from worry and lack of sleep is hitting me hard as the evening comes. We decide to give the valium again as the medication levels have not had enough time to increase. We know this means the next day Teale again will be crabby, moody, tired, but we also know a seizure can be life threatening for a child like Teale. I sleep a bit better, mostly out of exhaustion, my body does what it needs. The monitor still a bit louder than usual, but I am less worried about another seizure coming. Teale wakes early on Sunday, anxious to get out of the house, Mark and she often hit the local grocery store on the weekends together. Mark likes grocery shopping and for the most part so does Teale. He is not gone long when I get a disturbing text "She fell over on someone. We are now upstairs sitting and having breakfast." I call Mark for details and my heart sinks as he describes Teale's strange unsteady behavior. The description sounds neurological to me and I decide to call her pediatricians office. While I gather information and talk to the doctors another text comes in from Mark. Teale has vomited at the store, another neurological sign. Mark now believes Teale is in small multiply seizures and we are quickly directed to get to the emergency room at the hospital. I begin to work out what to do with my daughter Gwenn who is just nine years old. My Mother in law also lives with us and needs care too. A whole day away would mean she would not eat or drink anything on her own. Her ability to take care of herself has declined badly, so I get in touch with Mark's brother asking for help. I need to get to the hospital also. Mark should not have to be alone, ER with Teale is a tough place to be. Teale has vomited on her clothes, she has nothing to keep her occupied while they wait and her behavior in such situations can be extremely challenging. I have already asked for prayers on my Facebook page and friends offer to take Gwenn. Beau is out but I reach him saying I may need help. My kids and I have a deal, no matter where they are, if Teale is in trouble, they want to know. One time Teale had a seizure at church, we had to call an ambulance and Beau was in Sunday school at the time. He just knew in his heart the ambulance was for Teale and he was upset that Mark and I had not pulled him from Sunday school to let him know. So as I spoke calmly to Beau, hoping this was nothing, I knew his fear was probably high also. Uncertainty, it is our life, but in these times it is heightened. Soon after Mark gets to emergency, Teale vomits again, this time all over her treasured American Girl Doll catalogue. She goes into a rage, it is covered with vomit and Mark has to throw out the catalogue. The rage itself is not her normal kind of rage, causing Mark more alarm. Mark asks me to try and locate another catalogue, so  I throw the request on my Facebook page, knowing my dear friends will find me one if at all humanly possible. If there is one thing I have learned through the use of social media is how much people care about my family. It is an amazing thing and it reaches far and wide. I am often overwhelmed by the support and love we receive, both publicly and privately. I have had many relationships forged because I am so open and honest about our struggles. People may not be as willing or as able to share their challenges, but they have told me that they appreciate my sharing our life. It is not always pretty, there are things I have shared that others may find appalling. But it is almost like my calling in this life with Teale. I feel like her life, our lives with her, teach much. It was not very many years ago that you would not have seen a kid like Teale in the community. You would not have know the families pains, joys and challenges raising a child with multiple issues. So sharing our journey both in this blog and on Facebook has been somewhat therapeutic for me. It connects me to people like me and it teaches people who otherwise would not understand. The offers come in on my Facebook page and privately texted to my cell also, many are trying to find me an American Girl catalogue to take to Teale at the hospital. Moments like these that may not mean all that much in an everyday life, but I see the amazing love of those who want to help my daughter. ~to be continued

Sunday, March 4, 2012

Changes & Blessings, part 3

Mark gets home and I feel much relief. He is home not only for the night, but for the weekend and The Presidents Day Holiday on Monday. If we get through the next few days without a seizure, her medication level will have increased and hopefully with that, she will then again be seizure free. It has been almost two years since Teale's last seizure and even that was a fluke. It was a horrid mistake, I mostly blame on myself. I manage medications, I get the prescriptions filled, refilled and the weekly pill boxes supplied with what current medications Teale is on. When I filled Teale's weekly boxes that week, almost two years ago, there was only enough of her seizure medication to fill a few days. I filled the rest of the weeks medications anyway, figuring when I picked up the seizure medicine I would add it to the other pills in the box. I had done this same thing several times and it had always been ok. Well, there was not another refill on the seizure medication bottle that week, the doctor didn't get back to the pharmacists in a timely manor, life got me and I forgot. Also we had help for Teale in the house often back then, so between Mark, myself and the respite help, one of us gave Teale her her medications out of the boxes I had filled. The trust was that I had filled correctly, so double checking the handful of pills being dispensed was uncommon. Often it was a tough thing to get Teale to take the pills, so the focus was on her cooperation, not on what was being given. Somehow we all missed that the seizure medicine was not in the several pills we were dispensing to Teale. I woke in the middle of the night to Teale seizing and it hit me that I had never picked up the medication and filled it into the rest of the weekly pill boxes. She had missed at least two doses and maybe it was three. The guilt of that still haunts me. She had been seizure free awhile at that point and I blew it. It was horribly unresponsible of me, my daughter counts on me and depends on me and I caused that seizure. But that was almost two years ago and as a result I have changed how I fill medicine boxes and we double check what we are giving. I may fill without having a whole weeks supply still, but now I write it down on our weekly calendar when the particular prescription must be picked up by. Filling the weekly boxes is a big job, her medications are constantly in flux and it has had a certain fear to it since that mistake. There are medications we "play" with depending on how she is doing. We have full doctor permission to change some things on our own as needed. Then there are the ones that are a constant and must remain stable, given to her at approximately the same times daily to ensure the best consistent levels of the medication in her blood. Teale has blood draws often to check these levels, that is how we knew her seizure medication was slightly low when I talked to the doctor about the day seizure. Because of it being slightly low, we raised the medication by 50mg. A very slight increase if you consider she is on 500mg two times a day. But the hope was that it would be just enough to stop the seizures. I already added the increased dose to her boxes, knowing after a week on this dose we were to increase another 50mg. The evening went as usual that night, dinner, Teale's nightly car ride with her Dad, TV, take her medications, pj's, stories, etc. As we put the girls to bed I double checked the monitor in their room, praying it would wake me if God forbid she go into one of her grand mals in her sleep. The stress of a child seizing is huge for any parent who lives with a child diagnosed with Epilepsy. It is a horrid thing to watch your child in, for me I believe it is mostly the lack of control. I can not control seizures, I can not make them stop when they are happening and I hate that. I have to watch it played out, worked through, as it may be. Teale doesn't seize for seconds or minutes, she has seized an hour and a half. The shortest on record grand mal for Teale has been about thirty five minutes. Imagine watching your child seize for that long, not knowing when or if it will stop. If the emergency medications do not work at home within fifteen minutes, (every time so far, they have not) we call 911. It is wretched as we wait for the ambulance crew to come and take Teale. Always it has been the middle of the night, always I am startled awake by a sound that isn't quite right, running to her room to find her seizing. Vomiting and loss of continence accompany the seizure. The fear she will choke on her own vomit in her sleep, the fear I will not awake to hear my daughter in trouble. These are stresses I live with. This is one of those things that when someone says to me "everyone has problems" that I think about. Do you live with a constant fear of the loss of your child in their sleep? My sleep is sporadic, I sleep in fear often, I wake in fear too. Did I not wake in the night and she had a seizure and choked to death? These are real thoughts I have, this is how I feel. When Teale sleeps in, when she sleeps later than her usual, I listen to the monitor for her breathing. If I can not hear it, my heart jumps, panic may set in, I start to question if I slept too hard. I can't tell you how few times Teale has slept late in her life, but each time both Mark and I were scared to open her door. We were scared to wake her if she was just sleeping and we were scared at what else we may find too. Teale has cheated death many times, at birth and several times since. She is my miracle child, who I have put much effort into. I refuse to lose her to a seizure. As I go to bed that night, I know I will not sleep well. I know I will keep the monitor a little louder. I know I will wake often and reach for it to listen to the sweet sound of her breathing...~to be continued...

Sunday, February 26, 2012

Changes & Blessings, part 2

Teale comes off the bus at 3:00pm and her first words are "I wet and the teacher is mad at me." Her "reading" people can be very off. I'm sure her teacher was concerned, not mad, but with profound hearing loss, she often misses much when reading people's feelings. She obsesses on the fact that she wet, she doesn't have accidents and I can see this confuses and upsets her. Teale can't understand that she had a seizure and that is why it happened. I realize I may never be able to explain this to her. As she takes her wet clothes out of her backpack to show me, I just try to tell her "it's ok, you didn't mean to, you couldn't help it," anything to help her. Times like this make me sad, she understands it was "wrong" but she just can't get that she had no control. Hopefully she will move on, but I know Teale and she is sure to bring it up again when her Dad gets home. We do her afternoon medicines and I remind her there will be no school all the next week, this will distract her. She squeals with delight, a wicked high pitch, very loud squeal and clapping like a toddler. I often feel like that it just what Teale has been stuck in developmentally for years, she is much like a big toddler. After school Teale often settles into snack, TV, computer or drawing. She obsesses on the same things, but slightly rotates them. The usuals are Justin Bieber, a movie of some sort, coloring or cutting up paper, she loves to go shopping of any kind and or she carries around a certain doll or stuffed animal. Right now it is the American Girl catalogue she has been stuck on. She asks where her  catalogue is because she left it at home during school. My mind immediately races, hoping I find it easily, so no meltdown occurs. This is one of the issues of a child like Teale, she gets obsessive about a "thing" and if you can't find where the "thing" is fast enough, you are in huge trouble! I can't begin to tell you how many nights we have been woken with her flipping out because the catalogue, doll, stuffed animal, whatever, has gone missing in her sleep! This is a constant fear we live in, a favorite "thing" getting lost or broken can create total havoc in our lives. As we find the catalogue on the couch easily, Teale settles down to look through it. Teale loves holidays and or the anticipation of the holidays more than any other person I know. She talks about her Birthday coming from the moment it ends, every year. Right now she is  stuck on what doll she wants, flipping the pages over and over again and asking me "For my Birthday?" I leave her looking and go to the kitchen, I have more phone calls to make. Mark wants to know how Teale is, the doctors are still talking about a plan for tonight, I need to get dinner ready and Gwenn walks in the door from school. Mark's Mom lives with us and I need to wake her from her nap and take care of her too. Our life is full, we are busy, but who isn't? Taking care of people is a major part of me, I've been doing it for many years. I was a nanny when I was young and then I opened an in home day care. Mark joined me in the daycare business shortly after we were married and we ran it for over fifteen years together. My children, but especially Teale, have taught me the most about care taking. Now with Mark's Mom living here, I have learned much about geriatric care too. Working with doctors has become a very important part of my life, I have learned to be strong in my beliefs for the needs of the person I am advocating for. I don't back down easily when I believe something, but have also learned to work with the team of doctors in my family's life. The nurse gives me the doctors advice and thoughts on the seizure Teale had that day and we discuss ideas for making it through the night again. I deal with many calls because there is much back and forth between the nurses relaying information and then getting back to me after talking to the doctor. I have somewhat gotten used to this, first I talk something over with the nurse, then she takes my information back to the doctor, then the nurse calls me back with ideas from the doctor. I may counter with my own thoughts and it may take another call or two. Today is has taken at least four calls back and forth. In the end we decide to increase her daily seizure medicine slightly and add a preventative medicine at night. Most likely just for this night, but we have used it before and may need it a couple of nights, to be safe. It is a form of valium and it helps Teale to not go into a seizure at night. Her seizure threshold is higher while she sleeps (her brain going into the sleep cycle is part of her Epilepsy) and especially when she is sick. Our seizure plan has been to give her a valium before bed, if she is sick. She has one common factor in her seizure disorder, sickness brings down her threshold considerably. So although she is not sick, with the brief day seizure, we will give her the valium tonight. I feel fairly confident in this plan and pray for the best. Mark will be home soon, at least now I have something to tell him.  Teale sits nearby me flipping through her American Girl catalogue and asking when her Dad will be home. It is all so surreal, she has no clue what is going on with her or how much I worry about her.   ~to be continued....

Saturday, February 25, 2012

Changes & Blessings

Last Friday I received a call from Teale's school. The nurses voice said "Everything is fine, Teale had a brief seizure." My heart dropped, "What happened?" She went on to describe the seizure; brief, staring, eye movements and a total loss of continence. "She came out of it on her own and has been changed, she seems ok." "Do you want me to come for her?" I asked, half in shock. Teale had never had a seizure at her new school. Basically Teale doesn't have day seizures, period. Her seizures are nocturnal and extremely long, an hour is common.  So this was "different" and in the seizure world, different is scary. Changing seizures can be very alarming, it can mean many things. I know a couple families who lost love ones because the seizure disorder changed suddenly and the medical community could not help get the seizure under control. One of our friends in our church lost his daughter when she was just thirteen years old. This was before we were friends, but he has told me the story. Puberty can wreak havoc on on a child's body, changing seizures for the better or for the worst, as all those hormones course through the body. Fear rushed through me as I couldn't help but think of my friend's daughter and the extreme pain they must have experienced losing her. He often looks at me in church with the most compassion and a hug from him is not just a hug, it is a bond, he understands. Many people in times of crisis are very kind to us, but those who live or have lived this kind of a life, there is a connection like no other. Back to the story. I was glad when the nurse said that they were comfortable keeping Teale. I knew my afternoon was full and now I would be on the phone much to Teale's doctors discussing this latest change. My first call was to Mark, who didn't answer, so I left a message, trying to not sound alarmed, but knowing my heart was heavy. When Mark called me back, I broke the bad news. The February break would be starting the next day, which made things both good and bad. I would be able to keep an eye on Teale, but a big seizure may be coming. The nocturnal seizures cause Teale many issues. We have had weeks after one of her big seizures that she is "very off." She is exhausted from the experience for days and often also very violent. There is more understanding since even nine years ago when this all started in our life with Teale. Doctors now understand that the electronic brain waves get "scrambled" in a huge seizure and can take time to get back to normal. During the week that follows a seizure, Teale is often very tough. So all this goes through my head as I think about the school break coming and wonder what is around the corner for us. Mark and I share a saying, "She keeps life interesting." As I hang up with Mark, he says that to me. I contemplate this, interesting life, that is for sure. The next calls are to doctors. We have a phenomenal relationship with our pediatrician, so I text him. The next few hours I will spend working between the neurology office and the pediatrician office, trying to come up with a plan to make it through the night. We decide to increase Teale's seizure medicine very slightly, as her blood draw level a  week  earlier had been a bit low. I feel a tad of relief that this may be a reason she had the day seizure. The thing is, as is everything with Teale's seizure disorder, we will probably never really know why this happened to her. Her increased weight from the anti psychotic could be a cause for many reasons. Her weight has caused her sleep apnea to be worse, sleep deprivation causes seizures. Her increased weight naturally decreases her medication level, so does she need more as her weight increases? The teen age hormones changing her body could also be the cause. The doctor we had for many years in neurology had retired last spring, so we were working with a new doctor. I had loved our old neurologist, an older man straight from Italy. Years earlier we had taken Teale to John Hopkins Hospital. Her seizure disorder was very concerning and we were actually considering the operation that would remove the part of her brain that was seizing. Mark's cousin is a very promenade doctor who works at John Hopkins. He had helped us get Teale evaluated there. While we were there, the doctors had recommended the doctor in Rochester that we had for the last 9 or so years. He was compassionate and he understood that his "part" in Teale's medical care, was just that, part of the whole picture. He treated Mark and I with respect and as a vital part of her caring team. I was not getting the same vibes from the new neurologist Teale was put in the care of. The attitude was more of a "my specialty" is the most important and the only issue we should be concentrating on. Working with a doctor who didn't get the intricacies of my daughter would not work for me. Teale's seizure disorder is a part of Teale, not the whole of Teale. We live with her and her mood disorders are the most challenging part of her, something the new neurologist has yet to understand. The hard work of building a new relationship with a new neurologist added to my stress. "She sure keeps life interesting." ~to be continued....

Tuesday, February 14, 2012

Valentine's Day

I woke way too early this morning, hoping I could curl back into Mark's arms and fall back asleep, but my mind raced. I started thinking about what I need to do, what I want to do and what I wish to do today. It's Valentine's Day and my husband Mark took the day off to spend with me. Time is truly the gift I appreciate most in our busy life and today we will give that to each other. We have had twenty three Valentine's Days together, I remember some, but not all of them. We were engaged on Valentine's Day, so I remember our first Valentine's Day well. I remember memorable times we have spent together, like the inn not far from home that we stayed in for a Valentine's Day get away. I remember last year (& probably always will) because Mark surprised me with a trip to see my lifelong girlfriend in Texas. I never saw that one coming, so when I opened the sheet of paper with my plane reservation on it, I fell completely apart. You see, Mark is not great at holidays, I know he will agree and not be hurt by my sharing this truth. I could analyze this to death; his family didn't put any importance on holidays like my family did, he sees holidays as just another day, he's a guy? Who knows why, but Mark has "blown" many holidays in our twenty four years together. He has missed big ones and small ones alike. His planning is poor and often he is running out last minute to get a gift or a card. Sometimes he just "forgets" altogether and I have felt hurt by his "forgetting." That is probably why last years gift blew me away, he planned it out so well. He called my girlfriend, he arranged dates with her, he took days off of work to be home while I was away, he bought the ticket and knew he would be on his own with our challenging family while I was enjoying time with my friend. The amount of planning was impressive and the gift was thoughtful and caring. Mark had truly "gotten me" with that one and he knew it. When Mark went back to college in his early forties, he took a class on interpersonal relationships. He was assigned a paper to write about himself, something that he had needed to improve on and the action he had taken to improve this about himself. He came home from class and shared the assignment with me, saying that the only idea he had was how he often "failed" at holidays. The problem was, it was supposed to be something that you had already improved about yourself and he knew he had not. There were times Mark was thoughtful and planned for holidays, but it was very inconsistent. I think that is partially how "day dates" began, I was much less apt to be disappointed if time was given to me. We could plan a day trip, a breakfast or a lunch out, my expectations were less, because the time I was given was more. We all have things in our marriages, in our relationships we wish to change about the other person, but sometimes it is more important for us to switch our way of thinking. As our relationship has matured (as in aged!) we need less material things and appreciate the friendship even more. Maya Angelo once said, "I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel." What Mark has done over the years on holidays is mostly vague, memories of gifts are scattered in the confounds of my mind and throughout our home. What is more important is the way he makes me feel, day in and day out I feel loved. Happy Valentine's Day Mark, thank you for the love.

Thursday, February 2, 2012

My Husband is Puerto Rican

Have you ever been in a situation where you suddenly find out the person you are with is not who you thought they were? A friend of mine while we were driving through the city, said "Lock your door, this is the Puerto Rican section." My response, "Did you know my husband is Puerto Rican?" She laughed, not just a little, but a lot. There are pictures of my husband on my blog, you can see why she thought I was kidding, but I wasn't. Mark is about 6'5" on a good day, he may be shrinking with age so his height seems to vary now! He is pale and a strawberry blond with green eyes that change color often between a greener green and a blueish green. His shoulders are broad, which is good because he carries much weight on them. His look may not be of a stereotypical Puerto Rican, but his heritage is. Mark's Grandfather came here as a young man to build a better life for himself. He was always thought to be about sixteen years old in the stories passed down, but recently the family has discovered he may have been even younger. Papa, as Mark's family called him, came with a group of boys and worked hard for themselves and their family back in Puerto Rico. Fast forward one hundred plus years, his family has thrived. Mark's Mom has four siblings, three of which have gone to college, pursuing higher education was important to Papa. The youngest sibling, who did not attend college formally,  is diagnosed with developmental disabilities that prevented him from pursuing higher education. He, Uncle Steve, lived with his Mother and Father, protected from the outside world in a small upstate town. Papa's wife, Mark's Grandmother, died when Uncle Steve was a young man. I believe he was only sixteen years of age. So Papa and Steve took care of each other until Papa's passing in the late 1980's. At which time Uncle Steve moved in with his big sister, Mark's Mom. At the time Mark was living at home and attending the local community college. So to keep Uncle Steve occupied, he tagged along with Mark to college most days. There he was included in classes or because he is a talented pianist, he'd would play piano in one of the rehearsal rooms. That is one of the many stories about Mark that made me fall for him. Here he was, attending a college, having fun as a young adult, but thought nothing of having Uncle Steve tag along. Now remember this was LONG before our daughter Teale was born with severe brain damage and developmental disabilities as a result. Mark has truly, always had a good heart and a sense of all people are deserving of respect. I still love the image of Mark in class, Uncle Steve by his side and the camaraderie that Uncle Steve and he shared. A man who had been protected, somewhat isolated from the big world, but Mark chose to welcome him into his life, exposing him to much. I love this about Mark, his pushing Uncle Steve to step outside his protected world, giving him an experience we often still talk about. It is like the good old days stories, when Uncle Steve went to college with his nephew. By the way, I met Mark and Uncle Steve during this time. Mark and I met on a local co-ed recreational softball league. Mark brought Uncle Steve to the games and he became part of our team. (to read more about our meeting   http://wearegodsentertainment.blogspot.com/2011/07/mark.html)  So, the long story short, Mark is one quarter Puerto Rican. Looking at him you probably would not guess it, but I have found myself in many interesting positions because of our looks. Many people seem to assume Mark and I are "just typical Caucasians." They have said things to us like I experienced in the car that day. I know Beau has won many bets when people doubt his Puerto Rican heritage. When Beau was in elementary school they had International Day. All the kids dress up in a costume of their heritage, Beau picked Puerto Rican. The kids marched in a parade behind the sign of where they were from. Beau, my blond haired, blue eyed son, marched with one other girl behind Puerto Rico. I was in the hallway watching the parade when he came by and could hear many people say "How is Beau Bradley Puerto Rican?" Many also asked me directly, but even then they questioned what I told them, that my husband is Puerto Rican. Yes, my husband really is Puerto Rican, so maybe our family is just one more example of  it's best to"Not judge a book by it's cover!"

Tuesday, January 31, 2012

Teacher, do you understand?

Do you understand I have trusted my children to you?
Do you understand that our children look to you for guidance?
Do you understand your words have amazing power?
Do you understand how many lives you touch?
Do you understand the hurt you caused?
Do you understand how your ignorance makes you look?
Do you understand how you made my son and probably others feel?
Do you understand you were wrong?
Do you understand my daughter and her community of people deserve respect?
Do you understand the pain and the challenges families like ours live with every day?
Do you understand?

Education Needed

Sometimes I am amazed at what my children teach me. They teach far more to me than any book or teacher ever has. The other day my son, Beau told me a comment his teacher said to his class. First of all, I want to set the stage. Beau is in eleventh grade at a public high school. The community we live in is considered above average in many ways. The houses, incomes and education levels of residents are all above national mean. The two local public high schools have been on the top 100 high schools in America list by US News & World Report several times. So in a community where standards are set high, I personally expect more. I expect more from the teachers in my children's schools and in the residents of the community. I know they are well educated to teach my children and I trust them to do their jobs well. Teachers in this community often excel expectations that I have. I believe a teacher has the responsibility to not only teach academics, but they also teach life skills and social graces. Teaching respect and tolerance of all people is my biggest goal for my children. Respect and tolerance sum up life to me. If you have the skill to know there is more behind a person than what you see, you learn to understand that not everything is as it appears. We live this every day. When Teale melts down in a store or rages in public, we can only hope the people we encounter understand that there is much more to her story. She is not always the raging person they see, she has depth and joy that do not show in those bad moments. This does not mean she should not be respected. I expect my children to understand that they are incredibly fortunate for many reasons. I teach my children this in both words and actions. There are children in our city, not fifteen miles away, who live in poverty. Some of these children have parents in jail and relatives who have died in street fights. I have volunteered in the city schools and had children tell me that their Dad was shot to death or their Mom is on drugs. The disparity between my community and communities just miles away is overwhelming. But, I have taught my children about these things and have exposed them so that they understand how fortunate they are. Ironically, in this community, my children are the less fortunate, we have had major times of struggle. We have financially been the less fortunate. My motto has been "We may be poor in money, but we are rich in love." Hearing myself say that, I am not sure I like it though. Am I teaching my kids that we also wish to keep up with the Joneses of our community? I hope not. Back to the story, with all I have shared being taken into consideration. This week my son, Beau, shared with me that one of his teachers said "You could pass last years regents exam, if you rode the short bus and wore a helmet." While you pick your jaw up off the floor, I will give you my reaction "ARE YOU KIDDING ME?" I was in complete disbelief! Beau is the sibling of a sister who rides a short bus and you know the teacher did not know this when she said it. BUT that does not mean it is excusable. If she knew, would she have said it? Does that even matter? No it does not, because it goes straight back to my personal core beliefs, respect and tolerance. Mark and I are disgusted and we will deal with this in some way with the supervisors of this teacher and with the teacher herself. I will push for disability awareness training for this teacher and I will let her know how hurtful her comment was. Beau taught me more by sharing this than he probably realizes. And I plan on having that teaching continue by helping to spread the word and raise awareness. What you say impacts how people see you and others. Respect and tolerance, it's actually kinda simple.

Friday, January 27, 2012

The Week Before Christmas, part 5

I found a place to hide out, where Teale couldn't see me. Some of the men from the fire department were in a doorway, so I used them as a "screen." They would ask me if they were in my way, but I would explain that they were helping me. Teale has vision loss from her brain damage, the right side of both her eyes are blind. This is not because her eyes don't work, but because her brain damage causes her to not process sight on the right sides. Most people don't get this about her, she presents well, doesn't use a cane and usually doesn't miss much. There are the times she walks into people or objects, sometimes she misses steps or level changes on the ground. In general Mark & I cue her well, it just becomes part of your everyday thinking to say "step, watch the pole, look up, look down." But I must admit I also use her vision loss to my advantage sometimes. I have positioned myself at events where I didn't want her to see me, on her right side. When this event was outside, I stayed on her right, but now that it moved in, there was no option for that. So knowing she is not expecting to see me here, I use people as screens. I can see her face, controlled anticipation as to what is next. Teale is obsessed with gifts and she thinks there may be one given to her today. The gifts are on stage and I'm sure this is driving Teale crazy, but she sits patiently with her class. I love and hate how she can do this. Mark and I rarely see her patience. She is so different with us, much more demanding and little patience, if any! The gifts will be distributed to the kids, but first there is singing, jokes told, speeches made, she sits quietly, I don't see her utter a word to anyone. At home Teale never stops talking, so her show of restraint also bothers me. How Mark and I have wanted to be flies on a wall of her educational settings these last four or five years especially. When she started shutting down at school, it was tough to believe. Our daughter not talking, all day? The thought was so absurd to us, to family and to our friends. People close to us who knew Teale literally doubted what we told them. We had family treat us like liars when we told them Teale doesn't talk in school anymore. There were years of this that we didn't even know about. We had hints of it from other kids who would tell us, but some of Teale's teachers chose not to share with us her silence. I also believe new to her teachers may have actually believed it was normal for Teale. She began the slow decline into silence in the third grade. It was the year Teale became aware of her differences. She stopped being proud of her classwork she brought home and started crumpling it up instead. She would throw it into the garbage, telling Mark and I not to look at it. It was heartbreaking to watch as she slowly lost all her self esteem. We saw other signs too, an active child, Teale had determination when it came to many athletics. Although she has cerebral palsy and her right side is weak, she never had let that slow her down. She only uses her left hand and arm, her right leg and foot are not as strong as her left. She walks with a gate that tells you something isn't quite right, but she is a fighter and has always had spunk! Teale has played many sports, learning how to adapt to her body, she is quite athletic. She would practice shooting baskets at our basketball hoop constantly, making the shot far more accurately than I ever did. But at some point we heard she no longer would participate in gym class. She would watch the typical kids, but would not show her abilities at any of the sports they played. As Teale started shutting down, Mark and I began rethinking integration. Maybe she needed to be with only children like her in order to feel good about her abilities. It was the beginning of the end, third grade killed Teale's self esteem and she slipped into a controlled silence at school only. It would take years before we would win the battle to get her into School of the Holy Childhood and a setting where we thought Teale would feel accepted. As I looked at her sitting there so silently, part of me was proud, she was so well behaved, but part of me just wanted her to be "typical." I remember assemblies as a seventh grader, my girlfriends and I would be whispering and passing notes. Sometimes I just want Teale to misbehave a little, as wrong as that may sound. I want her to talk when it is appropriate, but I also want her to show excitement by talking when it is not. How I wish she would participate in life more, show emotions to her peers and her teachers more. She is just so controlled, sitting there taking it in. I wondered what she is thinking? In this school, Mark and I are sure we will finally get our daughter back. We can finally hope to see her come out of this stubborn, controlled silence she has forced herself into. I have started to see little signs of Teale coming back to us. She has talked more in this school than in other settings over the last four years. She talks about friends at home. Teale is again proud of the work she brings home to show us, to both Mark and I this is a huge change for the better. To have her be proud gives her more reason to want to learn and do better at her work. I get such a kick out of her coming home, ripping something out of her backpack and  shoving it in my face with a proud smile. She is coming back to us. Last spring when the school principal at School of the Holy Childhood called to give us the news of Teale's acceptance she said "We are going to get your daughter back!" I remember the tears falling down my face as I stood  motionless in my kitchen, knowing she could not have offered me a greater gift. For four years we had watched Teale's decline, how I looked forward to seeing her blossom again. So as I watched Teale from afar, I looked for signs of her comfort in this setting. I was getting the opportunity to be that fly on the wall and although it wasn't perfect, I liked what I saw. Teale seemed comfortable, I felt the warmth and it felt safe. But the thought that dominated my head was "next year." I was sure that next year at this same event I would see my daughter, being my daughter. I was sure as I watched her that next year the principals prediction would come true, we would have Teale back!

Tuesday, January 24, 2012

Do You Understand

Do you understand my heart aches every time I see your frustration
Do you understand I cry myself to sleep when you are hurting
Do you understand my anger at the people who should of, could have and didn't
Do you understand the bruises you cause, just make me stronger
Do you understand how much I admire you
Do you understand that you have taught me far more than I have taught you
Do you understand I will always fight for you
Do you understand the depth of my love for you
Do you understand

The Week Before Christmas, part 4

The men and women in blue fill the hallways, greeting everyone. Their warmth and sincerity felt like a thick cloud in the air. Big smiles on so many faces and the sound of laughter booming all around me. Over and over again, Merry Christmas could be heard. I loved how it was ok to say that, after all it is a Catholic run, private school. To me it was one of the benefits of having Teale here, rules were not the same as they were in public schools, there was an actual Christmas tree in the foyer. To say Merry Christmas, to have a Santa wandering the hall, to be able to talk about Jesus and God, it all felt right to me. As the firefighters walked to a room assigned to them for taking off their outerwear, I see a Mom I have met at meetings and ask her what will happen next. The cafeteria/auditorium is set up with chairs facing the stage. As everyone floats around the hallways, I realize my camera has died. I debate with myself if I have time to run home and get my charger. Knowing that being without a camera would probably break my heart, I take the chance of missing something and go. In the car I call Mark, but my words are completely inadequate, the feelings are too difficult to describe. Besides, I can tell he is distracted, it was the day before Christmas break and I knew he was swamped. I hang up disappointed that I can't share this experience with him and that he has no clue what he is missing. I hope my pictures and videos will do the day justice. I hope that when he gets home I will be able to share what I have felt today. I run into our house, grabbing the charger and throwing on a little make up. I had not planned on seeing people when I left earlier that morning. I was going to hide in the background and then quietly slip away. Now that I am going to stay, I decide to spend a few minutes to try and look  better. Lack of sleep had been catching up to me and dark circles were dominating my face. I threw on some concealer and hope I didn't look as exhausted as I feel. I also check on Mark's Mom, who lives with us. She is declining in health and needs much care. I bring her drinks, food and make sure she takes her medicines. She also needs reminders about personal care, doctor appointments scheduled, medicines managed and much more. It was a big decision to take Mark's Mom in, but it makes Mark happy. He is grateful to me for caring for her and I know I will always feel like it was the right thing to do. Because it was December 23rd, Mark's sister was coming to get Mom for a visit with her family before Christmas. We would all get together next week sometime after all the craziness calmed. So, I made sure Mom was packed, that she had the most  necessary items and was getting ready before I headed back to Teale's school. I'm often balancing much and, in my opinion, I mostly do it well. My house isn't perfectly decorated or as clean as I would like, but I do balance much else. Mark and I are a happy couple, even with the stressful lifestyle we live. We make much effort to spend time together and still have dates and fun alone. We take good care of our multiply handicapped child, his declining Mom plus our two other children. I still volunteer, not as much as I would like, but enough to help me feel like I am giving back a little. Mark works a job that can be very stressful, but it also can be very flexible for our complicated family. We often have many doctor appointments between Teale and his Mom.  Also there are many educational meetings for Teale especially, but in general, for three kids. Some are important for Mark to be at and often his job is flexible and accommodates such needs. Unfortunately today was not a day they could be flexible, so I am heading back to capture it for him. As I pull back into the parking lot, I again feel the overwhelming excitement in me that we are really here. We are really part of this amazing place and Teale finally has a school that we all feel a part of. I open the door and tears fill my eyes as I watch all the good going on around me. One thought goes through my head, a statement the principal once said to me, "Welcome home."

Sunday, January 22, 2012

The Week Before Christmas, part 3

As I capture what I can on film, I wish Mark could be here with me. It's amazing to witness this event. This is one time I feel validated and filled with gratitude that Teale is in this placement. The faces on the kids light up as Santa, Mrs Clause, the firefighters and Rudolf walk through the crowd greeting them. Teale is shy, she won't be quick to show her excitement. Her sensory defensiveness will keep her at an arms length. While many children push their way to  shake hands or even hug, Teale will try to blend into the background. Sometimes it's like watching Teale fight an internal demon. She wants to be part of life, she wants to hug, touch, connect with others, but she just can not make herself do it. One of our big hopes is that as she gets more comfortable with who she is, this will change. Her self esteem was severely damaged in the many years of placements that were not a right fit for Teale. As I watch the kids, I can't help but hope that next year, Teale will also push her way to Santa. This year she seems content to watch from a few steps back and see her friends enjoy this. I can tell the firefighters are aware of some children being like Teale. They give time and space, taking cues from the kids. I so appreciate this in my life with Teale, pushing her never works. I appreciate the people we encounter in life who accept Teale as is. It is tough to deal with others feelings around how Teale is. She can get crabby at a moments notice, she can treat people we care about with total disregard. Teale is all about Teale, her feelings are what she displays and honestly, most of the time, no one else's matter. Don't get me wrong, she can show love and empathy too, but she is bluntly honest with how she feels. After greeting the children, the firefighters move toward me and I fight tears as they wish me a Merry Christmas. They will never know how hard we fought to get our daughter into this school or how much this means to me to witness. The tears are welled up in my eyes and I have a huge lump in my throat while I push out the words "Merry Christmas & thank you for coming." The sincerity of what I felt could not be transfered in those few words. I wanted to hug everyone of those brave souls. I wanted them to know the true gift of Christmas they were giving me in their coming to my daughters school. I was overcome with emotion, the outpouring of love, but also the respect. I could feel the respect these men and women had for our children. It is a tough place sometimes, to have people glimpse into your life, they may show compassion or it may come across as pity. Pity makes me sick, I don't need pity and neither does Teale. She needs respect that her journey is challenging, she needs support and of course, love. The men and women who came out to my daughters special school gave all those things. As everyone retreated to the inside, I rethink my day. I need to get some things done and had not planned on going to the event inside. Then I see the woman who had told me to come and she insists I need to see what happens inside. This is what life is, this is Christmas, not the errands on my mind, but this, the love and the caring I am witnessing. I follow the crowd into the school, wishing I tissues in my pocket.

Sunday, January 15, 2012

Before I Had You

Before I had you I believed parents of children with special needs had more control than they do.

Before I had you, I may have wondered why your weight was so high and why your parents were not teaching you healthy eating.
Before I had you, I may have wondered why your overbite was not being fixed by braces.
Before I had you, I may have wondered why you wore clothes that are much too big or much too small.
Before I had you, if I saw you do something impolite, I would have wondered why manners were not taught to you.
Before I had you, if I saw you with hair that needed washing, I would wonder what was so hard about bathing you?
Before I had you, I would have thought, if she were my kid, her teeth would get brushed, so they didn't get so discolored.
Before I had you, your teenage acne would have been controllable and you would not pick your face.
Before I had you, you would not rage in public and hit your own Mother, Father or sibling.
Before I had you, all children with special needs were simple and sweet.

Before I had you, I didn't understand.

I thought parents of children who had special needs just didn't care. I thought they hadn't taught. I thought they gave up too easily. I judged and I wondered why? I imagined you as my child, everything that bothered me fixed, because, after all it is just about my being in charge as the parent. Before I had you, I had control.

Thursday, January 5, 2012

Teale's Love of JB

It is hard to remember how it started, but I believe it was in school. She seemed to catch on like any typical preteen girl. Screaming at just the sight of him, watching Youtube videos constantly, singing along to "Baby, Baby..." We were thrilled to have her enjoying something very age appropriate and encouraged her in many ways. We helped her find videos, we gave her CD's of his music and we bought her different Justin Bieber items. She talked about him being her "boyfriend" and he became part of our everyday lives. I remember the first time I used Justin as encouragement for Teale. She needed to get on her PJ's, getting undressed and dressed is difficult for Teale because she only has use of one arm. There are parts of it she can do on her own, but like many parents, we have often fallen into the trap of helping her too much. I guess that night I was tired of doing everything and wanted to see if Teale could get her own PJ's on. Telling Teale "After you get ready for bed, I will put Justin on Youtube for you." she trotted off to her room. When she came out dressed in her PJ's not only was she glad she then would get to watch Youtube, but she was also very proud of her accomplishment!  I can hear her to this day "I'm going to tell Justin!" And so, that is how it began, JB became part of Teale's life and ours. His name would bring a smile, the sight of him a scream! Youtube videos would make her laugh and take her away to a fantasy world where she and Justin were friends. Teale would take her medicines easily, get dressed, brush her hair, brush her teeth, etc. because "Justin would be proud." I truly began to feel like he was part of our family, as he was talked about so often. Teale believes he is her boyfriend and will tell anyone so. One day in the grocery store, Teale stopped dead and whipped out her cell phone from her pocket. The cell did not have service, but being typical in some ways, Teale loved carrying it. She  looked at the cell in disgust and said "Oh, it's Justin Bieber AGAIN!" The woman near me heard Teale and couldn't contain her laughter either as Teale and I talked about Justin bugging her all the time. At her special school, Justin Bieber is part of her everyday schedule. If she does the activities asked of her, she gets a Bieber break! I can't begin to tell you how many times I have heard "One Less Lonely Girl or Baby." I can't begin to explain the countless hours Teale has lost herself with headphones on, as she swings in her favorite hammock listening to JB and singing along, when she thinks no one is listening. Teale has been alone much of her life, not literally, but she doesn't have any close friends her age. She hangs with us, her family and often watches as her big brother and little sister go off with friends. I'm sure Teale is lonely but Justin fills part of this gap for her, taking her away to a world where he is her friend. When the JB movie came out, Mark took Teale. I believe she saw it at least twice at the theater, loving the parts about when Justin was little the best. We have bought all the JB movies for home and there have been days that she will watch them incessantly, rewinding to her favorite parts. For her 13th Birthday a dear friend of our family bought Teale a full sized cut out of JB. Her excitement was contagious as we set up Justin in our home and he truly became part of our family. I have seen her move the JB cutout to be near her while she is watching him on Youtube. She has jokingly danced with JB and her cousins, laughing hysterically. Justin Bieber has brought Teale countless hours of joy and his music brings her peace. Teale may be severely developmentally delayed, but when it comes to Bieber Fever, she is much like any typical young teen girl!

Wednesday, January 4, 2012

Justin Bieber to meet Teale

Do you want to help Teale meet Justin Bieber, please write to Ellen at the link below!
We would LOVE for Ellen & Justin to visit School of the Holy Childhood. School of the Holy Childhood deserves recognition for all the amazing work they do providing a community for people with special needs!





http://ellen.warnerbros.com/show/respond/?PlugID=548