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Monday, November 10, 2014

My Miracle, part 2

The love and experiences were easy for us. We both believed in our hearts we could "heal" Teale with our love. I probably believed it more so, in almost a "nonacceptance" way. I was sure her cerebral palsy was curable. I was sure we could make miracles happen and her right hand and arm would be fine. After all, Mark and I were united in helping our daughter. We started in the hospital, learning about "Kangaroo Care." We agreed to start Teale on PT right there in the NICU. I went through many hours of pumping breast milk, even though Teale was not even allowed to eat it. Because we both believed in the healing power of breastfeeding her, once her food restrictions were lifted. We prayed and asked for prayers a lot, receiving notices of churches all over the world praying for our daughter. Those things were easy for us. Then there were the things we didn't say, the unconscious decisions that I will always believe made Teale a better person. We had music playing for her from the very begining. A tape recorder in her NICU crib, soothing her when we were not able to be there. Music would be a hugely important part of her life and in my heart I am sure it has healed much and made connections in her brain that may never would have happened in another family. Even after the day I was told "she has failed all her hearing tests, we believe she is deaf." We still played music, believing "they" were wrong. There were many things thrown at us and many we only mildly accepted, pushing the "bad" away and believing in the power of God, love and prayer. Honestly, we were totally full of ourselves, both Mark and I were so positive we could "show the doctors they were wrong," there was hardly a thought of "maybe some of this can not cured?" We even omitted the truth when speaking to people about Teale, never acknowledging her severe brain damage. Teale was going to show the world what determination, prayer, hope, faith and most of all LOVE could accomplish. It's funny how I can get back inside that "me," the new Mom of a daughter with extremely complicated medical and physical needs. I still remember how clearly I truly believed that someday, somehow, her right arm and hand would work. Her mind would be strong and there would not be developmental disabilities. Maybe some see this as sad, that I was so unaccepting of my daughter as she was, but I don't see it that way. What Mark and I did, both conscientiously and unconsciously was to believe in our ability to make her the best she could be. We believed she would walk, we believed she would talk, we believed she would learn and love and be loved. We believed our work and the work of a team of supportive therapists, teachers and doctors could create a much better person than the doctors at the NICU had told us she would be. We had faith and we were constantly lifted by the prayer and support of those who came into our life. Teale is who she is today because so many believed in her. There have been many obstacles, many times we got thrown a new diagnosis that took away a bit of our heart. There has been acceptance too, that I did not "cure" everything still haunts me in some ways. The truth is Teale wasn't meant to be "healed." Teale is a miracle, not because she lived through a traumatic birth, but because she has taught me what "life" really is. It's not the money we make or the jobs we hold or the house we live in. It is the connections we share as human beings, loving and supporting each other through the good, the bad and the very ugly. Everyday I am touched by people Teale brought into my life. I realize, without her, my friendships and my love with Mark would not be as strong. That is the miracle of Teale. 

Wednesday, November 5, 2014

Me, Mark & God

I woke with much concern on my mind. Worry overwhelming my thoughts and a question of how to get through ringing over and over again. Mark is hurting and I don't know how to help. It is stuff we often deal with, but somehow it is knocking him harder this time. I feel helpless, yet I believe in keeping the faith, I believe things will get better. This is marriage, one of us down and the other one carrying the ball. We have made it through twenty five turbulent and joyous years this way. I remember times the darkness took hold of me and I just couldn't see the light, Mark was there. He would support me in my pain, comfort me and encourage me to find the good again. We will make it through, we have made it through many, many dark times. Our life together is full of love and people who care about us. I know this too will pass, Mark has taught me that, above all others, he has taught me faith. He has also taught me that somehow good always comes from bad. I believe in us and our life together being a covenant with God. I believe He is a third party in our marriage & He is really the one who puts the light back into our souls when the darkness creeps in. When I feel helpless, I try to let go of my worries and give them to God. I know holding onto worry just drains me of my positive and the good feelings that create more blessings. So as I talk myself into making today better, please say a prayer or two for my husband, Mark. I know he will feel the love and his soul will be lifted by your love. 

Sunday, October 26, 2014

The Ups & Downs

We all have ups and downs in life. Times we are on top of the world and times we struggle to understand the point. I'm often somewhere closer to the struggling to understand the point, but I try to put out a more positive outlook. Often my strategy is to look for the bright side in a tough situation. An example, yesterday I posted the following on my FaceBook page.

My sincere thanks to the many people, including Wegmans (our local grocery store) security, who offered Mark help in Wegs parking lot a bit ago. Teale in a rage, by yourself, in public, is beyond tough. But, the upside, the world really is getting more compassionate toward these situations. People are recognizing "a child with special needs," as opposed to thinking it's the parent's fault. Mark didn't feel like anyone was judging him, only wishing they could help. The kind offers made Mark feel less alone. A huge difference from how we were treated when Teale was little & raged in public!   




The truth is I do feel grateful for the help offered and the fact we don't go through these episodes as often, but the "why does my daughter suffer so much haunts me." It's not pretty and it wrecks me every single time it happens. It can ruin a day or a weekend. I can recover quickly or I can hurt inside for many hours or even days after a rage. The bruises on the outside pale, both literally over time and they are not nearly as hurtful as the pain inside my head. I suffer PTSD from rages. My adrenaline gets high in the fight or flight moment of a rage and then I crash. I am sincerely mentally burnt out and scared of what will happen next. But I have found looking for the good in these situations helps me. Like the fact that if Teale throws stuff or breaks something in a rage now, she will help clean it up, after she calms. She knows my exceptions and has come out of rages asking how she can help. This may not seem like a huge gain to an average person, but it is in my life. We all have ups and downs, we all deal with stress and disappointment in life differently. I tend to write and share my life with others, whether it is here or on my FaceBook page, sharing through stories helps me to get through. So if you are a part of my life here, on FaceBook or both, writing is cathartic for me and I appreciate your being a part of the life of my family. 

Thursday, October 16, 2014

My Miracle


She was born to me on a cold December day in 1998. A surprise, coming earlier than we expected, but our knowing this was always a possibility. We knew she had a serious medical condition, that could cause premature birth, but we did not know the gravity of what was about to happen. We didn't know that what we expected to be her biggest issue, would soon turn into one of the least important concerns. My husband held my hand tightly as she was pulled from me via cesarean section. There was silence in the room, not a cry from my baby, not an announcement of "It's a girl," no excitement or even hushed whispers. It was the most devastating silence I have ever experienced. I broke the silence, asking my husband "Is it alive?" His response even more troubling, "I'm not sure." I then conjured up the courage to ask "Can someone tell me what I had, so I can know who I am praying for?" "A girl," the kind, soft spoken doctor said, "do you have a name?" "Teale Tatiana." I announced proudly and began praying for her in my head. That is how Teale’s life began. She was unresponsive when she was taken from my body. It was a shock that no one in the room expected, a baby who wasn't breathing. There was specialized nursing in the delivery room, but that was because the hospital staff "just" expected her to have a condition called gastroschisis. Her stomach had not closed in utero and she would need surgery to put her intestine and colon back into her tiny body. I knew it was touch and go in that room because the silence was so unnerving, but later we would learn there had been no pulse for over seven minutes. No pulse, nothing, she was gone by all medical definitions and her APGAR scores were proof, 0 at birth, 0 at five minutes, but they didn't give up, so at ten minutes she got a 3. The nurses worked on her and then told me they needed to get her to the NICU. Teale would still need to undergo the surgery to correct her gastroschisis as soon as possible, but first they needed her to be stabilized. They whisked her off, with me barely able to catch a glance of my beautiful baby. Mark, my husband of almost 10 years, was by my side, as I recall, both of us silent. What could we say to each other in these moments of uncertainty. We had no control over the situation and I'm sure all we felt was desperation and grief. Our baby was in great distress and we had no idea how this was all going to play out. This was just the beginning of a life we never saw coming. Teale would remain in the NICU for two months. In that time, she would be diagnosed with severe brain damage, cerebral palsy, seizures, we would be told she was deaf and may never walk or talk. But, one doctor's advice stood out above all the negatives that were thrown at us ~"Give her all the love and experiences possible." and that is how our miracle began. 

Sunday, August 31, 2014

Gratitude

There is a trend going around Facebook right now, no not the ASL ice bucket challenge, although I'm all for that one! I'm talking about The Three Positives challenge. I already participated and tried goading some friends and my dear hubby to participate too. Only one friend took the bait and it took her being asked by a second person after me before she did. Anyway, I'm a firm believer in looking at the bright side of things. Even in a bad situation, I can often find the lesson learned or the positive about something. Years ago a book called The Secret was recommended to me. I remember some of my friends who are also special needs Mom's being completely "pissed off" about this recommendation. After all, part of the premiss of the book would imply that I brought Teale into my life, actually, that I caused her. Anyone who is a Mom of a special needs child already carries much guilt and questioning on their part in how much they caused their child's suffering. My friends did not want me to read the book. They felt is was a cruel recommendation and I should ignore the ignorant person who threw this suggestion at me. I didn't ignore, I read the book and for some time I tried practicing it's suggestions. I remember seeing positive changes in Mark and my life during that time, but the habits did not stick and I lost my way, at least a little. I think I'm more grateful as I age, I see the good things I have and I appreciate all the good people I'm surrounded by. I found it funny that neither my husband or my friends took on the challenge though. We all need to focus on the positives in our lives. When I'm in a negative place, I find the negative snowballs and I have more bad than good going on around me. But when I ask for prayers and positive energy to be sent my way, I feel lifted up. It may be coincidence, but it may be just the way the Universe works? I'm back to trying to think possatively. I know I will slip and fall. I know I will complain. I know I will make mistakes.
I'm going to focus on the good in my life, because the reality is, I have much to be grateful for. 

Tuesday, August 26, 2014

Staying Steady

Staying steady, that is my goal right now. To not gain weight during a Teale vacation from school has basically been impossible for me in the past. I eat stress. I am truly one of those people who understands the saying that stressed backwards equals desserts. I'm a huge sugar addict and when I'm stressed I reach for sugary treats. I think it got worse after I was diagnosed Celiac Sprue at the age of 39. I felt sorry for myself. I was being denied so many foods that I had eaten all my life, so the foods I could eat, I ate! This meant gluten free ice cream and safe candy and cookies or other bakery goods that I could make or buy gluten free. I was out of hand, mostly because I was mad. Being diagnosed Celiac came at a very difficult time in my life, I had lost my Mom. My Mom wasn't the Mom of the June Cleaver variety, she was more like the Roseanne Barr type. I had not appreciated her much of my life, but I don't think that is unusual, most kids don't appreciate their parents. It took my having my son and then my daughters, to finally appreciate her as a person. I had put her on a pedestal most of my life, not that I thought she was perfect, but I thought Mom's should be perfect and mine was flawed. I thought everyone else had perfect Mom's and I just got the short end of the stick. What I finally realized as a Mom myself was that she was a person, who had lived her own trials and tribulations. She had grown up in challenges that molded her and shaped how she dealt with things, she, like me, was affected by her past. My past wasn't always pretty, but I couldn't let it define me and I needed to move forward. One of the things that we all struggle with is letting go of past hurts, we hang on them, we let them eat away at our soul and we relive that pain over and over again. I'm not sure when it happened or how, but one day I finally saw my Mom as a person with imperfections instead of a Mom who had let me down. I started enjoying her good qualities and letting go of the ones I didn't like. She became my biggest fan as I let go of my resentment and anger for the past. Teale has been responsible for much good in my life, she has taught me much about forgiveness and she has helped others see me differently. My one sister in law has openly said to me that Teale is the reason she likes me. Before Teale she just couldn't or wouldn't let me in. As Teale's Mom she saw me so completely differently that she finally got to know me and discovered I wasn't the person she had perceived me as. I think that is the key to relationships, we perceive what we want, instead of the reality. I had judged my Mom all my life, forgetting she was human too and flawed by the life she had lived. So losing her so young, after I had finally started liking her, hurt, a lot. The same week I was losing my Mom to a stroke she had suffered, I got very sick. I lost about ten pounds in a week, because, and this may be TMI, everything went straight through me. I was spending more time in the bathroom than I was spending out of it. The cramping pain was debilitating and I knew what it was. I had tested positively on blood tests for Celiac Sprue years earlier, but at that time, my endoscopy showed no signs of damage to my villi. I was told that stress could bring out the Celiac and I was pretty sure that the stress of my Mom dying had done just that. My Mom died exactly a week after my brother had found her down on her floor from a severe stroke. She was only seventy four years old and I was not yet even forty. Losing her when my kids were still so young made me mad. Her poor health was her fault because she smoked like a chimney and drank way too much alcohol, so I blamed her and had to figure out how to move past that anger. Life with Teale had been extremely challenging in those days, her explosive behavior was constant and we had not gotten the medications correct yet. It would be years before we would finally put Teale on the antipsychotic that would help stabilize her moods better. So at that time, when my Mom died, I felt like I had lost one of the few people who got my pain, who understood how sad and how worn both Mark and I were. Losing her hurt for all the obvious reasons that losing a Mom hurts, but for me, it was different, because in some ways Mark and I just felt so very alone in our life with Teale and my Mom often expressed to us how proud she was of our efforts to help Teale be the best she could be. Within weeks, I was diagnosed Celiac and the one person I wanted to call and complain to, was gone. I remember those early days of my Mom being gone and my diagnoses. I would wake up and for a split second I would be peaceful but than I'd think about what was new in my life. It would hit me like a black cloud on a sunny day, "My Mom is dead and I'm Celiac." That was 2006 and this is 2014, over those many years I have struggled with my Mom's death and my diagnosis. I have fought with doctors that they are wrong about me and I have been retested several times. Every time still comes back possative. I think my doubt is because Celiac is a genetic disease and so far no one else in my family has ever been diagnosed except me. Mark remembers how sick I was and laughs at me for my doubt. Over the years I have forgotten, much like a woman forgets how intense childbirth is. I had not really learned to live Celiac in a healthy way. I eat gluten free, but as I said before, I over indulge in gluten free treats. This vacation from school for Teale has been filled with stress as all vacations are. She misses her routine and the socialization that school supplies her. The difference for me is that I am trying to stay very conscious of how the stress effects my eating. Believe me, I have not been great at this, I have over indulged in some treats, but I think the difference is that I am so much more aware of what and why I am doing it. This morning when I stepped on the scale, I was the same, not more, not less, and this week I am going to celebrate that. 

Saturday, August 23, 2014

Words Do Hurt

I talked her into walking over to the elementary school play ground because I was taking care of my friend's son, Colby and he really wanted to go. It was my second attempt at asking her and to my surprise, this time she said yes. So she and I walked and Colby rode his bike that he had brought. Caring for the two of them all day is tricky, Teale and Colby both have their own issues. Sometimes their needs clash and it can be not so pretty! But I get Colby and I'm one of the few his Mom can trust to care for him and sadly I get that too. I can't leave Teale in just anyone's care, we need people we trust, who have understanding, humor and a whole lot of patience! So having Colby adds to the stress of the week off with Teale, but he also brings a different joy. He accepts Teale, he gets her and for him, she is just Teale. When I told him I couldn't leave Teale home to take him to the playground, Colby said happily ~ "She can come!" So as we walked and Colby rode, I was aware of how we must look. Teale's gait is off because of her cerebral palsy, she talks loud and her speech is not that of a fifteen year old girl. Plus there is that, she is fifteen, walking with her Mom to the playground. The image is kinda funny, as she and I look much alike, but she is bigger and taller than me. Sometimes it feels like she is my shadow and I realize this will be my life, possibly forever. I picture myself an old lady and Teale forty something, still following me, her an image of my younger self. The walk was filled with me shouting to Colby to wait for us or not to go too far ahead. Sometimes, although Teale doesn't always follow rules well, (like be nice to your sister :) another person not following rules agitates her. So I was thankful Colby was listening so well to my instructions. Overall, it was going smoothly but as we walked I thought about what was ahead? Would there be other kids at the playground? Would Teale and Colby get along with them? As we approached the playground, I realized no one was there and I felt both relieved and disappointed. Teale and Colby have special needs and neither have much opportunity, besides at school, to interact with other kids, so a public place like this often is the best opportunity. I knew Colby would want to run around and play, Teale may just sit and watch him, she's aware of her size and seems to kinda get she's too big for a playground. So Colby ran off and as I went to sit on a bench with Teale, she handed me her water and walked toward the swings. She used to swing for hours in a day when she was little, but these days she never swings at home anymore. I've seen her on the swings at her school, but there she is comfortable and her friends are swinging too. Somehow this move by Teale surprised me and to tell the truth saddened me too. In elementary school, Teale swung, a lot both at home and at school. We had a special needs swing with a back when she was small that my husband pushed her on for countless hours. He would sing to her and sometimes she would sing along. The amount of time he devoted to Teale was astonishing. I would have Beau and Gwenn while he stood outside in all sorts of weather pushing Teale and singing. The back and forth rhythm calmed her, it brought her peace and therefore it brought our family peace. She didn't want me, so giving him a break was impossible. The swing brings back memories of isolation too. Teale was alone, she really had no friends to hang with as a child, so the swing was her favorite place. As she grew we got a swing installed inside and there she would sit, watching music videos for hours on end, swinging back and forth. The sound of the creaking swing actually calmed me. I knew where she was when I heard it and I knew she was safe. Those were the days when she often went after our youngest daughter, Gwenn, so hearing the swing stop moving meant I better check on her, or Gwenn might get clobbered. In the Summer Teale's desire was to be outside again, so we bought an upright hammock swing that she could push herself on. We also got her a CD player with headphones so she could swing and listen to her music. Many years of swings go through my head as I watch her, she is alone swinging and watching Colby play. My heart breaks a little at the memories. I have this intense visual in my head of her fifth grade picnic while she was still in an integrated setting with typical peers. The kids were all enjoying time with each other, playing fun games and I was volunteering at one of the games. But I could see Teale alone, on a swing, going back and forth with just adults within sight. She had all these kids but she was more comfortable being on a swing by herself. Back then I knew I wanted her at the school she is at now, for just this reason, all the typical kids had grown above her and even surrounded by peers, she was alone. Suddenly my mind changes direction as a huge group of boys approaches the playground. They are older than Colby but look younger than Teale. They may think it is odd a fifteen year old is there with her Mom swinging. I watch as Colby observes them, but then he walks to Teale and sits on the swing next to her. I guess he feels safer with Teale than he does with strange boys, somehow the irony of this strikes me. Teale and Colby both suffer a lot of isolation, yet here they are, finding comfort in each other. The group of boys start a game that is similar to Marco Polo, just played on land instead of in a swimming pool. The game seems pretty difficult for the boy who is "it." He walks around with his eyes closed and the other boys are hiding up high on the playground equipment. Then it happens, one of the boys who is hiding calls the boy who is "it," a retard. My heart jumps, normally I would address this, normally I might try to make this a teachable moment, but I'm worn from the week I've had. Weeks off from school are tough for Teale and today has been edgy and she has been off. If I approach the boys, I know it may not go well. I know the tears sitting in my eyes behind my sunglasses may fall down my cheeks. Teale has a difficult time with emotions of others, especially mine or Mark's. If I cry, it actually upsets her and often causes anxiety and anger. She can not process sadness and wants you to stop being sad instantly. I sit there thinking about all the people I'm letting down by not speaking up. I'm part of a community that many are not. I love many people who have developmental delays. I know how amazing these people are and the gifts and the joy they bring to my life and the world. If our daughter Gwenn was here, I knew I would have to say something. I also know our son has been in similar situations and has been brave enough to educate. I feel like a fake, yet I sometimes need to give myself a break, because it is hard being Teale's Mom and this week I'm just drained. The boy says it again to his friend, I look for a reaction from Colby but am pretty sure he can't hear it. I know Teale can't and I'm sure she would not understand the word anyway. Just my heart breaks and I wonder if the boys parents know he uses the "R" word? I wonder if he has ever been educated on how hurtful that word is? I wonder if he cares. His friends don't correct him, even though I'm sure at least one of the boys knows who I am and who Teale is. We are in my neighborhood, just minutes from my home and honestly, most neighbors know us and they know Teale. I decide not to say anything, I feel guilty and I feel sad, but today I'm just not strong enough to confront a group of boys. So I'm addressing it here and hoping at least one parent, one person, will share with their loved ones that yesterday my heart broke just a little bit. Mostly because my developmentally delayed daughter did nothing to deserve the challenges that she lives with. And contrary to that old nursery rhyme, words do hurt.