Respite

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

Diva Time

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

Balance

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

The Journey of My Friend

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

Relief

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

The Flu Shot

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

Filled with Hope and Fear, part ten...

The day went by fairly uneventfully. I know we jumped through hoops to keep Teale even and calm. There was at least one rage, maybe more, but somehow we made it through without the emergency medications that had been so tough on her the day before. The help of the cousins was much appreciated as they entertained Teale parts of the day. She took some time just chilling out in front of her personal DVD player also, her Justin Beiber movie calming her. When evening came and the traditional campfire was to start, her anxiety really came out. When I put myself in Teale's shoes, I find darkness scary and confusing. As a child with profound hearing loss, she relies on people's faces, their visual cues to help her feel connected. I saw a difference brewing in her as darkness fell. She was edgy, unsettled and easily angry. Since the campfire is all about the family playing music, Mark is very involved. He tends to take over as the frontman, helping to keep the music flowing and giving everyone who wants to perform a chance. This leaves me in charge of Teale, of course if help is needed he will come to my aid, but I always try to give him this time to just enjoy. Teale is dangerous in the dark, her visual losses are much tougher for her to manage as darkness takes over. She trips over the chairs, the roots, the rocks, etc. as I try to guild her through. I worry about her taking a bad fall and even about a minor one, as this can cause embarrassment to her and then she will rage. The group sits in a tight horseshoe around the campfire, the pond glistening behind it. It is a lovely scene and the music is much fun. All of Mark's family is musically gifted, they each play an instrument and all of them sing. They also enjoy the audience. Each of them loves performing for each other and the guests that are also invited by Mark's Aunt and Uncle. Teale is always stuck on a favorite song, for years it was The YMCA. Mark's family would perform it for her, but she would want it repeated over and over again, as once was never enough. One year they performed The YMCA several times, but each time with a different twist. It was played in different genres; as a reggae, a samba and a polka. By switching the genre, it was more fun to the musicians, hilarious to the group and seemed to satisfy Teale too. I remember thinking how ingenious it was! This year Teale is stuck on Justin Bieber and most notably "Baby." So it was played, but with much warning to her that it would be played one time only. Luckily as she matures she can accept conditions better, some of the time at least. She also had many other songs that we knew would satisfy her. But at some point it was not working, so I got her away from the campfire to calm inside. It wasn't easy and I was pretty frustrated, sometimes it is tough to always live around Teale's needs. Sure, every parent lives around their children's needs to some extent, I do recognize this. I also recognize Teale controls much of my life and usually I deal with this pretty well, but occasionally it really gets to me. This was one of those times, here I was isolated from the rest of the family, missing performances, stuck inside with Teale both edgy and her blasting Justin Bieber music, painful. My husband is a saxophone player and fantastic singer. The bands he plays in these days are for private functions, so I rarely get opportunities to hear him perform anymore. I was mad I was stuck with Teale, I was mad she was taking away something I wanted. Mark's Mom used to sing in bands, so usually her children and grandchildren can talk her into performing one or two songs. As she ages, I often wonder how many more opportunities to hear her sing I have left. That night she and Mark sang together while I was with Teale. That hurt, I was saddened by not seeing them sing together and still it stings. Like I said, we live life around Teale's needs. That night, I gave Mark the gift of being with his family without Teale taking away from his enjoyment. This is how we live, giving each other times to enjoy things that with Teale are very difficult, if not impossible. We are partners in our marriage as parenting proves to be much tougher than we ever expected. We support each other and know when the other is fried and can't deal. We give each other breaks and we share the hardships. Teale has challenged us, but she has also brought Mark and I closer. I am proud of how well we support each other and how the stress seldom comes between us. We recognize each others anger and frustration in tough cycles with Teale as not being about each other. This can be tough, when the feelings surface in an unproductive way, like snapping at each other over something completely unrelated. It happens, I would challenge any couple who lives with our stress to not misdirect anger from time to time. But we have worked very hard at remaining good friends and we truly enjoy each others company. We take breaks from the chaos of our life in creative ways that keep the two of us connected. The weekend in MA was stressful, but to have not gone would have been heartbreaking on many more levels. Eventually I talk Teale into going back out to the campfire and we enjoy the music. I enjoy hearing her laughing with cousins as they hold their breath  to make their cheeks bulge and then "pop" each other's faces. When the music ends, Teale goes with Mark and I off to our tent. Gwenn again sleeps with the cousins inside the house. As I curl up next to Mark, I try not to worry about the next day. The predicted rain is concerning, as we will need to pack up the van for the drive home. We have left more years than not in turmoil, Teale being tough, maybe because of our going home. Mark and I being "done" and anxious to just get home. Packing the van early will be the key, so that if things go down hill we are ready to roll. I go over all we will need to do to stay on task in the morning, praying the drive home will go  smoothly.