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Monday, October 31, 2011

Soul Twin

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

Wednesday, October 26, 2011

Respite

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

Saturday, October 15, 2011

Diva Time

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

Thursday, October 13, 2011

Balance

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

Monday, October 3, 2011

The Journey of My Friend

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