tag:blogger.com,1999:blog-60991616209502190262024-03-08T10:29:11.575-06:00From Under the Weeping WillowMy journey through the loss of two babies to Potter's Syndrome.Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.comBlogger295125tag:blogger.com,1999:blog-6099161620950219026.post-51087323652701479202018-01-22T16:17:00.002-06:002018-01-22T16:17:46.554-06:00Out of Left FieldSince my youngest daughter has now entered kindergarten, I find myself mostly unemployed (I am aptly including my 11 years as a stay at home parent full time employment) and looking to fill those empty hours not taken by housework and shopping. My choice of fulfillment has been substitute teaching.<br />
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I got my license and walked into a classroom completely unprepared, aside from any tools I've tucked into my parental toolbox. I tell you, a teacher's toolbox is HUGE and full of a lot of thingamajigs!<br />
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So the other day I was at a tenth grade science class. Subs are often left movies to show the kids and this day the movie was Lorenzo's Oil. I had seen the movie before, but not since losing my children. So, while I knew it was a powerful movie about two parents not accepting the medical community's death sentence for their son (their only child), and their journey into medical research to eventually discover a successful treatment -- I had forgotten about the powerful struggle to keep their son alive. Literally. They were sucking his saliva because he had lost pretty much all human function. The movie gets to a scene where they are in the hospital, the mother is holding Lorenzo in her arms (he is about six years old at this point) and his suffering is almost inhumane, as is hers. He is choking and gasping and appears to be almost seizing and she is holding him across her lap telling him that if it is too difficult he can use his wings to fly to Jesus.<br />
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So here I am sitting in front of a good sized group of sophomores, tears welling in my eyes, and my chest starts to heave from the heavy emotions hitting me like a brick wall. All I could think is that I hoped no one noticed the tears streaming down my cheeks and that if they did, that not one of those students ever had to say those words to their children. I have said those words, twice I think, and not to a child so outwardly suffering. In those moments, Lorenzo was my sons, and I was his mother. <br />
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This broadsided me so hard, I found myself out of sorts after the movie - a bit snippy, and just shaken to put it bluntly. It stuck with me all day, in the back of my throat, threatening to steal my breath and knock me flat on my back. I lost Wyatt fourteen and a half years ago and that movie brought me directly into my hospital room, my small newborn son in my hands, dying ever so slowly.<br />
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Oddly enough, I am reading about anxiety, processing, grief, and a multitude of other self-care items and today's tidbit is to take in the bad and give away the good. To inhale the pain - my own and that of people all over the world who feel the same pain that I do - and embrace it. To live it and exhale the comfortable. It is about embracing the bad and stopping the chase of what we think is good. It is about being uncomfortable. Not unlike yoga, an uncomfortable stretching of our muscles and body to expand what we can do and build strength.<br />
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I inhaled a lot of bad that day. It hurt so bad I exhaled and tried to blow it away. Writing this has brought it back and I'm going to go embrace it and see what happens. Wish me luck.Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com1tag:blogger.com,1999:blog-6099161620950219026.post-63469594508740154022016-08-04T14:16:00.001-05:002016-08-04T14:16:23.310-05:00I Don't Know What I Don't KnowAnyone who visits/reads will likely have noticed that my waterfall of words has been reduced to a trickle. Wyatt would have just turned 13 in June (a teenager!) and Eli 5 in March (almost a kindergartner!). It is not too hard to imagine what they would be like as each has a younger sister that is almost one year younger to the day. The whole gender difference is boggling to me though. I honestly have no idea what it would be like to have one boy in my house of ladies, nonetheless two. In my imagination, I hold them out as the balance our family badly lacks at times. There are days, hours, and minutes where it is just way too much girl in this house. That is where my thinking leads me down a path that I just can't follow most of the time. My heart aches so badly to have that boy in our house. Any way I could get him - foster care or adoption. Four girls in a four bedroom house already seems too much. We don't have a ready room, would lose our crafting/office/have to rearrange almost the entire house and would only be adding another person to an already stretched parental structure at times! There are so many reasons which make it a really bad idea but the heart doesn't usually listen to logic, does it? So far, logic is holding strong and I am keeping my crazy ambitions reigned in. It's hard though to hear my daughters say how much they would love to have a brother. I don't know if there would be a more loved little boy in this whole world. But no one could ever replace the two I will forever miss and that is a truth that I've lived with every day for thirteen years now.Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com3tag:blogger.com,1999:blog-6099161620950219026.post-54388178937662671752015-12-18T18:53:00.001-06:002015-12-18T18:53:48.279-06:00Why Does Christmas Always Hurt So Bad?Christmas has hurt worse than ever these last few years, ever since we lost Eli. I've put extra thought into why this year and come up with a few possibilities. One is the difference between the boys' pregnancy timelines. When I was pregnant with Wyatt we spent a blissful, ignorant and happy Christmas season. We received his Potter's diagnosis less than a month after Christmas. Eli was diagnosed just before Thanksgiving and so I spent one of my saddest Christmases ever. Surrounded by my entire family, pregnant and suffering in silence. Very very few times was my pregnancy even acknowledged. It was so sad. I wonder if I'm haunted by that pregnancy. If it has somehow carried a shadow through each year. Same house, same decorations, same family members, etc. When I was pregnant with Wyatt we lived in an apartment and I never spent another Christmas in that place.<br />
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The second possibility has religious roots. I'm Catholic and so Advent is our time of preparation for the tiny Savior's arrival. I find it hard to prepare myself in any way for the birth of a boy. It has too many parallels for me. I wonder if anyone who has lost girls struggles with those same thoughts at Christmas or if gender really does have a part in this. I also remember my preparations for Eli's birth which was less than three months after Christmas. It's just too painful.<br />
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I wrote a few years back that our family was able to escape and that was a wonderful Christmas filled with less sadness. I don't know if it was because of the exciting things we were able to experience with our girls for the first time or the change of scenery or a combination of both, all I know is it was different. This year is not. I drug my feet in every way possible when it came to holiday preparations. The only thing that really keeps me going is my children counting on me to hold fast to our own traditions. Others that are not as important I am letting go. Something has to give.Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com0tag:blogger.com,1999:blog-6099161620950219026.post-71020523235380423842015-11-02T13:59:00.000-06:002015-11-02T13:59:02.151-06:00Imaginary Friend or Something Else?Our youngest daughter, born a year and a little over a month after Eli has begun to talk about Eli. In fact, she's quite fixated on him in a way. So much so that I made her a little photo album of him which she cherishes. But it's more than that. She talks about Eli a lot. When he was a baby and how she held him. She talks about little fights they've had while playing or what kind of things they've been playing together. He talks to her and she will tell me what he says. It's always her voice that comes through but nonetheless it makes me wonder. Does she have a connection to Eli? Is this an imaginary friend? <br />
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It is bittersweet to hear his name so often. I love to hear it and it is nice to think that he may be nearby, visiting every now and then, taking care of the little sister he never knew. I don't know. <br />
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This year Dia de los Muertos really spoke to me. I dug into it a little deeper and found out that November 1st is often considered the Day of the Innocents and it is on that day that spirits of children and babies visit their loved ones. I baked my little ones the Pan de Muertos and miraculously we still have marigolds in our yard so I hope that yesterday at some point the breath of the wind may have been sweet little kisses blowing in the breeze. Maybe just maybe they were drawn to us for that one day because lately I have been missing them both so much.Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com0tag:blogger.com,1999:blog-6099161620950219026.post-75144372140251146692015-09-12T13:11:00.002-05:002015-09-12T13:11:27.523-05:00Cemetery Woes & Unexpected HealingRecently our cemetery announced proposed rules. But not just any rules. These are rules. Because the last set of rules prohibited horses in the cemetery. The new rules were requested by the current cemetery caretaker who is a nice young man overwhelmed by the amount of decorations and plantings around gravesites at our cemetery. The sheer number of items and decorations on and around the graves make it difficult for him to keep the graves neat looking and properly trimmed. <br />
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At first, I was outraged. The rules proposed banning all artificial flowers, all grave decorations, all solar lights, shepherd's hooks, wreaths, benches, etc. All that would have been allowed were fresh flowers and artificial flowers for a two week period around major recognized holidays. Well, you better bet I did my duty as a citizen and showed up at the city commission meeting (who oversees the cemetery) and voiced my opposition to these rules. Why? Because we have a bench, a wreath, a shepherd's hook, solar lights, a rock border, artificial flowers and tons of little birthday and Christmas gifts scattered along the lip and rocks bordering our headstone where Wyatt rests. Eli rests at our feet and has a flat stone so we are unable to put anything at his stone. You know what happened? The commission decided to form a committee of people both for and against the proposed rules to hash it out.<br />
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I volunteered to serve on that committee because I felt so strongly about my opinion that I wanted to be part of the change, whether for good or bad. So through the course of about six hours over two meetings, which included a walk through of the cemetery to see and listen to the caretaker show us why he believed the policy was needed, we came up with a new proposed set of rules. There were tears and disagreement during our meetings. Three of us opposed the rules and three supported them. We were different ages and tended many different kinds of graves. We listened carefully to the opinion of the caretaker and he listened to us. <br />
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The end result was a set of rules which is respectful to those who choose to remember their deceased with flowers and items but respectful of the caretaker and those who were seeking a neater looking cemetery by limiting the kind and scale of these items. We have taken our bench, shepherd's hook, solar lights and many small tokens home. We cleaned up most of our rock border but left the marigolds we planted this summer. We'll plant more again next summer along with some moss rose and we'll leave fresh flowers for the boys' birthdays which can then be mowed over later. <br />
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I was forced to look at the cemetery and my own displays of grief from a different perspective. Did my boys need all of those things I put out there for them? No, they were for me. But did they really do anything real for my grief? Probably not. It was therapeutic to remove many of the items which were faded but my own grief had prevented me from removing them. I just couldn't take anything else from the boys who were taken from me. I also was able to see that I searched for items that were being marketed to me as a grieving person and I don't really like that there is such a large market aimed at grieving people. It already takes a lot of money to lose a loved one. <br />
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I am excited for the spring when all of the graves are cleaned up and our gravestone can finally be neatly trimmed more often than not by the mower, rather than having to rely on a hand trimmer because our bench and rock border were in the mower's way and of course with four young kids at home we don't get to tend to the grave as often as we would like to. I want it to look neat and respectful. I told the caretaker that he has a special job, he is caring for our loved ones' resting places in our absence and that is a labor of love.<br />
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I was able to present the new set of rules to the commission, tell my story and explain why I supported the rules even though I would give up so much to abide by them. I think it was a powerful position to take and one I hope that eased other's pain a little as they approach their own loved ones' graves this fall.<br />
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Change is change. It is not always bad and more often than not an opportunity to find good or start anew.Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com0tag:blogger.com,1999:blog-6099161620950219026.post-38888900382299957872015-06-01T14:16:00.001-05:002015-06-01T14:16:57.824-05:00The Hidden GriefI was saddened to see Vice President Biden's son has passed away from cancer but surprised and appreciative of comments that our Vice President recently made about grieving were highlighted as a result. Biden has long lived under the shadow of grief though you would often never guess from all of the public appearances where he is flashing that huge smile. Same goes here. I've thought and said it a million times I think. Sometimes I just wish I could have something that signifies - "Lost two infant sons at birth" so people around me might just understand or give me a break when I don't have that big smile plastered across my face. I do find joy and I do have peace in my life. Time has eased the most painful memories farther back into my consciousness which allows me to recognize happiness and feel happiness in a way that I couldn't for some time after each of my sons' passing. <br />
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But there are still those moments. Our youngest daughter recently turned three, just a little over a month after we celebrated Eli's fourth birthday. After Eli died I made our older three daughters each a little photo album with photos of Eli and our family and Eli (some that the girls took with their own cameras that day). Well, the little one had been sneaking her roommate's album and began asking for her own. It was something that until then I hadn't really given a thought. Of course she should have her own. She talks about when Eli was in her belly and what a cute and tiny baby he is. <br />
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Then something else I hadn't given much thought to was brought to my attention. Wyatt. She should also have pictures of Wyatt. Why I didn't just do that when I put the other one together I don't know. I guess because Eli was more real to the girls because they touched and held him and Wyatt was born before all of them were even a speck in our eyes. I don't quite know for sure what he is to them other than a treasured name and birthday. So I gave the little one pictures of Wyatt too and now she talks about when he was in her belly and she held him. <br />
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I know these are fleeting moments, but I wish they could last forever. It is a bittersweet experience to hear their names and really look at their photos so often, but it is such a blessing that she says them aloud and cherishes their images as much as I do. <br />
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Yet all of this is hidden just under the surface. It's not something I can freely share with many people. Grief just isn't a topic of conversation much beyond the funeral. I've mentioned before that our parents don't always even say something on the boys' birthdays, but our siblings never do. But it's still there. We still think of them and miss them and catch glimpses of what could have been. The loss of a child is a profound sadness that you can never outrun. It's something that will drag you down into the depths of a seemingly endless dark pit and it will hold onto you. It is easy to understand feelings of desperation and no way out when you're towards the bottom in complete blackness. It is easy to feel like the sun will never shine again when it has been so long since you've felt it on your face. It is hard to feel like there is anything else out there but the blackness that surrounds you. <br />
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When I was putting the pictures of Wyatt and Eli together I noticed something I had not before. I wasn't looking for it but it just jumped out of the photos. In the photos where it was my husband and I with Wyatt we looked so very sad. It was painful to look at those photos. It was painful to remember those moments. I thought "of course we did". Wyatt was our first child. We had no idea how he would die or how quick it would happen. We were in the blackness not knowing what would happen next or how we would weather the next storm. We were fully submerged in our grief. In almost all of the photos I'm crying, even the ones where I'm smiling. My face is puffy and just sad. But in the photos of us with Eli we look truly happy. My smile doesn't feel so sad. I wonder if the difference is because I knew with Eli that we would be okay. I knew the pit wasn't bottomless and I knew that even though I couldn't see it, the sun was still shining and eventually I would again bathe in its light and warmth. Both of us just looked -- happier. Even though we were given less time with Eli and he was the second son we had lost on the day of his birth to the same frustrating medical condition. <br />
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Grief is ever present, ever changing and more often than not, ever hidden.Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com0tag:blogger.com,1999:blog-6099161620950219026.post-12388010904143525682015-01-08T14:08:00.000-06:002015-01-08T14:08:11.789-06:00Who is it for?Frequently I drive by a house in town which has a large wooden cutout angel in front with a beautiful lattice border around it. On the angel is a female's name. It is not clear whether this name is a daughter, sister, friend, wife or mother but what is clear is she is a very special person to someone or many someones in that house. <br />
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That got me wondering. Why is the angel displayed so publicly? Is it in remembrance of that person or is it to remind others that this family is still suffering her loss? <br />
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Ever think about these public displays of grief and grieving? I think in some ways we all do it. I have photographs of Eli & Wyatt displayed proudly in my living room. We hang their stockings at Christmas. Their names are included on our family signs hung in the house. I have their names engraved on a ring along with my daughters' names and I wear that constantly. I don't hide them to make others more comfortable nor do I parade them out to display my losses. I have simply woven them into my life. But on some level I think some of it comes from a desire to have others recognize that I am not who I used to be and that the grief of those losses has profoundly changed me. I need for them to remember, not necessarily for my sons', but for me.<br />
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<br />Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com0tag:blogger.com,1999:blog-6099161620950219026.post-27002466599017044222014-12-01T14:05:00.001-06:002014-12-01T14:05:42.985-06:00Holidaze & The Christmas BoxIt's that time of year again. Really, it's always "that time of year". Either I'm anticipating one of the boys' birthdays, just celebrated one of their birthdays or I'm facing another holiday season without watching them search for their Easter baskets, carrying their Halloween bags stuffed with candy bars, setting them a place at our Thanksgiving table or ignoring the two empty stockings on Christmas morning. That's life after loss, right?<br />
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This particular time of year is especially hard for me, even though it's been 11 years since Wyatt was born and 3 since Eli was born. It's still hard and I know it will always be. There's just something about Christmas for me.<br />
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A few years back I wrote this <a href="http://fromundertheweepingwillow.blogspot.com/2011/11/12-days-of-christmas-with-you-in-heaven.html" target="_blank">post</a> about what our family does to celebrate and remember our boys each year. Not much has changed. We still try to find a local group where we can choose a child that would be each boys' age to buy a gift for and we still try to donate toys when possible as well. Even in the deepest snows we trek out to their grave site to clear the snow and stand by their Christmas tree for a moment. <br />
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Each year on December 6th at 7pm, our family attends a Candle Lit Remembrance Service where we hang ornaments with our sons' names on them on a special Christmas tree alongside many other little ones' ornaments who are no longer with their families. It is a special time for us to focus just on our boys in the busyness of the holiday season. We also have an Angel of Hope statue which is derived from the Richard Paul Evan's story "The Christmas Box". You can read more about the angel and the story <a href="http://www.richardpaulevans.com/angel-statues/" target="_blank">here</a>.<br />
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Whatever you do this season and wherever you are in your grief, I encourage you to listen to your heart. If you need a break, take one. If you need to say no, do it. The holidays are stressful and busy enough without the added burden of grief and longing. We find that at Christmastime more than ever we just need time by ourselves. Create traditions that honor your family and your memories. It's okay to break old ones and start new ones. In my opinion, a tradition is only as good as it makes you feel. If it doesn't make you feel good and able to share warmth and happiness with your family, then what is your family going to remember by honoring that tradition?<br />
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My husband and I have made some significant changes to how we celebrate Christmas with our children. Over the years, how we view Christmas has changed. What we see and feel has changed and how we celebrate has needed to change as well. Our families may not understand, but it has been important for us to hold true to ourselves and it is an ongoing process each year. The year I was pregnant with Eli we found out about his Potter's not too long before Christmas and I spent many an evening sitting in the dark of our living room with only the light of our twinkling Christmas tree rubbing my belly and sorting through the depths of my emotions. Years later staring at that same tree in the dark as it twinkles the same way it did then is oddly comforting.<br />
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May you find something comforting this holiday season and hold fast to it. Blessings.Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com0tag:blogger.com,1999:blog-6099161620950219026.post-41708742508812444402014-09-09T14:35:00.000-05:002014-09-09T14:35:12.090-05:00It's That Time of Year Again - SharingSchool has started which means for my girls, new teachers and new students who may know that they have three sisters but do not know about the girls' two brothers. I leave it up to my girls as to whether they want to share that information. At different times it has made each of the girls uncomfortable to answer their classmates' questions about who their brothers are and probably more importantly, where they are. Having never had to tell anyone that I had a brother but that he died, I don't know exactly how that feels. For that reason I really give them leeway about how they handle the situation. Sometimes they've shared it at the beginning of the year and then let it go the rest of the year. It hurts to hear the ways they've shared their brothers because it's just not the way they share their sisters. None of them even met Wyatt so they have little to say about him and Eli lived so briefly that while they remember him they have little to share about their time with him. He never took their toys or puked on their shoulders or called them names. He never kissed their cheeks or grabbed their fingers with his own wrinkly little hand. I feel for them. My heart swells a little when they share and sinks a little when they don't but I respect that decision. I mean, really, it's one similar to decisions that I've made 100 times when I meet new people who only see or know about my four daughters. It's a split second decision based on a gut feeling and even those gut feelings can lead me wrong sometimes. <br />
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So far, two out of the three oldest girls have had a chance to share their brothers. There's bitter with the sweet. We'll see if the last one has a chance and what her choice ends up being. Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com0tag:blogger.com,1999:blog-6099161620950219026.post-22441211254322951042014-08-25T14:45:00.002-05:002014-08-25T14:45:45.824-05:00StuckSchool for my three oldest girls is right around the corner and is just one of the things that will break me out of this rut that I'm stuck in. I need to rearrange (metaphorically) and that is hard to do with four girls buzzing and sometimes screaming in and out of the house all day long. Me and the little one will figure things out soon.<div>
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I've spent my summer running, running and running some more. I kicked it off with a 10k amidst beautiful scenery and ever since I have been amping up my mileage to tackle a 10 mile race in a few weeks which is going to be followed (fingers crossed) by a half marathon two weeks after that. These are kind of bucket list things for me. When I find myself doing the same thing over and over I get bored. I'm sure that's a good bit of human nature. While I have eaten peanut butter and jelly sandwiches almost every Wednesday at lunch for the past six years or more and I'm okay with that, I can't stick with the same hairstyle for long, the same furniture arrangement, etc. Some things are easier to change than others. Nothing I do will bring Wyatt and Eli back and nothing I do will make me truly okay with the fact that they're gone. That's a tough one.</div>
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But running I can do. I've now pushed myself to distances that I never dreamed I could do. I have running on my bucket list and I'm just ticking those items off like wildfire. Every time I accomplish a new distance or speed it feels good. I feel strong. Even at my weakest after a hard run or race, I bask in that sense of accomplishment. It helps that I can remind myself at the most trying moments that nothing compares to the pain of watching my child die or putting him in the ground and it makes things a little easier.</div>
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Moral of the story: grow and challenge, seek and embrace change. Cultivate and build strength within yourself. I find it's so easy to play the victim and expect someone else to help me change or fix me but that true healing is better achieved within because I know myself better than anyone and those things I think I can't do are just things that I'm scared to do.</div>
Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com0tag:blogger.com,1999:blog-6099161620950219026.post-70619901555113417672014-06-04T23:20:00.001-05:002014-06-04T23:20:26.388-05:00Happy Birthday Sweet Wyatt, 11 yearsTonight our 5 year old was discussing Wyatt with my husband. When he told her that Wyatt is now 11 years old I paused for a minute. I was smack in the middle of the 5:20 throwing together of lemon poppy seed blueberry pancakes and time stopped for the briefest of seconds. Eleven years just didn't sound right but a quick deduction confirmed that number. Everything after a year seems farther away, but eleven years seems an eternity. Eleven years ago I couldn't even begin to visualize this self. I could barely see through my own tears. My heart was so broken I feared it would never heal and I would never know happiness again. I believed sadness would always hang over me like a dark cloud blocking out the sun. Because dark clouds were all I saw for a long time after Wyatt was born. Dark clouds, pregnant bellies and newborn babes. <br />
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Eleven years later I find myself smiling in the sunshine, holding my sweet son's memory close to my heart. He has a special broken place inside that will never fully heal. Wyatt's cupcakes are ready for tomorrow, the weather is promising to be quite the opposite from the day of his birth - sunny and warm. The picnic is planned and as I learn every year, whether or not I'm ready for it, it will happen. We will take Wyatt a handful of purple irises from the shadow of his new little willow tree and maybe a few daffodils from the shadow of Eli's tree. It's my one day to let down all those defenses that I keep up almost every other day of the year. Tomorrow is Wyatt's.<br />
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Happy 11th Birthday, my son. Each year you grow farther away from my memory and farther away from my experience. I wouldn't have the slightest clue what to do with an eleven year old boy, but I'd give just about anything to figure it out. We miss you so.Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com0tag:blogger.com,1999:blog-6099161620950219026.post-78408799272969139712014-05-06T14:21:00.002-05:002014-05-06T14:21:57.912-05:00Perhaps the Beginning...My post on waiting yesterday is very fortuitous in its timing because today I discovered that while I'm waiting and not even devoting one iota of thought to Potter's Syndrome, others are. Today I found a medical journal article published in February of 2014 in which scientists claim to have identified another gene which may be responsible for BRA (bilateral renal agenesis) which is the condition that affected Wyatt and Eli. <br />
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It is from the AJHG (American Journal of Human Genetics), Volume 94, Issue 2, pages 288-294. Unfortunately I do not have access to the full article but the summary reads, in part,<br />
<blockquote class="tr_bq">
"<span style="background-color: white; color: #2e2e2e; font-family: 'Arial Unicode MS', 'Arial Unicode', Arial, 'URW Gothic L', Helvetica, Tahoma, sans-serif; font-size: 13px; line-height: 20px; text-align: justify; word-spacing: -1.0499999523162842px;">The pathophysiological mechanisms leading to total absence of kidney development thus remain largely elusive. By using a whole-exome sequencing approach in families with several fetuses with bilateral renal agenesis, we identified recessive mutations in the integrin α8-encoding gene </span><em style="background-color: white; border: 0px; color: #2e2e2e; font-family: 'Arial Unicode MS', 'Arial Unicode', Arial, 'URW Gothic L', Helvetica, Tahoma, sans-serif; font-size: 13px; line-height: 20px; margin: 0px; padding: 0px; text-align: justify; vertical-align: baseline; word-spacing: -1.0499999523162842px;">ITGA8</em><span style="background-color: white; color: #2e2e2e; font-family: 'Arial Unicode MS', 'Arial Unicode', Arial, 'URW Gothic L', Helvetica, Tahoma, sans-serif; font-size: 13px; line-height: 20px; text-align: justify; word-spacing: -1.0499999523162842px;"> in two families. </span><em style="background-color: white; border: 0px; color: #2e2e2e; font-family: 'Arial Unicode MS', 'Arial Unicode', Arial, 'URW Gothic L', Helvetica, Tahoma, sans-serif; font-size: 13px; line-height: 20px; margin: 0px; padding: 0px; text-align: justify; vertical-align: baseline; word-spacing: -1.0499999523162842px;">Itga8</em><span style="background-color: white; color: #2e2e2e; font-family: 'Arial Unicode MS', 'Arial Unicode', Arial, 'URW Gothic L', Helvetica, Tahoma, sans-serif; font-size: 13px; line-height: 20px; text-align: justify; word-spacing: -1.0499999523162842px;"> homozygous knockout in mice is known to result in absence of kidney development. We provide evidence of a damaging effect of the human </span><em style="background-color: white; border: 0px; color: #2e2e2e; font-family: 'Arial Unicode MS', 'Arial Unicode', Arial, 'URW Gothic L', Helvetica, Tahoma, sans-serif; font-size: 13px; line-height: 20px; margin: 0px; padding: 0px; text-align: justify; vertical-align: baseline; word-spacing: -1.0499999523162842px;">ITGA8</em><span style="background-color: white; color: #2e2e2e; font-family: 'Arial Unicode MS', 'Arial Unicode', Arial, 'URW Gothic L', Helvetica, Tahoma, sans-serif; font-size: 13px; line-height: 20px; text-align: justify; word-spacing: -1.0499999523162842px;"> mutations. These results demonstrate that mutations of </span><em style="background-color: white; border: 0px; color: #2e2e2e; font-family: 'Arial Unicode MS', 'Arial Unicode', Arial, 'URW Gothic L', Helvetica, Tahoma, sans-serif; font-size: 13px; line-height: 20px; margin: 0px; padding: 0px; text-align: justify; vertical-align: baseline; word-spacing: -1.0499999523162842px;">ITGA8</em><span style="background-color: white; color: #2e2e2e; font-family: 'Arial Unicode MS', 'Arial Unicode', Arial, 'URW Gothic L', Helvetica, Tahoma, sans-serif; font-size: 13px; line-height: 20px; text-align: justify; word-spacing: -1.0499999523162842px;"> are a genetic cause of bilateral renal agenesis and that, at least in some cases, bilateral renal agenesis is an autosomal-recessive disease."</span></blockquote>
If you are into genetics, the OMIM (Online Mendelian Inheritance in Man) entry explaining a little more about this gene can be found <a href="https://www.omim.org/entry/604063#" target="_blank">here</a>.<br />
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Why is this AMAZING news? Because now there is a gene mutation which has been pinpointed and can be tested within families to see if the mutation exists between the unaffected and affected members of the family. It may not provide answers for mine, but it might and today "Might" is good enough for me.Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com1tag:blogger.com,1999:blog-6099161620950219026.post-36273669928356780102014-05-05T10:42:00.000-05:002014-05-05T10:42:17.710-05:00Waiting for SpringYesterday, May 4th, it snowed. It melted on contact, but STILL. Snow in May just isn't spring.<br />
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My point? I can spend my time lamenting the snow, the cold that chills me down to the bone and the wind that has lately accompanied it or I can just pull on my big girl panties and deal with it. I find myself waiting so often. Waiting for my kids to wash their hands, waiting in line at the grocery store, waiting for spring and the list goes on and on. It's easy to to tell myself that things will be better when my youngest is potty trained, the older three kids are in school, the weather stays above 60 degrees and we can put away our winter jackets, ____________ (fill in the blank).<br />
<br />
But what does that really do for me? It keeps me hanging on for something that may or may not happen (hopefully in the case of potty training and school, right?) and who knows when it will happen. I can find myself waiting for the sun to come out or my loved ones to change their views when we don't see eye to eye. I would be much better served though by not waiting but instead by making the best of every situation that presents itself. I don't even know if after these things I'm waiting for actually happen, whether I'll be any better off than I was when I started the waiting.<br />
<br />
I remember waiting for both Wyatt and Eli to be born, knowing that I would never bring either of them home with me. Talk about hard waiting. I think waiting for death is one of the hardest things to wait out for anyone. But those shadows lifted long ago. Now it's just a matter of perspective. I still find myself waiting, waiting for answers about Potter's Syndrome, hoping to find out why my boys were afflicted and hoping for treatment options in the future. But I don't have to passively wait. I do my own research. I ask questions. I keep my finger in the pot. Because someday that wait will end and just like every moment since my boys' deaths, the world will keep turning. I can't get lost in the waiting and the possible outcomes. If I can make a positive difference to the outcome, I always try. If I can't, I'm learning to live while I'm waiting and just make the best of it.Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com0tag:blogger.com,1999:blog-6099161620950219026.post-69389186533320550832014-05-01T14:34:00.001-05:002014-05-01T14:34:51.060-05:00Comparison is the Death of Joy"Comparison is the death of joy". --Mark Twain<br />
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As a bereaved parent I can't count all of the times that I have found myself comparing my loss and then my losses to others. I've compared numbers of losses, numbers of living children, numbers of minutes lived, numbers of anatomical defects and the list goes on and on. To what end? I've found no comfort in my sons' deaths. Where else could they be better off than in my arms, in my house, surrounded by their family. No offense to my religion, but forget that heaven talk. I am not 100% certain what happened to my boys after they died and I'm not 100% certain what'll happen to me when I die. That doesn't mean I'm faithless. I live believe my sons are in heaven and I strive each day to reach that height myself. But Wyatt and Eli are proof that there are no guarantees.<br />
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It's easy to compare. I think on some level it makes me feel better to find someone worse off than myself or to be able to tell myself sometimes that I'm entitled to whatever behavior or feelings I need to justify because of the magnitude of loss I live with each day. Most days I accept the loss. It's just become a part of who I am and who my family is. My girls talk about their brothers in passing fashion after seeing their pictures. It's all very matter of fact. They have two brothers but those brothers aren't here. It's hard to explain the why but they get the reality. I'm learning to take each person, each family and each situation for what it is. Completely separate from my own. It seems like most people live with their own struggles and pain and what may seem to be a molehill to me is a mountain to someone else and my comparison or analysis of that is not helpful to anyone.<br />
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I recently came across this advice and it's really stuck with me. When I find someone difficult to deal with or understand I remind myself that this person is most likely wounded in some way and I should handle them much more gently and with some apathy. When I think someone doesn't deserve that kindness most is probably when they are in the greatest need. Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com3tag:blogger.com,1999:blog-6099161620950219026.post-19198671569419657022014-03-11T10:08:00.002-05:002014-03-11T10:08:44.602-05:00Third Birthday Wish to My Sweet EliThree years ago today I gave birth to my second and last son. The pain of that loss is - unimaginable. No number of children, laughs, smiles or incredible moments can replace those precious few hours I spent with my son and so today I sit here with tears streaming down my face missing him more than I thought possible. <br />
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Sometimes life is about reframing. My life's frame cannot sit squarely on my sons and their absence. I would be an disfunctional mess. So I've had to shift focus. Eli and Wyatt are still in the picture, they're just off to the side and a little blurry. Never left out but only allowed to take center frame on two days of the year, their birthdays. <br />
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The salve that I've applied to my broken heart his year is that Eli lived almost his entire life in my body. He knew mostly me. He knew the sound of my voice, when I was happy, when I was sad and everything in between. He felt my body wracked with sobs and my belly bounce with laughter. He heard me singing to him and felt my soft caresses. He slept to the sound of my heartbeat. This brings me a measure of happiness. It is amazing to me that I can still remember so much so vividly three years later, and almost eleven in Wyatt's case. The feelings are still there, they don't leave.<br />
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So happy birthday, sweet Eli. This year you have a special treat. Mommy baked and frosted the usual chocolate cupcakes but your three older sisters decorated them and they are spectacular. Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com4tag:blogger.com,1999:blog-6099161620950219026.post-60335472472304352772014-03-07T09:55:00.003-06:002014-03-07T09:55:40.194-06:00How Could I?Not recognize Eli's birthday in a sea of dates months and months ago? I am currently the leader of my daughters' school PTO which is an exhausting volunteer commitment but one that I undertook voluntarily so I've really given it my all. So much so, that it only occurred to me a few weeks ago that this month's meeting date falls on Eli's birthday. <br />
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I panicked. I mean seriously. I had marked these dates on the calendar in August. Last month I typed it onto the February agenda. How could I not have put two and two together during all of those months and all of the times I looked at that date? To that I am speechless. It's not like I forgot his birthday was coming up. Of course when I finally added it up it was too late to move the meeting date which only increased my panic since it's a fairly important meeting that I wanted to attend.<br />
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But, I do very little on my son's birthdays. Those are my special days to fill with memories and as much peace as I can garner. I bake, frost cupcakes, buy balloons, make a special meal and then pack it all up, four kids included, and we take it out to the grave site where we eat, blow bubbles, remember and make wishes as the balloons float away. That's it. That is all those days are about to me. I will not be attending this months' meeting, I'm making it work and that will have to be okay. I just still can't believe that day didn't scream to me louder than all the other thoughts bouncing around in my head. Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com2tag:blogger.com,1999:blog-6099161620950219026.post-18844237567294969662014-02-27T10:12:00.001-06:002014-02-27T10:13:03.311-06:00And the Heaviness Settles InWinter has overstayed its welcome in a most uncomfortably long cold way. A chill has settled deep into my bones and I just can't shake it. Along with that, the sad anticipation of my littlest son's third birthday. It seems impossible that just three years ago I gave birth to a sweet baby boy. My life is so devoid of boys, it's a wonder my husband has any testosterone left! Four girls with dolls, dresses, leggings, princesses, tutus and tiaras leave little room for toy car longings. Yet I am ever reminded that he was real, my arms still carry the memory of his tiny body. This time of year my mind just turns to mush. Its evident in what I can remember, what I forget and even how I write. Nothing seems to make sense. Which is probably completely appropriate considering that Eli's absence still doesn't make sense. My daughters' questions about why their brothers had to die don't have satisfying answers. The day will come and go as it does every year and I will muddle through the next few weeks until that day passes with a heaviness in my heart and a bit of extra missing for my sweet Eli. Time has done little to dull my pain but has done wonders with my coping mechanisms. Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com1tag:blogger.com,1999:blog-6099161620950219026.post-74202292961032787722014-01-30T09:51:00.001-06:002014-01-30T09:51:25.332-06:00Ebbing The waves of grief that pounded my shores just one month ago have receded to the depths and so far are staying there. I don't have much to write which is exactly why I'm writing. For those of you who are still being pounded by the waves every day and wondering if it will ever let up. It will. Even after the loss of two. It will.<br />
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I don't feel like crying, I don't feel like shouting their names from the rooftop. I don't feel much of anything. Sometimes I think that's what happens when the grief comes on so strong after a period of time it just leaves me a little numb for a while. I don't mind. Wyatt and Eli are still in my heart and my thoughts. I'm glad that thinking of them doesn't make me want to cry or crawl right into the wallpaper. I've spent enough time in the servitude of grief and overall, grief hasn't served me all that well. It is a necessary companionship, one of strength and growth, but it takes a lot of energy and determination.<br />
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I have a brand new picture hanging in my hallway. It is one of my four daughters, hand in hand standing on our balcony while at the beach last month, in the first beginning soft light of a beautiful sunrise. Since the sunrise is at their backs, only their silhouettes are visible against the pastel light. In the sunrise, it says "We can only appreciate the miracle of a sunrise if we have waited in the darkness."Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com3tag:blogger.com,1999:blog-6099161620950219026.post-48461683075818918382014-01-03T10:19:00.000-06:002014-01-03T10:19:00.372-06:00Deceased on his Birth Certificate? Ain't that a kicker?I am in the process of registering my 5 year old for kindergarten this coming fall and I need a certified copy of her birth certificate which I have never requested before. While I was doing that I requested one for our littlest girl and sweet Eli. I have Wyatt's which we requested shortly after he was born but for one reason or another I just couldn't do Eli's until now.<br />
<br />
A few days later they arrived in the mail. I was excited to have that proof of life in my hands. But what to my wondering eyes did unfold but the bolded word "Deceased" printed right below, right frickin' below, the words "Certificate of Birth". Then, to add insult to injury, Deceased was stamped in large red ink across the bottom. So much for his BIRTH CERTIFICATE.<br />
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This, combined with the fact that it was December 7th, the Christmas Box tree lighting ceremony where we hang ornaments for the boys each year at our local hospital, and the Christmas missing them blues just set me off. And when I say set me off, you may not believe how far off I went. I went straight to my best friend, Google, and got to work. First, I looked at the birth certificate information for my state - nope, no mention that it would have the word deceased splattered all over it. Second, I researched to see if it was required to be printed on the certificate. Nope, not by state law or regulation. Third, I got on the phone and called the State Registrar. That didn't go too well. I was told it was required by a model law, which of course is not true unless your state has adopted the model law which mine has not. I was also told that it's in the standard computer printing and they can't change it. Not entirely true either. Fourth, further incensed by the door being slammed in my face despite my very legitimate complaint, I went back to my good friend and looked at what other states do. There are a number of states that offer a more expensive heirloom certificate which does not have deceased marked on it. There are a few that allow a special process for parents who have lost their children, such as myself. So, then I got back on the phone and spoke with the State Health Director. Gotta love living in a state where you can actually speak to state officials the same day you call them! I didn't get a better result but instead a promise that the issue would be looked into further.<br />
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Fast forward, I got a call today and the compromise is a complimentary certified birth certificate without the red stamp on it. It'll still say "Deceased" right below the word "Birth" which KILLS me but I'm going to try to find a way to cover it up discretely. What I didn't mention above is it all boils down to fraud and is at least in part derivative of September 11th. Damn terrorists and damn criminals. <br />
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Who would have thought something so simple as requesting my son's birth certificate could cause so much pain? I'm considering approaching my local legislators about creating some kind of heirloom certificate here which would be that extra option for people like myself who want a birth certificate as a proof of life, not a reminder of death. How sad this world has become sometimes.Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com0tag:blogger.com,1999:blog-6099161620950219026.post-83636922568920014292013-12-30T14:33:00.002-06:002013-12-30T14:33:31.155-06:00I Couldn't Outrun the Holiday BluesWe just returned from our first big family vacation - EVER. The most we've ever done is visit family. This year we took our own family to visit magical places. The whole process was time consuming. Packing for four kids, one still in diapers, and myself for two different locales with specific clothing and footwear needs was tricky. Plus, we spent two whole days getting to and from our destination which is also tricky with four young children, one still in diapers.<div>
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So where did we go? Disney World Magic Kingdom, the beach and Sea World. It was an amazing vacation filled with unforgettable memories and, at times, overwhelming sadness. My boys were never far from memory. Our vacation timing, right over Christmas, was not a coincidence. Christmas has always been special to my husband and I since we married just before Christmas twelve years ago. We spent part of our honeymoon at Disney World and the beach. I have long wanted to share that trip with my children. </div>
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But there was a hidden agenda to the trip and the timing. Part of it was the above and part was just escaping what has some years become sheer madness at the holidays with family, presents, lists, cooking, etc. I needed a year off, some breathing space. Some space to grieve too. One of our favorite things to do at Christmastime is to visit our sons' graves on Christmas Eve to deliver their presents and see their sweet little Christmas tree lit up in the snow. With all of the other goings on the time left for that special trip has become less and less and things just weren't on the right track. </div>
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So we packed up and went to Florida, just us and our four little ones. I bought Wyatt and Eli Mickey Mouse ears with their names embroidered on the back and barely managed to avoid the awkward conversation about who Wyatt & Eli were with the store clerk. I have a pair of ears myself from my first trip to Disneyland and a Minnie pair from my first trip to Disney World and we purchased each of the girls their own so it was very important for me to get the boys their ears since this would have been their first trip too. I wrote their names in the sand at the beach and at Sea World we got them a Shamu and dolphin for their graves this Christmas. </div>
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Those aren't the moments that got me though. Grief was complicated. I almost lost it on the airplane with my extremely fussy 20 month old exhausted and sleeping on my lap. When Cinderella's castle was lit with hundreds and maybe thousands of Christmas lights so it sparkled from bottom to top my eyes sparkled too. </div>
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I learned yet another lesson. It doesn't matter where I am, how happy or distracted, how sad or uncomfortable, how busy or how stressed, the holidays will always have the same effect on me and my boys will always be extra close to my heart in those days. </div>
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Santa, you can commit this wish to memory because it will NEVER change: all I want for Christmas is my whole family to be together. My second oldest told me out of the blue that she wished Santa would bring something for Wyatt and Eli. She remembered this wish when we arrived home late Christmas evening and she looked at the two empty stockings. If only.</div>
Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com0tag:blogger.com,1999:blog-6099161620950219026.post-60246576772501354732013-12-06T09:42:00.001-06:002013-12-06T09:42:30.469-06:00Extraordinariness OversimplifiedI am moved this morning to remember Nelson Mandela and his undying legacy. Mr. Mandela's time on earth has passed but time will not pass him by. Mr. Mandela's words, actions and legacy will live on in eternity. He was an extraordinary man who accomplished extraordinary things in the most understated of ways and that to me is true greatness. Invictus - Latin for "unconquered" and inspiration and motivation in my life every day. <br />
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Invictus</h1>
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<span class="author" style="background-color: white; color: #4d493f; display: inline-block; font-family: Arial; font-size: 12px; letter-spacing: 0.05em; text-transform: uppercase;">BY <a href="http://www.poetryfoundation.org/bio/william-ernest-henley" style="color: #043d6e; outline: none; text-decoration: none;">WILLIAM ERNEST HENLEY</a></span><span style="background-color: white; font-family: Arial; font-size: 12px;"></span><span style="background-color: white; font-family: Arial; font-size: 12px;"></span><br />
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Out of the night that covers me,</div>
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Black as the pit from pole to pole,</div>
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I thank whatever gods may be</div>
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For my unconquerable soul.</div>
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In the fell clutch of circumstance</div>
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I have not winced nor cried aloud.</div>
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Under the bludgeonings of chance</div>
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My head is bloody, but unbowed.</div>
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Beyond this place of wrath and tears</div>
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Looms but the Horror of the shade,</div>
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And yet the menace of the years</div>
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Finds and shall find me unafraid.</div>
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It matters not how strait the gate,</div>
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How charged with punishments the scroll,</div>
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I am the master of my fate,</div>
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I am the captain of my soul.</div>
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Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com0tag:blogger.com,1999:blog-6099161620950219026.post-71083128197771843382013-11-14T08:45:00.000-06:002013-11-14T08:45:08.308-06:00Cuts Like a KnifeMy 7 year old daughter is currently studying the past, present and history in social studies. She brought home an assignment the other day to do a personal timeline. We were discussing important things that have happened in her life and I pointed out she had missed the birth of her siblings (3 have been born since she was). So she went back to work at the timeline and showed it to me later. She had included the birth of her two younger sisters but Eli was missing from the timeline. I pointed out where he should be and asked her if she wanted to include him. She said "probably not". <br />
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In that split second my insides crumpled like newspaper. Outside, I hope, my face registered nothing unusual. Casually I asked "why not?" to which she explained that earlier in the fall during her student of the week time she had explained she had two brothers in addition to her three sisters. The children apparently questioned her about her brothers and she told them her brothers didn't have kidneys and they couldn't breathe when they were born. Which is about as good of an explanation as any. But then she said they made fun of her. I asked how and she said they asked why her mom didn't just have another girl. <br />
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I'm not exactly sure what was said and how it was said but whatever happened made an impact on her and not one she cared to repeat.<br />
<br />
While I'm sad that this happened to her, I can't blame her for wanting to only include her living siblings. How many times have I only included my living children when asked by strangers or acquaintances? I don't always feel like explaining or dealing with the looks on their faces or whatever else accompanies what I tell them. It has nothing to do with Eli and Wyatt but everything to do with me. They will always be my children, ever in my heart and my mind, but they are also very sacred to me and sometimes sharing them doesn't feel as sacred as I want so I selfishly keep them to myself. I can't blame my daughter for reacting in a similar way.<br />
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So I thanked her for telling her class about Wyatt and Eli and left it alone. It hasn't left me alone quite yet.Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com2tag:blogger.com,1999:blog-6099161620950219026.post-78823509288979405732013-10-31T08:44:00.000-05:002013-10-31T08:44:05.886-05:00When the Hammer Falls Either Run or DuckI recently wrote about <a href="http://fromundertheweepingwillow.blogspot.com/2013/10/when-i-realized-healing-has-happened.html" target="_blank">running my first 10k</a> under extremely challenging weather conditions. The physical and mental strength and stamina I needed to run for one hour under those circumstances were significant to say the least. It didn't occur to me until I put that into written words how my life and personal circumstances fits into that same mindset right now.<br />
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I took on a new and very demanding volunteer opportunity at the end of last spring. Since then I've given it my all at the expense of my mental well being and so much time with my family. It is a good cause and one I would not continue with if I didn't strongly believe in its worth. Regardless it's taking a toll. I feel like it's just one catastrophe to the next and since I am the leader I end up having to clean up all the messes while trying to balance spinning plates on my head and both hands and sometimes a knee as well. I would never cut it in the circus. Too many broken plates.<br />
<br />
Power of a written word is amazing. Day after day I feel like throwing in the towel, or rather, just taking all of these plates that I'm spinning and chucking them as hard as I possibly can into a brick wall. The satisfaction of seeing them shatter would be worth it. At least that's what I tell myself. For a few minutes or maybe even an hour that much would be true. But then I starting thinking about that 10k. It was a painful experience but the feelings that hit me when I crossed that finish line were so worth it. As an aside, it's awfully creepy to finish a 10k not anywhere near last place and have no one but the timer at the finish line and he was sitting in a pickup truck. Told you the weather was Bad that day!<br />
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I finished. I persevered and no one can take that away from me. I built a little bit onto myself that day. I pushed myself farther than I thought I could go. Better yet, I didn't push myself to the brink which means I have even more to give. Afterwards I was very cold and very wet but I felt good. I placed better than expected but in all honesty very few people actually ran the race and I was just slightly off my goal time which was awesome considering how freaking windy it was that day and that I ran the last three miles straight into that 45mph wind. My volunteer position goes until the end of this spring which leaves me with many more months and probably many more catastrophes. A year is a lot longer than an hour to spend under that kind of stress. But in reality I've been through much worse. I've carried two pregnancies that ended with me leaving a hospital without my son and at the cemetery so I just don't think this can compare to that in terms of badness. Not much can. Now that I've put a little more perspective in this situation I just need to keep telling myself I've been through worse and I can get through this too. In fact, I may even feel good when it's over. I can hope, right?Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com2tag:blogger.com,1999:blog-6099161620950219026.post-40852604850750614072013-10-25T10:10:00.000-05:002013-10-25T10:10:01.398-05:00There Are Lessons All Around UsMy five year old just finished watching Disney's The Lion King. I tuned in when an adult Simba returned to the Pridelands and faced his Uncle Scar for the first time since he left as a child because he believed he was responsible for his father Mufasa's death. Mufasa believes he will get rid of Simba and confesses that it was he, not Simba, who killed Mufasa.<br />
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That revelation after so many years of self doubt, sadness and guilt, had to have been mind blowing for Simba. He spent many years away from his home and away from his family and most importantly, not being his true self, because he lived in the shadow of all of those complicated emotions. I get that he's a cartoon lion, but come on, there's a lesson in there for all of us. Especially us. Carrying guilt in our hearts over the loss of our little ones can only stand in the way of us being able to be our true selves. It can separate us from family, friends and ourselves. Guilt is a corrosive emotion which can literally change us from the inside out. <br />
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To quote the great Pumba, "[Y]ou got to put your behind in your past" er, I guess I'm looking for Timon's correction, "You gotta put your past behind you". That doesn't mean forgetting, it doesn't mean completely letting go. Hold on to your little ones, always keep them close. But it does mean doing what we can to recognize any guilt we carry and to get out from under it's shadow.Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com0tag:blogger.com,1999:blog-6099161620950219026.post-66058049632745189812013-10-19T13:57:00.002-05:002013-10-19T13:58:30.897-05:00When I Realized I Am Somewhat HealedAs I'm sure many of you know, this past Tuesday, October 15th, was Pregnancy and Infant Loss Remembrance Day. I knew that too but I didn't actually realize it until after 10pm that evening and even then I didn't come to that realization on my own. I happened to be reading a book with the local evening news on and bam! there was mention of pregnancy and infant loss remembrance. It got my attention immediately and just as quickly I felt like a schmutz. Here the whole day had passed and I did nothing.<br />
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It's okay, judge me. I know what an important day this is to the community of us who have lost pregnancies and/or infants. I never dreamed it would be possible to forget this day. While wondering how this could have happened, I realized that for me it is a signal that I've healed - some. I no longer want or need to announce my loss to the world which was a big part of my participation in October 15th in years past. I wanted everyone and anyone to know how much I had suffered. I needed to have some kind of explanation out there for how freakish I felt inside. As the days, months and years have passed I have assimilated that suffering into myself and at some point unknown to me it just became a non-defining part of me. I no longer define myself as bereaving mother though I know I will be one until the day I die. It is another hat that I wear underneath all of my others. It's a hat that I can't take off but one that I also don't show off. It's something I hold close to my heart like the other weekend when I ran my first 10k and woke up to a day of snow mixed with rain and 40mph+ wind gusts and instead of seeking refuge in my warm, comfortable home I went to that race and I ran it because I knew no matter how difficult it would be physically that I have suffered so much worse in my life and I would absolutely make it through. And I did.<br />
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I do so much for my boys now without even giving it conscious thought. They are my rock and keep me grounded when everything else is in the air. I just keep telling myself that I've suffered so much worse and I can get through whatever is dragging me down. I no longer need my pink and blue ribbon but I know exactly where it is. I'm sorry October 15th, I'm sorry that you didn't get the attention you deserve from me this year. I'm also incredibly grateful for those of you who gave it more attention that most, for those who make sure it is declared a day of remembrance, for those who place beautiful white roses and poems on all of the baby graves in my cemetery, for whoever got it on the local news that evening. Because October 15th is about more than me, Wyatt, or Eli - it's for recognition of the pain those of us who have lost little ones carry, it's about letting others know how and why they can help us bear that pain, and it's about letting anyone who has carried that pain know that it's okay to recognize the pain and that it's never too late. So I may be late, but to all those who have lost pregnancies or infants, God bless you, your families and your little ones. Mandyhttp://www.blogger.com/profile/16782799551687845797noreply@blogger.com1