tag:blogger.com,1999:blog-70381492279937109432024-03-13T02:14:01.901-07:00Shane's Street - Raising Congenital Diaphragmatic Hernia AwarenessRaising awareness of the condition that took my only child at age 6 and a half - Congenital Diaphragmatic Hernia CDH takes the lives of 15,000 children every year and harms 15,000 more. Will you care? http://www.cdhsupport.org
In memory of Shane Torrence (1/28/93 - 9/11/99)Unknownnoreply@blogger.comBlogger86125tag:blogger.com,1999:blog-7038149227993710943.post-21141679886468509852023-01-28T12:54:00.001-08:002023-01-28T12:54:20.792-08:0030 Years<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjGn4TaVvwzSH8t9w914GQ3kHgYV0uMF4LlB4iM1ptuflubCVZaShhF4DII0vX4BdfxQFQ7DJ4CRu1EcI7R8mNFxtj3kQ8LlG9yT2VEo3ngF9kUp1HIUAqSALQBzo-9ymXlSI8EqsDcvmf51kzw7ixKb5DhMeMadgyH3ZfoT_l7RxR3qmYcNRagDh7/s694/18118708_10155249954994819_2692334305661380273_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="694" data-original-width="694" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjGn4TaVvwzSH8t9w914GQ3kHgYV0uMF4LlB4iM1ptuflubCVZaShhF4DII0vX4BdfxQFQ7DJ4CRu1EcI7R8mNFxtj3kQ8LlG9yT2VEo3ngF9kUp1HIUAqSALQBzo-9ymXlSI8EqsDcvmf51kzw7ixKb5DhMeMadgyH3ZfoT_l7RxR3qmYcNRagDh7/s320/18118708_10155249954994819_2692334305661380273_n.jpg" width="320" /></a></div><br />It's been a while since I updated this blog. I'm working 80 hour weeks at the charity right now. Actually, 7 charities in 7 countries and I'm doing the jobs of many people as so many volunteers stepped down during Covid, we lost staff due to funding issues. But the research goes on. <p></p><p>I travel a lot now. For research, for my other jobs. I carry wings with me everywhere I go.</p><p>The days go by so fast. I work nonstop. I'm tired. I'm disillusioned with people now. </p><p>30 years.... 30 years of CDH. I hate that CDH and the charity often overshadow you, my love.</p><p>I've been trying to avoid thinking about today. This is a hard year. You would be 30. I am turning 50. I am second-guessing my entire life. I am wishing I could turn back time and never started the charity and given you every second of every day... and maybe you would still be here. We both sacrificed so, so much. But we follow the calling. Lots of good has been done. A huge CDH community was created because of you, sweetheart.</p><p>But I'd rather have you. </p><p>Would you be tall, like me and your dad? You looked so much like me but had your dad's build. Would you have played baseball? You loved books and cars. You would've gone to college... engineer, I think. Would you be married by now? Would I be a grandmother? I would've been the best grandmother. </p><p>Words are failing me today. I just want to go back. Start over. Be selfish and focus on one little boy instead of 1000's of other peoples' children. You deserved that.</p><p>I miss you, Shane. With ever fiber of my being, every second of every day for the rest of my life. You were all the good in the world wrapped up into one perfect little boy. Too good for this world. I love you. Always, forever, until you're in my arms again.</p><p>Love,</p><p>Mommy</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-37799294571339543342021-09-13T03:15:00.009-07:002021-09-13T03:17:24.537-07:00Another Year<p><b> I posted this on social media (that I use to raise awareness and for my job at the charity):</b></p><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;"><i>Another year without my little boy. <span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><br /></span></i></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;"><i>His death was preventable. If there had been better and more research, more patch options, more sharing of data, a Standard of Care to prevent his first surgeon from using a ridiculous material (never used before or since), a universal protocol on stabilizing CDH kids, better (ANY) info for us parents so we could’ve made informed choices.... my son would still be here. He was not a severe case. </i></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;"><i>All these years later, we are still fighting for the most basic of things most other anomalies / diseases have. We are still fighting for awareness, funding and an equal seat at the research table. We are still begging people to see these children.... and still even begging those who see them to help them. </i></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;"><i>We’ve made huge strides but it will never be enough as long as children are still dying. </i></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;"><i>My CDH family.... I beg of you.... please, please fight more. Not just for your own child. Not just posting on social media. Please roll up your sleeves and help a CDH charity and help build the community to save these precious children. All of them. Don’t “put CDH behind” you after you move on. Don’t say “I fight CDH every day” because you are raising a child with CDH... I did too. But we cannot CHANGE the future for these children unless we fight for the whole community. We have to have a bigger vision and more hands on board who care about these kids. And please, please don’t just post on social media or say” I support CDH families all the time” because they are your friends. </i></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;"><i>You send your child to school, you meet other parents, you help with homework, you do play dates, but if you don’t join the PTA, don’t volunteer, don’t work as a community.... you’re not helping to better the school that’s there for your child. Make sense? </i></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;"><i>And my doctor friends on this FB profile.... please, please listen to parents as your teammates. Use patient advocates. Give patients a seat at the research table. Treat us as equals. As partners. </i></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;"><i>I say all this not to wag a finger but out of sadness... because so many children are suffering and dying unnecessarily when together, we could stop Congenital Diaphragmatic Hernia so quickly. </i></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;"><i>I know it’s hard to donate. I have donated years of my life, rooms in my house, miles on my cars, my last penny to the charity at times. Because we need to fight CDH. </i></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;"><i>I know it’s hard to volunteer. I volunteered full time for 15 years. I had a child at home on life support when I began volunteering. I also ran a company for 10 years at the same time. I had a family. I had tragedies. I had illnesses. I have PTSD too. I grieve. I work all the time. Even now I work several jobs and run the charity. </i></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;"><i>I’m not superwoman. </i></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;"><i>I just know these kids need help and so few are actually helping them. </i></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;"><i>I don’t even have a CDH child here now to fight for since Shane died. I get up every day and fight for your kids.... won’t you join me and the other parents at CDHi who are fighting for your kids - and their kids - too? </i></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;"><i>Saving lives is never convenient or easy.... but look at this face.... all the faces of these precious children who deserve to grow up.... how can we not fight for them all? </i></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;"><i>So please, help them. Really, physically help them. Donate. Volunteer. Get involved. For all of these children. </i></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;"><span style="font-family: inherit;"><a class="oajrlxb2 g5ia77u1 qu0x051f esr5mh6w e9989ue4 r7d6kgcz rq0escxv nhd2j8a9 nc684nl6 p7hjln8o kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x jb3vyjys rz4wbd8a qt6c0cv9 a8nywdso i1ao9s8h esuyzwwr f1sip0of lzcic4wl py34i1dx gpro0wi8" href="https://l.facebook.com/l.php?u=http%3A%2F%2Fwww.CDHi.org%2F%3Ffbclid%3DIwAR2oRe-FZ4gh0jjrvm8z46zZkwAMOAb9oPLJwRRbucdjRfSI-ilci3LmsM0&h=AT3smzyEKMftczbEb5SWgQUTQiL0eSmn4VXAMqIGtgYOhC9n_7u9qbvgNpE-a0FPKVWnox6pGPuHdkrdmM2MsGsQWQGpIwcpauYJcX1UHiUIuS1_Xh_Nahp3szV6HM_R_5rk71CoKh8CunKSag&__tn__=-UK-R&c[0]=AT0rey26LF8vkcqZV9QoF93cY62CNmmhIT-sLHKJCNCAYk1ABu9aYQoMFwloPvYgYtU0atVdtjmRwsQ3Kux6W2ZMvyMGN1LzYqElJ3anXZ2B97BKGrwaXtvkfE_5m1TyXscBTNEDc8MltngWYbS7eWB65sExW4BhLQzd6CT2RoRGo-FtsGixxK-R8-HcbAAelJI_LaUH" rel="nofollow" role="link" style="-webkit-tap-highlight-color: transparent; background-color: transparent; border-color: initial; border-style: initial; border-width: 0px; box-sizing: border-box; cursor: pointer; display: inline; font-family: inherit; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: inherit; text-decoration-line: none; touch-action: manipulation;" tabindex="0" target="_blank"><i>http://www.CDHi.org</i></a></span></div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><b>But personally...</b></div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;">It's getting harder each year to live immersed in the CDH world for decades after you gone, Shane. You are with me every single day. I'm just getting weary of fighting Congenital Diaphragmatic Herni and begging others to fight too. We shouldn't have to beg. I don't understand how others don't want to fight it collectively to save children. </div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;">I couldn't "go on with my life" after your death, knowing that other children could be saved. I'm not made like that. It's hard for me to comprehend that most people are made like that.</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;">I look at your photos every day because my job was created at a charity created because you were born. </div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;">I travel around the world now for research for CDH, rare diseases and congenital anomalies and I always have you with me... a pair of wings to physically take you through life with me. 1000's of photos of "you" now. I am trying to get that book done this year. </div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;">I am trying so hard to live my life and make you proud but I'd selfishly walk away from the charity and all this work in a heartbeat to have you back, to have never heard of CDH, to have a 28 year old son and dreams of being a Yaya to your children. All the 'what if's" seem to haunt me more with each passing year... all the "never will be's" are so so hard. The reality setting in that I won't grow old with you and a family... it's so hard. Some days it's crushingly hard. I made a lot of decisions in my life to put the charity before myself and now I am dealing with consequences and regrets and jealousy that others never had to make those decisions or give those sacrifices... and they have "normal" lives, families, etc... they could just walk away. I couldn't. It's hard. I just want you back. I want to go back to 1995 over and over again. I literally think about it every day... but I force myself to stop trying to live in the past and to move forward. And my life is GOOD! I am happy! I just grieve and I always will. Because it's not fair and you should be here and the life we planned should have happened. CDH took all that. I will fight that monster until I die. I suppose that's why others have "normal" lives... and why I fight, so they can have those lives. This is why I'm still here. Why I survived the past 2 years despite becoming a patient too. My job here is this. Your job here is this. I hope others whose job this is too will come help fight. I am weary but I won't lay down the sword.</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;">This week, "we" are in Greece.</div><div dir="auto" style="font-family: inherit;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXRGjfIwnO82eBDQiMTHv-TORSikn14Giy8UJ0YpHXdHrduifDFaM7Qnh2AKz4wKem961JdJz0A8593ZKMIBAZUOzZMU7dlKy6fRrfzcoTJKWLRZQcyav0rq-4TBRYyHn6yTmpamCmeb4/s4496/DSC_0154.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3000" data-original-width="4496" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXRGjfIwnO82eBDQiMTHv-TORSikn14Giy8UJ0YpHXdHrduifDFaM7Qnh2AKz4wKem961JdJz0A8593ZKMIBAZUOzZMU7dlKy6fRrfzcoTJKWLRZQcyav0rq-4TBRYyHn6yTmpamCmeb4/s320/DSC_0154.JPG" width="320" /></a></div><br /><div dir="auto" style="font-family: inherit;">I always wonder what adventures we would've had if you had lived. I'm trying so hard to have all the adventures you should have had. I'm trying so hard to focus on LIFE!!! </div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;">I miss you so much, my love. So very, very much. To the moon and back, I love you always.</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;">Love,</div><div dir="auto" style="font-family: inherit;">Mommy</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><br /></div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-12489421175438766332018-01-28T10:02:00.001-08:002018-01-28T10:35:47.639-08:00Happy 25th Birthday, Shane25 years ago today..... how can it be 25 years? I still feel 25 years old myself.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFf030zW850BasAjDtUFz10CqAI-xGeq9eNLZFQNWt7CWCBw71vi32ob1P2D-j6hj3lsfRuuzYBDelSdHSZvUsfR13lS3gF8jiZehRaq2ADcvXaoh6Sl2e9Cu63SIJoEoQhhd_3E2ncc4/s1600/12525146_10153886990509819_3563577564810521473_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFf030zW850BasAjDtUFz10CqAI-xGeq9eNLZFQNWt7CWCBw71vi32ob1P2D-j6hj3lsfRuuzYBDelSdHSZvUsfR13lS3gF8jiZehRaq2ADcvXaoh6Sl2e9Cu63SIJoEoQhhd_3E2ncc4/s320/12525146_10153886990509819_3563577564810521473_o.jpg" width="320" /></a></div>
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<br />
I still remember every single second of the day that you were born. Every. Single. Second. I relive it every year. PTSD and mom pride all wrapped into one.<br />
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I remember all 6 of your birthdays. The very best days of my life. I remember your laughing. You blowing raspberries happily as you read a new book or played with a new matchbox car that you received for your birthday. I remember the way you felt in my lap as you played with those toys. I remember being so happy. So very, very happy. A house full of family and friends, celebrating YOU. That you were here another year. Our families were so close then. All the kids so little. Even though we'd been through a lot already at the time with all your medical issues, we were so very naive of how horrific life could be. We still had you. We still believed that nothing truly awful could happen. We were blissfully unaware that you'd only have 6 birthdays.<br />
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You've been visiting my dreams lately. When I'm completely overwhelmed with the charity work or when I was going through divorce court with your ex-step-dad or when I just got tired and selfish and angry that life hasn't turned out exactly how I had planned... growing old watching you grow up with a house full of siblings and then watching you go to college, marry, making me a grandmother. I'm not bitter, I embrace that that wasn't the life we were supposed to have. I understand your purpose. And mine. I accept that. I work hard to fulfill your mission. But I'm human. I have good days and bad. And you've let me know several times this year that you are here with me.<br />
<br />
Today, I heard you. I'm in Texas at a conference, holed up in my hotel room sick instead of seeing other CDH families today. No sleep after being kept awake by groups of dancers/cheerleaders at 1:00 am in the hotel. A bit cranky. Happily single but frustrated with dating. As usual, your birthday and angelversary weed out the weak guys. Sitting at breakfast and annoyed that the guy I currently have a crush on hasn't acknowledged your birthday. Hasn't said a word to me. Hasn't shown any hint that he actually cares about me, or you. And another one bites the dust. Was expecting better from him. Just a text of "thinking of you today" is not too much to ask, right? I go through this every single birthday and angelversary. Because I want the man I'm dating to respect your memory. As he should. So years of this nonsense... 3 years of dismissing guys who lack empathy... annoyed. You'd be 25 years old this year... it's hard. I do want to curl up in someone's arms and cry. I'm your mom. This day hurts. Your memory has always been the ruler by which I measure a man's character. No one has measured up so far. Not even close. How sad is it that the absolute lowest standard of just a comment, a kind word, an acknowledgment... is too much for most. No man but your dad will ever truly understand, I get that. But kindness in the world is so hard to find now. The world is so much harsher now than when you were here in it. Maybe it's because the world is harsher... or maybe because I'm more awake to it without you. <br />
<br />
So I'm eating breakfast and wallowing in self-pity and missing you and annoyed at this guy and annoyed that this guy is even a thought when today should be about YOU. Then.... clear as day, I heard a young man's voice say "Mom, you deserve better". As if you were sitting beside me. I'm completely alone. It could not have been some guy passing by. No one is here but me. And you. <br />
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It's not about dating. It's not about guys. You are here with me. You are always with me. You keep reminding me of that. And God, how I needed reminding of that today. Thank you. And you are right. I deserve better.<br />
<br />
I often wonder what type of man you'd grow up to be. I think now I know.<br />
<br />
Thank you, Shane. I love you, more than life itself, until the last breath in my body and then beyond. Happy Birthday, my son. You still make me proud. You have always been, and continue to be, the love of my life.<br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-56146172898362359132016-09-11T10:36:00.001-07:002023-01-28T13:45:43.787-08:00Telling Shane's Story on the Annivesary of His Death17 years ago you earned your wings, Shane. It's been at least 10 years since I sat down and told your whole story. I don't know why. Maybe because it's my job to represent 6000 children born with CDH. Maybe because it drives me nuts to see people work so hard to elevate one patient's name when so many others are sick and dying too. Maybe because I was raising you to be kind and humble and I never wanted the charity to be about you. Or maybe it was simply because it's painful to share so much and I just wanted to keep you to myself.<br />
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But more than half of the families at CHERUBS have never heard your story. Many of the new generation don't see me as a grieving CDH mom too. Your name and photo is rarely included on awareness projects when they list all their CDH friends' children. I'm just here to provide a service, run the charity, give free stuff.... to some. Not everyone thinks that way. Some remember. But this problem has gotten worse the past 2 years. This generation is not like the one that was here when we started, when everyone just wanted to help everyone and no put their child first and there was no social media or cliques or drama. The cause came first. Saving babies came first.<br />
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So many have asked about you lately though... and I admit, the mom side, the human side of me... it hurts when you are forgotten. Above all, I am your mommy. You matter too. You lived. You fought CDH. Your memory lives on.<br />
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So on your angelversary, I decided to do a live Facebook video and share your story. I had no intention of crying, but then I wear my heart on my sleeve. It is raw, it is true, is our story. <br />
<br /><br />I love you and miss you my son, forever. <div><br /> <div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/sCPDRIBRkOU" width="320" youtube-src-id="sCPDRIBRkOU"></iframe></div><br /></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-46539385500883454082016-04-06T12:25:00.001-07:002016-04-06T12:25:08.878-07:00Congenital Diaphragmatic Hernia Awareness Month<span></span><br />
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<span data-offset-key="a02il-0-0"><span data-text="true">This photo was taken in 2008. On the 8th anniversary of my son's death. It may look like a strange children's party at the cemetery, but sending balloons to Heaven is all a grieving parent has sometimes.</span></span></div>
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<span data-offset-key="7eo0b-0-0"><span data-text="true">I'm posting this for Congenital Diaphragmatic Hernia Awareness Month</span></span></div>
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<span data-offset-key="7ljn6-0-0"><span data-text="true">I don't have school photos or a graduation photo. I don't make posts about my son not picking up his dirty socks off the floor or playing his music too loud. I've never posted a photo of his first baseball game. I've never had such a photo. I will never have such a photo. You won't see me complaining about having a lazy 23-yr-old who won't finish his college classes or get a job. I wish I could have him here to complain about. I even wish I could still complain about how hard it was to have a sick child or spend nights in the hospital. I'd give anything to have to wake up at 2:00 am for a broken feeding pump or to change a diaper. I'd love to stress about another IEP meeting or spend hours a week in physical therapy, occupational therapy, speech therapy and sight therapy. I miss fighting with the insurance company. I'd love to pinch every penny to afford diapers and gas to the hospital because my ex was out of work half the month because Shane was very sick in the hospital. I'd give my life to hear him cry or squeal or play a musical toy for the 10000th time and grate on my last nerve because I'm emotionally and physically exhausted. I can still sing every song put out by Sesame Street from 1993 to 1999. </span></span><span data-offset-key="fdh8e-0-0"><span data-text="true"><span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM4jqtwZ8P9VGyaT96XfjHGb-xZ04xb2EIebVmbYpNz4sXXd75O5K-gAlCLrnc0xkMqMHBHZFxmmodeL0bj_0N_eM5CK8gYcDDg4zZUtNr771Rdsk6BAauR4COR7kMUSnq3zzGe4SttB8/s1600/12932549_10153522828552006_742621204631267778_n.png" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM4jqtwZ8P9VGyaT96XfjHGb-xZ04xb2EIebVmbYpNz4sXXd75O5K-gAlCLrnc0xkMqMHBHZFxmmodeL0bj_0N_eM5CK8gYcDDg4zZUtNr771Rdsk6BAauR4COR7kMUSnq3zzGe4SttB8/s320/12932549_10153522828552006_742621204631267778_n.png" width="320" /></a></span>I wish I was tripping on Shane's toys in the floor. I'd love to have his surgeon on speed dial still. I'd even love to have back the guilt that I felt when I complained about all the issues of having a medically fragile child when I knew so many who didn't have their children. That guilt was easier than this. Anything, anything but this. How little did I know then how much I'd miss that life when all I did was complain about how hard it was even though I knew I was blessed. There was no way to comprehend how much I'd miss it. How much I'd miss him. After all these years, I still miss him and need him like I need air to breathe. </span></span></div>
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<span data-offset-key="fdh8e-0-0"><span data-text="true">All I have are visits to the cemetery. I have just memories of worry and pain and hardship and watching my child struggle his whole life. I don't have my child. CDH did that. 50% of families only have memories. 1000's of families just like mine.</span></span></div>
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<span data-offset-key="denik-0-0"><span data-text="true">Learn more about CDH at <a href="http://www.cherubs.org/">http://www.cherubs.org</a></span></span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-47218305247286340482015-12-20T09:28:00.000-08:002015-12-20T09:28:16.527-08:00Merry Christmas, my son<div class="separator" style="clear: both; text-align: center;">
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Incorporating Shane's memory into the office for Christmas.<br /><br /> <i>DISCLAIMER:</i><br /><br /> Have you seen all the photos in the news about grieving parents incorporating their children's memories into photos? I've become obsessed with them. I think they are beautiful. What do you all think?<span class="text_exposed_hide">...</span><span class="text_exposed_show"><br /><br /> I recently moved and I've been looking at photos of Shane that i haven't looked at in years. It's been emotionally draining. Tonight I just felt pulled to do this photo. I have 10000 other things to do before Christmas but I couldn't shake this so I gave in and did it.<br /><br /> I don't have a little family (no husband or other kids - going through a divorce) so what I do have for a family and where my son's memory is remembered the most is at CHERUBS. This is our office hallway. The tree is decorated with my personal ornaments, including Shane's. This is where his spirit lives on for me. This photo is a way to include him in my current life and raise awareness. It is symbolic. It's not the best graphic quality... I have never done this before.<br /><br /> I have a very dear friend helping with a project similar to this (his will be much better than mine! He's an amazing photographer) and I've spent months talking to him about a way to do this for all our grieving parents. We are working on ideas. How many of you would be interested?<br /><br /> So here it is. Little afraid to post this as there are 3000+ eyes on this profile. I don't mean to offend anyone. Please don't offend me either. I won't deal with negative comments or judgmental comments. I will freely use the unfriend button.<br /><br /> If you're not familiar with CDH and Shane's story, you can go to CHERUBS site at <a href="http://l.facebook.com/l.php?u=http%3A%2F%2Fwww.cherubs.org%2F&h=pAQEt04lA&enc=AZPw2adb9JFNtcTdfbDoFayderaXlamDzeOCBGfQypxS4Lc6RBZs7BHZ2JZjhW0A3OpnpkyEOle11tzNRzskkWe0N-IkIEvYzmLIbzPBdlAodSPTahYBtt4PRw6oQJaLBLc2gcfirG72scIKjM11tXSc&s=1" rel="nofollow nofollow" target="_blank">http://www.cherubs.org/</a> or Shane's site at <a href="http://www.shane-torrence.com/" rel="nofollow nofollow" target="_blank"><span>http://</span><wbr></wbr><span class="word_break"></span>www.shane-torrence.com/</a></span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-68018293037263578922015-01-28T09:32:00.001-08:002015-01-28T09:32:53.165-08:00Happy 22nd Birthday, Shane<a href="http://www.cherubs-cdh.org/about/news/159-2014-year-in-review">So much has happened</a> since my last post in September. So many good things. Awards, events and now we are close to <a href="http://www.cherubs-cdh.org/about/news/167-1-million-for-congenital-diaphragmatic-hernia">raising $1 Million for CDH</a>. All good stuff.<br />
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We are working hard and staying busy but days like today are still hard.<br />
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For all of 2015, we are writing open letters to Nicholas Sparks to raise CDH Awareness. I got the opportunity to meet him, he knows about the letters and hopefully will decide to help us. Crazy idea? Of course. That's what we're best at! Someone has to help these kids.<br />
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<a href="http://nicholassparkscherubs.blogspot.com/2015/01/january-28-dear-nicholas-sparks.html">This is my letter to Mr. Sparks for today. It's about Shane's 22nd Birthday.</a><br />
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Happy Birthday, sweetheart. Mommy loves and misses you always. <br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-18215598640154647392014-09-26T09:05:00.000-07:002014-09-26T09:05:40.728-07:00CHERUBS rang the Closing Bell on the New York Stock ExchangeThis is where I was last month...<br />
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CHERUBS rang the Closing Bell on the New York Stock Exchange on Friday, August 29, 2014, raising Congenital Diaphragmatic Hernia Awareness. That's me, Shane's mom, with the gavel.<br />
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View the video at <a data-mce-href="https://www.nyse.com/bell/recent" href="https://www.nyse.com/bell/recent">https://www.nyse.com/bell/recent</a><br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-22002865377941365472014-09-11T10:00:00.000-07:002014-09-11T10:00:00.986-07:0015 Years Since I Said Good-ByeSeptember 11th marks 15 years since I last held you, kissed you, rocked you to death, looked at your face, tucked you in. 15 years ago CDH took you away from us. Sometimes it seems like yesterday and sometimes like a different life.<br />
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It's been a very busy year at the charity and I've been very busy remembering you, my son, my Shane. I took photos around Ireland with wings for you and all the cherubs. I was honored to stand with our charity and ring the closing bell on the New York Stock Exchange 2 weeks ago. I went to Capitol Hill for all of you. I lit a candle for you in St. Patrick's Cathedral in Dublin. I let balloons go for you in North Carolina. I remember you, Shane. Every single day. And I get up every single morning and I live. I really LIVE. Because if you can't be here to live and go on adventures and grow.... then I will do enough for the both of us. <br />
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"Being angry with God" has been a hot topic this year and I have to say... I have never been angry at God. I never asked "why you" or "why me". Why not you? Why not me? Babies get sick, children die, CDH strikes. Why would we be so special as to have immunity to that? Why would I wish it on someone else to spare us? This is the hand we were dealt, the lives were meant to have. And somehow, I think you chose this. I think you knew. And I think I'm the most blessed mommy in the world to have had 6 and a half years with you. How could I ever be angry when I'm so thankful? Is it fair? Of course not. But I'd rather accept what is and make the best out of it and honor your memory than crumble up and die or cloud your memory with anger. You didn't live or die in vain. I won't either. I owe you that.<br />
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I have met many, many other CDH families this year. I learn from every
single one of them. I am in awe of Zoe's compassion, humbled by
Jennifer's strength, inspired by Clair's tenacity, calmed by Ashley's
grace, pushed by Tara's passion, wowed by Josh's loyalty, floored by
Tracy's generosity.... every single day I learn from them and their
children. And every single day I feel closer to you by being closer to
them. And the cherubs... Princess Charley has your other "baby doll"
because it felt like it was always meant to be given to her. I see you
in her so much but such a determination and strength... she's going to
be here a long time and probably will have my job some day. I hope.
Brandon, your buddy... he's 18 now. Aunt Tara still like my sister.
Aunt Barb now I hope with you. And I pray you're watching over Aunt
Judi and Brenda. Life goes on and new CDH families come along, new
friendships are made and the old ones are cemented in my heart
forever. I cry over every baby lost, knowing the journey their mom and
dad is now taking and I ask you to guide each of them up there. <br />
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15
years... you're doing your job and I'm doing mine. <3 p=""></3>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-69319107364799489002014-04-26T09:18:00.000-07:002014-04-26T09:18:17.222-07:00Shane's Story - Chapter 16It wouldn't be a complete story without including how Shane lives on and how I survived grief.<br />
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Yes, that's "survived grief". Because not everyone does. There is a word for the loss of a parent (orphan) or the loss of a spouse (widow/widower) but no word in the English language for the loss of a child. I thought depression from raising a special needs child was hard.... that was a cake walk compared to grief.<br />
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I wish I could say that Jeremy and I made it through grief together, but we didn't. We both handled it in our own ways, away from each other. We were still young - only 25 when Shane died. Too young to cope with something so horrific. My entire world had revolved around Shane and then he was gone. People gathered around us when he died, then they were gone back to their normal lives. The world kept going on without my son... didn't everyone know he died? How could they act like nothing had happened? Jeremy went back to work and I as home. Alone. All day. People get back to their lives and stop checking in on you after a week or two. It's human but being alone in grief is like solitary confinement and it's you alone with your memories, thoughts, regrets, grief. I kept waiting for Shane to walk down the hall with all his toys or bang a door shut (which he always did when someone left a door open). I thought I heard him blow raspberries. I found his toys under the sofa where he threw them. His formula was still stockpiled in the kitchen. His schoolwork still stacked up. His dirty clothes still in the laundry. Wasn't he just right here??? Every day felt like it took me farther and farther from him. We were so blessed to have so much time with him and to have him home but his memory was everywhere, there was no escape. Not at home, not at family members' homes, not in the car, not even at the grocery store... he was everywhere and there was very little respite from the suffocating memories and grief.<br />
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Making it harder was having a tremendous amount of guilt for being a grieving CDH parent who had a ton memories and photos and time with my cherub when so many hadn't. I didn't fit in with the survivors anymore and I didn't fit in with the grieving parents either. I was in between both worlds and I now knew enough to be able to support almost any CDH family from first-hand knowledge. It was a degree I didn't want. I felt like I couldn't/shouldn't talk about Shane because his story terrified expectant parents and parents of survivors and saddened grieving parents. I ran a support group but needed support myself. I was a mess. Don't get me wrong, the charity members were amazingly supportive but how could I lead now when I was so weak? I had been so full of myself, so sure that I had some secret weapon to beat CDH. I was put in my place. I knew nothing, I probably never did. I had just tried my best to be a good mom and we were blessed. It was never in my hands.<br />
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Jeremy and I tried to make it work but we didn't have the coping skills or maturity to stay married. We were still just 25. Too many bad things had happened to us during 7 years. We only reminded each other of pain. We haven't talked for 10 years now but I wish we did. He's the only other person in the world who knew and loved our son the same way I did, has the same memories of him that I do. We will share that always. I wish him well and hope he found happiness again.<br />
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The charity secretary at the time, Judi, took over for me
for a while and did an amazing job. She drove to my house when Shane
died - she was the first person I called other than my parents from the
hospital. She was an anchor for me through everything and being a
grieving CDH mom herself, she knew what to do, what to say. We were a
great team and she had unlimited energy and passion to help CDH families
like I did. 2 years after Shane's death to the day, Judi was in the
Pentagon during 9-11. She called me during the event, terrified.
That's the type of friends we were. She survived but was sickened by
asbestos and is no longer involved with us because of severe
disabilities. I really hate September 11th; it took 2 people from us.<br />
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Within those 2 years, I also lost my father-figure, my grandfather. My baby sister was diagnosed with terminal cancer. Judi started becoming very ill. I did a lot of driving back and forth to all of them. Alone. Being alone in a car with all your memories and grief is hell for a grieving parent but I learned to cope with it. <br />
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What got me through when I really had NOTHING left? My sister needed me. Her 3 kids needed me. She never knew it but she saved me. Watching her fight so hard to live made me feel like an idiot wanting so bad to give up. God didn't hear my pleas to take me instead of her, like He didn't hear my pleas to take me instead of Shane so I had better straighten up and get out of my self-pity hole because she needed me. When she took her last breath after fighting Rhabdomyosarcoma for 2 years... I felt Shane in that hospital room with us. I know he was there to come get her and no one will ever convince me otherwise.<br />
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After she died, grief set in again. Now what? In all it was about 5 years of non-stop rolling waves of grief. It took me 2 years to go back into Shane's room and only then because I
had to move. Packing up his things was like burying him again. Saying
good-bye to my family, my home... it truly almost broke me.<br />
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But it didn't. It took me a few more years to grieve my sister and grandfather now too and get my life back together. During this time the charity work slowed as I focused on helping with my sister, her kids, divorcing, getting a job, moving, surviving. Judi was sick and unable to help. I asked for volunteers, I asked for help and no one stood up. 11 years later I still get comments about how CHERUBS wasn't there for a few years (we were here, the on-line support was still there).... but I was just a young, grieving mom volunteering to try to help others when I could. I did the best I could at the time. <br />
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<div style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_UiUHd6_MvSrjBCUUVx750UgvJSQlCW6D4_Em4lcaZjmVHUQasgEGvVj2uH2Muc9S-0qI-kUSdyga5E-J-r6ZI6Odbd-rU-Mslpg2fTfTn48bZlmRA5ogimqtHxX9ycr4Df1T6_w3HLk/s1600/cemetary.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_UiUHd6_MvSrjBCUUVx750UgvJSQlCW6D4_Em4lcaZjmVHUQasgEGvVj2uH2Muc9S-0qI-kUSdyga5E-J-r6ZI6Odbd-rU-Mslpg2fTfTn48bZlmRA5ogimqtHxX9ycr4Df1T6_w3HLk/s1600/cemetary.jpg" /></a> </div>
<br />
Fast forward a few years.... and I DID survive! I became stronger, independent, self-sufficient, ran my own company and slowly rebuilt my life. I got up every day and forced myself to look forward instead of backward. I wasn't going to stop living too. And when I was able, I grew the charity more as I could. Grief never ends. You never stop missing your child but it does get easier to cope with and manage grief. There comes a point when you stop crying and start smiling missing your child. I don't know exactly when it happened for me... maybe around year 5. But it happened. I wouldn't trade a single, solitary minute of my life with Shane or my grief if it meant never having him. He was and always be the best part of me and the biggest part of my heart.<br />
<br />
8 years after I lost Shane, 6 years after Jeremy left... I met Craig. He gave me my laugh back. He taught me how to have fun and enjoy life and see there are other things in this world except CDH and grief... imagine that! We were married in 2008 and I became step-mom to twins, Braden and Garret, who are now freshmen in college. I get to be a step-mom to these 2 boys I love as much as if I gave birth to them - even though they were teenagers when I got them. Let me just say that dealing with "normal" parenting issues has been an eye-opener but I feel so blessed... normal stuff like teenage years and bad grades and smart mouths! Not hospital stays, surgeries, therapies and feeding tubes. It's a completely different world that I love equally. Having a family again means everything to me. I have 3 sons and a husband that I love more than anything on earth.<br />
<br />
I never had more kids of my own. I desperately wanted to but it wasn't meant to be for me I suppose. But I have 1000's of kids through the charity, my boys, my nieces and nephews. I am surrounded by a lot of love and a lot of children... what could be better than that?<br />
<br />
Now, I work just 1 job - at CHERUBS, so that I can have a "normal" life and time with my family. Not that I don't still work 60 hour weeks sometimes! :)<br />
<br />
I never thought I could be happy again after losing Shane. I never thought I'd have a family again or a life that meant anything without him. I was wrong. Now each day doesn't take me farther away from him but closer to him.<br />
<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-32719419623839604422014-04-25T06:56:00.002-07:002014-04-25T06:56:27.321-07:00Shane's Story - Chapter 15(WARNING: This may be too hard to read for many but it's part of Shane's story)<br />
<br />
The funeral was held back in Virginia in the little town where we graduated, married, Christened our son and now said good-bye to him.<br />
<br />
Shane was buried on my parent's property. The county where my family lives is so remote that there were no cemetery laws. What was once fruit orchard was turned into a cemetery in 2 days thanks to my father and friends who took the trees up and created a family resting place. You see, other than my very old great-grandparents from Rhode Island, no one in my family had died for 50 years. Death had only touched me through the funerals of other cherubs and church members before this. We had no plans of where to be buried, much less where to bury our son.<br />
<br />
I don't remember the visitation the night before funeral very much except that my best friend was there and friends from high school. I remember walking around handing other people tissue, trying to comfort them instead of just sitting and grieving. I didn't want to sit still, I had to much to do. It was the last thing I could do for my son and it would be done right.<br />
<br />
The funeral director had very little experience with children (thankfully) and they tried hard to do a good job... but Shane didn't look like himself at all. I make the mistake of kissing him good-bye on his forehead. I wish someone had warned me not to. Shane was laid to rest in a Sesame Street outfit, his sneakers, wearing
his favorite baseball cap and his glasses and holding his baby and
surrounded by his favorite toys.<br />
<br />
We made his funeral programs ourselves. No peach, floral, cookie-cutter good-bye programs for my son. I designed, printed and folded them. Because I was his mother. They were bright, cheerful,<br />
<br />
The tiny church we had one Christened him in was now full of people saying good-bye to him. Every pew was full and people stood outside. His uncle David (a preacher like my father-in-law) gave the eulogy though I honestly don't think I heard a word he said but I'm sure it was beautiful and appropriate. Shane's casket was open, against all advice from my mother. But I had to see one last time. I said good-bye to him with Jeremy and then the casket was closed. That is a sound no parent should ever, ever have to hear. That is a sound that will stay with me until the day my own casket is closed.<br />
<br />
It was a long drive from funeral home to the gravesite. We rode with Shane's godparents, chauffeured by the funeral home. I have no idea what we talked about or if we even talked. I don't know if I cried. I just remember looking at the floor board a lot for some odd reason and feeling like I was watching a movie of someone else's life because surely this couldn't be the day my son was being buried. Not my son. He had beat CDH. Many times over. He had proven the doctors wrong. He was our miracle. He was the center of my entire universe. I had dedicated my life to him and to helping other CDH families... wasn't I assured some cosmic guarantee or life insurance on my child? Wasn't I God? Hadn't I done everything right? This couldn't be happening.<br />
<br />
The gravesite was down a long dirt road that passed my parent's home. Our car drove right to the cemetery while others lined up and parked where they could. Shane's nurses drove from NC to VA to be there. CDH parents had driven 100's of miles to come to my home (Tara, in the middle of the night drove from OH to NC to be with me... there is nothing I can ever do to repay her for that), to the funeral or the gravesite. There were flowers, cards and teddy bears from around the world that arrived from our dear CHERUBS friends.<br />
<br />
At the graveside we released 6 Elmo balloons for every year he
spent here and 100 blue, red, and yellow balloons for every year he
should have spent here. It was raining that day but it stopped just as
the funeral started and the clouds actually parted over the cemetery. We
had a Sesame Street cake at the wake (the wake was after the burial).
It was not a typical funeral, but he was not a typical kid. We wanted to
celebrate his life. <br />
<div>
<br />
After everyone had left after the wake I was outside in my parent's yard
and pollen from a tree I had never noticed before and never remembered
having pollen starting falling and blowing around like snow. The pollen
was just the shape and size of little feathers from the wings of
cherubs. It blew around me like a scene from a Christmas movie and I was
very peaceful at that moment. Maybe it wasn't pollen. Maybe it was
Shane letting us know he had reached heaven and was now with the other
cherubs.</div>
<div>
</div>
<div>
</div>
<div>
We had a memorial service in NC the following week and more members of
CHERUBS came, including Susie and Jim from SC and our dear, dear friend,
Rhonda, who was with us in the very beginning when our sons were
hospital roommates so many years ago. One of our members, Beth, had even
come to visit Shane when he was in the hospital. I don't believe there
could ever be a better group of people like we have in CHERUBS.<br />
<br />
His headstone has pictures of Elmo, Big Bird, a truck (he loved his
dad's truck), and one of the logos I had drawn for CHERUBS web site- a
cherub wearing suspenders and glasses (one I had created to look like
Shane). How do you fit an entire, even though short, life on a stone? We
wrote a few words about Shane on it, his name, the dates, and also
carved on the stone is "Psalms 18:10"- He flew upon the wings of
cherubs, yeah he did fly like the wind.<br />
<br />
(to be continued) </div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-24619796846071459632014-04-24T06:46:00.000-07:002014-04-24T06:46:42.741-07:00Shane's Story - Chapter 14<br />
September 11, 1999<br />
<br />
Jeremy woke me up at about 4pm. His parents were visiting and
Shane was "acting funny" so I got out of bed. When I went into the
living room, Shane was sitting in the floor, surrounded by toys, Sesame
Street blaring on the television, holding his best friend, "baby" (a
stuffed Precious Moments pillow) and his Mimi (Grandma) was doing chest
p.t. on him. He was coughing and the ends of his fingers were a little
blue. I started to give him an albuterol treatment and sent Jeremy to
the store to get a bulb syringe to see if we could clear his throat for
him because he kept pointing to his mouth. I finished the treatment and
started doing chest pt with Shane sitting in my lap. He was getting a
little bluer so I called 911 and told them to send an ambulance just in
case. One minute he was sitting there, seemingly ok except for the
cough, and then he just passed out. I laid him down and tried starting
beating his chest and shaking him to wake him up. Jeremy walked in just
as he passed out. He was turning blue and I couldn't see his chest
moving. I tried to get a pulse but I couldn't. I called 911 again,
screaming "Where is the ambulance, he's coded. I called 5 minutes ago
and we only live 2 blocks from the hospital!!!!!", all the while trying
to do CPR. I handed the phone to Jeremy's mom so I could do
mouth-to-mouth and when I went to blow in I could hear gurgling. I could
barely get air in. <br />
<div>
<br />
Jeremy's mom was on the phone and running around the house getting me
the oxygen tank, ambu bag and anything else I screamed for (God bless
that woman for being there and being calm and being such a huge help).
While I was doing CPR, his chest tube blew. I was flashing back to the
day he was born throughout it all- I could hear words coming out of my
mouth, I was doing CPR mechanically without thinking about it, and yet
an entirely different conversation and experience was going on in my
head. It was like I was watching and not participating and all I could
think was "Please God, no, please God, no….". </div>
<div>
<br />
The ambulance finally got there. It was probably only 10 minutes from
the first 911 call but it seemed like forever. I TOLD them I was riding
along, they didn't want me in the ambulance. They had an ET-tube in
Shane and were trying to get an IV line in. We got to the hospital and
the staff wouldn't allow me in the crash room. I stood outside the door
screaming that I was his mother and that they didn't know his history
and I was no typical mom and they had better kill me before they were
keeping me out of that room. One of the doctors finally relented when I
started rolling off Shane's medical history and medical terms that he
probably couldn't believe were coming out of this strange woman's mouth
who obviously didn't look like a medical professional, having not even
had time to brush my hair and wearing a stained sweat suit (stained from
Shane). When I finally got in there I talked a nurse into finding
Jeremy (who had followed us to the hospital) and bringing him in and
talked the doctor into calling Shane's surgeon (thank God for Dr. Taylor
explaining to him who we were and what we knew, the doctor's attitude
toward us did a 180 after that phone conversation). Jeremy and I just
stood there, holding each other, and watching the monitors. They
couldn't shock Shane because he still had systolic pressure. It took an
hour to get a good line in him (and surgery to get it). There were a
dozen people in there working on him and every 10 minutes or so the
doctor came over to us and told us that they weren't getting any
response, even after pumping him with Epinephrine. I only left the room
for a few minutes to call my family. </div>
<div>
<br />
In what seemed like only seconds, 2 hours had passed and then I had this
calm come over me. I always told other parents that they would "know
when it was time to let go". Now we knew it was time. After 2 hours and
pnuemothoracies (air in his chest cavity from all the bagging), his
diaphragm probably totally gone, and his brain irreversibly damaged,
Shane was gone. Shane was gone before we even left the house. The doctor
came over to us again and we told him we knew it was over. I asked them
to keep working on him long enough so that we could say a prayer and
Jeremy and I could hold him when they stopped. All the doctors and
nurses held hands with Jeremy, his parents, and me and even the doctor
said a prayer. We held him when they stopped bagging him. I was so numb
and I didn't want to let him go and at the same time I just wanted to
run away. We left so they could clean him up and they brought a rocking
chair down from the maternity ward. I called Judi and told her what
happened and in a few hours she was on her way to NC to be with us and
she was calling some of the members. My family got there and we took
turns holding him, even my little nieces and nephews wanted to hold him.
They were confused but not scared and I'm glad they got to say
good-bye. We had to take Shane to the deserted x-ray waiting room to
hold him because they needed to empty the crash room. We held him for
hours and took pictures and cried and cried. We told him it was ok to go
to heaven about 10 times before it felt like he left. He didn't want to
leave us and it broke my heart to tell him to go. I just couldn't
comprehend that I would never get to hold him again. I never wanted to
hand him back to the hospital. </div>
<div class="sidebar section" id="sidebar-right-3">
<div class="widget LinkList" id="LinkList1">
</div>
<div class="widget LinkList" id="LinkList1">
<i><b>Letter written to the members of CHERUBS through our old listserv mailing group:</b></i></div>
</div>
<div class="column-right-outer">
<div class="column-right-inner">
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<aside>
</aside>
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<center>
<iframe allowfullscreen="" frameborder="0" height="360" src="//www.youtube.com/embed/8t22XUiNiaw?feature=player_embedded" width="640"></iframe></center>
<br />
Hi everyone,<br />
<br />
This is the hardest thing I've ever had to write and I don't know how to<br />
say it but bluntly because right now I can't handle getting emotional in<br />
this e-mail. Shane coded at home today. His pneumonia had gotten<br />
worse, but we didn't know it and he was coughing so I gave him an<br />
albuterol treatment and did chest pt and he just coughed and passed<br />
out. We called 911 and they tried for 2 hours to bring him back, but he<br />
was gone. We got to hold him and do so many things that parents like us<br />
do (it's so hard to be a part of that group now). We're still in shock<br />
and I'm praying we'll wake up tomorrow and none of this will be true.<br />
He died at home, watching Sesame Street, surrounded by his toys and the<br />
things he loves and right now that brings us so much comfort amidst all<br />
this guilt of "why didn't we.... ?". It hurts like hell and I know it<br />
will hurt worse when it sinks it. That little boy was and is our life<br />
and I can't imagine what tomorrow will be like without him. We know<br />
he's not suffering and in pain anymore- but now our pain and suffering<br />
begins. Please say a prayer for him and us.<br />
<br />
Love,<br />
Dawn and Jeremy<br />
parents of Shane 1/28/93-9/11/99 (it took me 20 minutes to type that,<br />
it's the first time I've ever had to and it hurts)<br />
<br />
(to be continued)......<br />
<br />
<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-53113006906255249032014-04-23T14:05:00.000-07:002014-04-24T06:31:38.398-07:00Shane's Story - Chapter 13<div>
1999 started out great... Shane turned 6 and the members of CHERUBS threw him a surprise birthday party (surprise to me too!) at the first ever charity event. </div>
<div>
</div>
<div>
But by summer things started to take a very bad turn. </div>
<div>
</div>
<div>
In
July he started coughing so we took him to his pediatrician, who was
very afraid of Shane's medical history but we live in the sticks and
don't have many options for local doctors. After demanding an x-ray we
saw the x-ray film- the entire left side of his chest was whited out as
if someone had taken paint to the x-ray. We left the pediatrician's
office and went straight to Shane's surgeon. We all thought it was
pneumonia and he was admitted to the hospital and put on antibiotics.
When it didn't clear up and he got worse, we guessed he had reherniated
(the x-rays were so bad you couldn't see any organs at all on that side)
so he went into surgery. He had reherniated- for the 6th time. Shane
never had much diaphragm to work with and the empty space between his
lung and his diaphragm never filled, so it created a vacuum and
basically it "sucked" the Gore-tex up. Apparently he had been
reherniated for a while and the Gore-tex was wrapped up like a ball and
had torn a tiny hole in his stomach and in his lung, allowing formula
and stomach bile to enter his lung. This is called a gastroplueral
fistula and is so rare that there are only a handful of cases in the
last 30 years. We only found a few research articles on it and Shane's
surgeon had never seen anything like it before. She repaired the hernia
and sutured up the holes and we thought we'd be going home in a few
days, but the pneumonia got worse. The hole in his stomach was so high
up and in such an awkward place that the suture didn't hold. Shane was
also so malnutritioned because of a lack of calories with the formula he
was on (he never did decide that eating by mouth wasn't a bad thing)
that his body couldn't heal properly. We decided to pump him with extra
calories through his intestines and keep his stomach drained so that his
lungs would clear and he would heal. Through it all he was a happy
little trooper. He played in the hospital, rode around in a wagon, the
nurses were tripping over toys (matchbox cars make a very cool sound
when they hit tiled floors), and we had to have a room with a VCR so he
could watch Sesame Street. We spent almost 2 months in the hospital and
when we came home he still was fed through his intestines, his stomach
was still being drained, he was on antibiotics, and he had to sit up all
the time, even while sleeping. We came home the beginning of September,
deciding that if the holes didn't close by the first of November he
would have had enough nutrition to have surgery again. </div>
<div>
<br />
On September 9th we went for our weekly visit to see Shane's surgeon. He
was coughing a little, but we thought that was a good thing because he
was clearing his lungs finally. Everything looked good and we drove the
hour trip back home. All the way home, the kid who always looked out the
car window and smiled at all the transfer trucks wouldn't take his eyes
off me. He stared at me for an entire hour and for an entire hour I
worried and wondered about why he was doing that. The next day he wanted
me to sit beside him and play with him all day long. It was the first
day in months that I didn't work (even while in the hospital) and just
sat and played with him and held him. He was never a real clingy child
and I wondered then if we should take him back to the hospital, but I
didn't know what to tell the doctors, "He's clingy". I stayed up with
him all night that night and finally went to bed when Jeremy got home
from work at 11am that Saturday morning. </div>
<div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-66897975361040843142014-04-22T14:53:00.000-07:002014-04-23T13:49:03.192-07:00Shane's Story - Chapter 12Written 11/10/97<br />
<div>
<br />
<a href="http://www.shane-torrence.com/story/Image31.gif"></a>I
wrote that story<i> (previous chapters) </i>almost 2 years ago, but it seems like a million years.
Reading it, I realize I was still in my "martyr stage"; a stage all of
us parents of disabled children go through. Now, I'm back to "normal
people stage" and Shane is almost 5. He is walking (actually running
around the house and leaving a trail of toys behind him), eating a few
ounces by mouth at a time, is completely off the ventilator and oxygen,
and had his trach removed a year ago. He wears glasses and hearing aids
and is going to a preschool for the deaf. He begs constantly to watch
the SAME episode of Sesame Street over and over again; I guess that’s
typical pre-school behavior. </div>
<div>
</div>
<div>
We only have "respite" nursing care at home
now- no more strangers practically living with us. His nurse goes to
pre-school with him twice a week, to take care of his feeding and
medications while he is there. We no longer go to doctor appointments
every other week; now we go every other month. He still winds up in the
hospital a few times a year for viruses and pneumonia, but luckily they
have been short visits. No more physical therapy (Shane has reached all
his PT goals); only occupational and speech therapy now, with visits
from a sight therapist to keep an eye on his vision. He has a Mic-Key
feeding button now, which is actually helping to anchor his stomach into
place. He throws tantrums, pouts, and flirts, like most "normal" kids
his age, he truly can melt me with just a smile. Looking at him now,
it’s hard to believe all we went through. </div>
<div>
</div>
<div>
Jeremy and I doing well. We
are now living the "American Dream", ok, the warped version, but it’s a
dream! Haha. We bought another house, have settled down in North Carolina,
Jeremy has had a wonderful job for a few years now, and I have Shane and
the support group to keep me busy and on my toes. I still battle
depession on and off (a result of Post Traumatic Stress, which most of
us parents of sick kids get) but life can be good! We have thought about
trying for another baby; actually we lost another one (#2) through
miscarriage this past summer. Shane still carries around that stuffed
Precious Moments’ cherub doll (ok, so it’s "baby" #5, the first 4 fell
apart from all the trips to the washing machine, but he doesn’t know
that). Rhonda and I have made contact and she is now a member of the
group; both of her children are healthy and happy, but Preston will
always be a part of all of us.<br />
<br />
<a href="http://www.shane-torrence.com/pics/95m.jpg"></a>update 7/5/98</div>
<div>
<br />
Shane is doing really well- still carrying around "Baby", watching
Sesame Street non-stop, eating much better by mouth, has learned 10
sign-language signs, and starts home-school this fall (after going
rounds with the local school board who refused to put him in the
county's only deaf class and wanted him in the L.D. class instead- where
no one knew sign language, even though the deaf class is only 1 year
ahead of him and has only 3 students). He plays with cat, loves going
outside and riding in the car, and loves to be read to. He makes the
silliest faces and has a wonderful sense of humor- you just can't help
but smile when he does. I feel like the luckiest woman in the world to
be chosen to be this wonderful little boy's mom. </div>
<br />
1998 has been hard on us- a house fire (in which Jeremy was seriously
injured), e-coli (food poisoning from seafood), a tornado that hit our
house, yet another miscarriage, I lost my best friend, my parents are
divorcing after 25 years, I had a hard time coping with the birth of my
new niece who was born near the due date of the baby I lost last year. With all that's happened, my depression really hit hard
for a while as I tried to cope with everything.<br />
<br />
Now we're back on
track. I have a new job, the support group now covers 47 states and 8
countries and is keeping me busy- so you can say I work 2 full-time
jobs. We're trying for another baby again and we finally feel like life
is going well and we're almost "normal". I knew we would have it rough
after Jeremy broke that mirror 3 months after we were married! LOL 2
months to go and the 7 years of bad luck is over!<br />
<br />
(to be continued...) <br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-70135463190547105542014-04-14T12:08:00.001-07:002014-04-22T14:45:53.334-07:00Shane's Story - Chapter 11<br />
(taken from a post written in 1996)<br />
<br />
As I write this, Shane will be 3 in 2 weeks. He now wears hearing
aids and glasses. I heard him cry for the first time this past summer
when we started to use a Pacimuer Valve, a small valve fit over his
trach that allows him to make noises by teaching him to exhale through
his mouth and nose. He started to crawl after his forth surgery and is
"cruising" now. God willing, he will walk soon. The feeding tube in his
nose was removed and replaced with a more permanent one placed directly
in his stomach through his abdomen. He is starting to eat and drink by
mouth and maybe someday, when he can eat as well as he needs to, the
tube in his stomach will be removed. He can't talk yet, but he is very
expressive with his facial expressions. His trach will be out this
spring. He runs the house and gets into everything. He's a stubborn as a
mule, but I suppose that's what has kept him here. It's impossible to
discipline him and where most children learn not to climb or get into
things after they fall once or twice, Shane is so used to pain, that
when he falls or we pat him on the butt to keep away from things that
could hurt him, he laughs hysterically. <br />
<div>
<br />
Jeremy now has a new job with better benefits. I have started college and started a support group for
the families of children like Shane. Jeremy and I are considering having another child. Shane is doing well and
will be at least 4-years-old before we have another one, and the time
seems right. Of course we are terrified at the thought of having another
sick baby, but the doctors and research have told us that the chance of
that is rare. Like the parents of all babies, sick or healthy, we long
to do "normal" things; come home a few days after giving birth, breast
feeding, and having baby-sitters instead of nurses. We will never again
be oblivious to what might happen, but we need to, and want to, have a
good birth experience. Besides, Shane is getting a little too spoiled
and another baby would do us all good. No matter what happens, Shane
will always be a little more special, that's a feeling all mothers of
disabled children have. I love him more than life itself and I would
trade places with him in a millisecond. He the sorrow and joy in my
life, as all children are to their parents, only multiply that by 100
when you have a disabled child. Every step forward and every step back
is more noticed and more dramatic. It's hard, but I wouldn't trade it
for anything. He has made me a stronger person. </div>
<div>
<br />
<a href="http://www.shane-torrence.com/pics/1996.jpg"></a>I
still get into arguments with doctors and nurses, but I know how to
choose my battles. I have alienated quite a few of medical
professionals, but I know Shane and his medical history best because I
deal with it everyday of our lives. The latest battle was with a nurse
who wanted to put Shane in a hospital room with 2 preemies when he was
admitted with a virus. After asking to be put in a private room and told
"no", I had to go into my "mom from hell" mode to get us moved and
within 5 minutes we had a private room. There was no way I was going to
subject to those two tiny babies to Shane's virus when they already had
their own health problems to fight. Unfortunately, many of us moms with
sick kids have had to learn about the "mom from hell" mode. Jeremy has
supported me all the way. We no longer go to the hospital where Shane
spent his first 10 months. </div>
<div>
<br />
Because of Shane, and our experiences of having a child with this birth
defect, I started a support group. It is the only support group of it's
kind in the world. This defect strikes 1 in every 2500 babies. The cause
is not yet known. It is not a prejudiced birth defect. It affects
babies of healthy families, of parents of any age, of any color, of any
religion, and any financial status; no matter how good the prenatal
care. Most are found during routine ultrasounds. It can strike alone or
with other birth or genetic defects. Fifty percent of babies born with
this do not survive. Most survivors of this defect do not have any
complications (other than feeding problems) or more than one repair. </div>
<div>
<br />
I now know, after researching that the "flu" I had during my pregnancy,
along with stomach pains, what I then thought was "more amniotic fluid
that I had seen in birthing videos", and all the weight gain just in my
stomach was undiagnosed polyhydramnios, excess amniotic fluid.
Polyhydramnios is an indicator of fetal abnormalities. If my doctors had
diagnosed me correctly maybe they would have diagnosed Shane's problems
by ultrasound and we could have been prepared and had him at a trauma
center better equipped to care for him. </div>
<div>
<br />
I swore to myself that if I could help it, I would try to prepare other
parents of children with this birth defect. These parents need to be
better informed so they can make educated decisions for their child's
health care. They need to know they are not alone. Most people have
never heard of this birth defect, and if they are lucky, they never
will. I started this support to help these parents the way Rhonda helped
me. I wrote a newsletter in my kitchen, took it to a printer (who
donated the service), and mailed it to a couple hundred parents and
doctors. In 12 months, we now have families plus hospitals,
universities, and research centers across the country and in Canada,
Europe and Australia in our membership. The response has been
overwhelming; this support group has been needed for forever. </div>
<br />
Rhonda and Jenny have each had healthy baby girls since the deaths of
their sons. We no longer keep in touch, it's a little uncomfortable for
all of us; they have healthy babies but still grieve for their lost
children and I still have Shane. They will always be in my heart, and I
think they would agree, that our friendships were part of the worst
times in our lives, but they are also a part of what helped all of us
survive. I will never forget them. I hope the best for Rhonda and Jenny
and their new babies, and I know one day I will have a healthy baby,
too. I feel it in my heart as sure as I knew Shane was sick. But for
right now, we'll be content will our own living, little angel.<br />
<br />
<br />
(to be continued....)<br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-76788681958004760232014-04-12T11:22:00.000-07:002014-04-12T11:51:45.961-07:00Shane's Story - Chapter 10Shane slowly progressed. He still couldn't eat by mouth, he was fed by a feeding tube that was inserted down his nose into his stomach. He remained on the vent and oxygen and we all got used to having nurses in our home. Rachel and a few other nurses from the hospital joined our home nursing company to come work with Shane. Nurses came and went, a few stayed on permanently. They all became members of the family.<br /><br />When Shane was 15-months-old, a new nurse, Ana*, after undergoing training, was working a night shift. At 6 am, she lightly tapped on our bedroom door and asked me to come to Shane's room. As I got halfway there, I heard Ana screaming. I ran into Shane's room and looked at my baby. He was blue, his eyes were open, but they were rolled into the back of his head. I screamed for Jeremy. He came in, saw Shane, and ran to call 911. Ana was screaming and shaking Shane. He was still on the ventilator, she hadn't even started CPR. I had to push Ana out of the way, and thankfully, everything I learned about CPR came back to me. I took Shane off of the vent, hooked up the ambu bag to his trach, yelled to Ana to turn up his oxygen, and checked Shane's pulse. His heart had stopped. I started CPR and finally Ana regained control and helped. Jeremy came into the room and told us an ambulance was on the way. He started to check the ventilator, which had been alarming since I first came into the room. Ana had emptied the humidification trap to release the collected vapor and forgotten to close it. The ventilator must have been alarming for at least ten minutes. The first thing we learned in our training was that if the ventilator alarms and you don't know why, you take the patient off of the ventilator and manually respirate them until you fix the problem. Ana had left Shane on the vent. Imagine trying to breath through a very small straw that had no oxygen. That's how Shane felt. I fired her on the spot. After 10 minutes of CPR, Shane started to come back. By the time the ambulance got there, he was fine. Of course we took him to the hospital anyway, and he was released the same day. Ana was never disciplined by the company or the state nursing board. I may or may not have threatened to kill her with my bare hands once Shane was stable and before we left for the hospital. We became more cautious about the nurses we let take care of Shane, in fact, we were probably neurotic about new nurses.<br /><br />We switched Shane's surgical care to another hospital when we bought him home at 10 months. We were blessed to lived near 2 children's hospitals capable of handling CDH. At a routine check-up, an x-ray showed that his sutures were giving way and that he would need another surgery. By now Shane was off oxygen, and only on the vent at night. He was interacting with us, starting to roll, and his smile lit up a room. In August of 1994, Shane underwent his 3rd major surgery. Everything went as planned and two weeks later he was home.<br /><br />That October, Shane was doing great and I got to make him a Halloween costume. He and his 3 cousins were firemen and Dalmatians and his stroller was converted into a fire engine. Thanksgiving came and we got to go to Jeremy's family's house to celebrate. At Christmas, we went back to Virginia and I got to do all the things that I had wished for during the Christmas I was pregnant. Jeremy even played Santa Clause. Shane now played with his toys, rolled around in the wrapping paper, and could go from room to room without equipment and tubes. It's amazing what parents of healthy babies take for granted. The first time I could actually walk Shane around was like magic. It was like Shane and I were dancing in our own little world and he was almost "normal".<br /><br />Shane turned 2-years-old in January of 1995. His cake this year was a hypo-allergenic, applesauce cake. His cherubs have been removed from his walls and replaced with more "boyish" pictures of Looney Tunes characters. Shane came off his vent that May.<br /><br />Eating was big issue then. At 2 he still wasn't eating by mouth. His oral aversions were awful. He wouldn't allow anything in or near his mouth at all that resembled food. Books, toys, matchbox cars were fine. Anything cold, hot or wet or with specific textures made his gag awfully. With all his many other issues and a trach, eating wasn't on the top of our list. He had a feeding tube, then a G-Tube, then a Mic-Key button. Feeds were ever changing based on how his stomach and diaphragm were doing. Sometimes continuous, sometimes bolus. We never left the house without feeding bags, feeding pump, emergency button in case his came out, prescription formula thanks to his allergies. It was our normal. Not eating was a really big deal because he was very underweight and he needed extra calories to make up for all the calories he was using just to breathe.<br /><br />We still had home health nurses but not every day. He was still getting visits at home from social workers, physical therapists, occupational therapists, speech therapists and sight therapists. He got glasses. We started working on teaching him sign language along with trying to get him to talk with the help of a pacimuer valve over his trach. He heard his voice for the first time. We heard his voice for the first time! Laughing, cooing, crying.... it all sounded like the most beautiful music we'd ever heard.<br /><br />On the 4th of July, he went into respiratory distress and we went to the emergency room. He had emergency surgery, his 4th repair, and went home 2 and half weeks later, off oxygen. Just like that. No warnings, no symptoms like before. <br /><br />Then that October (1995), he needed yet another surgery, this time with symptoms so we had a small bit of warning. He went through surgery number 5 and came home after 5 days. We made frequent trips back and forth to the hospital for viruses and for appointments to all the many specialists involved in Shane's care. We didn't know when and if Shane would need another surgery. He never did anything by the book. <br /><br />Yet another Christmas came and I hoped against hope that we could possibly receive another miracle. I prayed nightly that God would heal Shane and prevent him from suffering through more surgeries. In early December, we went for a routine check-up with Shane's surgeon and an x-ray was taken. I have learned how to read these x-rays and was scared when I saw a mass. It wasn't a tumor. The doctor's said it was scar tissue, but Jeremy and I said it is the touch of God because whatever it is, it's holding his organs straight and as long as that happened, he didn't need another surgery. He gave us yet another miracle and I believed that Shane would not need future surgeries. I was so wrong.<br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-43587737946158011052014-04-11T12:56:00.000-07:002014-04-11T12:56:24.505-07:00Shane's Story - Chapter 9Our second day home, during my shift, our electricity went out.
Shane's vent battery kicked in; it had an hour internal battery. I took
him off his oxygen concentrator and hooked up a tank. I frantically
called the power company, who told me a car had run into a generator and
the power would be out for at least another 2 hours. Shane was on their
emergency power list, but there was nothing else they could do. I
called our medical equipment company and they talked me through hooking
the vent up to a boat battery, and then the director came out to sit
with me until the power came back on. That was my crash course in going into "take of things Mommy" mode. Other moms have to deal with leaking diapers or breast milk.... I was hooking my kid up to a boat battery. That was our new normal.<br />
<br />
<a href="http://www.shane-torrence.com/pics/93i.jpg"></a>Shane's
first Christmas was the best Christmas we ever had, even though we
couldn't go home to our families or to our new niece, Kirstin, and
nephew, Frankie, healthy babies, born to my sisters. I love them like
they were my own. Those jealous feelings went away and were replaced by
relief that they wouldn't have to go through what Shane did. When we put
up the Christmas tree, Shane started to look at the lights. He could
see! Our very own Christmas miracle, after we were told he would never
regain his sight!<br />
<br />
Local churches donated money, toys, and even gifts for
me and Jeremy. The local police station donated a $200.00 gift
certificate to a nearby grocery store. My parents traded us their '88
Aerostar mini-van for our tiny '91 Escort so that we could transport
Shane and all of his equipment to his doctor appointments. An anonymous,
and I'm certain, wonderful person donated a double stroller so that we
could carry Shane, his ventilator, his oxygen tanks, suction machine,
diaper bag, feeding pump, and other medical equipment. Shane has shown
us the truly wonderful side of humanity. So many strangers helped us out
in our time of need. <br />
<div>
<br />
We had many ups and downs after Shane came home. He wasn't
gaining weight from the formula he was sent home on, so his nutritionist
decided to try to switch his formula to a higher calorie formula that
was milk-based. Shane had a severe allergic reaction to the formula and
went into anaphylactic shock. We almost lost him. We learned he was
allergic to all milk products, eggs, chicken, and red food dye. We had
to keep an Epinephrine dose with us at all times. Even if a drop of
anything containing milk touched his skin, he could go into shock.<br />
<br />
<a href="http://www.shane-torrence.com/story/Image26.gif"></a>We
turned Shane's first birthday into a major event; we didn't know if he
would ever have another. I spent 3 days painting Precious Moments clowns
on his cake and decorating our kitchen. We couldn't have open flames
around Shane, so I make one out of construction paper to put on his
candle. Our tiny home was filled with family and friends. Shane was
oblivious to all the activity, but he did manage to accidentally put his
hands in the cake. We actually got a picture that the parents of
"normal" one-year-olds get to take of first birthdays! Life seemed good
again. </div>
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-27193954727920062892014-04-10T12:38:00.000-07:002014-04-10T17:53:21.726-07:00Shane's Story - Chapter 8The next few months went by slowly. Shane was seen by neurologists
who said that he would never get any better, but we didn't listen. We
knew God had a special plan for Shane. Shane started to interact with
people and show discomfort at about 7-months-old. His trach site was
starting to erode and Dr. Caffy changed the brand of trach. His trach
site grew worse. I went to the medical library and researched to find
different brands. When I learned that trachs could be made to order and
specified to fit the trach site so that the erosion would be minimal, I
asked the surgeon to change the trach brand. He told me that there were
only two types of trachs in the world and that we had tried them both. I
knew he was lying to me. I suppose I had become an annoyance, but
Shane's site was so bad that it threatened to open the main artery in
his throat. When I presented Dr. Olden with illustrations from medical
journals, along with manufacturers phone numbers and addresses, the
surgeons avoided me for weeks. I had to leave notes for them on Shane's
bed because they would only make rounds before visiting hours and all my
questions were answered by other doctors. I wasn't on a quest to be
right, I simply wanted to stop the pain that that type of trach must
have been causing Shane. After about a month, the surgeons got tired of
arguing and changed the trach brand. Shane's trach site immediately got
better and healed, though he will always have a noticeable scar there.<br />
<br />
The nurses and respiratory staff were wonderful, I went out to eat with a
few of them, and Jeremy and I went out with them and double dated a few
times. They were, and are, friends in every sense of the word. They
took the time to try to cheer us up or distract us from Shane's
problems. They bought Shane clothes and toys and spent hours playing
with him, even tough he couldn't respond very well, if at all. They went
beyond the call of duty, and we will always be grateful. The flight
nurse, Ed, that bought Shane to the trauma center, checked in on him
often, bought him a stuffed animal and a flight pin, and even gave us a
tour of the helicopter. Rachel became one of Shane's three godmothers,
along with my sister, Christie, and my sister-in-law, Teresa.<br />
<br />
At eight-months-old, Shane was still on the vent but stable. We started
to make plans to take him home. The Ronald McDonald House closed down
for renovations and I was taken in by other families for 2 months. They
let me into their homes, took me back and forth to the hospital, and
treated me like family, even though they had sick children of their own. They even took me to the hospital each day. Friends like that are rare and deeply cherished!<br />
<br />
I contacted home health agencies in Virginia, but the surgeons refused
to let Shane go back to our home because we were too far from a trauma
center. Instead, they wanted Shane to go the nearest chronic care
facility, 3 hours from our home. We refused and learned CPR and how to
work the medical equipment. We had to go in front of the ethic's
committee again. After another heated discussion, the doctors agreed to
release Shane if we moved closer to the hospital. They never thought we
would leave our families and move to North Carolina. I started to look
for a house near the hospital and set up home health care. One of our
friends gave Jeremy a job and with the help of fundraisers we put a down payment on a small house. <br />
<br />
The doctors still did not want to release Shane, even after everything
was set up. They said that he wouldn't live to make it to the parking
lot. We were determined to get him home anyway and on November 29, 1993,
after 10 months, we took Shane home. We later learned that the surgeons
had a money pool going over how long Shane would survive once he left
the hospital. Dr. Olden bet 2 weeks, Dr. Caffy bet 24 hours. We are
happy to say that they both lost.<br />
<br />
<i>(Side note - 20 years later, one of the surgeons came up to me at a conference and apologized, which was very appreciated.)</i><br />
<div>
<br />
With home health nurses and equipment, we started on another leg of our
long journey. Shane quickly settled into his nursery, with his painted
cherubs looking over him from the walls. I tried my best to keep Shane's
room looking like a nursery and not a hospital room, despite his
ventilator, oxygen tanks, feeding pump, and monitors. We had nurses 16
hours a day and I watched him for 8 hours. </div>
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I was only 20 years old at this time with a child at home on full life support who couldn't breathe, eat, see or hear. And there was no help, no support group, no internet, nothing and no one to tell me what to do or what to expect. </div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-37139778331335118112014-04-09T12:29:00.001-07:002014-04-09T12:29:47.031-07:00Shane's Story - Chapter 7At 4 months old, Shane underwent surgery again, a procedure that was not supposed to be needed. By this time, I had spent many hours at the hospital's medical library and was becoming pretty knowledgeable about Shane's condition; to the annoyance of his doctors. I looked at every x-ray and the results of every test. Through my studying, I learned of a procedure that involved repairing the defect with use of muscle from the abdominal wall. I begged Dr. Caffey and his partner, Dr. Olden*, to try this instead of using the Gortex (nylon) patch they intended to use. The Gortex couldn't fight infection and wouldn't grow with Shane, which meant it would have to be replaced as Shane grew. They insisted they had never heard of this and even when I gave them articles taken from medical journals, they refused.<br /><br />The tension between us was growing thicker everyday. They were surgeons from one of the top 10 hospitals in the country, how dare I even think to question them? I wasn't worried about their egos, only my son's health. Shane was now so unstable that there was no way he could be transported to another hospital, so I reluctantly gave in.<br /><br />I was having health problems of my own. I developed a large knot between my right breast and my arm. Pumping that breast was excruciatingly painful and while pumping one evening at the House, in our room, I pumped blood. Then I began to have cold chills. Jeremy got more blankets and even laid on top of me, but I couldn't get warm. I was sweating so bad the sheets were drenched. When Jeremy took my temperature, I had a fever of 105F. He took me to the emergency room, where the doctors diagnosed me with severe mastitis (an infection of a milk duct in the breast). My temperature reached 106F before they could hook up IV fluids. My case was so severe, they were calling in medical students to come look at me; I started to feel like a guinea pig. I was dehydrated and they wanted to admit me, but as stubborn as I was, and as sick as Shane was, there was no way I was going to be separated from my son when he needed me so badly. They filled me up with fluids, gave me antibiotics, and released me. I lost my breast milk and I never got to nurse Shane. I felt like I had lost a bond with him that I could never regain.<br /><br />Weeks later, and still on oxygen and a ventilator, Shane got his trach. By now, the surgeons and I were butting heads constantly. Shane continued to come down with infections and I continued to act like a tigress protecting her cub. I questioned the surgeons' decisions and they questioned mine. They were not used to dealing with a patient's mother for such an extended amount of time. It was during this time that Lance*, a little boy a week younger than Shane, came back to have his 2nd heart surgery. His parents, Jenny* and Ronnie*, had stayed at the House with us during Lance's first surgery visit. After Lance's second surgery, he came down with a staph infection at the same time as Shane. They were side by side in the Unit. Jenny and I spent a lot of hours together and we became good friends. Lance died a few weeks after his surgery. Writing this now brings tears to my eyes. I never thought I could hurt so much for another person as I did for Jenny. I never wanted to go to another baby's funeral as long as I live. Rhonda was at Lance's funeral; she was now pregnant with her third child. Shane recovered from his infection and by now, I felt as if we were waiting in line to be the next to lose our child.<br /><br />Soon after, Shane came down with pneumonia. The oxygen level his blood had went so low that it caused brain damage. He was now blind, deaf, and what some people would call a "vegetable". Jeremy and I wouldn't give up until Shane did, and he wouldn't either. We argued with the surgeons, who now wanted a D.N.R. (Do Not Resuscitate) order. I knew he was still here with us, it wasn't time to let go! I felt it in my soul it wasn't time to let go of him yet so I fought. We refused the DNR and had to go up in front of the hospital ethics committee. The meeting was full of accusations, from both sides, and I spoke through choked tears. I tape recorded the entire meeting to try to keep everyone on track. They weren't happy about it but I wasn't going to be bullied into making the wrong decision for my son.<br /><br />When it was over, the doctors did not get their D.N.R. order and care for Shane was continued. Rachel was beside us the whole way. And ironically, Shane was the Hospital's Miracle Network Telethon poster child that year. <br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-71614673844399053812014-04-08T09:46:00.002-07:002014-04-08T09:59:26.250-07:00Shane's Story - Chapter 6The next few weeks left Shane holding his own but not improving as much as we had hoped for. I pumped breast milk regularly, and when I didn't have the strength, Jeremy helped me. When Shane was 2 weeks old, Jeremy went back to Virginia to start his new job and I stayed at the Ronald McDonald House at night and the hospital during the day. My days consisted of eating, sleeping, pumping, and keeping vigil at Shane's bedside. We brought toys and clothes from home for him; including a stuffed Precious Moment’s angel pillow.<br /><br />When Shane was 3 weeks old, I held him for the first time. A brave nurse, and dear friend, juggled tubes and wires to place Shane in my arms. I held him for over 5 hours. I would have held him forever if I could have, but my breasts were becoming engorged. I wish someone would have warned me about that. Jeremy held Shane for the first time a week later. All of the members of the nursing staff were more than just the people who took care of Shane, they were friends and for a long time, family. Rachel, Shane's primary nurse, immediately "adopted" him. She referred to him as "her baby" and she made sure he got the best care, even if it meant standing up to the doctors to get it.<br /><br />Shane came down with his first infection at a few weeks old. It was one blood infection after another, and in between, he came down with pneumonia. It seemed he would only get over an infection when another one would start. He was sedated and paralyzed by medication for most of his first 3 months. In total, Shane had over 20 infections (blood, urinary tract, and kidney) and pneumonia 5 times. My sweet, tiny little newborn was now huge with fluid every time he got an infection or had a surgery. He didn't even look like the same child. The TPN and Lipids he was receiving for nutrition through the central IV were causing hair to grow to the point that they tested him for Cornelia deLange Syndrome (a common symptom of this syndrome, along with CDH). He was on Morphine, Fentanyl, Codeine, Versed, Alburterol, Amphetericin, Lasix, Gentamycin... more medications and antibiotics than any little one should be able to humanly bear. At times he was on 20 different prescriptions. <br /><br />I quickly learned to document everything and ask questions constantly. Things changed from 1 hour or 1 doctor to the next. I was the mom who left the signs on my child's bed "If you haven't washed your hands, do not touch me!" and would make a surgeon go to the sink before touching my son during rounds. I would complain when needed, speak up when needed, yell when needed. I became entertainment for the nurses and a pain in the a$$ for the doctors. I went from shy to Mama Bear overnight. Literally. I had to. My son needed me to.<br /><br />It was during this time that I learned 2 of my 3 sisters were pregnant, Christie and Trisha (I also have a baby sister, Debra). I felt betrayed. How could they get pregnant knowing what I was going through? How will I be able to fight off the jealousy when they have healthy babies? They were single moms and I was married, and had done everything to try to insure a healthy pregnancy and baby. It would take me months to forgive them, though I knew I had no justified reason to be angry with them.<br /><br />When you live this type of life, you become very close with the families of the children you meet. They are the only ones who truly know what you are going through. I prayed for many other children, and the list became longer with each passing day. P.I.C.U.s are like war zones. Children battle for their lives. Parents battle for their children. The medical staff battle disease, armed with medication and knowledge. A lot of these battles are lost. The first child I watched die was a 6-year-old little boy with multiple problems. He died the second day Shane was in the P.I.C.U.. He was in the bed beside Shane's. I tried to ignore it; I couldn't handle it. I had never been this close to death before. A little girl, Andrea, was put in that same bed space hours later. She was born on the same day as Shane, with the same problem as Shane had. Her mother was single and the same age as Jeremy and I. This baby girl fought for 2 weeks. The little girl died. I wanted to comfort her mother but it hit too close to home, I just walked out, went to bathroom and cried. I knew Shane could be next. I will always regret not going up to that mother and holding her as she grieved. I have known hundreds of children who have died since then and they have each taken a piece of my heart with them.<br /><br />I met another mom of a child with this birth defect who had a little boy, a month older than Shane, that died at age 2 months. She gave me more strength in her strength than she could ever know. Rhonda was there for me even after Preston died. When another mom lost her little girl from complications after a heart surgery, Rhonda was there, a month after Preston died, to give her comfort and to help guide her through the funeral arrangements. I will never forget the selfless generosity that she gave everyone, even while still grieving for Preston. How can we send a man to the moon but not prevent all this pain and needless death on Earth to innocent, little babies? <br /><br /><br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-17326273031503517682014-04-07T09:50:00.002-07:002014-04-07T09:50:46.404-07:00Shane's Story - Chapter 5That Monday (February 1, 1993), the day of Shane's surgery, his grandfather, a preacher, formed a bedside ceremony to Dedicate him. Being raised Catholic, I was terrified something would happen to him before he was Christened. This was the closest thing to a Baptism/Christening as we could get in the hospital. (I realize everyone has different religious beliefs and we hope that you respect ours as I share my son's story). This bought me a great deal of comfort as making sure this was done was one of the few things I had control over.<br />
<br />
While our parents waited in the
operating room waiting area, Jeremy took me to the emergency room. I
was in so much pain and I hadn't had an exam since Shane was
born, not even by my doctors before I left the hospital. I was given
painkillers and told that I was just bruised. Jeremy ran back and forth
from the E.R. to the O.R..<br />
<br />
Shane was in surgery for 6 hours. Finally,
the surgeon came in. The surgery went well and Shane was given a 50%
chance of survival. He had no left diaphragm at all, just a ridge of where a diaphragm tried to form. His stomach, intestines and spleen were in his chest and his heart was moved over to the right.<br />
<br />
He also had a pulmonary sequestration. This is a medical condition where a piece of tissue that ultimately develops into lung tissue is not attached to the pulmonary arterial blood supply, as is the case in normally developing lung. He had an extra artery going to this undeveloped piece of lung, which was causing his heart to work harder.<br />
<br />
The surgeon decided to remove the lung sequestration and use that tissue to patch up Shane's diaphragm. He didn't ask us for permission to do this and because this was a teaching hospital and we had signed consent forms, he was required to ask us. 21 years later, I still have yet to find one research article on anyone ever attempting this before or after on humans or animals with CDH.<br />
<br />
We were told that if all went well, he could be home
in 2 weeks.<br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-36606447623661269482014-04-06T10:18:00.003-07:002014-04-06T10:18:55.966-07:00Shane's Story - Chaper 4<div class="separator" style="clear: both; text-align: center;">
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Polaroids taken by Shane's nurse upon arrival at the children's hospital.</div>
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<br />
Our son wasn't put in the Neonatal Intensive Care Unit (NICU) with the other babies because ECMO (still very new in 1993) was handled only in the PICU. So he was never in a nursery with other children, he was alone (at the delivering hospital) or with the older children since Day 1. No "normal" baby anything for our little boy.<br />
<br />
The first time I walked into the Pediatric Intensive Care Unit (PICU) I was overwhelmed. No one
told me what to expect. It was constructed of 2 large rooms with beds
lined up against the walls. Sick children were everywhere. Children
awake and playing video games, children in comas, children on life
support. The beds were just feet away from each other with only curtains between them and those curtains only drawn for procedures. Otherwise parents sat in chairs on each side of the beds or cribs, bumping into the parents sitting at the bed of another child next to them.<br />
<br />
Among these children was Shane. He looked even smaller than the
night before. He had IVs in every limb and the ventilator took every
breath for him. He was sedated and paralyzed from the medications. Yet
despite all the medical equipment, he was the most beautiful baby I'd
ever seen (of course I'm a little prejudiced, like all mothers). The
oscillating ventilator was giving him 420 breaths a minute to keep his lungs from
collapsing and a heart and lung bypass (E.C.M.O.) machine stood beside
him as a precaution in the event that his heart and lungs quit. <br />
<div>
<br />
The surgeon came and introduced himself as Dr. Caffy* and scheduled
surgery for that Monday, 2 days later. I had no idea of what he was
explaining to me, I just agreed to everything and put my son's life into
his and God's hands. </div>
<div>
<br />
I wasn't allowed to stay at the hospital with my son, there was no housing for parents. We were lucky enough to get a room at the local Ronald McDonald House. It was such a huge blessing to us to be able to get in as rooms weren't always available to families in the PICU or NICU. Cancer patients always got rooms first as the RMcD House was invented for them. It was so wonderful to have a place to stay that wasn't expensive like a hotel room. Parents still have to pay to stay at the House but it's minimal and not required. I don't know what we would've done without that amazing House.</div>
<div>
</div>
<div>
That night we settled in and Jeremy told me that his brother, James, had
found out that Jeremy's application for a job at the local lumber yard
had been accepted. After four months, Jeremy had a job. It solved some
of our money problems but they didn't seem to matter quite so much any
more. Our church and other churches who had never met us began to take
up collections to help us get by. My faith in humanity was beginning to
grow. I prayed harder than I've ever prayed in my life that night. I
prayed for God to watch over Shane and most importantly I gave Shane to
God, to do His will, whatever that might be. </div>
<div>
<br /></div>
<div>
That weekend we started the ritual of getting up, going to the hospital early to be there when the doctors were doing rounds and staying until we were kicked out at the shift change. Eating dinner and then back to the hospital. Then back to the Ronald McDonald House to try to sleep. Pumping breast milk every few hours throughout. Adrenaline and worry kept us going mostly.</div>
<div>
</div>
<div>
(*Not real name) </div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-35279158389676826792014-04-05T11:24:00.000-07:002014-04-05T11:51:27.757-07:00Shane's Story - Chapter 3Jeremy and a nurse helped me off of the table and into a
wheelchair. They wheeled me down the hall to a small room that contained
an incubator, IV poles, a respirator, monitors, and my son. I was only
allowed to see him from the doorway, he looked so tiny at 6 lbs 9 oz.
Tubes and wires covered him. He had black hair and looked as if someone
had given him a crew cut, but that was how his hair came in. He looked
perfect on the outside, but on the inside he was struggling to survive.
The nurse said "We're putting you in a single room so you have privacy."
I knew the real reason that they were wheeling me to the geriatric
ward. Only one other baby had been born and I could have had a room on
the maternity ward all to myself but the staff had decided it would have
been better to separate me from the other mother so that she wouldn't
have to hear my cries and screams if my son, Jeremy "Shane", didn't
survive. I wanted to yell that this wasn't fair but I needed to stay
focused on Shane. <br />
<div>
<br />
My sister, Trisha, and her boyfriend at the time took Jeremy home so
that he could grab some clothes and take off for the trauma center to be
there when Shane arrived. The pediatrician came into my room,
surrounded by our family, to tell me that the trauma center he had
ordered the helicopter from had called to tell him that their helicopter
was broken. He then called the next closest trauma center, in North
Carolina, and ordered their helicopter. I asked if I could see Shane
before they took him and he told me no. After my family bombarded him
with questions, he left. I called my neighbors, who were the dearest
landlords we will ever have, to ask them to stop Jeremy and send him
back to the hospital. They already knew; small town word of mouth had
already started and Shane was only 3 hours old. </div>
<div>
<br />
The helicopter crew arrived at the same time Jeremy did. I asked them a
million questions as I filled out the consent forms. "What are his
chances?" "Have you ever seen a baby with his problems?" "Is the weather
safe for flying?" They comforted me, assured me, and gave me a chance
to tell my son how much I loved him as they wheeled him into my room in
his incubator. He was awake! He looked at me with those intense blue
eyes that most newborns have. It was as if he was asking me for help. He
looked directly at me, out of a room full of people. He knew that I was
his mother. I felt my heart breaking. I will never forget that look or
how wonderful the helicopter crew was, especially one of the flight
nurses, Ed. He was an angel sent to us in our darkest hour to give us
the hope that the hospital hadn't. Around midnight, my son was taken
away as I listened to the helicopter blades break the silence of that
cold night. </div>
<div>
<br />
That night I couldn't sleep. Jeremy's brother, James, drove him to the
trauma center. My mom stayed at the hospital with me. The rest of our
families went home to prepare for the long days ahead. I called the
hospital P.I.C.U. where Shane was taken to check on him and to give the
staff permission to perform procedures. I was young, ignorant, and on
pain killers, yet I was in charge of making decisions that would save or
end my son's life. I thank God my mom was with me. I started the ritual
of pumping my breast milk every 3 hours. I barely had any strength left
to operate the manual pump, my arm muscles were weak from pulling up
and pushing during labor, but I was determined to do this; to give my
son the best nutrition and to do something for him that the medical
staff couldn't. </div>
<div>
<br />
My father came the next morning and picked up my mother and me to go to
the trauma center. I left the hospital 18 hours after giving birth,
despite protests from my doctors. As I was being wheeled out of the
hospital, the other new mom who had delivered that night came to wish me
the best and offer her prayers. I don't remember her at all, but I
apparently nodded and thanked her; at least that is what I am told
happened. After a 2 hour drive, we made our way up to the P.I.C.U.. I
could barely walk and sitting was almost impossible. Labor was nothing
compared to the bruising and sutures I had from the episiotomy and
forceps. But the pain in my heart was worse than any physical pain. </div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-56539217020409100762014-04-03T05:35:00.001-07:002014-04-03T05:48:16.652-07:00Shane's Story - Chapter 2Shane's Story - Chapter 2<br /><br />(Graphic Warning)<br /><br />My water broke at 6:00 am. After waking my husband up and assuring him that no, I didn't have an accident, we got up to go to the hospital 2 weeks before my due date.<br /><br />Polyhydramnios is a condition where there is too much amniotic fluid. This dehydrates the mother and indicates a fetal anomaly. In normal pregnancies, babies swallow this fluid. In cherubs, some just cannot swallow it (with their stomachs, intestines, etc displaced). My polyhydramnios was undiagnosed. No one had thought to measure me so when my water broke, I mean my water REALLY broke. It wasn't the cute little puddle shown in the movies and on TV. I soaked the bed mattress, 3 changes of clothes before we left the house, the bathroom floor as I sat on the edge of the tub to shave my legs (hello, I was getting up on a delivery room table but not with hairy legs! You women understand), the seat of the car and fluid was literally dripping from the stretcher they put me on in the ER to take me to L&D. Yeah, that's not normal.<br /><br />I was set to deliver at a small hospital in the county in Virginia where we lived. It was about an hour from my house or maybe 45 minutes (it was 21 years ago). There was no specialist, no NICU, the L&D unit had only 4 beds which probably only filled during a full moon. It was one of only 2 options of nearby hospitals and it was where my sister had given birth 2 years earlier. They didn't drop my nephew so I figured it was an ok hospital. I was 19, what the heck did I know?<br /><br />We got to the hospital by 7:30 am, our families arrived by 9:00 a.m. and filled the waiting room. We are both blessed to come from large, healthy families. Soon my contractions became noticeable.<br /><br />13 hours I was in labor, which is pretty average. I don't remember much about it honestly except that I was STARVING and there was a Burger King across the street from my hospital bed. Other than that I remember climbing up my tilted bed to the top of it during a contraction and passing out and sliding down until the next one. Giving birth is exhausting. From 9:00 a.m. to 4:00 p.m., they remained bearable and I only dilated 1 cm. At 6:00 I started to beg for pain killers. I was given 2 shots of Demerol and at 6:30, I had an epidural. Too little, too late. I was fully dilated and started to push. The baby's head seemed to be stuck in the birth canal. The doctor performed an episiotomy and at 6:55 p.m. my son made his entrance into the world with the help of forceps. With only the doctor, a nurse, an anesthesiologist, and Jeremy in the room, the baby was laid on my chest as the doctor cut the umbilical cord. Then my nightmare came true. <br /><br />The baby turned blue as he tried to cry, with only little whimpers coming out of his tiny mouth. Jeremy had just left the room to announce to the world that he had a son. The nurse grabbed the baby and took him to the other side of the room, which was equipped with medical paraphernalia. The doctor delivered the placenta while I repeatedly asked; "Is he OK?". The baby was taken out of the room and over the hospital intercom blared "Code red, Newborn Nursery". I was in a state of shock, my nightmare was really coming true. For a while, I could only lay there, left alone on the delivery table, absorbing this fact. Jeremy came in and we both knew that the intercom operator was talking about our son. Jeremy went to tell the families but when he entered the waiting room, he broke down crying. I began screaming "Where's my baby? What's wrong with my baby?".<br /><br />You know those books and movies about out of body experiences? I could hear myself screaming but it was like I was listening to someone else. I was in the nightmare I had had every night for 9 months. The room was the same bland hospital room, the bed the same. I was alone. I was screaming. <br /><br />My doctor came in to stitch up the episiotomy and the tearing that was caused by delivering the baby by forceps. He wouldn't answer my pleas, only did his job and kept quiet while listening to my screams and threats. 20 stitches so he was there a long time not answering me! I was starting to yell that I was going to get up off that delivery table and hunt my baby down. Literally as I was pulling myself up off the table, the nurse came in with the pediatrician. It was my anesthesiologist who figured out what was wrong with my son, not my OB or the pediatrician. There was no pediatrician in the hospital at 7:00 pm to rush in to help my baby so the anesthesiologist took care of him until the pediatrician got there. By this time they had been gone so long they had done x-rays and bagged him (CPR mask hooked to oxygen shoving air into his lungs by hand pressure) for probably 30 to 45 minutes, maybe over an hour. This is not something a CDH baby is very fond of to put it mildly.<br /><br />The pediatrician held up the x-ray in front of Jeremy and me and said coldly, with no expression on his face "By x-ray we can tell your son has many problems. He was born with multiple, severe birth defects that affect his lungs, heart, and reproductive system. He has a Congenital Diaphragmatic Hernia, which means there is a hole in his diaphragm and organs in his chest cavity preventing him from breathing. He will need surgery to correct all his problems. I sent for the helicopter. You need to tell him good-bye because he probably won't live to be transported" and he walked out of the room.<br /><br />January 28, 1993 - my CDH Awareness Day.<br /><br />I wish I had some cute delivery photos of a proud mom and dad and disgustingly un-washed newborn swaddled in my arms, but I don't.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7038149227993710943.post-65609955741432958902014-04-02T06:58:00.002-07:002014-04-04T06:56:09.703-07:00Shane's Story - Chapter 1<div class="mbs _5pbx userContent" data-ft="{"tn":"K"}">
For CDH Awareness Month I've decided that I will share Shane's story through photos every day. Or will try to. Hard to wrap it all up in 30 nice neat little packages.<br />
<br />
This is me at my baby shower, about 2 weeks before Shane was born back home in Virginia. That's his dad. No, I don't know what's up with that beard. We were young, stupid, in love, newlyweds of a year and a half and not even old enough to buy beer yet. It was 23 years ago - not uncommon to marry young then. I don't recommend it. Shane came along before I started college... UNC Chapel Hill med school was my goal. Ironic that we would eventually end up there with Shane. These pictures are bad but they are all I have. Maternity photos were not in back then.<br />
<br />
I was determined to have a healthy baby. I read all the books. I ate well except for constantly craving dill pickles and orange sherbet (not at the same time). I wouldn't use the microwave or the remote control I was so paranoid. No smoking, drinking, drugs (except for prescription antibiotics for that infection). We lived in the middle of farm community, I might have been exposed to pesticides. I don't know. Not that that's proven to cause CDH. My point is... I wasn't doing anything at all to "deserve" a sick baby (like any baby deserves to be sick).<br />
<br />
I had a good pregnancy overall with no real morning sickness, just a bladder infection the first trimester and bleeding. A threatened miscarriage that scared the heck out of us for a few days but he held on. I had had 2 very early miscarriages before this pregnancy and didn't want to go through that again. After the bleeding stopped and we got a heartbeat on ultrasound, things seemed ok.<br />
<br />
The 3rd trimester I was hospitalized for dehydration and what we thought was the flu. I had severe, undiagnosed polyhydramnios (too much amniotic fluid, indicating a problem with the baby). <br />
<br />
I had 2 ultrasounds, one at 7.5 months. The doctor wrote down on my records (that I requested later) on the ultrasound check list "Cannot find stomach". They never told me this, never did another test, never sent me to a specialist. Nothing. They diagnosed nothing.<br />
<br />
This was before we had ever heard of "Congenital Diaphragmatic Hernia". <br />
<br />
I dreamt every single night that something was wrong with my son. I knew he was a boy even though we didn't want to know the gender. I dreamed that he was born, turned blue, didn't cry, the doctors grabbed him and took him off to another room and I was left alone on the delivery table screaming "Where is my son?! What is wrong with my son?!" and woke up crying every single morning.<br />
<br />
I told this to my OB multiple times and was dismissed as a "nervous first-timer".<br />
<br />
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