tag:blogger.com,1999:blog-3232961539235158712024-03-05T17:10:38.152-08:00Weston's WarriorsJuliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.comBlogger35125tag:blogger.com,1999:blog-323296153923515871.post-59993704490258396782017-03-07T20:01:00.002-08:002017-03-08T04:46:23.529-08:00Just a glimpseSad probably isn't the word. I don't even know the word. Night comes and I start to panic. Yes, normally, you would think I am just a typical crazy person so meds will help. So, I have tried those and no, they aren't it. You cannot help the sadness, over losing your child, with meds. It somehow leaves you in a crazy place where you are picking up the pieces. After Kinley, though, I needed something to keep myself together. It wasn't her, it was the compilation of losing and gaining in the same season of life. I miss Weston, insanely, because a part of our family is missing everyday. The other night, Adam said " You fell asleep crying and haven't done that in awhile". I had no idea that I was even crying myself to sleep. That was my go to mechanism to cope after W died. Adam would fall asleep and then I would sob myself to sleep. That was a good system until Adam caught onto it and we had a lot of serious talks about sharing our feelings, no matter how small. I am not a good share-er in the one on one. <br />
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I am so angry. I don't even know who or what I am angry at but the top picks of the moment are CHD, PH, and anything related those. I am angry that my friend's kids are sick-not just "oh you have a cold" but "Oh, your kid might die". I am angry that the world is more focused on crazy crap than helping the people that I love. How do we have the best technology but still cannot cure any heart defects. Some, like Weston's, aren't even detected until after they are born! <br />
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Then, we have Sutton. Sutton was so little and he stayed with the girls and vacationed while W was in the hospital for some of the time. If there is anything that I could do, I would bring him back and keep him. He is 7 and absolutely terrified of dying this year. He is so wild and carefree that it is shocking that he thinks about that. He asked me if he was going to die, the other day, and I almost threw up. He is totally healthy and death isn't something a 7 year old needs to think about but he does because CHD and PH murdered his brother. <br />
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I hope to be as brave as Weston, one day. Not today. Today, I want to cry. I don't want him to grow up in Heaven because I want to be able to carry him . I want him to be taking care of his friends and the friends that he never met but they were joined by heart defects. BUT, most of all, I want everyone in Heaven to tell him that we love him and did the best that we could to make him better. Everyone did anything and everything we could have ever asked and we love them so much for it. I don't know if I will ever stop feeling the agony that we did something wrong or chose something wrong but-I know he is in Heaven, pain free, loving on everyone that this crazy earth sends his way. <br />
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So, to celebrate his Angel-versary, we will be feeding the firemen that Weston loved SO much! Please join us! I am send out the magnets this week. This is our way of saying thank you to the brave people that not only made Weston's life special but are the quiet heroes everyday!<br />
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https://www.facebook.com/events/112880475881118/ <br />
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<br />Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-44123843330890493392016-12-31T16:31:00.005-08:002016-12-31T16:31:51.756-08:00Please, Be Kind 2017<span style="font-family: Arial, Helvetica, sans-serif;">2016 has been hard. Recent days have brought together a lot of harsh realities for me. While the rest of the world was concerned with these famous people dying, my friend's kids were struggling-snuggling to breathe, struggling to have their heart function properly, struggling to live. My sweet Angel Mom friend, Kelley, and I run the Philly Heart Angel FB group. As I sent a recent message to a brand new Angel mom, the reality hit me-this sucks-and not in a this will ever get better way but this is the reality of ever mom or day that has ever lost a child. You never get over the "Welcome to the worst group to ever be in in the whole wide world" kick in the face. The Angel group though, they are the glue to my soul. They are people that know my pain in the same way. That means so much in this crazy world. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;">It is easy to forget how fragile human life is. For my friends suffering from congenital heart defects, pulmonary hypertension, lymes disease, MS, RA or any of the other bazillion health issues that take away the normalcy of life, I have thought of you all many times this year. I have tried to become more educated on your diseases and to be more sympathetic of your symptoms. I promise to be better about checking on you and your kids in 2017. I will be annoying. I will bring you food and text you random funny stuff and yes, that is how I show my love. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Today, I facebooked a quote from Neil Gaiman. "<span style="background-color: white; color: #333333;">I hope that in this year to come, you make mistakes. Because if you are making mistakes, then you are making new things, trying new things, learning, living, pushing yourself, changing yourself, changing your world. You're doing things you've never done before, and more importantly, you're doing something."</span></span><br />
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<span style="color: #333333; font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white;">We are doing something. We are being proactive and have had a crazy year of messes, new friendships, and yes, we even realized that we were stronger in ways that we never knew. </span></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The holidays have kicked me in the stomach more times than I can count. I have wanted to lay in bed and cry over missing Weston, over thinking about what we would be buying him for Christmas, over the thought of him being a big kid, and over Kinley pointing at his picture and saying "hey Wes". She knows him. She has a lot of him in her heart. Forgetting him is one of my biggest fears. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">As most of you know, we will be gearing up for "Feed the Fire 2017" here shortly. We celebrate Weston's Angel-versary, every year, by feeding firemen from around the world. Sweet friends all "adopt" a fire department and take them snacks or meals. Last year, we fed over 200 fire departments. You can sign up on Facebook at <a href="https://www.facebook.com/events/112880475881118/">https://www.facebook.com/events/112880475881118/</a> or online at <a href="http://www.signupgenius.com/go/10c0e4ea8a82eaa8-2017">http://www.signupgenius.com/go/10c0e4ea8a82eaa8-2017</a></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So, tonight friends, I am so thankful for all of you for holding me together this year. I am thankful for our friendship and laughter. From my sweet husband who is WAY more patient than me to our wild kids to the heart moms to my Angel moms to my Philly friends to my scout families to my homeschool moms to my everyday people-I love you and wish you the best in 2017! In the words of Weston's best friend Megan, "Let's Rock This". </span><br />
<br />Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-7500909773475342012016-09-06T20:54:00.001-07:002016-09-06T20:54:06.704-07:00Happy 10th Birthday, Baby Boy!!!!!I remember when they told us about your heart, Adam and I just wanted to make it till surgery, then tie the next, and the next, then tie 5. 5 seemed OLD. 5 IS OLD IN HEART WARRIOR YEARS. I dreaded the day that marked Weston's 10th bday. I get overcome with emotion and I cannot find the balance between taking care of the kids and wondering what Weston would be like today. I wish I could explain all of the love and concerns heart moms, dads, and siblings carry 24/7. It is like the club you are unfortunately apart of but love the company you have <br />
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I cry a lot. I miss a lot. I am jealous a lot. I want our baby but, I have to believe that his life is better in Heaven. I have to believe that above all, he was sent to earth for us to all learn to love each other, show kindness, and perform good works. <br />
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This child taught the world to love a little harder, be a little stronger, and to eat Hot Cheetos like they are going out of style. And so I miss you, with all my heart. It is a pain that I hope others never feel because a part of my heart is just gone. But, I love you, and I hope you had the best birthday ever, in Heaven-with all of the ice water and hot cheetos that could ever be included. <br />
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We are challenging people to make a 10 dollar donation, in honor of his 10th bday, to the CHOP Radiothon. http://us3.campaign-archive1.com/?u=47bbb84caeeffd33e1f67f493&id=57e2299ccd&e=bddc7e2a67Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-68517448625969854872016-07-02T17:45:00.002-07:002016-07-02T17:45:57.583-07:00July, well, it is just hardEarly on, in Weston's life, we had this rhyme that was so crazy but "every July Weston would try to die". For my long time readers, you get it. The fear of July was constant. It always began July 1. It would come in like a lion. It was always about the 4th of July that we got the "chat". The first year that we had the "he will die soon" chat, I almost passed out. The second year, I was hysterical. The third year, I almost threw up on the doctor standing in. Those memories don't fade. You don't have end of life talks about your baby and then those moments leave your mind. <br />
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Weston had so many ups and downs in his life. I just thought, without a doubt, that he would make it. For 3, 4th of July's, we celebrated at CHOP and the one before that, we were at DUKE. It seemed completely normal. We would party it up watching fireworks at a special spot. We would eat Rita's water ice and hot Cheetos. Every year, I would say "Next year, you will be out of the hospital". I can't decide whether I was lying or not. Maybe I couldn't believe it myself. When you are in that moment, denial is the first feeling or maybe that is hope. I never really could decide. I always felt like I was bordering both. <br />
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Yesterday, our friend Caelen and his mom Katye were flown to CHOP from Miami. She is so incredibly kind and wanted to know if it gave me bad memories. I told her no. My memories with Weston are never bad. Even the day that we let him go off to Heaven surrounded by the people who loved him. My favorite stories always seem to have him-either alive or hanging around. Kinley recently started pointing to him and calling him "Wes". She is a kindred spirit and a total old soul. She is going to give us a run for our money. <br />
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A few weeks ago, I had the hardest question from the kids. Easton asked "will my child have PH or a CHD?" How do you even answer? Technically, Weston's defect wasn't genetic but there is nowhere near enough funding for CHD efforts so the numbers are about 1 in 100. I tried to explain this with counting bears and with a bunch of other things. All that anyone focused on was that Weston had it and he DIED (as was screamed several times by them). <br />
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Then, when I thought all was calm, we take Sutton to the ENT to find out he needs surgery to remove his tonsils and adenoids. I try to be calm at doctor appointments but as soon as he mentioned surgery, Sutton starts talking about how he can't have surgery at 7 because Weston was 7 when he died. But the end of us talking, I was crying, Sutton was crying, the doctor was likely crying, and I am pretty sure I may have cussed PH and CHD's a whole lot. <br />
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But, it isn't fair. I have friends who lose their kids everyday. People always ask how I know them. Our Philly Heart Mom family is huge. Our Philly Angel and PH Angel mom groups are great. We have an outlet. I am so grateful for them and for all of my CHF and PH family. If I ever have a question, I always have a lot of responses. You all are amazing. <br />
<br />Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-13316824460108267052016-04-30T17:49:00.002-07:002016-04-30T17:49:43.782-07:00The day I felt 1 millionth of your pain<b><span style="font-family: Georgia, Times New Roman, serif;">I debated on sharing this because it is way too personal but I needed you all to know. After K was born, I immediately went into shock. It wasn't PPD, it wasn't grief, it was somewhere in the land of PTSD. Something took over my body. I took K's vitals constantly, barely slept and only then, with my hand on her chest because I was so used to counting Weston's breaths, that I could also count the rise and fall of her chest in my sleep. I was convinced that she would die of something that was hidden. Something that we somehow missed on the ultrasound or the fetal echoes. In the first week of her coming home, Adam called my doctor and made me an appointment. Things were not normal with me and so, they put me on an anti-depressant. OK-this will make me better. I felt more normal. Some things didn't change like me counting her breaths, taking her temp, and having the unwavering feeling that one of my kids could just die at any minute. I was functional, super functional but blurry. Around Christmas, I was laying with the kids and felt "ants" crawling on me. I immediately was convinced I was having a nervous breakdown or an anxiety attack. I went back to my doctor and he upped my meds. I didn't feel right. I started having odd neurological and muscular things happen. At night, my legs would twitch. So weird. I started seeing a counselor in March. When I first talked to her, I had several twitches. She was alarmed and so was I. My parent and extended family like to die of more common things like heart disease and cancer so something rare and neuro muscular was not likely in my genetic cards. She asked how I would feel about weening down to see if I started feeling better-or started feeling anything different. I went slow. I was only 250 of Effexor. It took weeks to go down and down and down. I didn't have a lot of issues until the last ween. I regret not telling Adam that I was weening (Hello, I didn't want him to think I was crazy or addicted to a pscyh med that was supposed to make me better). However, after a few sleepless nights, I had to tell him. I wasn't sure if I was afraid he would be disappointed or what. I always scheduled my weens on Friday so I would have him here on the weekends in case I had side effects. The last ween was the WORST. I was fine during the day but at night, the twitching, the irritability, and the insomnia were so bad that I was convinced I was going to die. I was sweating all of the time, buckets and buckets. To do that all over, I would have read online about what helped others. Finally, I got some relief with some benedryl and was finally able to sleep for a few hours one night. </span></b><br />
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<b><span style="font-family: Georgia, Times New Roman, serif;">Those sleepless nights made me think so much of Weston and our heart kids weening off of these lifesaving drugs. I was a sweaty, crazy mess so to think of how they feel is just unimaginable. I remember holding Weston and rocking him as he twitched or sweated or had desats. You never forget those moments as a mom. </span></b><br />
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<b><span style="font-family: Georgia, Times New Roman, serif;">I have been off of Effexor for 3 weeks. I have lost 10 pounds, don't have to take a nap EVERY single day,. I have cried a bit more than when I was on it and I am certainly more in touch with my emotions. I feel clear. It is like a fog is gone and I can actually function without a daily nap. Adam saw the best result when I laughed at a movie we were watching. It </span></b><span style="font-family: Georgia, Times New Roman, serif;"><b>wasn't that the meds caused me not to laugh but they made me seemingly indifferent to happy or sad emotions. </b></span><br />
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<b><span style="font-family: Georgia, Times New Roman, serif;">Parents, I do not want to discourage you from getting mental health help. Getting on meds was the best thing I have ever done but, I want to encourage you to also see a counselor and be leery of side effects that seem bizarre to you. I never took anything while Weston was in the hospital and I regret not taking care of my mental health then. Parents too often say, oh I will later, but then it snowballs into something very serious. If anyone ever feels like suicide is the answer, please call the hotline and talk to someone 1 (800) 273-8255. Sometimes, it does feel like you are alone but suicide is not the answer.</span></b>Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-17737402823600068542016-04-20T17:52:00.000-07:002016-04-20T18:30:15.636-07:00From the outside, looking inThe day that someone says that something is wrong with your child's heart is life changing, Suddenly, you are sucked into a life of medicine, surgery, rehab, recovery, and heart wrenching decisions that no one ever wants to make. The days of having a heart child are very "warrior like". Every heart mom, dad, and family go above and beyond the typical "go team" challenge and we all go into fight to flight. You celebrate the good times because they are clearly a miracle and beg God for help during the bad times. I remember walking to CHOP praying with the kids, everyday, going over the South Street Bridge to CHOP. I prayed out loud for each one of them but more so, in my head to just let us all get through the day alive. <br />
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Then, Weston died. Suddenly, you aren't a heart mom exactly anymore but you are the freaking furthest thing away from a normal mom as ever. You empathize with hospitalized families in such an intricate way but you have to keep your comments to a minimum because if you let a new heart mom know that your child died from their child's illness, you will feel like crap. It is never easy to tell a new heart mom that your child fought but didn't make it. Maybe they think they gave up or that we weren't good enough at cheering them on, but you are automatically the outsider. <br />
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If all of this isn't enough, the physical and emotional and spiritual tolls are life altering. Everyday, my heart hurts like being stabbed. It doesn't go away. I never ever forget that I am missing one of our kids. I see kids that would be his age and just cry because that seems so big. Then, there comes the crying. I cry all of the time. Ok, so I get myself together for the day but sometimes, still, I wake in the night just sobbing. How could God take him? Adam and I went through so much. We split our family apart for years fully expecting our faith in God to allow Weston to return home with us ALIVE. My biggest fear was having a carseat but no child to fill it. I thank God for a lot of things-the love from Philly and our local community, the great care that Weston had, but never, ever will I understand why he felt like Weston needed to go to Heaven. It was his plan, I guess. But that is where my rift is. God and I will never be the same. I believe and I stand back a bit. Adam and I go to a parenting class that I love. Phil is a great teacher and he makes us think. He is also the only preacher than I have ever told that I want to run away from church. Going into church now makes my heart pound so hard that I can't even hear for the start. That is what being an Angel mom is. We celebrate our Angels because they will always be in our heart. I am forever Easton, Weston, Abby, Emery, Sutton, Avery, Ellie, and Kinley's mom. Angel moms, celebrate your Angels. Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-87039041763540539382016-02-26T19:03:00.000-08:002016-02-26T19:03:25.696-08:00That last monthEveryday is just like yesterday. People may say that you get over it but, especially for that last month of Weston's life, I remember every moment. I haven't cried in the car in a very long time. One of my best Angel mom friends, Jennifer S. told me once that she stopped crying in the car around the first year. I guess that was true for me. Except, yesterday, I cried all day. I cried at the store. I cried in the car. I cried just thinking about Easton becoming a big kids and going into a middle school high school community year after next. <br />
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Our trip to Philly this past weekend was AMAZING! I know Weston lives in Philly. I just like to follow his footsteps. We would go to the park for him to play. The Terruso's, Millie, and Patrice are so dear. His favorite doctors and nurses all weekend. And my Philly Heart Moms being absolutely amazing at the CHF Ball. I adore the CHF family. Such wonderful folks putting on the spectacular event! It was just the happiness that dreams are made of and I could feel Weston all weekend long. I kept walking through Rittenhouse (I kept losing things that I needed) and so much reminded me of our walks. Our final dinner was a surprise (we didn't know we would stay the extra day in Philly) but one of our fav PA's met me at the Jefferson Institute to help me with the kids. Adam was busy doing school work (more of this later). Karen and I rocked it! Few people will volunteer to go with you to a museum you plus 8 kids-1 borrowed. <br />
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We proceeded onto dinner. Dr. Hanna and Stephen were already there. It was just incredible. Kinley was afraid of him last time but this time, she was intrigued. Ellie talked nonstop, Easton picked his brain, and Sutton fell in love with Stephen. Seeing Sutton love on S was just like the Weston love. We ate so much overly delicious food and spent so much time catching up. There were a couple of empty chairs but as I saw Dr. Hanna holding Kinley, I knew W was there. If you know her, she is a screamer. She does not like anyone new. She went to him and studied his face. He fed her plates of yummy food. Ellie talked his ears off. She was nonstop. If you don't know, Dr. Hanna is her favorite person ever. We have a hard time telling her we are going to the pediatrician because she requests a Dr. Hanna consult. We missed Heather and Rachel. Two of my fav gals. <br />
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I want to thank you Philly, for loving Weston and for loving us! We always look forward to next time. <br />
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Thank you all!!!!!Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-65679313475670087192016-01-20T17:19:00.002-08:002016-01-20T17:19:54.875-08:00All of the times that I spent loving youI didn't realize all of the way to show love until there was you. I gave my all for Adam and Easton but, you needed a different kind of love. A love that I had to dig deep in my soul to find. I had to be an advocate, a cheerleader, a caregiver, a nurse, a personal assistant, and a decision maker. None of those are my strong suits. Before you, I was afraid. Afraid of the things I never know. I didn't even know I was afraid of them. I remember the day, in your PICU room, the sweet echo guy. He was so young and he looked terrified. I was hanging onto his every single expression and when he sent out whatever 911 call, he sent that called every doctor in the hospital in, that is a feeling I will never forget. I was begging him and hysterically crying for him to tell me what was wrong. How could anything be wrong? I had a ton of ultrasounds? I ate the right stuff. He told me a doctor was coming to talk to me. Adam came back (he had run home to get clothes) and together, we watched a small Indian woman, draw us a photo of Weston's heart. Fast forward, 9 years. You would be 9. Adam and I are sitting in the office of your cardiologist, the woman that saved your life. I didn't want to go there. I cried the whole morning, I was mean, I was hateful, and I just wanted to run away. No one wants to hear bad news and I was certain, we would have some awful surprises. We had everyone that ever walked into Weston's room check out whichever kid that happened to be there, but I was still so afraid. Walking in, I wanted to throw up. I spent a lot of time checking kids in and then we got to the echoes. We met Eddie (wonderful) who eased my mind immediately by talking to Easton like a friend. Maybe he could feel my mommy eyes glaring at the screen or that if he had seen something bad that I was going to vomit in his lap. Yes, I hovered. As the kids got passed back and forth (Adam and I traded out in the hall), I got to catch up with Amber, her lovely nurse. Amber was a Godsend. Everyday, for so long, I would call her and leave a message that Weston had a crisis and we would be in at 8am. She was a blessing and a welcomed smile. Dr. Anand came in during every echo to reassure me. Thank you, Jesus, the kids all have healthy hearts. <br />
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I want to encourage my mama friends to get your kids checked. I know it is scary. I am so grateful to Adam that he forced me to face my biggest fear!Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com2tag:blogger.com,1999:blog-323296153923515871.post-44391591571396670602015-12-21T16:33:00.001-08:002015-12-21T16:33:52.065-08:00The things I rememberFor so many years, since Easton was born, our holidays were meant to be perfection. Ornaments, crafts, special outfits, the whole 100 percent. The first year Weston was in the hospital, I seriously exhausted myself making the kids and him do an ornament per day. The next year, we were so lucky to be in Philly and he was at GOL with us. What an amazing day. We stayed in PJ's all day-all against the GOL House rules. On December 1, 2013, I got the ABC Christmas movie calendar. Weston was super sick. It was my job to make this the best ever. (Imagine having a giant rock on your shoulders). We brought in decorations, and then, his tree got tossed over in a rush to replug in his oxygen. Our poor nurse (he had no kids but was amazing), immediately swept up the glass as tears rolled from my eyes. This was going to be the best Christmas ever, damn it! That is right, come hell or high water, we were all going to have memories. Then, came the call. Weston went to surgery, the kids all got to see him after and see that he was doing well. The littles were swept off by my amazing friend, Laura. Come Christmas, Weston was reintubated. He had no interest in Christmas and all of the kids presents were piled in the bathtub in his room. Our sweet friends, the Terruso's took Easton and Santa surprised him with concert tickets. Thank God for them and Laura. It was that day, as Adam and I sat wondering about all of the unknown, that I felt the spirit of Christmas. I knew about God and was a firm believer but, what I had never had was the feeling of seeing strangers care for your child, give their time up with their own family to spend with someone more needy, move our elf "shelf" around and make sure that Weston's every need was met. They were the people that small talked with me because I need to talk when I am nervous, they were the people who bounced Ellie as a baby when I was so sleep deprived, they were the people who kept me sane. I loved their stories of restaurants and dating. We shared funny stories and recipes. That love, that love for others is really the "magic" of Christmas. What they were able to give to me will never be able to explained. <br />
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While Weston will never celebrate another holiday with us, here on Earth. I know his spirit is near. Many Angel friends have gotten pregnant with their Rainbow babies, one of Weston's most beloved nurses finally got engaged to her long time bf, other loved nurses are traveling to amazing places and helping children, and so many people have sent us sentiments of love and how they feel Weston is close. It is because of all of you that I feel a little better, a little closer, and a little more loving towards everyone this holiday season. Adam and I hope you all have a most Blessed holiday. Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-83686660389273634162015-12-12T18:41:00.000-08:002015-12-12T18:41:17.936-08:00Dear mama of our transplant Angel, While today, two years ago was the day Adam and I had been waiting for, for Weston, we had also been praying for you for years. Life shouldn't be like this. No child should have to die. It is just unnatural. But, last night, two years ago, your daughter passed. You decided then to make the amazingly brave decision to donate her organs to children you didn't know. In the middle of your tragedy, you gave my baby a second chance at life. Grateful doesn't describe it. Adam and I spent years while Weston waited on the transplant list hoping for God to give you peace or for God to intervene and Weston not need a transplant. Two years ago, millions of people started praying for you because you are the mother of Weston's Angel donor. I hope those people still keep you on their minds because I think about you everyday. Although Weston's transplanted life was very short, you gave us the gift of knowing that we had done all we could do. You, unknowingly, helped us move the earth, moon, and stars to keep him on this earth. So, today, wherever you are, I hope you feel surrounded by all of the prayers and thoughts and love that I ask all of Weston's followers for, for you. In honor of your daughter, Adam and I challenged people to sign up to be organ donors. So far, over 3,000 have done so. I hope that you know that your gift was not in vain and that we treasured the months after transplant. You allowed our son to celebrate another Christmas, take another bubble bath, ride is tricycle around the CICU, and most importantly, spend time with his brother and best friend. You gave us the gifts that no one else could. Please know that we will never forget you or your daughter. We will think of you daily and your admirable decision. I hope others are as brave as you and sign the organ donor card or do it online at <a href="http://1.usa.gov/19QysQ8" rel="nofollow" style="color: #3b5998; cursor: pointer; font-family: helvetica, arial, sans-serif; font-size: 12px; text-decoration: none; white-space: pre-wrap;" target="_blank">http://1.usa.gov/19QysQ8</a><span style="color: #373e4d; font-family: helvetica, arial, sans-serif; font-size: 12px; white-space: pre-wrap;"> </span>Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-30679592456259811252015-12-04T17:43:00.000-08:002015-12-04T17:43:09.964-08:00Merry Christmas, from all of you Today, the kids and I got the Christmas decorations out of storage. You all will never know how much those mean to me. When Weston asked for ornaments, I was like "what?". He received thousands of ornaments. Today, as I unpacked the paper boxes that Stephen so lovingly brought us, it took my mind back. Back to that happy time. Back to when Weston was a fighter and I was a total believer in the process. He were all still wanting him to get that transplant and he would rock that. So, I think now, did he really rock it? Is transplant what we SHOULD have chosen? I have mixed feelings but, I know that 1000% we did everything under the sun to keep him going. I know we cheered him. I know we loved him. I know that the kids kept him lively. I know that we did everything we could to get him to gain weight. So, where do you come in? Many nights I laid awake on his couch, looking up at his ornaments. I remember them so vividly. Every ornament let me know that someone, somewhere was thinking of him. In such a weird way, I think that is why he asked for ornaments. He knew Adam and I needed that support. So, please know that this Christmas is just the same. We will hang Weston's ornaments and know that so many people love him and our family. We will have a tree of love from all over the world. <br />
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Thanksgiving was awful for me. Giving thanks felt like ripping my heart out of my chest. It took my breath. This year, somehow seemed worse. Not the circumstances, I was surrounded by friends, but it just took me back to our last Thanksgiving. Adam ripped off the door to my oven. It could have been hilarious but I cried. Thanksgiving needed to be perfect. All hospital holidays need to be perfect. His nurse called and we were juggling everything to come. I felt like such a failure. But, in true Keeton form, we rocked it. Weston and the kids ate and ate, we fed the staff, and everyone took a nice nap. Best moments. <br />
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For the next few days, we are challenging you to give 5, give 5 dollars to http://www.karisheartfoundation.info They were amazing during Weston's stay and just amazing. Please put it in your heart to give 5 for Weston. Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-25941451265428388142015-11-18T16:42:00.000-08:002015-11-18T17:39:32.849-08:00dealing with grief<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">The last few weeks have really had me thinking about people say careless things to people dealing with grief. Unfortunately, unknowingly, I know I did it to people that I love and care about. Before Weston died, I thought our life would be different. We believed in miracles. We cherished everyday. We worked ourselves to death to care for him and the kids and try to maintain a relationship. It was not to be. When Weston died, I knew it was my fault. The weight of the entire world was on me. Adam can never know how I felt in that instance of telling the doctors to just get off of him and me ripping lines out. I think it was pure panic and torture. I felt like I was screaming-or maybe just whispering. My ears were burning. I was doing a marathon in place. My heart was bursting before my eyes. As time went on, I read many of my prior posts about Miracles. I even posted that the people that Weston touched were the Miracles. That is exactly true. To this day, I get messages from strangers about how we touched their lives. For the Angel families that I hurt, please know that it was not intentional. Our babies were all miracles. Our babies all defied the odds and rocked this world in a way that we may never even know. No, I will never have another baby to replace Weston and I constantly wonder if God took Weston because he knew that his personality and our family was too wild for a post transplant lifestyle. Or maybe, God just said, Matthew </span><br />
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<span style="color: #333333; font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">go back so many times to the last morning. He had not been himself for so long, Adam brought me a chair for rounds because I was so woozy from not sleeping and being pregnant. I had talked to Dexter days earlier and we exchanged a few words about how I was going across the street and it was the first time I had left in a long time. I talked to my best friend Laura. I don't know about what. She had our other kids. I just remember her telling me to tell him that I love him. So when we got the call, after we had left for brunch, my heart exploded. Adam was in charge of all calls. We were running but in slow motion. In that moment, everything I believed was stolen. Adam and I told Weston to go to Heaven and that he was so brave. Then, there was a stolen silence. Nurses and doctors trying to calm us or clean him or lay more blankets down to step on. And then, somehow we were laughing and telling jokes. Those are the signs of love. Mike T. took Easton to play video games. Nurses and doctors came from all over to tell us how they loved W and us. </span></div>
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<span style="color: #333333; font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">That is a day I will remember forever. But, my favorite days, the days that mean so much to me were the days at CHOP and home where Weston lived. Many years ago, he came home a few days ago on the 17 month anniversary at CHOP. We celebrated every month! Why? Because he didn't die!</span></div>
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<span style="color: #333333; font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">This kid-his hatred was July, my birth month. From July 1-July 31, his heart and lungs would try to die. He would pull through every year and he a rock star. Every July, Adam and I would go into meetings that were filled with panic (from all parties) and love. Tissues were passed around because we all knew what these meetings meant. </span></div>
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<span style="color: #333333; font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">So, I miss this big kid-he would be 9 now. That is so big. Maybe he would not want to be carried in my arms anymore? Maybe he would be a math whiz? Maybe he would read for me instead of his fav hospital teacher? But then, maybe we weren't cut out to be transplant parents? Maybe we did something wrong? Maybe his life meant more than we will ever know? </span></div>
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<span style="color: #333333; font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">But, without a doubt, I know that there is another world, much better than this and I feel safe in knowing that Weston is there and waiting on me. He will forever be 7 and I will be able to carry him around forever. </span></div>
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Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com2tag:blogger.com,1999:blog-323296153923515871.post-56925063763447180232015-10-30T18:22:00.000-07:002015-10-30T18:22:05.665-07:00Complete funkGuys and gals, I am in a complete funk. Halloween was a favorite of Weston. He rocked Halloween every single year. Of course, our kids have fabulous costumes and love the trick or treating but, I think so often, of his Halloweens. Maybe his last Halloween when Ellie ate so much cotton candy that she had it up her nose? Maybe the one before that when he got tremendously ill after he trick or treated? So, this year, I am trying hard to let the kids do and be what they want. Our fav costume that Weston wore was the flaming hot cheeto costume. Adam and I have it in our bedroom. Everyday, I may take 7 kids out but, in my heart, I am always taking 8. Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-82459089634701914962015-09-17T18:40:00.000-07:002015-09-17T18:40:23.036-07:00Some days are just better than othersSometimes, I think about all of the things your dad and I miss out on with you. When I went to the homeschool equivalent of parent teacher night, I walked past one class very quickly. Thankfully, my childhood friend was the teacher so I am sure she knew why I couldn't look in her direction. You would have been in that class. I see those kids and it is hard to imagine you in there. I am sure you would have rocked 3rd grade but WOW, that seems so old. I don't always think about you being big because we struggled so hard to get you to grow. I saw some pictures of you yesterday. Those hospital days feel like yesterday and an eternity away at the same time. In so many ways, I miss those days. Everyday knowing you were being cared for by the very best but, I will never ever miss the scary days, the dark days, and the ones where only tears were shed. <br />
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I was thinking tonight how yesterday, Kinley took her first steps while I held out a treat. You loved treats and your first time walking was so you could eat a banana. I think about what you are doing in Heaven, a lot. I know Heaven is a wonderful place and I am sure you are cared for but, I would enjoy a little glimpse. But then, maybe that would make me miss you even more. My biggest fear is that I will forget you. That I will forget the memories, the funny jokes, and the sound of your voice. As much as I love listening to videos of you, at the same time, it hurts like pins and needles. I may never understand this life but I know that I miss you to the moon and back. Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-55281547236341057532015-09-02T19:00:00.002-07:002015-09-02T19:00:53.683-07:00You are turning 9 but you aren't hereMaybe, every Angel parent feels this way but I cannot fathom Weston being 9 years old. In my eyes, he will be forever, my tiny, adorable, 7 year old. He will be the tiny boy that I carried on my hip for so long. The one that I would scoop up to smooch all over his precious face. 9 year olds are big, they are half way to adult. Weston had a lot of adult in him but he always loved for his dad or me to pick him up and carry him. One time, a doctor asked why I was carrying him ( he was 6, at the time). I was very honest and said "Because, one day, I know, I won't be able to". I cherish everyday with our kids. I never want them to feel like they are leftovers. They are amazing and keep Weston alive everyday. It really hit me the other day, at Open House for our homeschool community, a childhood friend is teaching what would be Weston's class. I have a child in all of the other grades except hers. I walked quickly past her classroom trying to not cry. On the way home, I talked to God a lot. What did we do wrong? I heard a sermon a few weeks ago on the trials of life. God gives them to you so you can overcome and love him more and be a testimony to others. Well, friends, I do not feel that way. Not today. Some days, I feel right in line with that. I know that we have helped so many families and parents after Weston died. I feel wrong to say that I still don't hold a grudge against God but, at the same time, I am so at peace that Weston is in Heaven being taken care of by my grandma and dad. Other days, I am selfish. I want our baby back. I want to walk him into his class and say hello, I am Weston's mom and he is very special. I want to see lab results on how well he is doing. I want to cheer him on for 6 minute walks. <br />
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What does his life mean for all of us? Well, Weston loved giving things. He loved giving out treats. I would buy candy so he could give it out to parents, kids, nurses, and doctors. His life was all about giving! So, tomorrow, Adam and I want you to pay it forward, in honor of Weston's Birthday. <br />
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<br />Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-59940059441278332772015-07-31T20:44:00.000-07:002015-07-31T20:44:06.413-07:00The best thing we ever did was leave our kids so we could take a vacationAdam and I have been married 10 and a half years. We have never vacationed without our kids, except for our honeymoon. Over the past years, we have struggled. We have lived apart (because of Weston's health), we have grown apart, we have lived separate lives. A year ago, we decided to change that. We were going to make time for "us". Us as a couple. After Weston died, we fell into the "we will make everything ok for our kids" routine. We did a great job of that but we didn't take care of each other. We tried to learn to live together again-to coexist in a way. We co-parented but it wasn't that same spark. I was worried we were destined the same fate that so many other heart, transplant, and angel families have-DIVORCE. We fight, don't get me wrong. We can even make other people cry while we fight. But, at the end of the day, there is no one that I would rather have this crazy life with than Adam. So, a year ago, we decided to take a vacation without the kids (gasp). No kids, no babies, no diapers-just us. Geez, how scary is that. We decided to go on a cruise to Alaska (Adam was afraid I would try to come back to the kids if I got homesick). We prepped everything perfectly. The little kids stayed with Paulette, Cheeto stayed with Pam, and the big kids went to camp and spent the weekends at Ginger and Greg's. Adam and I flew away to begin a vacation. It was life changing, to say the least. We were friends. We had things to talk about. We enjoyed being together and shared a lot of fun activities. We laughed together at getting into wetsuits. We learned to communicate by kayaking together. I learned that if I ever cruise with Adam again, I need a balcony because the man loves to sit outside (rain, shine, hot, or cold). I learned that we both love something about living somewhere remote---well, kind of remote. I need wifi. Let's be real. We both loved Vancouver. The friendliness was overwhelming. The transportation was impeccable. Adam and I walked the streets holding hands. We discovered new places. We browsed the markets and enjoyed finding treasures for the kids. We talked about Weston some too-not in sadness, but, he made it known that he was with us along the way. On the last night, we were voted cutest couple. We had met a singer at the restaurant and told him a little of our story (just that we had 8 kids and never vacationed without them-we left out Weston dying and our crazy dog). As Adam and I danced and the whole bar clapped and cheered, I knew that THIS was the man I married. This was my sweetheart and we made it. We made it through all of the crap, we made it through unbelievable strife, and we survived-together. <br />
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I have so many friends that have never left their kids. I want to encourage you all to find somewhere for them to go and spend a night, a weekend, a week, or even 2 weeks to reconnect with your husband. It was absolutely amazing for us! I think it is easy to get our lives wrapped completely around our children but, soon, they will be grown and we will only have each other to live with. Healthy marriages are so important. Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-38174794867741621922015-07-03T19:19:00.000-07:002015-07-03T19:19:01.770-07:00And there we were, 2 years agoI will never forget today, 2 years ago. Weston was sick. He had a weird cough. We brought him back to CHOP and he was too sick to cath. He had a cath, on this day, after a night in a pod. As many of you can imagine, I should send apology letters to the babies in the pod with him. He told us he was going to take care of them for the night. Right before his cath, Dr. P (standing in, bravely, for our main man, Dr. Hanna) called us over to the nurses station to tell us that Weston may not live through the procedure. That really set the tone for the rest of the day. I was hysterically crying constantly and walking around with a box of tissues. Adam was a rockstar and was consoling me. Weston told us that he wanted to be awake during the cath and we agreed to let him be awake unless he was in pain. Hours passed. Thai food arrived. Right as Weston came back, Adam ran down to get the food. Dr. Dori (God bless this man's heart) came and told me he would never cath Weston again because he was too sick. We were heading to the conference room. Meredith was taking Easton to the playroom. Everyone looked like they had been crying. BAD BAD BAD, I knew it was just bad. Our conference room was filled with folks. Dr. Peridon was honest and told us Weston was going to die without a transplant soon. Heather tried to toss some words in. I was busy hyperventilating and gagging. I thought I was going to projectile vomit on this poor doctor. Adam rubbed my back, Meredith kept saying my name, it was an out of body experience. My mouth watered and I just kept choking. Dr. Rossano was a rock star. He asked what we wanted to do. We decided we would continue with the transplant list but, we wanted to get Weston out of the hospital. He talked about DNR's and all of the things encompassing that. But, Weston wasn't going to have that, he was going to power through it and rock his transplant. That kid gives me hope and strength everyday! Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-10984719637892425402015-05-30T19:40:00.002-07:002015-05-30T19:40:37.299-07:00I just hope you remember meThese last few months have been bizarre. I feel like I forget how to feel or act. We are working on getting settled into this new life. What makes me crazy is the people that know the "new us" never knew the "old us". Some don't even know about the struggles, the years we spent apart, and YOUR FIGHT. Some have no clue of what a warrior you are and were. How are we the family missing a key part. I used to want an even number of kids, always. I wanted every child to have a best buddy. I never imagined the boys losing one of their best buddies. We will never forget you, not ever, never, without a doubt. <br />
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Last weekend, I touched your hand mold for the first time since you passed away. It was just like I think of it in my mind. Your skinny fingers, your hand, so small, just perfect. You used to love to play with my long hair. Once, when I had it trimmed, you complained because you couldn't reach it as well. Today, we went through some stuff from you room. YOU were so loved by everyone. The kids were blessed from the folks that thought so much of you and our family. Your personality was electric. And, we brought home the cotton candy machine! I know you loved that. <br />
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We think of you everyday. In the past year, some things have improved. I can drive now without hysterical tears. We talk a lot about you and what you mean to our family. The kids know that when they see hearts, that is means they are thinking about them. And well, your dad and I, I think we are learning to live with a broken heart. <br />
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On June 1, we will start the Change for CHOP campaign! This money goes to Child Life, Music, and Art. You LOVED those! SO, guys, start collecting your change! Our goal, this year, is 536! The miles from our house to CHOP! Those miles Adam drove so many times. Those miles, we sometimes drove together. The happiest miles and the devastating miles. Philadelphia, especially the people at CHOP, are forever so much a fantastic part of our life. We love you all and thank you for praying for us and sending special thoughts!!!Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-8680269739388316782015-05-09T18:43:00.002-07:002015-05-09T18:43:28.552-07:00Mother's Day<span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">What do I want for MD? I want my child back, healthy and free of disease. I want to have never seen kids on ecmo, struggling to breathe, and struggling to survive. I wish every child had a pulse of screening and that CHD's were picked up on prenatal ultrasounds. I wish all doctors offered families hope. I wish every family with a sick child had a wonderful PACT team like we had at CHOP. I wish that other mothers never have to endure the heartache that I feel each day and that not another family moment is taken for granted. I want to have never known a child who died from PH, cardiac illness, cancer, or the million other childhood diseases that are so prevalent now. I want every mom to feel as loved and treasured as I do by Adam and, on most days, our kids. I want single moms to know what rock stars they are. I want my mom friends battling disease to be cured. I want everyone to treasure the funny moments with your kids. Enjoy them being wild and carefree. I want everyone to have a 4 year old tell them everyday that they are their best buddy. I want everyone to have a 3 year old twirl around in her new dress and then tell you that you are "boo tiful". I want everyone to have a child like Easton-a treasured soul wise beyond his years. I want everyone to have a Weston-a warrior, bringing light into the world even after death. I want everyone to have an Abby-a patient, caring, baby loving girl. I want everyone to have an Emery-my bossy, bug loving, artistic child. I want everyone to have a Sutton-the class clown always coming up with hilarious things. I want everyone to have an Avery-a bossy 4 year old ready to take over the world. I want everyone to have an Ellie-a sweet girl with a naughty streak. And, I want everyone to have a Kinley-a sweet love who spreads joy by giving sweet smiles. I want my friends who have lost children to never have endured that pain. I want my friends who struggle with infertility to miraculously get pregnant or adopt and fill their home with sweet faces. My hope tonight is that our kids know that they are loved more than the moon and the stars and maybe, just maybe, Weston will come see me in my dreams.. I love you all and hope you have a wonderful day tomorrow! </span><br />
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Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com1tag:blogger.com,1999:blog-323296153923515871.post-35119898092807198542015-04-21T19:04:00.001-07:002015-04-21T19:04:29.253-07:00And, I have never missed you moreWe went back to Philadelphia this week with a handful of tasks-see our old friends, celebrate Weston's donor and recipients at the Donor Dash, and to meet with Dr. Hanna for our autopsy conference. Doesn't that just take your breath away? Weston always wanted to help people. He would always say that he hoped that if he died, his body would be used to help others. Amazing. Walking inside was almost too much to take. It was exactly like before except my baby wasn't there. His rooms were occupied by different kids and we were visitors. My first visitor badge ever-not the bracelet I was used to having. I am so glad my friend Patrice was there to help us because I was a mess. We walked through visiting. We started the day by coming to visit the floor. I met the new PH doctor, Doctor Hopper. I wanted to hug her and tell her that I had heard so many wonderful things but I thought that might be weird. We saw Stephen and he looked just the same-very dapper and ready to embrace the kids. Stephen is a good guy to see first. His laid back nature just sets you at ease. Easton was so excited that Stephen knew that he was getting ready to be a Boy Scout. Every step, I was reliving over and over. We walked the halls that I bribed Weston to do PT through. The halls Weston plays hide and seek. The bazillion times I went and got him ice and water from the nourishment room. We looked out the same windows that Weston would look outside to the people walking. I remember Meredith and I telling him when he was going to get out of the hospital and he was going to be outside with those people. I had to resist wanting to go to his old rooms just to make sure he wasn't hiding. I am sure that is so not normal but our little kids felt it too. Ellie and Avery both asked if we were there to pick Weston up. We kept telling them over and over that Weston wasn't living there but, I secretly know he is. He is floating around, playing pranks, giving kids belly laughs, and watching fireworks from Dr. Spray's office. I was so glad to see so many people that had been through the thick and thin with us but, of course, we missed so many. New nurses had no idea why our big family was hugging the fellows-the same fellows that I had told them on their first day to please not kill Weston. Nothing gives you a HELLO to fellowship like a crazy, hormonal mom (with a newborn) being over protective. It was so great to see them. Like a proud mom, I could see how they have grown and changed. They are an outstanding bunch! We went to eat at Mad Mex. On the way there, we took the back way and it passes by where the morgue sends their kids out. I thought my heart was going to stop. That was Weston's final goodbye to CHOP. Mad Mex was our local spot but somehow it felt so different. Then, it was time to meet with the man of the hour-Dr. Hanna. The kids were so pumped to see him. The kids have always loved on him but Ellie, well, she has a special place for him. The big girls always want to call him on the phone, Avery wants to tell him what to do, but Ellie, well, she is just his girl. She asked all day about when we would see him. Easton was upset that he couldn't come to our conference. He is such a star- a rock star among brothers. Sutton runs behind just soaking it up and becoming the best little brother ever. Patrice took them to the car while Kinley stayed and visited. Dr. Hanna gave us some answers-Weston's death was very quick, specific to his lungs, painless, and, we both agreed that it was every single bit of drama and trauma that Weston would have wanted. He was always a kid with flare and he wasn't going to let us all be weeping around him when he died-he was going to die with the fireworks that he came into the world with-it was going to be his way. Dr. Hanna went on about how Easton is destined to do big things. That gave us peace of mind because deciding to bring your 5 year old to live in the hospital with you is not exactly an easy decision. He also said something really astounding-he said he felt like Weston's siblings were his lifeline. They forced him to keep on and kept him grounded. That made me so happy. We have always questioned whether giving Weston so many siblings was the right thing but, it was. They loved, hugged, kissed, fought with, kicked, pinched, bit, beat up, and, in the end, mourned him. While it was definitely a hard visit, coming back was just like coming home to family. It was great to hug everyone and let everyone, even June, the therapy dog, know how much they meant to Weston and our family. And, for that, I am so grateful. <br />
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<br />Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-56250959118205417472015-04-10T18:40:00.000-07:002015-04-10T18:41:21.590-07:00One Year Plus: Now What?<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; text-align: center;">
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<span class="Apple-tab-span" style="white-space: pre;"> </span>It has been over a year now, and here I sit missing my boy. Over the last year I have been angry, mad, lonely, lost, happy, sad and about every other feeling you can be. My marriage has been the best and the worst, we have fought and cried. To put it simple the last year has been hard.</div>
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<span class="Apple-tab-span" style="white-space: pre;"> </span>We where finally able to all live under the same roof for the first time. It is a weird thing to have to get to know your wife a second time. Thankfully we were able to find an Awana’s for the kids to go to, this was such a blessing for Julie and I. The kids got to do their thing and we got two of the most important hours to work on our marriage. I am so happy that we have had this time to reconnect.</div>
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<span class="Apple-tab-span" style="white-space: pre;"> </span>The kids have also had their up and downs. They missed us and we missed them. It is so good for my heart to be able to hold my kids again, to be able to see them everyday is so good for me. It is such a wonderful thing to see the kids all together and playing. The kids have shown me so much, the way they remember Weston and tell stories of the fun times they had together.</div>
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<span class="Apple-tab-span" style="white-space: pre;"> </span>So after over a year what have I learned, I have learned it is not easy moving on. Life sucks sometimes, yeah it sucks, that is just how life is. I have learned that marriage is hard, and marriage after the death of a child is even harder. Weston taught me many things and maybe the most important was to enjoy life now. </div>
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<span class="Apple-tab-span" style="white-space: pre;"> </span>I would challenge you to enjoy life now and never stop working on your life. Love your family, love your kids, and love you spouse (or whatever). Love will get you though a lot but work will also be required. </div>
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<span class="Apple-tab-span" style="white-space: pre;"> </span>Thanks to all who have help me and my family.</div>
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<span style="font-size: x-small;">AK</span></div>
Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-2476677471149860332015-04-04T18:01:00.004-07:002015-04-04T18:02:44.170-07:00Emptiness<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; text-align: center;">
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An empty spot at the table.</div>
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A count that is just not quite right.</div>
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My world is not that stable.</div>
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One missing every night.</div>
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What, I would give!</div>
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What I would take!</div>
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Where did you go?</div>
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Now all I feel is alone?</div>
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The darkness must not win.</div>
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If only just for their sake.</div>
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I can not believe you are gone.</div>
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The Doctors must have it wrong!</div>
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This pain is so real!</div>
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The weight is to great!</div>
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Why would your light need to go?</div>
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To soon for my taste, to little time indeed.</div>
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Can you still see my need?</div>
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My world has fallen apart!</div>
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My family is incomplete!</div>
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How do I hold this together?</div>
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What can I do?</div>
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What new love can there be?</div>
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Can you send a clue?</div>
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I am down upon my knee!…..</div>
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Just waiting…waiting….waiting!!!!</div>
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AK</div>
Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-74307734502778846512015-03-23T03:40:00.002-07:002015-03-23T03:40:40.899-07:00A Simple Thank YouThis is for everyone who has every help our family. On this, his one year, we just want to say Thanks!<br />
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<br style="font-family: Helvetica;" /><span class="Apple-tab-span" style="font-family: Helvetica; white-space: pre;"> </span><span style="font-family: Helvetica;">How does one person thank so many? I have no idea.</span><br style="font-family: Helvetica;" /><br style="font-family: Helvetica;" /><span style="font-family: Helvetica;">How does one person so dear to me touch so many people, in so many ways? I have no idea. </span><br style="font-family: Helvetica;" /><br style="font-family: Helvetica;" /><span style="font-family: Helvetica;">How does a group of people give hope to so many little children everyday? I have no idea. </span><br style="font-family: Helvetica;" /><br style="font-family: Helvetica;" /><span style="font-family: Helvetica;">How does a person give back to such people? I have no idea. </span><br style="font-family: Helvetica;" /><br style="font-family: Helvetica;" /><span style="font-family: Helvetica;">How will I ever get over the loss of one so dear? I have no idea. </span><br style="font-family: Helvetica;" /><br style="font-family: Helvetica;" /><span style="font-family: Helvetica;">How does this one thing bring such renewed hope in me? I have no idea. </span><br style="font-family: Helvetica;" /><br style="font-family: Helvetica;" /><span style="font-family: Helvetica;">How does one person thank so many for so much? I have an idea! </span><br style="font-family: Helvetica;" /><br style="font-family: Helvetica;" /><span style="font-family: Helvetica;">Thank You.</span><br />
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<span style="font-family: Helvetica;"><span style="font-size: x-small;">A.K. inspired by W.K.</span></span>Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-62302173053953649662015-03-21T17:08:00.002-07:002015-03-21T17:08:25.217-07:00DesperationAs the days passed and things continued to get worse, Weston had so many tests run-MRI (thank you Dr. Licht who so kindly came in on his day off to show us all of the slides of Weston's amazing brain), CT Scans, bedside broncos, more sedation, more episodes, more CPR, more blood work, a line placed in his foot, and a spinal tap. In sheer desperation, we reached out to everyone we knew-every single person that came near Weston got inundated with a million questions about what they thought could be wrong with him. I realize now, I was hysterical. Adam and I were desperate parents looking for an answer. Everyone wants an answer for what is wrong with their baby and an easy fix. Unfortunately, the answers weren't coming easy. The tests all looked ok. Of course, Weston was blazing his own trail. Sundays will never be the same. Although, his Angel-versary is on Monday, Sunday will always be the day when my heart hurts the most. <br />
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Adam and I are so thankful for the outpouring of support for "Feed the Fire". I don't have a total number yet but I am pretty sure we will break 100! That is amazing. Thank you all for feeding your local heroes who took the time to make such a difference in Weston's life and make him feel so special! Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0tag:blogger.com,1999:blog-323296153923515871.post-10364156717713580692015-03-15T19:47:00.002-07:002015-03-15T19:47:30.447-07:00The day it all changedI will never forget us coming in for the day and I knew you didn't recognize me. You stared in a distant gaze. Your movements were sporadic at best. Your eyes longed for you dad and me but we couldn't figure out how to help you. You just kept starting. I think you were starting to say goodbye. God knew we would need that comfort. We needed just a little more time. In hindsight, this is the day that we lost touch. I hope and pray that you went to Heaven that day awaiting a land of milk and honey-or hot cheetos, sour candies, and your best buddy Meg. This is the day, I feel that you began your journey to Heaven and God was giving us sweet time to say goodbye. You woke up and said Mama and a few other words before a fever of 105 came. You were so restless that you ripped out your picc line. We had to strap our hands down because you were so feisty. I am so thankful that you had your favorite nurses to care for you during this time. We stayed in the sleep room and Meg would update me. I would come check on you, on the cooling blanket. You seemed so cold and yet so hot. It wasn't fair. You had fought and fought. You were the Little Prince. Somehow, I heard a small voice say this was the start of the end but I couldn't believe it. That was unacceptable. Juliehttp://www.blogger.com/profile/06094541427822856959noreply@blogger.com0