tag:blogger.com,1999:blog-35749434336698501772024-03-13T11:49:04.732-05:00JOURNEY TO USJOURNEY TO USHeatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.comBlogger874125tag:blogger.com,1999:blog-3574943433669850177.post-91122269448822909852015-03-27T12:08:00.001-05:002015-03-27T12:08:07.487-05:00Flickers of LightI haven't blogged in months. For quite a bit of that time I was in a pretty deep funk. The holidays were hard, really hard. The longer it's been since losing Eli the harder it seems to be. I really sank into a pretty dark hole, and the world had moved on and didn't really seem to notice.<br />
I tried my hardest to engulf myself in life and did a pretty good job of faking it when I needed to be out and interacting in public. <br />
I finally made the decision that I needed to go back to work. I started casually looking for a job. Way tougher than I expected to find something to still allow me to be a wife and mother, and since I have been out of the work force so long. <br />
I applied for a position, was called that afternoon, interviewed 2 days later, and started 3 days after that. It couldn't have been quicker, or a better fit for me. My job allows me to use my medical knowledge, experience, and empathy that I have for those in extreme medical situations. The hours aren't perfect, but they work. I enjoy it. I enjoy feeling like I am doing something. It's a glimpse of who I am outside of my husband, my kids, and especially my role these last years of an extension of Eli. It's definitely been an adjustment for our family with me back at work full time, but everyone seems to be settling into a routine; with minor life adjustments of course.<br />
The kids are SOOOO busy and growing and thriving. <br />
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Ariana ~ Ari celebrated her 8th birthday in Feb and is wrapping up 2nd grade already. I can NOT believe how big she's getting. She is still a Daddy's girl and a Grandpa's girl through and through. They are incredibly protective of her, with her being the baby and all, and neither of them is ready for her to keep growing so fast. She is growing into such a strong independent little woman. She is rough and tough and as brave as could be, yet still maintains her princess side. It's so much fun to watch that balance. She lives to be outside with her bike and friends, and never wants to come in for the night. She's still our social butterfly and knows every child on our block. She's doing amazing in school, as always. It's such a breeze for her. <br />
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Benjamin ~ Ben is wrapping up 4th grade, and will be 10 (double digits) in June. Next year will be his last year in elementary school. He's going through some big changes right now. He's noticing some feelings and emotions and has really been watching how some friendships form and such. The bullying incident really opened up Ben's eyes to the world around him. He's said some things that show he's noticing and thinking ahead to middle school coming up in another year. He's still a little jokester and loves telling jokes. He's really going through a major tactile stage and that's been a challenge. He wants to touch and pet everyone he comes in contact with. At 9 yrs old we have just begun the toddler stage of exploring physical boundaries and such. It's tougher though when hitting this stage at his age. He's as obsessed as ever with his electronics and has learned the art of hacking. That's been fun...haha NOT. He's been spending quite a bit of time outdoors as well and has made a few friends in the neighborhood. He's doing ok in school, it really just depends on the day. He still working a lot on his typer, although doing more writing than ever before. The switch to constant 1 on 1 support at school was the best decision we could have ever made.<br />
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Jace ~ Jace is wrapping up 6th grade (his 1st yr in middle school) and will be 12 in August. He is situating better in school. The para supports and SPED classes have made a big change on his academics. He's still playing the clarinet in band, although his love is choir. He has been invited into the 7th grade choir for next yr and is excited about that. He spends as much time as he can outdoors as well. It's been a tougher situation since the bullying incident in December, as that has definitely changed his relationship with some of the neighborhood kids. He LOVES nerf guns and has been earning money so he can grow his collection. He spent quite a bit of time shoveling driveways over the winter months.<br />
An update on the bullying situation : Our next court date is April 6th. The Protection Order has really helped at home and school. The police have not had to be called out since. After the stalking incident at school, they also made big changes and of course have copies of the protection order. It seems to have made a big change for Emily and Jace. We are anxious to see what happens next at court, and as always will update on the Project Jace page on FB.<br />
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Emily ~ Emily is wrapping up 8th grade (GRADUATING from middle school, HOLY YIKES) and is 14 yrs old. I don't even know where to begin with Emily. Let's see. She just finished this season of Wichita Youth Symphony and will be audition to move up to the next Orchestra for the next season. They had an amazing season and she of coursed love every minute of it. Both concerts were amazing. She continues to play in the church orchestra every Sunday and enjoys it. It also gives her great stage practice as well. She of course plays in the school orchestra as well. She has Pioneer League singles competition coming up as well as Pioneer League Orchestra state competition. She will be playing a solo in the state competition. She just finished her school talent show, playing her competition piece for practice. This Sunday she is visiting nursing homes for a recital, again for practice. She has a school event at a state college here in Kansas, with classes and an Orchestra concert coming up next month as well. She continues to attend private lessons 2 times a week for 3-4 hrs a week. She is also in choir and loves it. Last year at singles competition the colleges began speaking to her asking her where she was thinking of attending. She has really spend this last year wrapping her head around what she wants and where she wants to go. She has made the decision to leave Kansas to attend college to follow her music career. She starts high school next year officially but will be taking classes over the summer starting this summer (and every yr there after for high school) so that she can be fully enrolled in Orchestra and Choir year round. She is taking careers this semester and they plot out her next 6 years...4 of high school and her first 2 yrs of college. She is spending time researching colleges on line and really checking out their music programs. We are constantly in shock and awe that we are really here, that she is really growing so quickly and that these are the life decisions that lay before us. It's surreal. She will learn to drive this summer and is super excited about that as well. At this point she hasn't had another seizure since the one in Dec so they think there should be no problem with her driving come her 6 month point. She's a Daddy's girl as well, and he is a bit freaked out by how quickly high school and college are approaching. My dad is in denial that high school begins next yr. LOL. Emily's life revolves around music, but she's found some time to carve out for sleepovers, friends and biking. She's been taking a weight lifting class at school this year and has definitely found a passion in the weight room.<br />
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Bob and I ~ Busy as always. Heck just keeping up with the 4 kids keeps us running. We just celebrated 7 yrs on Mar 25th. We can't believe how much time is passing and how quickly it's going. We don't even want to think about 7 yrs from now. Our kids will be so big and we aren't ready.<br />
January brought my 2 yr Neurosurgery anniversary. I went through a whole ton of testing at the end of last year. It brought about a lot of answers and multiple questions. That testing did confirm that the memory and fine motor issues are permanent and there will be no reversing them. In Feb I did take myself off all of my meds and it was the best decision we could have made. I have regained some feeling and it seems that some of the nerve issues were brought on by the meds. We are thankful for that. No matter what we have all just had to learn that we must accept present level and be happy with it. Most of the time we laugh about the "quirks" and compensate when needed.<br />
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April 28th is fast approaching. 2 yrs since we lost our beautiful little boy. Everyone has taken the day off and we will spend the day honoring Eli. The kids have already been planning our 2 mile run that day and are looking forward to start gazing on the hill and again finding Eli's star. I can't believe that we are almost at 2 yrs. My heart aches. <br />
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We are taking our first big family vacation this summer, all 8 of us. We are leaving on Memorial Day. We are heading to Branson for 5 days. The kids are beyond excited and the more they google the more excited they become. Ariana keeps dancing around the house yelling that we are going on vacation. We have never taken a multi-generational family vacation. My parents and I vacationed on Table Rock Lake and Silver Dollar City many times as I was growing up. This makes it even more exciting to get to take the kids there. <br />
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So many others things are happening and going on in our lives but it's simply to much to type it all up. To much time has passed since I blogged last. Many of you follow us on FB so you are more up-to-date on day to day life.<br />
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I will do my best at keeping things better updated. It's just been a long dark road to get to where I am at right now and writing wasn't something I was able to do there for quite some time. I'm not for one moment claiming to be out of the darkness, I think after child loss it's simply not possible, but there are flickers of light.<br />
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We are feeling some contentment in life.<br />
<br />Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0tag:blogger.com,1999:blog-3574943433669850177.post-77612812131155365712014-11-11T11:27:00.001-06:002014-11-11T11:27:37.797-06:00Cold and Warm @ TargetYesterday was 3 weeks until Eli's 5th birthday, yet we only got to celebrate 3 with him in our arms.<br />
Today it's all of a sudden turned cold. The leaves are falling off the tree. There is talk of snow. <br />
Winter is right around the corner. Eli loved the cold. It was his time of year. <br />
Thanksgiving. Eli's birthday. Christmas.<br />
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I've been really struggling the last few days. Hating the world. Hating how cold and cruel and how quickly life can change.<br />
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Today at Target the cashier and I were laughing about how cold it was and how we were trying to stay warm. All of a sudden Eli flashed through my mind. I smiled at the thought of us all bundled up staying warm and Eli spending winter in his shorts and tshirts happy as could be. <br />
I finished paying and walked over to Starbucks and bought the young cold casher a gift card. I wrote a little lighthearted note about staying warm and enjoying a few hot chocolates on breaks.<br />
Flipping the envelope over I wrote "Pay It Forward. Eli's Journey". I walked over, waited until she was done with her line of customers, set it down for her and walked out of the store with a smile on my face and my heart little bursting with warmth. <br />
Tears poured down my face the entire drive home.<br />
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As I walked out of the store I could FEEL Eli. He was there with me. There was NO doubt in my mind.<br />
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These last few months I have gotten away from doing these little acts of kindness for Eli. I have fallen a bit into daily life, just trying to get through each day. I have also felt like I haven't FELT Eli and that has terrified me, like I was losing him, like little pieces of him were slipping from my memory. <br />
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This simple interaction at Target, the smile of the young cashier, the joking about the cold, the thoughts of the warm hot chocolate, the gift card, the cold. I NEEDED this. I needed it to bring me back to where I needed to be. Eli gave me what I needed and I felt my baby again. This is where I need to be and this is what I need to be doing. This is what my holiday season will be. Eli and I will embrace the cold and bring smiles and warmth to the least expecting.Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0tag:blogger.com,1999:blog-3574943433669850177.post-45001553813674813742014-10-06T12:16:00.000-05:002014-10-06T12:16:54.914-05:00Back of the PackI'm a back of the pack runner, way back. I feel like us back of the packers are forgotten. <br />
We reach the finish line and the only ones to cheer us in and congratulate us are the few family and friends who chose to wait. The food and drinks are depleted. The freebies and goodies are all picked over. Most of you have left, never even realizing that some of us are still out there working our way mile by mile to the finish line.<br />
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I want to paint you a picture of just who this back of the packer is.<br />
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15 knee surgeries. 20 female surgeries. 4 miscellaneous surgeries. Brain surgery (Jan 2013). Chiari Malformation. Metabolic Disorder. Suspected Mitochondrial Disease. Yep you also guessed it, I'm "that" fat girl.<br />
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Wife. Mother of 5. 3 special needs children. I held my 3 1/2 yr old son while he took his final breathes in my arms (April 2013). Watched as his coffin was lowered into the ground. I continued living, breathing, moving forward.<br />
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After my son passed away I started walking because I needed something, anything to keep me moving forward; to help me pass the time. At some point I thought maybe I could run to the mailbox or the corner. This slowly progressed. <br />
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I heard about a HM on May 4, 2014. I knew that had to be my first race, ready or not. May 4, 2013 is the day my son was buried, that race would be for Eli.<br />
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It was a brutal race. I wasn't ready. I pulled a muscle in my leg at mile one. I fought for every single mile to the finish line, never stopping, never taking any of the outs offered to me.<br />
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It was a struggle to get back to my training. <br />
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My mottos kept me going. "The cure for pain is in the pain." and "May the pounding of your feet crush the broken pieces into something new."<br />
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I have increased my running distances. I can run miles now without stopping. Slow but steady miles. My pace hasn't increased. My distance is slow to increase. BUT I'm still doing it. <br />
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I am a PERSON, a history, a story, a journey. I have fought for every mile just like the front of the packers, the speedsters.<br />
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When you pass us cheer us on too, smile, wave, and respect us. Don't make snide comments, don't say we don't belong, don't whisper and laugh.<br />
Sometimes be there at the finish line cheering us on, for our hard fought win.<br />
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We are the back of the packers, we are athletes, we are champions, we are RUNNERS!<br />
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<br />Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0tag:blogger.com,1999:blog-3574943433669850177.post-17926248492925934592014-09-15T11:14:00.004-05:002014-09-15T11:14:57.375-05:00Awareness WeekIt's Mitochondrial Disease Awareness week. It's the 2nd time we have had to live through this week with out our little boy.<br />
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It's been a hell of a time these last 2 weeks for our family. <br />
Benjamin ended up hospitalized 2 weeks ago here in Wichita. We were there for 5 days. They ended up dropping and NG and we started tube feeds to boost his nutrition. At that point he was sent to KC where we were inpatient 7 days. They did all of the GI testing virtually possible, expecting to find nothing medically wrong. Surgery was scheduled for Monday to place a Gtube. Then with one biopsy result everything changed. Benjamin's results should probable for <a href="http://apfed.org/drupal/drupal/what_is_eoe" target="_blank">EoE</a> . WOW. All plans changed. Protocol dictates the Ben does an 8 week trial of a medication, although research and the doctors aren't confident that it will make a difference. Ben will be back at the end of the trial to re-do the scopes and biopsies. The possibility still remains that he will have the G placed at that point.<br />
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It was an emotional 7 days. Benjamin was placed in Eli's old room, the zebra room. Looking out his door and across the unit, I could see the PICU room where Eli passed. He had Eli's nurses, docs, etc. The playroom was FULL of toys with Eli's donation stickers and Ben loved to search them all out and smile at Tiny's picture. Ben had some major panic moments, screaming that he couldn't breath and that he would die. It took a lot of time and an amazing team to keep him calm and work through this stay.<br />
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We got home late yesterday and we are working to settle back into normal life for a little while. Whatever that may be.<br />
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So it's Mito week. How do we feel? Broken. Awareness seems strange to us. We are painfully, brutally aware. We have been open and honest during our entire journey, doing everything we can to spread awareness. How do we bring more awareness? I can't answer that. I can't understand how Mito isn't something known by every person walking this world. There are children and adults struggling, fighting, dying EVERY single moment of every single day. There are families crumbling under the weight of Mito; emotionally, mentally, physically, socially, and financially. <br />
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There is NO cure. There are NO treatments. All we can do is manage symptoms the best we can, keep exposure to every day illness to a minimum, balance medications, attempt to maintain quality of life, scream to the heavens and the universe for help, and in those final moments all we can do is scream and cry and beg and plead and bargain with our very own life for theirs. Does that sound like something you want?? I didn't think so. So please please help us. Help us make Mito a word that EVERY ONE knows. Help us raise money, help us find a cure; before it's to late for someone YOU love; don't think this can't happen to you...because it CAN.Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0tag:blogger.com,1999:blog-3574943433669850177.post-63807865344584811892014-08-26T17:43:00.002-05:002014-08-26T17:43:23.639-05:00GoalsGoals. Most of us have them. Sometimes we meet them, sometimes we don't. Sometimes we forget we even set goals days later. <br />
That used to be me. I would be like, hey here's my goal, lets do it. Then I would rock that shit for a few days until life happened and it slipped away until I forgot I had even set the goal. Then when I would remember, if I did at all, I would reset and push the goal date out farther and farther. I would always have a justification for myself of why I got sidetracked and of why it was ok to push the date off farther and farther.<br />
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Finally I said enough. This cycle had to stop. I was simply setting myself up for failure over and over again.<br />
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I joined a monthly mileage group, I started posting every single mile on a document for my online running group to see. I started telling people what my goals were.<br />
I decided what I needed to do to accomplish that goal and I made it manageable, a month at a time. Each month I stair stepped it up a bit from the month before. <br />
I held myself accountable, and the public posting helped others hold me accountable as well.<br />
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I'm not saying setting a goal has made it easy, I'm not saying it's brought perfection. I am saying though that for the first time I'm really truly reaching my fitness goals, sometimes even smashing them.<br />
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This month I won't reach my utmost goal. <br />
July my goal was 75 miles. I reached 98. For August I joined the 80 mile goal group, but set my own personal goal for 100. <br />
My goal was also to continue my running streak. <br />
Today is RSD (run streak day) 60. My streak is alive and thriving. My mileage goal is struggling. I am currently at 75 miles for the month, with only 6 days remaining. <br />
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My fall Sunday has really affected my hip. Today was my doc recheck. My head is still struggling some with lingering dizziness and pain. My hip is the worst. She said there has been trauma too it and it's going to take time to recover. She gave me a pain/anti-inflammatory shot and will be putting me on meds the next 2 wks to help with hip recovery. <br />
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I'm struggling with the feelings of failure for not reaching my goal for August. I KNOW that this isn't an excuse, I know that I didn't just get busy or lazy and put it off. I KNOW that this is beyond my control. I KNOW but it doesn't make it easier for someone who has failed so many times, for someone who knows what it feels like to fall short.<br />
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I will reach 80 miles for August. I will keep my streak alive. I will rock September and my triple digit goal isn't lost, just postponed. <br />
This isn't a failure. This isn't a loss. This is an athlete with an injury and NOTHING will sideline my goals, my dreams, my successes.<br />
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What are your goals? What have you found to hold yourself accountable?Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0tag:blogger.com,1999:blog-3574943433669850177.post-65287912415195693402014-08-25T15:11:00.001-05:002014-08-25T15:11:04.903-05:00The FallI feared it for months after brain surgery. I have avoided activities that presented increased possibilities. I have been careful, sometimes fearful. We have heard the warning and lectures. We have talked to the kids, they know exactly what to do if it ever happened. All of our friends and family know how bad it could be. We have joked and talked about designing helmets. Yet it NEVER happened. <div>
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Until it did. Sunday at 8am I fell. I slipped on the wood floors and fell down the wooden stairs. It wasn't because I wasn't being careful. It wasn't because I was in a hurry. I wasn't participating in any dangerous activity. I wasn't taking risks. It happened in a blink of an eye.</div>
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I mostly remember the fall. I remember my husband come running from the other room. I think I said I don't know if I hit my head. The next thing I remember is my husband over me saying baby you have to open your eyes. Baby come back to me. He told me I had passed out and had a seizure. </div>
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It was a blur. Off to the hospital. I have never felt so awful. I was terrified and didn't feel well at all. </div>
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All of the questions and information being given to the nurses and docs. Immediately rushed through triage, monitors all over me. Questions about living wills and power of attorney. CT scans. On and on. </div>
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Finally the CT was back. No brain bleed. No massive damage. We do see the post operative brain changes, but don't believe there is any new damage. Concussion, bruised/sore elbow and pain down my side and hip. </div>
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Then here it comes. The brain lecture. Being told how I have to be careful, how I have to consider my activities, how I have to protect my brain at all costs. The questions about if a helmet has been discussed and considered. On and on. Then he says it's not that we don't want you to live a full life, but we need to protect your brain.</div>
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Basically we want you to live a full life, but we don't want you to walk from one room to the other because you MIGHT fall. So sit on a padded couch with pillows all around you so we know your brain is safe.</div>
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As I sit here today recovering I can't help but think about it all. </div>
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I don't want to be that person, that patient. I don't want to live in fear of what could happen. I don't want to sit on the sidelines watching life pass me by, because something could happen. Something can always happen. </div>
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I don't want to be seen as that sick person. I don't want to be the medically complex one. I don't want to be treated like a breakable delicate flower, that will crumble if touched. </div>
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That's not me. But to them it is. </div>
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I will forever live a balance of my medical file and ME. </div>
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My husband has been amazing. He has stood by me through 6 surgeries, learning to walk again, countless specialists, numerous new diagnosis', medication trials, pain management, pain unmanaged, daily life with neuro issues, and everything in between.</div>
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I can't imagine the balance it is for him too, the medical me and ME. </div>
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I want to live my life without the medical side following me around, but that's simply not possible. I will continue to live as I have. I will be careful, but not so careful that life passes me by. </div>
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And damnit if I ever need a helmet, that shit is getting decked the hell out, and I know just the person to get it done. :)</div>
Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0tag:blogger.com,1999:blog-3574943433669850177.post-8401475200612655602014-08-20T18:28:00.001-05:002014-08-20T18:28:19.175-05:00MilesLast week I ran 1.55 miles without taking 1 single walk step break.<br />
Saturday I ran 3.1 miles without taking 1 single walk step break.<br />
Last night I ran 5 miles without taking 1 single walk step break.<br />
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My strength amazes me. The things my body is able to do. <br />
18 months ago I was barely able to take a few steps with the walker after brain surgery.<br />
15 months ago I had no desire to take any steps without my baby in my arms. <br />
Now I'm running. I'm running far. I'm running hard. I'm breaking PR's. I'm pushing myself physically, mentally and emotionally.<br />
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I finished my run last night and simply couldn't wrap my head around the fact that I had just run 5 miles. Those miles felt like something I can't even describe. The pride. The accomplishment.<br />
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Not emotions I'm used to having about myself. I have always struggled to love myself, be proud of myself, to love and respect my body. It's been a lifelong challenge. <br />
I'm not saying I have found the answers to self esteem, body image issues. <br />
I will however say that I'm finding MYSELF in these miles. <br />
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The saying my best friend told me all those months ago, "May the pounding of your feet crush the broken pieces into something new" is slowly but surely taking on more and more meanings for me.<br />
I'm crushing my anger, disgust, shame and hatred for my body. I am finding a warrior inside of myself. <br />
My body can do things that it could never do before. Things I was never able to push myself to do. I'm learning to conquer my body and my mind. <br />
No PR, no scale, no pace, no medal shows the changes inside of me.<br />
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I may not always want to run, but I will run. I will conquer the miles, I will conquer the voice inside that says it's to hard, the voice that says I can't do it. I will conquer it, I will win. It won't always be pretty, but it will be ME!<br />
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I'm proud, and for once I'm proud of MYSELF!Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com1tag:blogger.com,1999:blog-3574943433669850177.post-19372502832527492302014-08-19T16:50:00.000-05:002014-08-19T16:50:30.112-05:00HeatShit got real around here these last few days. It's HOT. Summer has officially come to Kansas.<br />
I'm struggling to figure out my hydration and runs. I got it done yesterday but in the heat of the day and it wasn't pretty at all. I ended it short, my pace wasn't what I would have liked, and I was absolutely wiped out when I got home.<br />
This morning I had to be at work early so didn't get it done. Now here I sit at 4:45pm and it's 98 degrees outside with blazing sun and I haven't run. <br />
These are the days I have to dig down deep inside of me and remind myself why I run. <br />
I have no doubt that I will run, that I will log some miles. I also have no doubt that it won't be pretty. These are the hardest days to run, yet the most rewarding. <br />
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Benjamin had a doc appt this morning. All the kids did actually but the biggest talks were about Mr Ben. It's agreed that we need to dig deep to see if there is a medical reason Ben is struggling so much with eating. His talk of pain with food hints even deeper at a problem. She said keep chugging along with Ensure for now, as we obviously need something, but all agree it's really not a whole life solution. She does want to start trying to get some fiber and probiotics into his ensure each day and ideally get him to start taking a multivitamin. His BP was up considerably, which means his meds are working, although his HR was also up quite a bit. He sees his Neurologist next week as well for a follow up. <br />
<br />Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0tag:blogger.com,1999:blog-3574943433669850177.post-26837000071695451722014-08-18T17:10:00.003-05:002014-08-18T17:10:57.606-05:00Simplest MomentsWow. I did it. 11 yrs later I have gone back to work. Today was my very first day. I was so nervous but that settled quickly and I loved it. It was so nice to have something to do and be around people again. I was more ready for a change than I even realized. <br />
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The kids are in their 2nd week of school.<br />
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Emily ~ 8th grade! Her last yr of middle school. WOW. She's busy as ever. School orchestra, school choir, church orchestra, private lessons, Wichita youth symphony, plus all of her classes and a minimum of 1 1/2 hrs of practice time each day. I have no idea how she keeps it all balanced but she does, and she even finds time to watch Teen Wolf, read books, make friendship bracelets and other crafts, and spend HOURS on her cell phone with friends. :)<br />
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Jace ~ 6th grade! His first yr of middle school. Double WOW. He's absolutely loving it. He's in band again this yr, still working away at learning the clarinet. He's figuring out classroom changes, different teachers, lockers, and all the fun things that come with middle school. He's also decided to apply for Stuco. He got a new BMX bike for his birthday so he spends as much free time as possible outside learning tricks, ramping, and many other things. He also has become quite the popular one and spends a ton of time on his phone calling and texting with friends.<br />
<br />
Benjamin ~ 4th grade! My littlest Ben. Not much has changed this year. Benjamin is still on the para bus and still has full para supports every moment he's in school. He is doing some of his own writing this year as well as still working on keyboarding. So far I haven't seen any work come home where his para had to scribe for him! Yesterday Grandpa took the kids out to Freddy's after church and bought Ben his typical cheeseburger. Ben refused to eat anything. When he came home I chatted with him and for the first time ever he said eating makes his tummy to full and it hurts. He has NEVER described pain with eating. We are wondering if that is maybe out missing underlying issue that Ben simply didn't have the words to explain. He's still drinking his ensure most days and that's what is getting us by. He meets with his pediatrician tomorrow so we will see how that goes. Ben is still madly in love with minecraft and that's what he spends his free time on.<br />
<br />
Ariana ~ 2nd grade! She's of course LOVING school. She is my little social butterfly who thrives being around people and friends, and she's so smart that school work is such a breeze for her. Her teacher seems to be a good fit for her and Ari is loving it. She has so many neighborhood friends that she is always playing with the kids and has become quite the expert at riding her 2 wheeled bike. She is quite the balance of girly girly and tom boy. It's fun to watch. <br />
<br />
I'm running still. A lot. Today is runstreak day 52. I'm a little over 55 miles for the month so far. I am so thankful every day that I took that first step out the door. I can no longer imagine my life without running. The people it has brought into my life are amazing. Bob runs with me almost every day as well. We usually run at 5am every day and it's been such a special time for just the 2 of us to encourage each other on our runs and get that time to talk free of any distractions. We love it!<br />
<br />
I'm sure there is so much more I could/should write about but right now this is enough. This is us, in our simplest moments.Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0tag:blogger.com,1999:blog-3574943433669850177.post-90309696686289854182014-08-13T14:44:00.000-05:002014-08-13T14:47:27.983-05:00InspirationIt's here. Today's the day. They are all 4 gone to school. I did pretty decent today.<br />
<br />
I have received many messages this week telling me how amazing I am, how much I inspire them, how I make them a better parent, how strong I am.<br />
<br />
These messages used to frustrate the heck out of me. I could never figure out how to get the true nature of things across. I wanted to scream from the rooftops how weak I truly was. I didn't want to be looked up too. There was so many days I was lucky to move from the couch to get a drink, let alone actually accomplish anything. We had sandwiches for dinner. My house was a mess.<br />
<br />
I did NOT have my life together. It wasn't smooth sailing. I was in no condition to be looked up too, I wasn't a example of the "proper way to navigate grief". I was failing. <br />
<br />
Lately I feel a bit stronger....sometimes. I'm not there though. I'm not doing this right...is there a right way? I don't have it all together.<br />
<br />
I run. I run every single day. I ran 98 miles in July. I have run every single day for 47 days straight. I have gotten together with friends. I have cleaned house. I have gone out with my husband. I have cooked. I have played with the kids. I have learned a new hobby, pottery. I have formed relationships. I have ended relationships that were hurting me and pulling me down.<br />
I have worked my butt off as a volunteer in an AMAZO organization called, IR4, Inc. I have helped launch a new group inside IR4, called IR4 Siblings : The Unsung Heroes. <br />
<br />
I have also laid on the couch in pj's watching so much TV I can't even absorb what I have seen. I have served sandwiches for dinner. I have let my house go at times, not cleaning at all for days. I have cancelled with friends. I have run the minimal 1 mile at 9pm at night because I couldn't bring myself to do it earlier in the day. I have avoided phone calls and paperwork. I have fought to get up out of bed in the morning, simply wanting to sleep life away. I have yelled, cussed, screamed, cried, and beat pillows in anger, frustration and pain. <br />
<br />
It's not been pretty. It's not been easy. It has taken EVERY ounce of myself to get through each day. I have NO idea how I have made it 67 weeks, 3 days, 10 hrs. It's messy, it's dirty, it's HARD; and I can't tell you at this point how I'm going to make it each and every day and week and month and year to come. I can no longer look and plan that far ahead. <br />
My family, my friends, my home, and my health have all suffered at times. At times life has been full, painfully full. The smiles and laughter have filled our home, sometimes seconds later swapped with tears that shake the body to it's very core.<br />
<br />
What I can say at this point, is somehow, someway; I'm surviving...we are surviving.<br />
It's not pretty, it's probably not the right way, it's probably not the wrong way<br />
<br />
I'm proud that we are inspiring people. I don't know why. I tried to figure it out. I tried to see what helped people in their daily lives. I gave up. It doesn't matter. It simply doesn't. <br />
If our story, if our struggle, our triumph, our tears, our pain, our laughter, our journey can inspire others than we won't stop; we are Eli's voice, we are living for two.<br />
Eli lives on in our family, in our life, in our story; and if our story inspires you then Eli is living on in your lives too. <br />
Eli is our strength, Eli is the reason we get through each day. <br />
<br />
Blessings.<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxD6lUiIMYRG7rb0-xHs78kRSp-Kb5QQC2eV5BEcejJPrFrbDNlNjMK7o_jpuesVLqXpgsmTvLVKd-XaOBvyTleZHcnCuE9TUfTq5pPl22lNqRoOssnkQolhXzwgQ7Veb522cEKSNDxgc/s1600/image+(1).jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxD6lUiIMYRG7rb0-xHs78kRSp-Kb5QQC2eV5BEcejJPrFrbDNlNjMK7o_jpuesVLqXpgsmTvLVKd-XaOBvyTleZHcnCuE9TUfTq5pPl22lNqRoOssnkQolhXzwgQ7Veb522cEKSNDxgc/s1600/image+(1).jpeg" height="320" width="320" /></a></div>
<br />Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0tag:blogger.com,1999:blog-3574943433669850177.post-31769674129377454612014-08-11T15:42:00.003-05:002014-08-11T15:42:56.313-05:00SilenceWe are here again. The kids start school tomorrow. <div>
I'm torn. I have the mommy excitement of some quiet time, some time to clean house without having them come along 2 steps behind, the pride of them starting another year in school, the accomplishment. </div>
<div>
But I also have the flip side. Tomorrow begins another cycle of me here, home alone, wondering what I'm supposed to do. What my purpose is. </div>
<div>
My children are all 2 yrs apart in school. I have always had a child home with me for 13 1/2 yrs. Then Eli was born and my life was overflowing with activity. I ALWAYS had something that had to be done, he was my constant shadow. Then Eli passed away and summer came immediately after. The kids kept me busy, kept my mind focused somewhere else.</div>
<div>
Here I find us again, at another school year, another new start without my baby.</div>
<div>
<br /></div>
<div>
The house will be still. Quiet. Too quiet. It's not a good kind of quiet. It's the quiet that settles deep in my soul, the quiet that takes my breath away. The quiet that makes my mind fly back to those days. Back to what's missing. </div>
<div>
<br /></div>
<div>
I have no idea if there will ever come a day, that being alone won't hurt. That it won't cause an emptiness and a pain deep inside of me. Where the silence won't be deafening.</div>
Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0tag:blogger.com,1999:blog-3574943433669850177.post-34809136106638797812014-07-09T18:15:00.001-05:002014-07-09T18:15:09.331-05:00Long Time No BlogI have been quiet for quite some time. <div>
It's all just been to much. To much to type. To much to think through. To much to sort out. So many feelings constantly swirling around.</div>
<div>
<br /></div>
<div>
What all has gone on?</div>
<div>
1 yr since we lost Eli</div>
<div>
6 baby kittens being born on my lap</div>
<div>
1 yr since we buried Eli</div>
<div>
Our very 1st 1/2 marathon</div>
<div>
Multiple 5K's</div>
<div>
Emily's school team winning Kansas History Day</div>
<div>
Emily's team travelling to National History Day</div>
<div>
9 days of competition, travel, and vacation in Maryland, Virginia, DC, and Delaware</div>
<div>
Meeting one of the very first Mito families I ever spoke to</div>
<div>
Tons of eating issues for Ben resulting in ensure scripts and feeding therapy referrals</div>
<div>
The end of 1st grade, 3rd grade, 5th grade (elementary school graduation) and 7th grade</div>
<div>
<br /></div>
<div>
I'm sure there is a ton more I'm forgetting but you get the idea. It's been a LOT!</div>
<div>
Big things. Emotional things. Heart breaking things. Amazing things.</div>
<div>
It's just been to much. </div>
<div>
<br /></div>
<div>
I've done everything I can to just make it to the end of each and every day. I try not to think to much about the day, or the events, or any of it. It's sometimes just to much. </div>
<div>
Numbness left and I have had to force a zombie like state so often. Find and force my own numb. It's just "easier" that way.</div>
<div>
<br /></div>
<div>
I'm ready to get back to blogging. I think. </div>
<div>
I know how much my blog has helped others, how much it's helped me. I'm not giving up. I just needed a break. I needed time. I needed space.</div>
<div>
<br /></div>
<div>
More soon. Promise.</div>
<div>
<br /></div>
<div>
<br /></div>
Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0tag:blogger.com,1999:blog-3574943433669850177.post-56961378147669372572014-04-25T08:14:00.001-05:002014-04-25T08:15:43.823-05:00Eli's Final JourneyI have gone round and round in my mind if I'm going to share this video publicly or not. <br />
Some of my closest medical mommas have seen it but that's all. <br />
I have held onto it for almost 1 yr, as this video was made a week or two after Eli's funeral.<br />
I have decided now, on this day, 1 yr after my son was wheeled into his final surgery, to share.<br />
Why? Because first of all it's beautiful, it's my baby. It's our journey. Nothing can show more about what we went thru than this video.<br />
This is my tiny man's final journey. This was our family's journey. This was our life. <br />
This isn't a made for lifetime movie. This isn't some distant family in the media. This is us. This is our life. We felt this, we lived this, we asked the questions, we made the decisions, we held him while he died, we washed his lifeless body, we walked out of the hospital pushing his empty wheelchair. This is us, raw and unedited. <br />
<br />
This video starts with a video made 2 wks before, goes thru his surgery, going home, the ER, the PICU, Eli's death, and selecting his plot. <br />
There is a separate video for the funeral and burial that I will share in a few days. <br />
<br />
Again this video is raw and unedited. Do NOT watch it if you are not able to handle that. <br />
<br />
Here is the blog post with written details of that night for those who need the written info. <a href="http://ejbamommy.blogspot.com/2013/05/what-happened.html" target="_blank">"What Happened"</a><br />
<br />
<div>
<embed flashvars="&p=1235fc6c477beef43fda32c&skin_id=601&host=http://www.onetruemedia.com" height="526" name="FLVPlayer" pluginspage="http://www.macromedia.com/go/getflashplayer" quality="high" salign="LT" scale="noscale" src="http://www.onetruemedia.com/share_view_player?p=1235fc6c477beef43fda32c" type="application/x-shockwave-flash" width="600" wmode="transparent"></embed><br />
<div style="font: 12px/13px verdana,arial,sans-serif; line-height: 20px; margin: 0px; padding-bottom: 15px; text-align: center; width: 600px;">
<a href="http://www.onetruemedia.com/landing?&utm_source=emplay&utm_medium=txt5" style="text-decoration: none;" target="_blank">Make a video - it's fun, easy and free!<br /><span style="text-decoration: underline;">www.onetruemedia.com</span></a></div>
</div>
Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com2tag:blogger.com,1999:blog-3574943433669850177.post-51240767987887389792014-04-18T08:52:00.003-05:002014-04-18T08:52:30.045-05:00Tick Tock Tick Tock1 week<br />
2 days<br />
19 hours<br />
16 minutes<br />
2 seconds<br />
<br />
I can barely breath.Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0tag:blogger.com,1999:blog-3574943433669850177.post-76659493047515607162014-04-14T08:19:00.001-05:002014-04-14T15:16:49.707-05:00Just love us, pleaseMy heart is aching. My soul is screaming in pain and agony. <br />
The feelings are starting to fold in on me. I feel bound and weighted.<br />
Suffocatingly the clock is ticking, so fast. <br />
<br />
My birthday is 1 week from today. My last birthday was the first time I left my little man for the weekend. He was so happy, so healthy, so strong. I spent the weekend away, forever losing my last weekend with my son. A time I can NEVER get back. I never spent another weekend with my family, whole and together. Never again another happy Saturday morning waking up with Bob, spending that slow morning getting Eli ready for the day. Never another quiet Sunday morning, just Eli and I while everyone was gone. NEVER. Those moments are forever gone, never to be had again. <br />
<br />
The guilt I feel for missing that last weekend. The pain. Never did I know that I would lose my son 1 week after my birthday. 1 week. The thought of acknowledging my birthday, let alone celebrating it feels torturous, painful. The guilt overwhelms me. How can I celebrate the fact that I left, I missed that weekend? I can't. Maybe some day but right now the emotions are running SOO high and I can't do it. <br />
<br />
2 weeks from today is Eli's 1 yr angelversary. I can't. I simply can't. The pain is building, like I would have never thought possible.<br />
<br />
3 weeks from yesterday is 1 yr since we buried our beautiful tiny man. 3 weeks from yesterday Bob and I will be running our 1st 1/2 marathon. We will be crossing the finish line at almost the exact moment our Son's coffin was lowered into the ground.<br />
<br />
Right now I simply can't find words to convey how I'm feeling.<br />
<br />
What I can say is please be gentle with us. Please give us some leeway. Contact us. Talk about him. Share stories and pictures. Keep his name and memory alive. Come over and sit with us. Cry with us. Please don't push us though. We have to do what we NEED to make it thru these next few wks and the lifetime before us.<br />
<br />
Please don't tell us that we are "doing this the wrong way", for there is no right or wrong way. We are doing this the only way we know how, one breathe at a time. Just love us, just love our tiny man.<br />
<br />
Always and forever tiny man.Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com1tag:blogger.com,1999:blog-3574943433669850177.post-59680345218177912332014-04-05T19:13:00.001-05:002014-04-05T19:13:11.531-05:00Poetry<div style="text-align: center;">
<u><b>This Horrible Yet Wonderful Grief - Rewrite</b></u></div>
<div style="text-align: center;">
<u><b>by Emily Moore</b></u></div>
<div style="text-align: center;">
This grief this horrible yet wonderful grief</div>
<div style="text-align: center;">
it will crush your heart</div>
<div style="text-align: center;">
and change your life</div>
<div style="text-align: center;">
it will motivate you</div>
<div style="text-align: center;">
but it will drag you down</div>
<div style="text-align: center;">
just keep going</div>
<div style="text-align: center;">
they are angels watching over us</div>
<div style="text-align: center;">
guardians of the night</div>
<div style="text-align: center;">
keeping away fright</div>
<div style="text-align: center;">
it comes and goes just like day and night</div>
<div style="text-align: center;">
up and down like roller coasters</div>
<div style="text-align: center;">
but will never grind to a halt</div>
<div style="text-align: center;">
still thinking it's my fault.</div>
<div style="text-align: center;">
The time flies by</div>
<div style="text-align: center;">
as I see the sky</div>
<div style="text-align: center;">
the sadness engulfs me</div>
<div style="text-align: center;">
the hidden tears now run free</div>
<div style="text-align: center;">
all the what ifs</div>
<div style="text-align: center;">
all my thoughts saddened</div>
<div style="text-align: center;">
my heart becomes distraught</div>
<div style="text-align: center;">
my mind overwhelmed</div>
<div style="text-align: center;">
my heart unbound</div>
<div style="text-align: center;">
as I remember</div>
<div style="text-align: center;">
the December day you were born</div>
<div style="text-align: center;">
I also remember that frightful night</div>
<div style="text-align: center;">
when your light was burned out</div>
<div style="text-align: center;">
the air fills with heart breaking screams</div>
<div style="text-align: center;">
wishing it was a dream</div>
<div style="text-align: center;">
on that night</div>
<div style="text-align: center;">
i watched you battle</div>
<div style="text-align: center;">
you lost the fight</div>
<div style="text-align: center;">
i watched 4 children</div>
<div style="text-align: center;">
one by one</div>
<div style="text-align: center;">
their dreams crushed</div>
<div style="text-align: center;">
their lives changed</div>
<div style="text-align: center;">
their hope lost</div>
<div style="text-align: center;">
their confusion</div>
<div style="text-align: center;">
their misunderstanding </div>
<div style="text-align: center;">
mom crouched over calling for her baby</div>
<div style="text-align: center;">
dad saying save him, save my son</div>
<div style="text-align: center;">
doctors running</div>
<div style="text-align: center;">
On that fearful night</div>
<div style="text-align: center;">
that tragic night</div>
<div style="text-align: center;">
I learned a lesson</div>
<div style="text-align: center;">
between </div>
<div style="text-align: center;">
life </div>
<div style="text-align: center;">
and death</div>
<div style="text-align: center;">
I learned most of all</div>
<div style="text-align: center;">
how fast your life can be changed</div>
<div style="text-align: center;">
how quickly things can be rearranged</div>
<div style="text-align: center;">
this horrible and wonderful grief</div>
<div style="text-align: center;">
made me sad makes me mad</div>
<div style="text-align: center;">
but also taught me lessons</div>
<div style="text-align: center;">
brings old memories fresh to mind</div>
<div style="text-align: center;">
making the time fly by</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<b><u>Fear</u></b></div>
<div style="text-align: center;">
<b><u>by Emily Moore</u></b></div>
<div style="text-align: center;">
What will I do</div>
<div style="text-align: center;">
How will I carry on</div>
<div style="text-align: center;">
I have to face it, you're gone</div>
<div style="text-align: center;">
almost 12 months have flown by</div>
<div style="text-align: center;">
like birds in the sky</div>
<div style="text-align: center;">
Still I remember when I grasped your hand</div>
<div style="text-align: center;">
I fear for what will happen</div>
<div style="text-align: center;">
When it reaches a year</div>
<div style="text-align: center;">
Can't shake this feeling</div>
<div style="text-align: center;">
of sadness anger and fear</div>
<div style="text-align: center;">
I have had this feeling all year</div>
<div style="text-align: center;">
A year without your smile</div>
<div style="text-align: center;">
your face, your laugh</div>
<div style="text-align: center;">
your heart used to beat all so precious and perfect</div>
<div style="text-align: center;">
your little art you left in the rooms all now empty and bare</div>
<div style="text-align: center;">
Your smile still fresh in my mind</div>
<div style="text-align: center;">
I can no longer see</div>
<div style="text-align: center;">
Your laugh so heart-pulling</div>
<div style="text-align: center;">
Is no longer ringing</div>
<div style="text-align: center;">
I hear nothing, nor see a thing</div>
<div style="text-align: center;">
I see colors of your youth</div>
<div style="text-align: center;">
very tiny, only three</div>
<div style="text-align: center;">
I see and feel you near</div>
<div style="text-align: center;">
When I stand here</div>
<div style="text-align: center;">
The wind blowing through my hair</div>
<div style="text-align: center;">
The butterflies in the sky</div>
<div style="text-align: center;">
But now I'm left here wondering</div>
<div style="text-align: center;">
How I'm supposed to keep going</div>
<div style="text-align: center;">
To live laugh and carry on</div>
<div style="text-align: center;">
When the simple fact is you're gone.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<b><u>Memories</u></b></div>
<div style="text-align: center;">
<b><u>by Emily Moore</u></b></div>
<div style="text-align: center;">
Seems like it just happened yesterday</div>
<div style="text-align: center;">
we were laughing and playing</div>
<div style="text-align: center;">
saying I love you tiny man</div>
<div style="text-align: center;">
you would laugh till you fell over</div>
<div style="text-align: center;">
your little snort and cough</div>
<div style="text-align: center;">
you lit up any room</div>
<div style="text-align: center;">
consuming in books making us sign them</div>
<div style="text-align: center;">
your toys covered every corner</div>
<div style="text-align: center;">
your glasses down on the end of your nose</div>
<div style="text-align: center;">
your cheeks like roses</div>
<div style="text-align: center;">
your smile so bright</div>
<div style="text-align: center;">
sleeping so soundly at night</div>
<div style="text-align: center;">
clicking sounds when you cuddle</div>
<div style="text-align: center;">
made my heart melt like ice to a puddle</div>
<div style="text-align: center;">
your clapping at the worse times</div>
<div style="text-align: center;">
signing reading you all your books and rhymes</div>
<div style="text-align: center;">
your little waddle when you walked</div>
<div style="text-align: center;">
oh so cute and perfect</div>
<div style="text-align: center;">
the way you talked and signed hi</div>
<div style="text-align: center;">
never wanting to say bye</div>
<div style="text-align: center;">
your little sign language</div>
<div style="text-align: center;">
demanding everything you signed </div>
<div style="text-align: center;">
your hands and feet so tiny</div>
<div style="text-align: center;">
you were sometimes so whiny</div>
<div style="text-align: center;">
seems like forever</div>
<div style="text-align: center;">
since I've seen you so clear</div>
<div style="text-align: center;">
thinking of butterflies</div>
<div style="text-align: center;">
and hearing cries of happiness and sadness</div>
<div style="text-align: center;">
remembering those days</div>
<div style="text-align: center;">
those beautiful wonderful times</div>
<div style="text-align: center;">
feels like it's been years</div>
<div style="text-align: center;">
but in reality it's been almost a year</div>
<div style="text-align: center;">
I will always have memories of those 3 years</div>
<div style="text-align: center;">
always will be clear</div>
<div style="text-align: center;">
as my tears will fall</div>
<div style="text-align: center;">
as I hear you call</div>
<div style="text-align: center;">
hi for the last time</div>
<div style="text-align: center;">
remembering the good and bad times</div>
<div style="text-align: center;">
never will they be forgotten.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<b><u>Stories</u></b></div>
<div style="text-align: center;">
<b><u>By Emily Moore</u></b></div>
<div style="text-align: center;">
<b>written following her friend's suicide</b></div>
<div style="text-align: center;">
Everyone has stories</div>
<div style="text-align: center;">
good and bad</div>
<div style="text-align: center;">
they can happy or sad</div>
<div style="text-align: center;">
also scared or angry</div>
<div style="text-align: center;">
it depends on the person</div>
<div style="text-align: center;">
they can have memories</div>
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fun or boring memories</div>
<div style="text-align: center;">
stories can end quickly like death</div>
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or can be long like life</div>
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stories can have first loves</div>
<div style="text-align: center;">
and heartaches</div>
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they can have old and new beginnings</div>
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they can have color</div>
<div style="text-align: center;">
black or white</div>
<div style="text-align: center;">
emotion or emptiness</div>
<div style="text-align: center;">
everyone has stories</div>
<div style="text-align: center;">
they can inspire or can be powerful</div>
<div style="text-align: center;">
but stories are words</div>
<div style="text-align: center;">
and words make big differences</div>
<div style="text-align: center;">
so before you end your story</div>
<div style="text-align: center;">
just think about other people's stories</div>
<div style="text-align: center;">
stories that are similar to yours</div>
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stories that have endings and beginnings</div>
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so before you do anything you regret,</div>
<div style="text-align: center;">
what's in your story?</div>
<div style="text-align: center;">
<br /></div>
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<br /></div>
Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0tag:blogger.com,1999:blog-3574943433669850177.post-68332025436452380792014-04-02T14:35:00.001-05:002014-04-02T14:35:07.918-05:00No WordsEmily jumped in the car today and told me that there is a Poetry contest at school and she's entering. Then she started to read. Gosh darned the girl because I was attempting to drive.<br />
<br />
<div style="text-align: center;">
"This Horrible Yet Wonderful Grief"</div>
<div style="text-align: center;">
by Emily Moore, age 13</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
There is a grief that ages the face</div>
<div style="text-align: center;">
and hardens the heart</div>
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and softens the spirit</div>
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A grief that casts shadows on the eyes</div>
<div style="text-align: center;">
yet broadens the mind</div>
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A grief that keeps the pain and has no words</div>
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but increases the understanding</div>
<div style="text-align: center;">
There is a grief that breaks the heart and wounds the soul</div>
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that lasts and lasts and can shatter in a minute</div>
<div style="text-align: center;">
but will inspire for a lifetime</div>
<div style="text-align: center;">
It comes and goes just like day and night</div>
<div style="text-align: center;">
up and down like roller coasters</div>
<div style="text-align: center;">
but will never grind to a halt</div>
<div style="text-align: center;">
still thinking it's my fault.</div>
<div style="text-align: center;">
The time flies by</div>
<div style="text-align: center;">
as I look up into the sky</div>
<div style="text-align: center;">
The sadness overwhelms me</div>
<div style="text-align: center;">
as the bottled up tears run free</div>
<div style="text-align: center;">
all the what if's</div>
<div style="text-align: center;">
are thoughts as</div>
<div style="text-align: center;">
my heart is distraught</div>
<div style="text-align: center;">
my mind overwhelmed</div>
<div style="text-align: center;">
my heart unbound</div>
<div style="text-align: center;">
as I remember</div>
<div style="text-align: center;">
the December you were born</div>
<div style="text-align: center;">
I also remember that frightful night</div>
<div style="text-align: center;">
when your light burned out</div>
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I then put out a heart breaking scream</div>
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wishing it was a dream.</div>
<div style="text-align: center;">
On that night</div>
<div style="text-align: center;">
you lost the fight</div>
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I watched four children</div>
<div style="text-align: center;">
one by one</div>
<div style="text-align: center;">
their dreams crushed</div>
<div style="text-align: center;">
their lives changed</div>
<div style="text-align: center;">
their hope lost</div>
<div style="text-align: center;">
their confusion</div>
<div style="text-align: center;">
their misunderstanding.</div>
<div style="text-align: center;">
On that fearful night</div>
<div style="text-align: center;">
that tragic night</div>
<div style="text-align: center;">
I learned a lesson</div>
<div style="text-align: center;">
between</div>
<div style="text-align: center;">
life</div>
<div style="text-align: center;">
and death</div>
<div style="text-align: center;">
and I learned most of all</div>
<div style="text-align: center;">
how quickly your life can be changed</div>
<div style="text-align: center;">
how quickly things can be rearranged</div>
<div style="text-align: center;">
I learned and am still learning...</div>
Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com2tag:blogger.com,1999:blog-3574943433669850177.post-356305220262278242014-03-28T14:17:00.001-05:002014-03-28T14:17:51.861-05:0011 Months TODAYI haven't blogged for quite a while.<br />
Why?<br />
<br />
It's quite simple. My heart is shattered. I am finding right now that it's getting worse by the day. Today is 11 months. I am back to waking at 4am. Many a night the silence is deafening. <br />
<br />
I am training so hard for the 1/2 marathon. I can't believe I'm doing this. I can't believe I'm doing this on May 4, 2014. I can't believe that on May 4, 2103 I crumbled as I watched my baby's casket being lowered into the ground. I will cross the finish line at almost the exact same time his casket was lowered. I can't believe that this is only 6 weeks away.<br />
<br />
Today I was contacted by a friend of mine. A good friend of hers is facing a Mito diagnosis for their 9 month old baby. She was terrified as she had followed Eli's story, our journey. I wanted to tell her it will be ok. I wanted to tell her that Eli was such a unique case and that for most kiddos it will be fine. I wanted to tell her that there are tons of resources and meds and cures and doctors. I wanted to tell her all these things. But how do you make a NEURODEGENERATIVE PROGRESSIVE ultimately TERMINAL disorder sound sweet and nice and ok? It's NOT ok. I am well aware that everyone is different, that the disease is different for each person, and that everyone's journey is different. Sadly that doesn't change Mito, that doesn't stop Mito. <br />
<br />
Mito doesn't just affect the patient. It changes the family, the nurses, the doctors, the community that loves them. Mito shatters lives, its shatters families, it shatters community. <br />
<br />
Where will their journey take them? I can't predict that for sure. I can guess. From our journey, from our friends journeys. Mito brought me a community, a family, lifelong friends. I have watched over these 4 years as that community has changed, I have watched the progression, the loss, the heartache. I have heard the screams from all over the world with each diagnosis, each progression, each angel's passing. I have grieved. Mito brought me more pain than one person should ever have to feel, pain that isn't possible to handle, pain that consumes me. <br />
<br />
I want to protect them. I want to protect us. I can't. All I can do is be honest, but supportive, and then shatter into a million pieces letting the tears pour in the quiet alone moments. <br />
<br />
Jace had to write a motivational saying for PE. He came home so proud.<br />
At the top was Eli's footprint traced from Jace's team Eli shirt and then colored in orange.<br />
Below it was his saying "Live Life Like it's Your Last"<br />
He's 10. My beautiful boy knows what this means. He knows. His tears bathed our baby's lifeless body that day. <br />
<br />
Please take what Jace wrote to heart. It happens so fast. 16 hrs after I held my baby, 16 hrs after I saw his beautiful eyes, 16 hrs after he saw me sign "I Love You" He was GONE. <br />
<br />
The world will never be the same. 11 months later the tears still flow. Today my heart breaks for us. Today my heart breaks for this family going thru testing right this very moment, as the doctors suspect Mito. <br />
<br />
11 months. I beg the world to pause, time to stand still. I'm not ready for 1 yr. Time is going to fast.<br />
<br />
Always and Forever Tiny Man.Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0tag:blogger.com,1999:blog-3574943433669850177.post-89594099190386577792014-02-14T15:09:00.000-06:002014-02-14T15:09:04.377-06:00Valentine's Day GriefIt's a happy day. A day of love. A day of cuddling and kissing. A day to snuggle with the ones you love and pamper them even more than a normal day.<br />
<br />
But that's not quite right. One of my most precious valentine's isn't here. But you guys already know that. You already know I'm broken and missing my beautiful boy.<br />
<br />
What you may not know is that this week alone 3 more kiddos have passed. 2 had Mito, 1 had a CHD. 2 I am friends with their moms, 1 I didn't know. One I more than knew. I have held him. I have watched him play and nap. I have traded medical supplies and stories with his momma. He and Eli have shared the same doctors, therapist, and dietitians. My heart is breaking. My heart is breaking for them. I would love to tell you that my heart is only breaking for them, but I would be lying. My heart is breaking for me too. <br />
<br />
Monday I will walk into the funeral of a 3 yr old boy that I watched grow. I will hold his grieving momma, just like she held me 9 1/2 months ago. I will cry tears for them, for us, for our boys, and for our medical community.<br />
<br />
I crumbled under the weight of the deaths this week. Sometimes I want to run and hide. Lock myself away from the medical world. The pain is immense, sometimes to much to handle. I no longer just grieve for each loss, I grieve for their loss and for mine. Oh do I grieve. But here I remain. Standing as strong as I can. This is my community. This is my family. <br />
<br />
I think back to Eli's passing. I think back to the grieving mommas who reached out to me. I remember asking them how? How do I do this? Telling them I can't. I remember the things I said, the tears I cried. I remember placing my burden before them, knowing all to well how much they were struggling with their own grief. I remember them encouraging me to do just that, I remember them saying I'm sorry, I'm here. I remember all of it. I look back now and I KNOW how their hearts were breaking at that moment. I know now how damn STRONG they were right then and their to be taking my burden on with theirs. To be up talking about the details, listening to me cry and scream, receiving the same texts over and over that I couldn't do it. The pain I now know that they were feeling at that moment, and they did it. Never wavering, never telling me enough, never once shying away from helping me.<br />
<br />
You know why? We are a select few. We are a community. It's my turn. I don't feel strong. I feel so weak. But you know what, I bet they did too. It's my turn. 9 1/2 months later I will be that momma, that friend, that broken hearted grieving momma who says I'm here and we can get thru this moment by moment together. It's my turn. I will do the same as those before me, I will be strong and I will bear my grief and theirs; knowing that sadly one day it will be their turn as well. This community that we live in guarantees that there will be more children ripped from their families arms too soon. This is not the end. There will be more who join our grieving ranks.<br />
<br />
All I can do is vow to be there. I will be there now and anytime in the future. I will be here day or night. I will hold them up when they simply can't do it on their own. I will carry the memory of their battle, of the precious beautiful child. I will honor them. I will grieve with them. I will stand strong, for I know that it's their time to grieve.<br />
<br />
What would I ask of you all? Please help carry their memory's too. Please help support us "seasoned" grieving mommas too. We are the front line for the "new" grieving mommas and this brings us a new wave of pain and grief that we have to be careful with as this is THEIR time to grieve, and we will grieve with them because damnit their child was amazing and they will be forever missed. Be our support, so we can support them to the best of our abilities. <br />
<br />
Finally always love our babies and always always always know that our beautiful babies are up there watching over our ENTIRE community and are immediately welcoming as their heavenly community expands. <br />
<br />
We are the grieving mommas. It's one hard road, that none of us want to be traveling down. We will stand strong and we always have open arms and open hearts for each new broken family that joins our ranks.<br />
Damnit we are Hero's. We have endured more than that body and heart and soul was ever made to endure.<br />
<br />
So yes it's Valentine's Day, and my heart is grieving, my heart is broken; not just for me and my beautiful boy; but for all of us. Love to all the grieving broken hearted ones on this day and every day after; for you are MY heros!Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0tag:blogger.com,1999:blog-3574943433669850177.post-25907459168444250832014-02-10T11:09:00.000-06:002014-02-10T11:09:31.907-06:00Quick Life UpdatesSwamped. That sums up life. We are swamped.<div>
<br /></div>
<div>
Jace has been so sick. He has been sick for 2 weeks, pneumonia and strep. It was rough seeing him sick, and mentally and emotionally draining knowing it was pneumonia. My heart struggled with that a lot. His fever is finally down, still a lot of coughing and a bit of wheezy breathing. They have him on an inhaler now as well. Trying school today, we will see how it goes.</div>
<div>
<br /></div>
<div>
Emily's elbow is healed she's back at her violin. She had seating auditions yesterday and is working hard for their upcoming concert.</div>
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<br /></div>
<div>
Benjamin. My little Benjamin. He's struggling. His doctor changed some medication dosing to see if that helps any. He is also referring Benjamin to a psychiatrist to get set up with her. Also he's sending him to a neurologist (Eli's old neuro before we moved to KC) to make sure that Benjamin isn't having seizures or anything neurologically that we may be missing. Lastly, and most painfully, he is sending Benjamin to a geneticist (yes you guessed it, Eli's old geneticist before we moved to KC). He suspects that there is an additional diagnosis, and he suspects that it's what has been talked around for years. My mind knows that EVERY single person is affected differently. My mind knows that it's NOT the same as Eli. My mind knows it's different. That doesn't change the fact that my heart and soul are screaming in agony that I simply CAN'T go down this road. We have agreed to the referrals and will move forward down a road we have already travelled knowing that refusing to move, won't change it; but it doesn't change me from wanting to dig in my heels and not move.</div>
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<br /></div>
<div>
Ariana is busy as always with school. She has stayed happy, healthy, and injury free. Only change with her is she is now the proud owner of a toothless smile as the top middle came out! She's excited for her 7th birthday on Thursday and is still picking what she wants for her birthday dessert!</div>
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<br /></div>
<div>
Bob and I have a medical family that we met yrs ago, that we are helping out. We met them when Eli quit breathing at RMH in KC in January 2011. They brought us up bags full of food to the PICU and we all immediately hit it off. They had 5 kids, their youngest being their medically complex. They have recently been hit hard by life. The husband/father is very sick himself, and they have lost their home. We have borrowed 2 of their children as of yesterday, and 1 more as of wednesday to allow them to only need 1 hotel room. That takes our kid count in our home to 7; ages 14, 13, 12, 10, 10, 8, 7. We are thankful that we are able to help, and are hoping that this gives them the breathing room they need to be able to find a new home.</div>
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<br /></div>
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Me. Where am I? I'm training for my 1/2. I'm putting in quite a bit of miles and adding in strength training workouts as well. I'm going to do this. There is no doubt in my mind. </div>
<div>
I've had a few emotionally rough days lately. Thoughts of Eli and that night have flooded my mind. When Bob & I were in town we were able to go and spend a bit of time with Eli. It was very nice!</div>
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<br /></div>
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So all in all were are we? We are busy. We are overwhelmed. We are still taking it day by day. We are pushing thru for ourselves, for our friends, our family, and for our beautiful little boy. We are holding strong onto the hope that life MUST settle at some point, I just hope it's soon!</div>
Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0tag:blogger.com,1999:blog-3574943433669850177.post-82494505987266685272014-01-30T17:20:00.006-06:002014-01-30T17:20:59.543-06:00SocialBookI saw a link on facebook about SocialBook. It is a company that takes your facebook statuses, pictures, comments, etc and makes it into a book for you. I had heard of it before and had wanted to do it for 2013, as this was a year I would like to have bound together forevermore.<br />
I clicked the link and it made up a preview of what the first bit of my book would look like. The very first page showed my very first status message that I posted on January 1, 2013.<br />
I read it and my heart dropped.<br />
It is typed below word for word, capital letter for capital letter, punctuation exact. <br />
<br />
"My 2013 New Year's goal??? Get my ENTIRE family to January 1, 2014 with as MANY good memories and laughs as possible and as FEW scars and tears and pain as possible. For some families this may seem like a given, but for our family and so many others I know this is a monumental, sometimes heartbreakingly, insurmountable goal. There are families hoping for hrs, minutes, days and weeks. Love to all the fellow warrior families out there, you guys know who you are. Peace and strength to all of us."<br />
<br />
Wow. The things I wish I had known that moment. That very moment my heart was breaking for the families barely hanging on. For the families saying goodbye. For the families watching a year tick by without their babies. I had no clue at that moment. No idea what this status meant to us. No idea what was to come. No clue that 5 months later I would be kissing my baby's cold head before his coffin was closed for the final time.<br />
<br />
We become so involved with the other families in the community. We love them. We cheer for them. We are willing to fight for them. We grieve with them. Our heart breaks for them. We know all along that it could have been us, but we also know it wasn't. We blindly go forward. We think it will never be us. We never expect to see the profile pictures changing to candles with OUR child's name on them. Never. Never. Never.<br />
<br />
That being said it crosses our mind. It crosses our mind late at night as we hear the sat monitor beeping, deep in the belly of the hospital as we see the look on the doctors face, in the PICU in the middle of the night as more and more meds get brought in, when we hear "crappy lung sounds". It flashes thru our minds.<br />
<br />
Then we see their progress. Their improvement. We see the FIGHT in our HERO's eyes! We see the shine, the glimmer in their eyes. We see the smile that could melt every drop of ice in the world. They are invincible! They are hero's. Flesh and blood, real life, no doubt about it HERO's! and DAMNIT our HERO will never die. It won't happen. <br />
<br />
We tap down the fear, we tap down the pain, we tap down the terror. But we can't get rid of it. It sits there.<br />
<br />
What was on my mind that day, on January 1, 2013 when I typed that status update on facebook? I can't tell you for sure, but I can tell you it was pain, and fear, and pleading. Oh the pleading! Begging for it to NEVER be MY HERO!<br />
<br />
Yet 5 months later it was MY HERO! God how I miss him. It was insurmountable. We lost the battle and sadly so did many other families.<br />
Fuck Mito. <br />
2013 was a dark year for so many of us, the lights that went out that year have left a darkness on earth, a void. The light that our HERO's shown around the world, is deeply deeply missed.Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0tag:blogger.com,1999:blog-3574943433669850177.post-48864015041057746982014-01-28T15:43:00.000-06:002014-01-28T15:43:31.297-06:00Running out of OptionsBenjamin has been struggling. A lot. He is finally in a school environment where he is expected to behave appropriately and complete his work. This has been a big struggle. When you combine that with some other things going on with him, it's been volatile.<br />
<br />
I am on a first name basis with the principal, as Benjamin has been struggling so much. We have already had to have repeated IEP and team meetings and plans are constantly changing.<br />
Everything came to a head yesterday.<br />
<br />
Benjamin slapped a girl 3 times across the face. The teacher tried to get benjamin out of the classroom and into a safe place. Ben resisted and because verbally aggressive. The vice principal came down to attempt to remove Ben from the classroom. Ben again refused. He put up hand on ben's arm and tried to lead him out. Ben absolutely flipped out and tried to run away. He got Ben down a side hallway that didn't have classrooms and at this point Ben was in full blown meltdown mode. Ben kicked his shoes off, threw himself around on the cement floor, bouncing off the cement walls. He was screaming, yelling, name calling, kicking, hitting, everything. The principal was called as nothing was working to keep benjamin safe. Benjamin saw an exit and took off running in socks thru the school hallways. They split up chasing him. He was finally located back in his classroom hiding at his desk. <br />
This is not the 1st time that this has occurred. It's getting worse and worse.<br />
<br />
These are not the only behaviors that are occurring either. He now refuses to do any writing. All of his work is scribed for him by his para. He hasn't picked up a pencil in weeks. Writing has always been a struggle for him, but it's never been to this point. The goal is to get all of his work switched over to the Ipad but this isn't something the school has ever had to deal with, so they aren't sure how to go about doing that with the full curriculum. So currently Benjamin runs in circles yelling out answers while his para scribes it all for him.<br />
<br />
He's no longer able to handle any rotations or transitions at school. He is now pulled out of his classroom and he and his para do separate work in the IR room alone. He can't handle indoor recess, assemblies, or any of those events either as he is no longer dealing with the smaller spaces and lots of people and noise. <br />
He's not making it thru recess, or lunch, or music or pe. He will require complete 1 on 1 support for those activities as well.<br />
<br />
The weighted vest is no longer effective. They have had him in a short sleeve compression top, but the OT feels he needs more. They will be transitioning him to a long sleeve compression top and full length compression pants. They are having to make changes on his sensory schedule and the sensory room to better meet his needs.<br />
<br />
It is clear that Benjamin needs a safe space to go to. He needs to also be trained to go there on his own as he can't handle any touch or redirection. There is an office right across the hall from his classroom. They are going to be creating a table and turning it into a tent with origami paper and other calming activities for him. The goal is when he panics that he runs there instead of away. <br />
<br />
He is also being given a fleece blanket at all times that he can keep wrapped around him while he is trying to sit. His chair will again be changed over to a special trampoline type chair. They are going to be trying out pineapple gum to see if the constant chewing may give him some sensory input that he so desperately needs.<br />
<br />
There are a lot of concerns about the path we are going down with Benjamin, but at this point nobody is sure how to stop the ball from rolling. Safety is currently a huge concern, for him and for the people around him. <br />
<br />
His teacher is so frustrated and was darned near in tears talking about the classroom concerns. The entire team said they have never experienced a child that can go from 0-70 in 3 seconds with no warning and no idea what even caused it. He has ZERO currency, as in nothing motivates him, and nothing punishes him.<br />
<br />
He doesn't communicate. It's all about what he wants and that is the only thing he will speak of. He doesn't understand. He feels no shame, he has no regrets, he doesn't care what others see or think. He is verbally abusive and has become very physically abusive at school. He is destructive. He puts himself in harms way. His obsessions and anxieties are running rampant.<br />
<br />
The team hasn't given up but we are definitely running out of options. We are flying down a slippery slope at 90 miles an hr and nobody knows how to turn it around or put the brakes on it. <br />
Currently Benjamin is on at home suspension and the goal is to have him resume school tomorrow. The accommodation list on his IEP has grown to 23 pages long, and they are hoping to get a large bit of the new changes in place before his return tomorrow.<br />
<br />
I'm exhausted. I'm at the end of my rope. The school is too.<br />
<br />
Currently he is curled up in a ball on his chair, in a meltdown because he has 7 math problems to do. The options for me are limited. I pick up the pencil and scribe for him, or the work doesn't get done. <br />
<br />
I wish I could reach thru all of this and get to the inner benjamin, but I can't. The autism, and OCD, and anxiety, and sensory issues have become all consuming, they have taken over and we can't seem to figure out how to reach thru to Ben. My heart breaks watching him struggle, and I don't know how to help him.Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com1tag:blogger.com,1999:blog-3574943433669850177.post-14525298405552269002014-01-22T18:51:00.000-06:002014-01-22T18:51:03.590-06:00Breathing for Two37 wks and 4 days was how long I was pregnant with my beautiful tiny man. I breathed for him for 37 wks and 4 days. He was safe, protected, held close. I held him as my own, only mine, for 263 days.<br />
<br />
My baby was by my side and in my arms for only 177 weeks 6 days. I tried to breathe for him. I tried to give him the fullest life he could possibly have. We made everything bigger and better, we celebrated more, we snapped more pictures, we made every moment as huge as we could. We provided the medical support to keep him breathing. I literally lived for him, thru him. I was him. I spent 1, 245 days keeping my baby alive. That seems so short when you break it down into days. <br />
<br />
Here I sit, with empty arms for 38 wks, 3 days; the longest 270 days of my life. My hands are idle. My mind has so much information that isn't needed. My senses remember. Muscle memory is there. Sometimes I hear feeding pumps beeping, and HR monitors ticking, and O2 machines swooshing; where there is none. I find an old syringe laying around and next thing I know I have pulled the plunger back to just the perfect med dose of 3.3mls. I can picture the squeezing rhythm I was taught on the ambu bag. I see the dial on the stove and remember the dial on the O2 tank. I think often of his doctors and nurses and how much I miss their voices, their laughs, the clicking of those dang cowboy boots as he walked the halls of the hospital. I hear the sounds of the bed rails of the hospital bed, squeaking loudly no matter how quiet we tried to be. I see the sign when I look at a kids book before the word. <br />
<br />
I'm no longer breathing for me baby, some days I feel like I'm barely breathing at all. Then I found read something. Something that touched the very depths of my soul.<br />
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"Then I know with every breath you take You'll be taking one for me" <br />
WOW. Like WOW. I'm always one to have words, but this is something felt deep inside of me, that words can't touch. <br />
I'm breathing for my baby.<br />
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I knew something had to happen. So here I am. I've put in 35 miles this month. I hit my longest run/walk ever at 10 miles in one workout. Today I broke my fastest mile by 1m5s. <br />
What is this all for? I'm breathing for Eli, I'm running for Eli, I'm doing this for Eli.<br />
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My beautiful boys coffin was lowered into the ground on May 4, 2013. <br />
I will be running my first 1/2 marathon on May 4, 2014. <br />
I'm doing this. We are doing this. I'm breathing for Eli, although most days I think Eli is breathing for me. <br />
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After my big run the other day, one of my best friends said something that was heartbreaking and beautiful and amazing to me.<br />
"May the pounding of your feet crush the broken pieces into something new"<br />
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Again WOW. Speechless. <br />
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Lastly this week I saw a pin on pinterest. "The cure for pain is in the pain." WOW again! Don't know how many times I can say WOW.<br />
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This all leaves me knowing I'm doing the right thing. <br />
I'm breathing for my baby.<br />
I'm crushing the broken pieces into something new.<br />
I'm journeying thru the pain, not ignoring it.<br />
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Does this make it easier? No. Does it fix it? No. Do I still hurt more than words could ever describe? yes.<br />
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Foot to pavement. Over and over and over. The wind pounding on me at points. The cold. The heat. The rain. The snow. My lungs burning. My muscles tired and sore. My mind screaming stop. <br />
My heart and soul screaming GO GO GO!!! <br />
Running blocks the pain, running brings on the pain.<br />
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In closing..<br />
"I keep so much pain inside myself. I grasp my anger and loneliness and hold it in my chest. It has changed me into something I never meant to be. It has transformed me into a person I do not recognize; But I don't know how to let it go."<br />
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I will find my way. My baby's wings will carry me thru when my feet can no longer move.<br />
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Always and Forever Tiny Man!Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0tag:blogger.com,1999:blog-3574943433669850177.post-76881035330542654832013-12-31T09:58:00.001-06:002013-12-31T09:58:06.842-06:0020132013 has robbed me of my very breathe, has broken my heart into a million pieces, and has shattered my soul. I can't wait for the year to end, yet I'm terrified to never again live in a time that my baby took a breath.<br />
I came into this year a very different person that I leave it. <br />
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This year has seen brain surgery, many hospitalizations, the death of our beautiful boy, the burial of our beautiful boy, the loss of my husbands job, our finances in shambles as we struggled to pay for a funeral, our move home, and the struggles of our oldest 4 as they grow and learn to deal with grief. This is a very vague summary of what we have seen this year, but it hits the highlights.<br />
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Again I stand by what I told the doctors that night as my baby lay dying in front of me. I told them, "I will die with him, I will take my last breath as he does. I will die too". I did. <br />
I died that night at 4:08am, I took my last breath. <br />
My heart, my soul, my spirit were crushed. <br />
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I am still drifting, still gasping for air, still trying to find a place to grab hold, trying to find a sliver of who I am.<br />
It is beyond hard to find a person in the ashes, to rebuild from such damage. The strength and willpower and determination that are needed to piece together the broken pieces is simply to much, right now it's not something I have. <br />
The pieces won't go back together. They no longer fit. There are to many shards and splintered pieces, to rebuild. I am forever damaged.<br />
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My hope for this year is to find something. One piece that I can grow and latch onto and cultivate. One piece to begin building around. One piece of who I was, to begin building who I will be. That one piece will still be broken, damaged, tortured, but my past must move forward with me, as there is no other way. <br />
That one piece must be memories, my love. The most painful piece to carry forward, but the one piece that I could never bear to leave behind.<br />
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I want to take this moment to thank you all for hanging in there with us during this most painful of years, 2013. I can't tell you how blessed we are to have you all in our lives, as I truly can say I wouldn't be where I am now if it wasn't for so many of you. We have gained friends, lost friends, grew friendships, and changed friendships. <br />
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I want to thank you for bearing with us, for allowing us to grieve, for supporting us no matter what. Very few have tried to change the course of our grief, many have fought for our rights to grieve, and almost all have held us up in our grief.<br />
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I would love to tell you that we are ready to take hold and do this on our own, but I'm not there. I'm trying. I truly hope that you see that I'm trying so very hard. I'm searching for something to grab hold of, something to keep me a float. There are days I think I'm almost there, days where I almost look real and whole and alive, even though I'm dead inside. <br />
I promise to keep fighting, to keep moving forward. I will rebuild. I will.<br />
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Lastly thank you for loving us, for loving our tiny man. We never doubted how loved we were and how loved Eli was, but seeing the love and support these last 8 months has been overwhelming. We know our tiny man lives on in so many hearts around the world.<br />
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So here we sit. There are hours left of 2013. <br />
My baby has been gone<br />
8 months, 5 hrs, 45 minutes, and 4 seconds OR 35 wks, 2 days, 6 hrs.<br />
The rolling over of a year won't stop that clock. <br />
For good and bad the year has ended, and the new year is unpredictable. We sure learned how life can change in a single breath this last year. <br />
I can only hope that this new year is gentler, we can't handle anymore.<br />
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It's time to rebuild. It's time to find something in the ashes.<br />
2014 here we come; be gentle to our family and to our Mito community.<br />
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Fly high tiny man, but always stay close.<br />
Always & ForeverHeatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0tag:blogger.com,1999:blog-3574943433669850177.post-59819253489219321322013-12-22T13:54:00.000-06:002013-12-22T13:54:03.757-06:00Moment by MomentIt's the final stretch before Christmas. For our family this means no longer months and weeks to prepare. We are no longer taking it day by day. <div>
We are down to moment by moment. What can we do to hold it together for that moment in time? </div>
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It's been hard. </div>
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It snowed yesterday. I clearly remember this past January. We had a big snow storm after my brain surgery. I remember watching my tiny man watching out the window as it snowed. He watched his siblings play and got so frustrated that he wanted to go out too. Finally his nurse bundled him up in so many layers and out he went. Eli got to be outside in the snow. Who would have known that would be his first and last time to ever stand and walk in snow. He was so excited and smiled his big beautiful smile.</div>
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There was only 1 other time he was ever in snow. When he was 1 yr old and was so sick. We were hospitalized and it was the first time the doctors began talking to us about quality of life. We pushed so hard and finally they agreed. We put layers of clothes on Eli, bundled him up with so many blankets, but on a face mask, and laid him in the red hospital wagon. Of we went. He spent 3 whole minutes outside looking at the snow and even touching a small handful. </div>
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It again snowed on our private family visitation day with Eli at the funeral home. We got to spend hrs together as a family, talking to him, taking turns alone working on the sticker book that he never got to do, and relishing the final times to ever touch our baby. It snowed that day. It snowed on the van, the snow covered the tulips in front of the funeral home. It had to be our tiny man.</div>
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So here we are days before Christmas with snow. The kids wanted to go out so out we went. Bob and the kids ran and had snowball fights, made snow angels and laughed and played. I took pictures and drew Eli's name in the snow.</div>
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My heart was breaking. Everything reminds me of him. Everything reminds me of the emptiness now. Everything reminds me that this will never end, that this will be the rest of our lives. I grieve for it all.</div>
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After everyone warmed up the kids were needing to keep moving. So that we did. Down to the pool we went. </div>
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These final days have brought about a stillness over our house, an anxiety in the kids, the missing piece is so apparent. </div>
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I have been constantly amazed at the strength of our kids and at how very clearly they grieve. It is different then how we grieve as adults, but boy do they grieve. They feel the emptiness. They feel the loss. </div>
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The days building up to Christmas this year haven't been the same. There are a few things they have insisted on to make the holidays feel like normal, mainly a Christmas tree, but other than that there hasn't been the Christmas push. I long for it be over, even though I know it won't truly be over. Never again will it be the same. I grieve for what the older 4 have lost. They haven't just lost their brother. Their hope has been crushed. They have learned how quickly life can change. How cruel the world can truly be. They have lost the childish belief in all things good. They know it simply isn't so. I grieve for the innocence of my children. </div>
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I grieve. I grieve for it all. I grieve for what was. I grieve for what never will be. </div>
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It is overwhelming, all consuming, exhausting. I'm exhausted. I'm broken. I am not strong. </div>
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I had many a long talk with one of my best friends this week and she said the words I've needed to hear for so long. She told me that she sees me, she sees that I'm broken, that it's ok. She said she sees me, and I truly believed that she meant it. It meant the world to me. Such simple words, but knowing that she truly SAW me right were I was, broken and grieving and lost.</div>
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So here we sit. Moment by moment. Playing games, watching movies, playing in the snow, swimming, baking, drawing, and anything else we can scrape together to keep us moving forward, to keep us busy, to pass the time. For we know in a few short days there will be no denying that it's Christmas day and our baby is GONE.</div>
Heatherhttp://www.blogger.com/profile/06709404044053911223noreply@blogger.com0