Yesterday was 3 weeks until Eli's 5th birthday, yet we only got to celebrate 3 with him in our arms.
Today it's all of a sudden turned cold. The leaves are falling off the tree. There is talk of snow.
Winter is right around the corner. Eli loved the cold. It was his time of year.
Thanksgiving. Eli's birthday. Christmas.
I've been really struggling the last few days. Hating the world. Hating how cold and cruel and how quickly life can change.
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.
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.
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.
Tears poured down my face the entire drive home.
As I walked out of the store I could FEEL Eli. He was there with me. There was NO doubt in my mind.
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.
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.
Tuesday, November 11, 2014
Monday, October 6, 2014
Back of the Pack
I'm a back of the pack runner, way back. I feel like us back of the packers are forgotten.
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.
I want to paint you a picture of just who this back of the packer is.
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.
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.
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.
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.
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.
It was a struggle to get back to my training.
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."
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.
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.
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.
Sometimes be there at the finish line cheering us on, for our hard fought win.
We are the back of the packers, we are athletes, we are champions, we are RUNNERS!
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.
I want to paint you a picture of just who this back of the packer is.
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.
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.
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.
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.
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.
It was a struggle to get back to my training.
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."
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.
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.
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.
Sometimes be there at the finish line cheering us on, for our hard fought win.
We are the back of the packers, we are athletes, we are champions, we are RUNNERS!
Monday, September 15, 2014
Awareness Week
It's Mitochondrial Disease Awareness week. It's the 2nd time we have had to live through this week with out our little boy.
It's been a hell of a time these last 2 weeks for our family.
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 EoE . 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.
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.
We got home late yesterday and we are working to settle back into normal life for a little while. Whatever that may be.
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.
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.
It's been a hell of a time these last 2 weeks for our family.
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 EoE . 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.
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.
We got home late yesterday and we are working to settle back into normal life for a little while. Whatever that may be.
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.
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.
Tuesday, August 26, 2014
Goals
Goals. Most of us have them. Sometimes we meet them, sometimes we don't. Sometimes we forget we even set goals days later.
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.
Finally I said enough. This cycle had to stop. I was simply setting myself up for failure over and over again.
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.
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.
I held myself accountable, and the public posting helped others hold me accountable as well.
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.
This month I won't reach my utmost goal.
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.
My goal was also to continue my running streak.
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.
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.
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.
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.
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.
What are your goals? What have you found to hold yourself accountable?
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.
Finally I said enough. This cycle had to stop. I was simply setting myself up for failure over and over again.
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.
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.
I held myself accountable, and the public posting helped others hold me accountable as well.
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.
This month I won't reach my utmost goal.
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.
My goal was also to continue my running streak.
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.
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.
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.
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.
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.
What are your goals? What have you found to hold yourself accountable?
Monday, August 25, 2014
The Fall
I 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.
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.
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.
It was a blur. Off to the hospital. I have never felt so awful. I was terrified and didn't feel well at all.
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.
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.
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.
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.
As I sit here today recovering I can't help but think about it all.
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.
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.
That's not me. But to them it is.
I will forever live a balance of my medical file and ME.
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.
I can't imagine the balance it is for him too, the medical me and ME.
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.
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. :)
Wednesday, August 20, 2014
Miles
Last week I ran 1.55 miles without taking 1 single walk step break.
Saturday I ran 3.1 miles without taking 1 single walk step break.
Last night I ran 5 miles without taking 1 single walk step break.
My strength amazes me. The things my body is able to do.
18 months ago I was barely able to take a few steps with the walker after brain surgery.
15 months ago I had no desire to take any steps without my baby in my arms.
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.
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.
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.
I'm not saying I have found the answers to self esteem, body image issues.
I will however say that I'm finding MYSELF in these miles.
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.
I'm crushing my anger, disgust, shame and hatred for my body. I am finding a warrior inside of myself.
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.
No PR, no scale, no pace, no medal shows the changes inside of me.
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!
I'm proud, and for once I'm proud of MYSELF!
Saturday I ran 3.1 miles without taking 1 single walk step break.
Last night I ran 5 miles without taking 1 single walk step break.
My strength amazes me. The things my body is able to do.
18 months ago I was barely able to take a few steps with the walker after brain surgery.
15 months ago I had no desire to take any steps without my baby in my arms.
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.
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.
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.
I'm not saying I have found the answers to self esteem, body image issues.
I will however say that I'm finding MYSELF in these miles.
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.
I'm crushing my anger, disgust, shame and hatred for my body. I am finding a warrior inside of myself.
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.
No PR, no scale, no pace, no medal shows the changes inside of me.
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!
I'm proud, and for once I'm proud of MYSELF!
Tuesday, August 19, 2014
Heat
Shit got real around here these last few days. It's HOT. Summer has officially come to Kansas.
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.
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.
These are the days I have to dig down deep inside of me and remind myself why I run.
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.
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.
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.
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.
These are the days I have to dig down deep inside of me and remind myself why I run.
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.
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.
Monday, August 18, 2014
Simplest Moments
Wow. 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.
The kids are in their 2nd week of school.
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. :)
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.
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.
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.
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!
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.
The kids are in their 2nd week of school.
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. :)
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.
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.
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.
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!
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.
Wednesday, August 13, 2014
Inspiration
It's here. Today's the day. They are all 4 gone to school. I did pretty decent today.
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.
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.
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.
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.
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.
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.
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.
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.
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.
What I can say at this point, is somehow, someway; I'm surviving...we are surviving.
It's not pretty, it's probably not the right way, it's probably not the wrong way
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.
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.
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.
Eli is our strength, Eli is the reason we get through each day.
Blessings.
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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.
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.
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.
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.
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.
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.
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.
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.
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.
What I can say at this point, is somehow, someway; I'm surviving...we are surviving.
It's not pretty, it's probably not the right way, it's probably not the wrong way
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.
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.
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.
Eli is our strength, Eli is the reason we get through each day.
Blessings.
Monday, August 11, 2014
Silence
We are here again. The kids start school tomorrow.
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.
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.
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.
Here I find us again, at another school year, another new start without my baby.
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.
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.
Wednesday, July 9, 2014
Long Time No Blog
I have been quiet for quite some time.
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.
What all has gone on?
1 yr since we lost Eli
6 baby kittens being born on my lap
1 yr since we buried Eli
Our very 1st 1/2 marathon
Multiple 5K's
Emily's school team winning Kansas History Day
Emily's team travelling to National History Day
9 days of competition, travel, and vacation in Maryland, Virginia, DC, and Delaware
Meeting one of the very first Mito families I ever spoke to
Tons of eating issues for Ben resulting in ensure scripts and feeding therapy referrals
The end of 1st grade, 3rd grade, 5th grade (elementary school graduation) and 7th grade
I'm sure there is a ton more I'm forgetting but you get the idea. It's been a LOT!
Big things. Emotional things. Heart breaking things. Amazing things.
It's just been to much.
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.
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.
I'm ready to get back to blogging. I think.
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.
More soon. Promise.
Friday, April 25, 2014
Eli's Final Journey
I have gone round and round in my mind if I'm going to share this video publicly or not.
Some of my closest medical mommas have seen it but that's all.
I have held onto it for almost 1 yr, as this video was made a week or two after Eli's funeral.
I have decided now, on this day, 1 yr after my son was wheeled into his final surgery, to share.
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.
This is my tiny man's final journey. This was our family's journey. This was our life.
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.
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.
There is a separate video for the funeral and burial that I will share in a few days.
Again this video is raw and unedited. Do NOT watch it if you are not able to handle that.
Here is the blog post with written details of that night for those who need the written info. "What Happened"
Some of my closest medical mommas have seen it but that's all.
I have held onto it for almost 1 yr, as this video was made a week or two after Eli's funeral.
I have decided now, on this day, 1 yr after my son was wheeled into his final surgery, to share.
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.
This is my tiny man's final journey. This was our family's journey. This was our life.
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.
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.
There is a separate video for the funeral and burial that I will share in a few days.
Again this video is raw and unedited. Do NOT watch it if you are not able to handle that.
Here is the blog post with written details of that night for those who need the written info. "What Happened"
Friday, April 18, 2014
Monday, April 14, 2014
Just love us, please
My heart is aching. My soul is screaming in pain and agony.
The feelings are starting to fold in on me. I feel bound and weighted.
Suffocatingly the clock is ticking, so fast.
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.
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.
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.
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.
Right now I simply can't find words to convey how I'm feeling.
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.
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.
Always and forever tiny man.
The feelings are starting to fold in on me. I feel bound and weighted.
Suffocatingly the clock is ticking, so fast.
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.
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.
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.
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.
Right now I simply can't find words to convey how I'm feeling.
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.
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.
Always and forever tiny man.
Saturday, April 5, 2014
Poetry
This Horrible Yet Wonderful Grief - Rewrite
by Emily Moore
This grief this horrible yet wonderful grief
it will crush your heart
and change your life
it will motivate you
but it will drag you down
just keep going
they are angels watching over us
guardians of the night
keeping away fright
it comes and goes just like day and night
up and down like roller coasters
but will never grind to a halt
still thinking it's my fault.
The time flies by
as I see the sky
the sadness engulfs me
the hidden tears now run free
all the what ifs
all my thoughts saddened
my heart becomes distraught
my mind overwhelmed
my heart unbound
as I remember
the December day you were born
I also remember that frightful night
when your light was burned out
the air fills with heart breaking screams
wishing it was a dream
on that night
i watched you battle
you lost the fight
i watched 4 children
one by one
their dreams crushed
their lives changed
their hope lost
their confusion
their misunderstanding
mom crouched over calling for her baby
dad saying save him, save my son
doctors running
On that fearful night
that tragic night
I learned a lesson
between
life
and death
I learned most of all
how fast your life can be changed
how quickly things can be rearranged
this horrible and wonderful grief
made me sad makes me mad
but also taught me lessons
brings old memories fresh to mind
making the time fly by
Fear
by Emily Moore
What will I do
How will I carry on
I have to face it, you're gone
almost 12 months have flown by
like birds in the sky
Still I remember when I grasped your hand
I fear for what will happen
When it reaches a year
Can't shake this feeling
of sadness anger and fear
I have had this feeling all year
A year without your smile
your face, your laugh
your heart used to beat all so precious and perfect
your little art you left in the rooms all now empty and bare
Your smile still fresh in my mind
I can no longer see
Your laugh so heart-pulling
Is no longer ringing
I hear nothing, nor see a thing
I see colors of your youth
very tiny, only three
I see and feel you near
When I stand here
The wind blowing through my hair
The butterflies in the sky
But now I'm left here wondering
How I'm supposed to keep going
To live laugh and carry on
When the simple fact is you're gone.
Memories
by Emily Moore
Seems like it just happened yesterday
we were laughing and playing
saying I love you tiny man
you would laugh till you fell over
your little snort and cough
you lit up any room
consuming in books making us sign them
your toys covered every corner
your glasses down on the end of your nose
your cheeks like roses
your smile so bright
sleeping so soundly at night
clicking sounds when you cuddle
made my heart melt like ice to a puddle
your clapping at the worse times
signing reading you all your books and rhymes
your little waddle when you walked
oh so cute and perfect
the way you talked and signed hi
never wanting to say bye
your little sign language
demanding everything you signed
your hands and feet so tiny
you were sometimes so whiny
seems like forever
since I've seen you so clear
thinking of butterflies
and hearing cries of happiness and sadness
remembering those days
those beautiful wonderful times
feels like it's been years
but in reality it's been almost a year
I will always have memories of those 3 years
always will be clear
as my tears will fall
as I hear you call
hi for the last time
remembering the good and bad times
never will they be forgotten.
Stories
By Emily Moore
written following her friend's suicide
Everyone has stories
good and bad
they can happy or sad
also scared or angry
it depends on the person
they can have memories
fun or boring memories
stories can end quickly like death
or can be long like life
stories can have first loves
and heartaches
they can have old and new beginnings
they can have color
black or white
emotion or emptiness
everyone has stories
they can inspire or can be powerful
but stories are words
and words make big differences
so before you end your story
just think about other people's stories
stories that are similar to yours
stories that have endings and beginnings
so before you do anything you regret,
what's in your story?
Wednesday, April 2, 2014
No Words
Emily 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.
"This Horrible Yet Wonderful Grief"
by Emily Moore, age 13
There is a grief that ages the face
and hardens the heart
and softens the spirit
A grief that casts shadows on the eyes
yet broadens the mind
A grief that keeps the pain and has no words
but increases the understanding
There is a grief that breaks the heart and wounds the soul
that lasts and lasts and can shatter in a minute
but will inspire for a lifetime
It comes and goes just like day and night
up and down like roller coasters
but will never grind to a halt
still thinking it's my fault.
The time flies by
as I look up into the sky
The sadness overwhelms me
as the bottled up tears run free
all the what if's
are thoughts as
my heart is distraught
my mind overwhelmed
my heart unbound
as I remember
the December you were born
I also remember that frightful night
when your light burned out
I then put out a heart breaking scream
wishing it was a dream.
On that night
you lost the fight
I watched four children
one by one
their dreams crushed
their lives changed
their hope lost
their confusion
their misunderstanding.
On that fearful night
that tragic night
I learned a lesson
between
life
and death
and I learned most of all
how quickly your life can be changed
how quickly things can be rearranged
I learned and am still learning...
Friday, March 28, 2014
11 Months TODAY
I haven't blogged for quite a while.
Why?
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.
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.
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.
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.
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.
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.
Jace had to write a motivational saying for PE. He came home so proud.
At the top was Eli's footprint traced from Jace's team Eli shirt and then colored in orange.
Below it was his saying "Live Life Like it's Your Last"
He's 10. My beautiful boy knows what this means. He knows. His tears bathed our baby's lifeless body that day.
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.
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.
11 months. I beg the world to pause, time to stand still. I'm not ready for 1 yr. Time is going to fast.
Always and Forever Tiny Man.
Why?
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.
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.
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.
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.
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.
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.
Jace had to write a motivational saying for PE. He came home so proud.
At the top was Eli's footprint traced from Jace's team Eli shirt and then colored in orange.
Below it was his saying "Live Life Like it's Your Last"
He's 10. My beautiful boy knows what this means. He knows. His tears bathed our baby's lifeless body that day.
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.
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.
11 months. I beg the world to pause, time to stand still. I'm not ready for 1 yr. Time is going to fast.
Always and Forever Tiny Man.
Friday, February 14, 2014
Valentine's Day Grief
It'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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Damnit we are Hero's. We have endured more than that body and heart and soul was ever made to endure.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Damnit we are Hero's. We have endured more than that body and heart and soul was ever made to endure.
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!
Monday, February 10, 2014
Quick Life Updates
Swamped. That sums up life. We are swamped.
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.
Emily's elbow is healed she's back at her violin. She had seating auditions yesterday and is working hard for their upcoming concert.
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.
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!
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.
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.
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!
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!
Thursday, January 30, 2014
SocialBook
I 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.
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.
I read it and my heart dropped.
It is typed below word for word, capital letter for capital letter, punctuation exact.
"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."
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.
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.
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.
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.
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.
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!
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.
Fuck Mito.
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.
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.
I read it and my heart dropped.
It is typed below word for word, capital letter for capital letter, punctuation exact.
"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."
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.
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.
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.
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.
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.
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!
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.
Fuck Mito.
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.
Tuesday, January 28, 2014
Running out of Options
Benjamin 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.
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.
Everything came to a head yesterday.
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.
This is not the 1st time that this has occurred. It's getting worse and worse.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
I'm exhausted. I'm at the end of my rope. The school is too.
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.
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.
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.
Everything came to a head yesterday.
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.
This is not the 1st time that this has occurred. It's getting worse and worse.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
I'm exhausted. I'm at the end of my rope. The school is too.
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.
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.
Wednesday, January 22, 2014
Breathing for Two
37 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.
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.
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.
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.
"Then I know with every breath you take You'll be taking one for me"
WOW. Like WOW. I'm always one to have words, but this is something felt deep inside of me, that words can't touch.
I'm breathing for my baby.
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.
What is this all for? I'm breathing for Eli, I'm running for Eli, I'm doing this for Eli.
My beautiful boys coffin was lowered into the ground on May 4, 2013.
I will be running my first 1/2 marathon on May 4, 2014.
I'm doing this. We are doing this. I'm breathing for Eli, although most days I think Eli is breathing for me.
After my big run the other day, one of my best friends said something that was heartbreaking and beautiful and amazing to me.
"May the pounding of your feet crush the broken pieces into something new"
Again WOW. Speechless.
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.
This all leaves me knowing I'm doing the right thing.
I'm breathing for my baby.
I'm crushing the broken pieces into something new.
I'm journeying thru the pain, not ignoring it.
Does this make it easier? No. Does it fix it? No. Do I still hurt more than words could ever describe? yes.
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.
My heart and soul screaming GO GO GO!!!
Running blocks the pain, running brings on the pain.
In closing..
"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."
I will find my way. My baby's wings will carry me thru when my feet can no longer move.
Always and Forever Tiny Man!
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.
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.
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.
"Then I know with every breath you take You'll be taking one for me"
WOW. Like WOW. I'm always one to have words, but this is something felt deep inside of me, that words can't touch.
I'm breathing for my baby.
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.
What is this all for? I'm breathing for Eli, I'm running for Eli, I'm doing this for Eli.
My beautiful boys coffin was lowered into the ground on May 4, 2013.
I will be running my first 1/2 marathon on May 4, 2014.
I'm doing this. We are doing this. I'm breathing for Eli, although most days I think Eli is breathing for me.
After my big run the other day, one of my best friends said something that was heartbreaking and beautiful and amazing to me.
"May the pounding of your feet crush the broken pieces into something new"
Again WOW. Speechless.
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.
This all leaves me knowing I'm doing the right thing.
I'm breathing for my baby.
I'm crushing the broken pieces into something new.
I'm journeying thru the pain, not ignoring it.
Does this make it easier? No. Does it fix it? No. Do I still hurt more than words could ever describe? yes.
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.
My heart and soul screaming GO GO GO!!!
Running blocks the pain, running brings on the pain.
In closing..
"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."
I will find my way. My baby's wings will carry me thru when my feet can no longer move.
Always and Forever Tiny Man!
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