My insight on grief

My heart hurts for my friends experiencing deep loss recently....

Grief is the worst feeling to experience in life. Everyone experiences it at some point. Some experience more grief in their lives than others. The loss of a parent, a sibling, a friend, a student, a mentor, and even a pet is too much for the heart to bare alone. I believe the death of a child is a life long grief worse than anyone should ever bare. I can only hold and pray for those going through it at the moment. 

Grief brings you to your core, to your knees and gut wrenching heartache. You feel like you can’t breathe. You don’t want to wake up. You are stuck in a moment of time you can’t get out 

of. Grief: you are sucker punched over and over every time you try to wake up from a nightmare.

When you experience grief you become a different person. You reinvent yourself. You can never be the person you were before the hole in your heart was left.

Grief knocks you down some days. You can’t get out of bed. You want to sleep and dream of a life that once was. You just can’t face reality some days. That’s okay! Be gentle with yourself and know life goes on... even if you don’t want it too. It will go on and you will get stronger. You will get up. You will stand tall. Your heart will build scar tissue so it doesn’t feel like it’s raw and bleeding every single minute of the day. You get tougher. You see beauty in new lenses. You forgive easier. You don’t judge because life is hard enough. You LOVE fully. You understand life is fragile and short. Grief is the 

worst feeling to experience. BUT it gives you insight on how to LIVE fully knowing tomorrow isn’t promised.

I'm here for you my friends. Grief is hard, but you are not alone. xoxo

Reflections on another year past.. and looking onward!

As I am faced with another birthday and another year ahead..... I have been very reflective on the past 4 years and my goals for the year to come...


July 1, 2011

I had the worst birthday ever as I learned to put a NJ tube down Ryder's nose. I cried, he cried..... it was heartbreaking. I tried to stay positive knowing that NJ tube would give him the nutrition he needed. I was heartbroken--- but had HOPE. It was a long hospital stay... we watched fireworks from the garden area at Phoenix Children's Hospital.


July 1, 2012

Ryder is back in the hospital.... we don't know what is going on but he is throwing up and can't handle feedings through his G-Tube at this point. He's in pain and I'm a wreck watching him suffer and not being able to do a thing about it..... I'll never give up though.... I research, I learn all I can, I love every moment with him. I can't continue with nursing school at this point.... he needs me and I need to be here with him. (A choice I will treasure forever). Chad from Copperstate Fourwheelers is planning a fundraiser to help us get a wheelchair accessible van!!!! My back hurts so much from lifting him so this will be amazing! That was one bright focus we had in the next 2 months of no sleep, awful pain, seizures starting and an answer to the mystery... that we didn't want to hear-- Alper's Syndrome. I still clung to HOPE.


July 1, 2013....

I don't remember? I know we just moved to Parks, AZ and I was a zombie. I was very numb. I still woke up each morning with a few moments of joy... until I realized.. Ryder's gone forever. Every morning it hit me over and over and over.... no matter where I moved or lived- this is my new reality. No more hope.....


July 1, 2014

I realize my reality now the moment I wake up... no more sweet moments before the reality sets in. I don't want to wake up then... what is there to look forward to? I want to sleep...... forever. I fall into a deep depression until the 27th.. when I hit rock bottom. After waking up with no memory of the last few days in ICU I know it's decision time..... I chose to LIVE.

That was truly the turning point on this road of grief. I want to live! From that day forward.... I know suicide is NEVER an option for me. I can live and be happy... wooow.... and still always keep Ryder's spirit alive. I start making daily goals, I monitor my emotions, continued EMDR therapy for PTSD (life changing) and started looking forward to the future. I started planning projects around Ryder's "angel"versary, birthdays and holidays to remember him. I'm snapping back into reality, but embracing the blessings I still have. Ryder has visited me in a few dreams... I live for these moments!!!!! Hope for a future is arising!


July 1, 2015

I'm in a really good place. I'm happy. I miss my Ryder deeply, but when I start feeling the stabbing sadness I reach out and talk about it. I allow myself a moment to sob, but then can finally refocus on a healthier way to grieve. I will always miss Ryder and that is OKAY. What a beautiful child he was and I am so grateful I got to be his Mama!

I continue to look forward now..... I enjoy my life, my kids, my husband, family, friends, nature.... I continue to set goals for my days so that they count. I love my routine with my boys asking "What was your favorite part of the day? What was the worst part? What do you want to dream about?" I make sure to set aside time each night to reflect on my day.. How did I help grow Les and my relationship? How did I show Tyler I loved him?, How did I show Noah I loved him? What did I do for ME? Did I make today count? I HOPE I can make every day count :)



Catching you up to speed.......

I mentioned in a Facebook post earlier in the month that I would update on my experiences recently. I have thought long and hard about writing anything because I don't want identify anyone or give any information on people that I love that haven't chosen to tell their story. I will say that I was really emotional after seeing a friend revert to alcohol afters many years of sobriety and greatly suffering from PTSD. It was a touching experience visiting him out of the blue. He felt me showing up was a sign from the Creator. He was overwhelmed, thankful and couldn't believe I cared about him enough to show up.... he said no one visits him ever. He felt it was a sign that I showed up... that he needs to gain control of his life once again. We prayed together and he said a blessing over me. The same day I had an older lady knock on my car window asking to use my phone. I wasn't in town and I was by myself. I let her use my phone, but she couldn't reach her husband. It was really hot out. She told me she was hungry. We were right outside a hotel I was going to stay at for work purposes. I told her I'd buy her a meal inside at the hotel restaurant. I tried to make conversation with her, but I know she was on meth.....

It was a tough trip seeing so much poverty, my friend drinking again and this lady on drugs. I was in a bit of a funk for a bit... but I am proud of myself for regulating my emotions and not internalizing everything anymore. I poured all my feelings out on Les and my Mom. It's hard to know I can't help everyone!!! But, I feel good about helping whenever I can.

This year for Ryder's birthday I wanted to collect toys and books for the Ryan House in his memory. I hosted a Usbourne book pary with the intention of donating all the free $ in books to donate to the Ryan House. Never in my wildest dreams did I imagine it would hit over $1200 in retail and give me over $420 in free books!!!!!!Plus many people donated books directly to the Ryan House in Ryder's memory..... folks... that's a whole new LIBRARY for the Ryan House in memory of Ryder!!!!!


Today... another year, another birthday...... it's a good day :)
This year I want to continue on a good path. I want to read, explore, camp, fish, travel, volunteer,deepen my relationships and maybe turn this blog into a book finally???!!!! . It's going to be the BEST year EVER :)

Stickers to go inside donated books:

Beauty out of Pain

A friend pointed out that an update is way overdue! I am doing very well! I think I really needed to hit rock bottom to realize I am still ALIVE and need to LIVE everyday to the fullest. It's been pretty surreal that past few weeks though, but I can see so much beauty out of all this pain.

Last Friday my intend was to leave Hopi after a few workshops I presented to attend an 11 year old's Celebration of Life. I was in a complete numb,fog when I realized I couldn't possibly get there in time. I took my time checking out of the hotel and decided to go check out the local artists that were by the Cultural Center. I talked to a few of the artists for a bit and as I was getting ready to leave, one of them asked if I could give him a ride home. Unlike something I would ever do I said I would. While this could be very dangerous in Phoenix, it is an everyday occurrence in this area and I felt completely comfortable with this very nice gentleman. He packed up his art in the back of my pickup and I drove him home. We talked about his culture, Ryder and family. He invited me into his home and said he had something special he wanted to give me. I was beyond overwhelmed when he offered me a Katsina that he had hand carved and painted. It is truly beautiful and something I will treasure forever--- the whole experience! He showed me his workshop and a piece he is working on now. We talked about history, more about Ryder and culture. He invited me and my family to visit and he'll take us on a tour very soon! I have never connected with a complete stranger so fast. I am in awe of this experience and felt a peace in my heart. Arvin (the amazing artist) was meant to come into my life...... and in perfect timing!

When I got home from this trip, Les had another surprise for me! Les had been driving my Pilot to work so I could take his Tundra on my work trips. A co-worker had seen the Mommy of An Angel sticker on the back of my car the day before and it touched her heart. She wrote a beautiful card and gave me a Mommy of An Angel bracelet that I will also cherish forever!

I was so very touched by the kindness of complete strangers! There are some really amazing people in this world!!!! I don't think they will ever really know how much their actions meant to me! I've been heartbroken at the loss of 2 children with Leukodystrophy the past week.

The next day (Valentine's Day) we went to the valley to do some car shopping. I travel so much for work lately and we wanted something that didn't have as many miles. We had been looking around for about a month and I was pretty set on a Toyota Highlander. However, I had an open mind since I didn't think we'd be buying a vehicle that day. I test drove a Rav 4 and really liked it! We also met a very awesome car salesman (Deiter) at the dealership. After going to lunch and talking it over, plus getting a smoking deal, we decided to buy the Rav 4. I became so emotional, something I didn't expect at all! I was extremely attached to that Pilot! It was the last vehicle Ryder was in so it felt like I was moving further away from Bubba.Plus as I cleaned it out I found a spare pair of Ryder's socks I kept in there just in case. It was really hard to part with it... and I'm tearing up now just writing this! On our way home Tyler (our 10 year old) said, "Mom we can make new memories in this car!" He is so sweet... and so right! I want to find someone who can customize a tire cover with an In Memory of Ryder to replace the sticker that was on my Pilot. I went home and slept for the rest of the day pretty much! It was a draining, but memorable weekend. My brothers' long time girlfriend Sammy also told me something that is in the works which is really, really exciting! I'll announce it when more details are figured out :)

Rejoice in Paradise: You both will always be remembered and have a place in my heart <3
PJ Syverson (11 years old)
Madelyn Cooper (5 years old)

Random Acts of Kindness in memory of Ryder

"A single act of kindness throws out roots in all directions and the roots spring up and make new trees." -Amelia Earhart

We have been doing Random Acts of Kindness in memory of Ryder for the month of August. Tomorrow marks 2 years since Ryder flew home to be with Jesus. We miss him incredibly! It's been a rocky journey of grief these past few years (especially this past month). Instead of focusing on my heartache I am trying to focus on the joy that Ryder brought into our lives. He was such a special little boy with the sweetest demeanor!

We have decided to keep Random Acts of Kindness going all year long. What could be a better way to remember our Bubba than spreading love and kindness to brighten someone else's day like he did ours?

I made cards that I pass out when I can. I have had requests to send others these cards as well so that they can participate in Random Act's of Kindness in Ryder's memory. If you'd like cards message me your address and how many you'd like and I'd be happy to send some to you! 500 have already been passed out!!!! I just ordered 1000 more. Imagine all the smiles in Ryder's memory!!!

I don't have much money, but acts of kindness don't need to be about spending money. However, since August is a month we celebrate Ry's life (of course we do every month...but you know what I mean)I cashed in my coins to use that money on other's to brighten their day. I think I'll make that a tradition in August :) This year I had a whopping $44.87 to spend!

What we've done so far:

Free.....
-picked up litter in the park
-made a photo album for a friend whose son passed away
-entered another friend whose going through a difficult time into a contest for a free art sketch (will find out if she wins tomorrow!)
-Sat with and listened to people in the hospital who really needed a friend
-donated books to the hospital library that I had already read
-reached out to a friend who is struggling with depression


Other acts I've done or will be doing in the near future:

-print out extra coupons when I go to the store to share with others
-tape a bag of popcorn to a Redbox for someone to enjoy
-tape a quarter on parking meters
-Les is passing out 200 free cookies to high school student's tomorrow with a RAK card. A HUGE shout out and thanks to Coconino High School culinary program for donating the cookies!!!
-Sending a small special gift to a friend (don't want to ruin the surprise lol)
-give someone flowers just because (I'm giving them to someone I don't know)
-bring cookies to the local fire department
-let someone know you are thinking about them
-volunteer (I'm volunteering at the local Humane Society....but there are soooooo many places that could use volunteers!)
-make care packets to keep in the car to pass out when I see someone in need (I did this in the winter and included water bottle, small snack, hand warmers,chap stick and kleenex)

RAK people have recently done for me:
- sent a thinking of you card
- sent a book
- sent meditation CD's

These are just a few ideas. I'd love to hear your ideas too!!! Also if you have found this blog because of a random act of kindness I'd be grateful if you shared where you are (these cards have been passed around the USA!) and what the act of kindness was :)

Clarification from Rock Bottom Part 1 & 2

I just wanted to write a quick clarifying post because I've gotten several questions and comments. I am not addicted to pills like Xanax or Ambien. I was prescribed them after Ry passed away. I very rarely (maybe a handful of times over 2 years) took these prescriptions. That is why I had the amount I had to OD on. Also I have been drinking a lot as I mentioned, but as I have learned there is a big difference between having a physical addiction to alcohol and an emotional addiction---both not healthy for sure nor is one better than the other! I never had a physical addiction so I didn't go through with-drawl. EMDR really got rid of the traumatic images I was having so I haven't felt that need/desire to numb myself and sleep. I've been a little moody, but hey, I don't expect to be peachy keen after all this right away :) I really appreciate the outpouring of love we have received after my last few blogs. I felt it was an important subject to be honest and open about because many people struggle with depression and mental health, yet it seems very taboo to discuss. I want others to know they are not alone. I also want my friends/readers who have lost a child to know that grief is such a bumpy, often times lonely road and can quickly feel unbearable. Parents who have a special needs child or caregivers are more prone to depression. There really is help out there. If you ever feel helpless, reach out to someone you trust. You are not alone!! Much love to all of you!!!

Rock Bottom Part2....

Alright…where was I?

I think I left off talking about details Les filled me in on. (I’m on his computer and don’t feel like rereading what I wrote last night lol). Anyway, I vaguely remember waking up a bit (possibly Monday night, but who knows!!) I remember seeing my Mom there. Les called her on Sunday night and she made the late night drive to northern AZ. I remember the respiratory therapist and the nurse telling me to cough (still being intubated) and trying to listen for airflow. I tried to cough, it hurt so much. Still no sound or evidence that I’d be able to breathe on my own….. I remember the nurse really trying to relax me and told me to try my best to cough, if I couldn't cough or breathe on my own I might end up with a trach. That definitely got my attention and I tried my very best….no success. They decided to leave it in and try again the next day. The only other things from that night I remember were my Mom and the Sitter (used for every suicide attempt) combing out the massive tangled nest of hair I had from everything and using the bedpan—A LOT!!!!! God bless those amazing nurses and nursing assistance's <3 If I never see a bedpan again it will be too soon--- blah. Each time I got turned the tube really, really, really hurt and put me in a panic. My Mom was able to read my eye expressions and quickly learned I needed deep suction (into my lungs) each time I got turned and shared that with the nurse.
Next memory I have was on Tuesday afternoon. I remember they took out the tube and I was immediately able to cough and breathe on my own. I guess I was vomiting so much, even being intubated and I had chunks of vomit that were lodged in the tube which was the reason they couldn’t hear airflow the previous day. Mom told me the tube was actually too big for me as well which probably added to me discomfort.(I totally caught that spelling mistake on spell check but left it cuz me sounded like a pirate and had a good laugh-arg!). I am covered in bruises as well. Les and the BEST ICU nurse in the whole wide world KJ (the other nurse was absolutely amazing too, but I was too out of it and don’t remember her name) finally had to stop the people that draw blood (what are they called again??? I should know this one!!) Four different people came up from the lab to draw my blood at four different times within about an hour and a half…who knows why, but I’m sure happy I have no memory of that part. Hey—I’m ALIVE and it was an emergency situation, so I’m not complaining here, only purely grateful for everyone’s help. I’m being as descriptive as I can remember so that maybe one day, someone with suicidal thoughts might read about how horrible this was for me and seek help right away!!! Don’t let it get as far as I did!!!
I made the choice to go to the behavior health floor later that night. At first I wasn’t sure I wanted to go because I thought the whole thing scared me enough to never ever want to attempt that again—ever!!! I remembered the time I asked for help 7 months after Ryder passed away and checked myself into a hospital. While it was great and I made a life-long friend there, all of the positive thinking couldn’t change my depression. They put me on meds that made me feel extremely shaking and horrible. They put a Band-Aid on my grief, gave me some great ideas to help with my depression and sent me along. I am not saying it was useless and if you are feeling depressed and can’t climb out of it, please seek help! I’m glad I did then; I just wished they helped me get to the root of my depression and help me/ explain to me the grief process. Okay, back on topic! I wasn’t sure I wanted to go onto the behavior health floor again, but I did mainly to help ease Les’ stress. He didn’t want me to be alone for a minute by myself at home, which I totally get.
I spent 4 days on that floor, which is actually a pretty quick stay. I sure did have my mind set to do the work and change the course of my life and thought patterns and I was remorseful from the beginning which helped me make fast progress. The first night was rough. I had to sit up straight all night long due to acid reflex from the tube being in. My throat was a raw, sore, throbbing mess! I spent some time coughing up blood and tissue from having the tube as well. Folks….you DO NOT want to be intubated if you can help it! Learn from me!
An awesome therapist recommended EMDR (google it). It is often used for veterans with post-traumatic stress. I was willing to do anything…..absolutely anything to start healing, to see a glimpse of a brighter future at least. I did 2 sessions of EMDR for 2 different issues (visual flashbacks of Ryder dying and my triggers/anticipation/obsessive thought of numbers and dates). PEOPLE it worked IMMEDIATELY!!! Truly unbelievable stuff! It often works in 1 session (for 1 issue). If you are suffering from post-traumatic stress seek a therapist certified to do EMDR. LIFE CHANGING!!! I am going to continue EMDR at least 2 more times….one for drinking and one for sadness of a lost friendship. I will also be seeing the same therapist for counseling. I am joining a grief group, specifically for people who have lost children. I attended my first AA meeting today. I am getting outside daily (I was going days without even going outdoors). I am getting exercise and I am eating at least 3 meals a day. Those who know me well know this has always been an issue. I’ve never had an eating disorder or anything, but I’m just not a food person (except sushi…. I will eat sushi anytime, anywhere, on a boat and with a goat!)
Before I tell you how you can help, I wanted to mention one more insanely terrific life- saving moment (positively divine intervention in my eyes, but take it as you will). I have spent hours and days for the last few weeks trying to get my newly prescribed Xanax. I had just seen the doctor, I rarely ever take Xanax (maybe 2-4 times a year) and she wrote a new prescription since what I had was expired, just to be taken as needed. Each time I went into the pharmacy I spent a long time trying to get my insurance worked out. They kept telling me my insurance was canceled since January, but I knew that wasn’t the case and I refused to pay full price. I’d been getting my other medicine like Crestor and a hormone replacement patch without any problem what so ever, even the week before! I went in 3 times to talk to the pharmacy who keep telling me they would take care of it and call my insurance. I got 3 calls saying it was ready and when I went to pick it up (3 separate times) I got the same reply- your insurance has been canceled since January. The last try to pick up more Xanax was with Les on the day before I OD’ed. I would have taken those 30 more Xanax if I had picked them up. I wouldn’t be here right now.

I obviously am a very transparent person. I like who I am and I like being honest. I hope my stories and my journey will help someone someday. Part of my openness is also my way of taking responsibility and account for my actions. If I didn’t share, it would be much easier to stay in that dark place in my mind, to continue drinking and deny I have a problem. I ask all my family and friends, co-workers and people who care to help me monitor myself. You can do this by noticing my posts. I will always continue to miss Ryder, share his pictures, videos, and write about him. I will still have sad days. I promise to keep being open, but if you notice my post continuing to be sad for days at a time, if I write something that concerns you or if I try isolating, backing out on plans and becoming inactive or indecisive—these are my red flags that I’m not in a good place. Please reach out to me in some way. I do tend to be sensitive in moods like that, so words like Denise, I’m worried about you how is your mood today, or I am concerned because ….(no tiptoeing just tell me). If you don’t feel comfortable with reaching out to me or have a gut feeling I’m just starting to slip down that road again, you have my permission to contact Les (I can message you his # or message him on FB). I’m open and honest with you so please feel free to be open and honest with me.
It’s so humbling all the messages and calls I’ve received from so many people, including people I don’t know since yesterday’s post. I have had 9 people tell me that I was heavy on their mind and in their prayers last week and they didn’t know why, but now they know—WOW! I believe in signs people! If you feel that strange tug at your heart or in your mind about me or ANYBODY, check in on them immediately. Try to gauge their mood, most people don’t reach out or even realize they are sinking into depression. It was mentioned by a few people that actually saw me spiraling down into depression quickly, that they wanted to say something, but they didn’t know if it was their place or not. YEP, it is!!!! ALWAYS!!! Just use gentle words like, I’m concerned and I care about you….etc. It’s better to step on someone’s toes, make them upset, or feel uncomfortable yourself not knowing what to say than not to do anything at all when that 1 small thing can save someone’s life.

Thanks for all of your love and support!!! I feel it!! Know that I love and care about you too. Please know that I will be spending some quality time taking care of me, getting therapy, grieving in a healthy way (therapist have said I might just be starting grieving process since I’ve numbed myself with alcohol for so long),loving on my family, and limiting my time on social media (that sure can be addicting too, right??!!). I will not be able to reach out to my dear friends, who I know are having a tough time right now too. Don’t take it personally, don’t think I’ve left you or stopped caring, but please understand I need to help me first and will be focusing all my energy on making a bright new path.

Rock Bottom... but climbing up (Reason I've been MIA) part 1

So you may or may not have noticed that I have been MIA for a while. You may or may not have also noticed that my posts for several weeks prior were getting more and more somber…..
Here’s why. I spiraled quickly downhill the last 2-3 weeks and hit rock bottom last Sunday, July 27th. Anniversaries of Ryder’s 1st seizure & 911 call, quick regression, entering hospice, Make-A-Wish Day, 2 year angelversary, and birthday are all close together from July 25th- Sept 5th. I do have PTSD (post-traumatic stress disorder) and suffer from very vivid images and flashbacks of these events. My triggers are specific dates, numbers 22, 3, 8, 5, certain smells and certain places. On top of these approaching anniversaries, several more children that I love have passed away, I am sporadic with taking my anti-depressants, I haven’t been sleeping AND I decided to watch Heaven is for Real (excellent movie—just not excellent time to watch it.) So what have I been doing to cope with this all? DRINK….and DRINK and DRINK!! Basically, I have been numbing myself since Ryder passed away because it has been too painful for me to deal with. It was easy for me to convince myself I had it under control because I only drank at night time, I was completely functional, and I was being responsible in my mind because I would NEVER get behind the wheel even after 1 sip. So again how have I coped? I haven’t.
July 27th I started drinking early. We were planning on going fishing, but I backed out at the last minute so I can finish up the laundry and get ready for the busy week ahead. I cleaned, drank, looked at pictures of Ryder, drank, listened to sad music, drank, cleaned and drank---you get the idea. When the boys came home Noah went to his friends to spend the night and Les and Ty proceeded to the living room to watch boring tv shows that I had no interest in. I went to my room to look at more pictures and videos and just sunk deeper and deeper into a dark place in my mind. After a while, I went out to be with the boys again, but after seeing them comfortable and into the show I just decided to give them a kiss and tell them I was going to bed. I went to my bathroom (connected to my bedroom) and sat on the floor crying. I stared at the bottles of ambien and Xanax that I had sitting there. I knew alcohol is dangerous with both of those. I held them for maybe 5 minutes thinking….crying…. I put them down and decided to put on my butterfly pj bottoms, a cute little fake dragonfly tattoo Ty had given me, hold Ry’s teddy bear and blanket and then I went and sat for a bit in the bathroom again. I’ve been struggling with suicidal thoughts for a while and never acted on it. I have reached out for help several times before and just found myself feeling this way still…. I was permanently damaged in my mind and it wouldn’t get easier—EVER! I quickly swallowed both entire bottles of pills so I wouldn’t talk myself out of it like every time before…….. okay…I did it… it will end soon…..
WHAT DID I JUST DO?????? WHAT IN THE WORLD DID I DO????? I panicked, NO—I WANT TO LIVE….. I ran and got Les (life saving moment #1). The look on his face was something I never want to see (or cause) again. The pills quickly started taking affect. I remember Les calling 911 and trying to force me to throw up, sticking his finger in my mouth. That was all I remembered until waking up in the ICU Tuesday afternoon with a tube down my throat and my arms strapped down.
Filling in some of the details from Les’ account: it took about 10 minutes for the fire truck/ambulance to arrive and treat me. They were staged several houses down waiting for a sheriff’s deputy to arrive and give the okay (I guess that’s protocol for suicide attempts). Les dragged me to the ambulance and basically threw me in and backed away (knowing that was the only way to go against protocol). (Life saving moment #2- Les knew what to do being a former EMT/ firefighter). In the ER I guess Les would come check on me, but sat with Tyler in the waiting room. (Yes, my son witnessed a lot of this which is TERRIBLE!! No comments about this please- I feel bad enough and YES we are getting them support to process this as well). Les asked what the treatment plan in the ER was and he was told they would let me sleep it off thinking I just took a lot of Benadryl. (Life saving moment #3) SHE TOOK AMBIEN & XANAX!!!! I THINK THAT CHANGES THE TREATMENT PLAN!!!!!
Yep, it sure did. I had my stomach pumped. At some point I was intubated because I wasn’t handling other methods they attempted to support my breathing and I couldn’t breathe on my own. I was throwing up with the tube and was in distress trying to pull the tube out (Don’t remember this at all). They had to restrain my wrists to keep me safe and the tube in place…..


Okay guys…. I need to go to bed. I will continue this blog tomorrow. I don’t want to leave you worried—so know that I am okay. I am in a very healthy state of mind now, getting intensive treatment for PTSD, counseling, going to AA (sober road from here on out), and more----details tomorrow and safety/recovery plan. YOU can help me and I’ll tell you how….
I Must have an Angel watching over me and sure am grateful to be alive!
Goodnight!

Recreating myself and want to write again :)

I haven't posted in a long, long time. I haven't felt the inspiration to write since Ryder died. My life is being recreated... I'm a different person. I have a new purpose that keeps my heart beating. There is so much drama and meaningless problems in life that I'm trying to process through. Yet...life is simply beautiful. Everyday, all I can ask for is a positive meaning, something beautiful that happened and something I did to contribute to make it a good day. This day, I hugged my boys, told them how much I loved them, hugged my hubby and appreciated him, reached out to a Mama in need and educated her on her rights, and treated myself to some much needed down time. It seems simple to me. I can do more...give more! I have so much in my heart to share and give! Yet, I feel so very alone. I love to write, to share Ryder's story, to educate, do crafts, be in nature, take photos and sleep :) I know I am important. I am making a difference. I am loved. I am Gods daughter. I pray to live my purpose in life and feel the comfort of the Lord and my family and friends to get through this life, until I am reunited with Ryder. My words don't flow as eloquently as they used to...hoping to get my groove back some day :)This post is me attempting to get back out there! I want to write again,but don't have a topic! Any ideas?

Auntie Jen's beautiful thoughts :)

From Auntie Jen.....

Today’s happy thoughts are just about Ryder and how awesome his life was in 3 short years! He visited the forests of Northern Arizona, beaches of California and the glaciers in Alaska! He went to professional baseball and hockey games. He watched his not so professional brothers and parents games. ;) He found a passion…swinging a bat and running his heart out. He floated around in the Diamondback’s pool. He ate marshmallows, cookies, and ice cream. He never asked for anything, but had every kind of toy a little boy could want. He rode a bike. He drove a car. He had style...a hat or helmet ready for any occasion. He experienced a first kiss from a little sweetheart. He didn’t have a worry in the world and never had to experience heart break. He had dance moves that entertained all. He laughed and laughed and laughed! He had charm and knew just how to get others to laugh too. He had the looks of an angel all along with those long lashes, blue eyes and joyous smiles. He was and continues to be a role model and teacher. He opened the hearts and minds of thousands! After all, how many 2 year old's have over 500 friends in all parts of the world, and over 43,000 reads on his blog! But best and most of all he had love! He loved everything and everyone. He agreed to just about anything…what’s there to be afraid of! He was pure love inside and out, and everyone immediately loved him right back! Someone is always thinking of him at every moment of each day! He had 2 awesome older brothers to show him the ropes and play with him whenever he wanted. He had a mommy and daddy that would move mountains or just cuddle with him. He had a big extended family to surround, support and spoil him. That lil’ boy learned about love from the get go, but he taught everyone in two-fold…so much love it’s just so awesome! I can’t think of a better way to have lived! ♥


Ryder Cash Hauer


Ryder's Celebration Montage ♥

IT'S HERE!!! TGen video--starring ME :)

I am so excited to be able to share this video!! TGen staff and their amazing camera crew came to Parks, AZ to interview me :)This is the final product!.......WARNING you may cry so get the tissues :)

MUST READ: Where Are the Parents?

For all my teacher, therapist, special needs parents, social worker, doctor, nurse friends--or those who want to get a glimpse into a parent of a special needs childs life---READ THIS!!!!! Seriously, as much as I'd like to think I was a great, empathetic special ed. teacher---I never fully understood until I had Ryder. This hits home for me!!!!!!!!

Where Are the Parents?

By Sue Stuyvesant, Parent

Reprinted with permission from the Forgotten Kids webpage

Hey everyone. For those of you who don't know me (I'm only an occasional poster) I am mom to Michelle, 9 years old, microcephalic, athetoid/spastic CP, cortical visual impairment, seizure disorder -- and CUTE! OK, now for the reason I'm posting.

To make a long story short, earlier this week a question was asked by some nitwit official as to why there weren't more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was, "Where are the parents?" I went home that night, started thinking - and boy was I pi**ed - and banged this "little" essay out the next day on my lunch break. By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around.............

Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive.

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact.

Dream Catcher

Wow has life changed so much this year! Tomorrow (June 22) marks the 10 month anniversary of Ryder joining the Lord. I debated continuing this blog, but I am really hoping to help those who are on my same path. A handful of you are dear friends and your children hold a piece of my heart as well. Even though our journeys will not be the exact same, I want to give you a glimpse inside my mind, maybe give you hope for a future beyond the unthinkable, and to understand we are connected and will always have an eternal bond. I will be here for you always.....whoever reads this--be it years from now...I am here for YOU!!

10 months.....wow. It is such a LONG, short time to be without my baby. The deep pain and heartache has changed in time.

In the beginning after Ryder died I was so numb. I wandered aimlessly, couldn't sit still for long, couldn't sleep, didn't want to talk to anyone, was annoyed with everyone and was in complete shock--denial. I could give a shit less about eating, bathing, getting out of bed.... or talking to anyone--nothing mattered.

Once Ryder's death hit me, it decided to come at me hard--throwing punches in my heart, my lungs, and deep in my soul. My sweet son was DEAD!!!! DEAD!!!!! His body was incinerated. He is not here. I can't hold him. I can't hear him. I can't see him. He is DEAD--ASHES!!! Yes this is graphic----but this is the ANGRY phase. MY BABY IS DEAD!!!! This is tough enough to write, and I'm sure tough to read, so I will not give the graphic visuals playing through my mind constantly during this time. I want these visions to stop. It is way to much, it hurts so bad......I want to die.......please let me die.

I'm physically and emotionally ill now. I don't shower...fuck it. I rarely get out of bed. I'm not being a good mother, wife, friend, sister, daughter---whatever--fuck you for trying to make me. I hate you. YOU don't get it. YOU haven't lost a child! YOU don't know my pain!!! Don't tell me what to do and don't tell me YOU are suffering as well for MY son. Fuck you!!!!!

I'm SOOOOOO sorry for my recent behavior!!!! I'm not myself....if fact, I don't know who I am anymore. I feel so weird, lost, alone! I NEVER cussed before...don't know where that came from! Thank YOU for loving me and loving Ryder!!!! Thank you for caring. I know YOU hurt for me.....YOU miss Ryder too!!!I'll get out of bed for Ty and Noah. I need help!!! I can't do this alone anymore. I'm dying inside and I don't want to......I need help.

It's been 7 months and I got help!!!!! I got help for myself, Tyler, Noah, Les and YOU!!!!!! Everyone was proud of me and amazed I asked for help after 7 short months. I think I CAN LIVE!!! It still feels kind of strange. I'm okay most days, but I still sink sometimes. I cry, sob, scream for you still. I miss you Ryder. BUT-- I don't want to die...... I WANT TO LIVE NOW___REALLY LIVE!!!! I want to dream big---and live my dreams!!!

Guess what Ryder? Because of you my little teacher, I AM LIVING---IN MY DREAMS!!!!! We have moved to a beautiful, dreamy location. Daddy has opened up a bicycle shop, and I just accepted my dream job of helping other special parents!!!!

I miss you little man. I love you. I think of you always. I'm inspired by you. I still ache for you. But, I have also decided to keep my promise to you....before you died, I told you "it's okay to go Ryder, Mommy will be okay." I will be okay sweetheart.

I always feel relief when I pray. I ask the Lord every night to hold me, so I can sleep. I ask Him to help me each day. I want to do His will. I CAN do this baby!!! It's hard.....it sucks, I'll always have an aching hole in my heart, but I will LIVE this life for you Ryder. I will make you smile as you made me smile for 3 years!!!

Until we meet again sunshine----continue showing me the way.

Focus on living ‘IN’ the moment

My niece and I went to get our first tattoos together--something we've planned for awhile! Sapphire represents Ryder's birthstone color, the dragonfly (if you've followed www.rydersjourney2009.blogspot.com you'll understand) and of course the halo for my very LOVED Angel ;)

Symbolism's of the Dragonfly

• Maturity and a Depth of character
  The dragonfly, in almost every part of the world symbolizes change and change in the perspective of self realization; and the kind of change that has its source in mental and emotional maturity and the understanding of the deeper meaning of life.
  
  The traditional association of Dragonflies with water also gives rise to this meaning to this amazing insect. The Dragonfly’s scurrying flight across water represents an act of going beyond what’s on the surface and looking into the deeper implications and aspects of life.

• Power and Poise
  The dragonfly’s agile flight and its ability to move in all six directions exude a sense of power and poise - something that comes only with age and maturity.
  The dragonfly can move at an amazing 45 miles an hour, hover like a helicopter fly backwards like a hummingbird, fly straight up, down and on either side. What is mind blowing is the fact that it can do this while flapping its wings a mere 30 times a minute while mosquitoes and houseflies need to flap their wings 600 and 1000 times a minute respectively.
  
  The awe inspiring aspect is how the dragonfly accomplishes its objectives with utmost simplicity, effectiveness and well, if you look at proportions, with 20 times as much power in each of its wing strokes when compared to the other insects. The best part is that the dragonfly does it with elegance and grace that can be compared to a veteran ballet dancer. If this is not a brazen, lazy, overkill in terms of display of raw power, what is?

• Defeat of Self Created Illusions
  The dragonfly exhibits iridescence both on its wings as well as on its body. Iridescence is the property of an object to show itself in different colors depending on the angle and polarization of light falling on it.
  
  This property is seen and believed as the end of one’s self created illusions and a clear vision into the realities of life. The magical property of iridescence is also associated with the discovery of one’s own abilities by unmasking the real self and removing the doubts one casts on his/her own sense of identity. This again indirectly means self discovery and removal of inhibitions.

• Focus on living ‘IN’ the moment
  The dragonfly normally lives most of its life as a nymph or an immature. It flies only for a fraction of its life and usually not more than a few months. This adult dragonfly does it all in these few months and leaves nothing to be desired. This style of life symbolizes and exemplifies the virtue of living IN the moment and living life to the fullest. By living in the moment you are aware of who you are, where you are, what you are doing, what you want, what you don’t and make informed choices on a moment-to-moment basis.
  
  This ability lets you live your life without regrets like the great dragonfly.

• The opening of one’s eyes
  The eyes of the dragonfly are one of the most amazing and awe inspiring sights. Given almost 80% of the insect’s brain power is dedicated to its sight and the fact that it can see in all 360 degrees around it, it symbolizes the uninhibited vision of the mind and the ability to see beyond the limitations of the human self. It also in a manner of speaking symbolizes a man/woman’s rising from materialism to be able to see beyond the mundane into the vastness that is really our Universe, and our own minds
  
  
  
   Kayla got the saying "Go Carefully" in her mother's handwriting with a Harry Potter lightning bolt!
  
  
  
  
  
  
  

Happy Days along with the crazy!!!!

It's been awhile......
As usual life is fast paced for us :) We are having many more happy days than sad days around here which is nice to report. Let's see, since my last blog I have written a children's book which is being illustrated and made into a DVD at Evit, I have started a novel (stay tuned next year!), I had a lovely visit from a very dear high school friend- Kate and her kiddos, as well as several fun get togethers with Suzanne (bestest elementary/high school buddy!), we have been packing up getting ready for our big move, I checked myself into the hospital, we got our keys to the new house in Parks, Les' Granny passed away (we spent a lot of quality time with her), My sissy-in-law Amber and my insanely cute 4 mo. old nephew  Gunnar (who told me I was his very favorite Auntie in the whole world always and forever)came to visit, we are having some health issues with our middle son and have gotten both boys tested for the POLG mutations that Ryder had, I am on the job hunt, I went on a retreat with 50+ women that have lost a child, I survived my 1st Mother's Day without Ryder, we started Light Horse Bicycle Company (www.lighthorsebicycles.com) and MADE OUR FIRST RENTAL SALE --YAY!! I don't want to go on and on about everything happening so I'll break down the interesting stuff for you. Feel free to ask me anything else you'd like to know :)

1. Yep--checked into an inpatient hospital. Packing Ryder's things, being alone & isolating myself the majority of the time, not sleeping and not taking my "happy" pills regularly (no offense to anyone on anti-depressants--just my sense of humor) really took a toll on me. I KNEW I needed help. I started wanting to sleep all the time and not functioning for my sweet boys. I met some amazing new friends, cried, poured out my heart and feel much better after the short break from life. I also learned how to make meth, clean drugs (like heroin) and a lot of new lingo!! (Again--my sense of humor!) Really though, I enjoyed learning about everyones stories and have much RESPECT for those seeking help--it's not easy!
2. The new place in Parks (between Flagstaff and Williams, AZ) is AMAZING, peaceful, beautiful and abundant with nature. We will be living on 10 acres of God's most beautiful land in Arizona :) We welcome visitors!!!
3. I'm worried about Noah, our 7 year old. After some behaviors we noticed the counselor suggested we take him to a GI doctor. I wasn't sure if it was related to post traumatic stress from losing his brother or a health issue. I have had a deep rooted feeling that something is not okay with Noah for 2 years. I've brought it up to all doctors, but it was always blown off. Ryder's health was their main focus and I feel like they thought I was projecting my worries onto Noah. This uneasy feeling is still very alive. To the point--we found out Noah is severely constipated and his clean out attempt with 2 pills of Doculax, exlax and 14(!!!!) caps of Mirilax did not work. He had blood work done which ruled out Celiac's Disease. It did show elevated TSH, but normal T4 (concerning thyroid issues--but the normal T4 makes it less worrisome). He will be closely monitored this month and retested next month. He is having a MRI of his spine (which he needs anesthesia for) next Thursday to hopefully rule out a tethered spine. MY MAMA instincts decided to skip much of the BS and ask our FAVORITE doctor in the world to order a cortisol and ACTH plasma test as well. With Noah's darker skin (with no tan lines), GI and urinary issues, and seemingly wacky body temp control (cold wearing sweaters when it is HOT and wanting to wear shorts and tank tops when it is COLD!) I worry about Addison's --adrenal insufficiency. I'm not sure if the elevate TSH plays a part or is just a coincidence or false report.  Both Tyler and Noah have gotten blood drawn to test if they are carriers of the POLG mutations Les and I have which resulted in Alper's for Ryder. I had to stop researching my nursing books and the Internet tonight for other disorders a POLG mutation could cause--maybe for Noah. CAN'T go there :( As you can imagine, I am PRAYING, crossing my fingers and toes that I am overreacting and Noah is just fine. Time will tell....
4. I am on a job hunt!! I've had several interviews, got the position, but turned them down. Some were super awesome, but didn't have benefits or pay well. I have several other options, but I am most excited about an opportunity to work for Raising Special Kids as a family support coordinator!!!! This would be my dream job right now :) Again....time will tell.
5. Mother's Day was tough, I MISS my Bubba, but I did catch a fish, saw so many dragonflies and frogs and spent quality time with Noah at the new house. Tyler decided to stay with Grandma because of the long drive and the fact he'll be up there soon enough for good.---REALLY I believe it was to be spoiled, eat junk food and have all of Grandmas attention!
6. Light Horse Bicycle Co is really happening! It's ON peeps :) Check out our website, stay tuned for my first blog about getting fit and health, losing weight and this clumsy woman learning to mountain bike!!! I've already lost 9 lbs thank you very much!!! It may or may not have been partially from getting lost in the desert for hours on my first ride ;) Also check out The Nordic Center for beautiful trails, camping sites and a place to rent our AWESOME bicycles :)

Well, I think that wraps up the last few months! Please leave a comment, join the sight and continue to follow our trails and trials of life!!!


Here are some pictures around our new property!!!

 unedited beauty!!!

 Baby Gunnar--how cute is he?????

Lean On Me

Something is weighing heavily on my heart lately and I need to express it. It will not please some of you, but this is the raw me—like it or not! You know when you are in high school and there are those clicky groups…that you are excluded from if you don’t fit the bill?  Well, I feel like I’m part of that group lately….and trying to expand it to others that are in the same boat, but not exactly alike! I feel like that “group” is starting to exclude me because I’m not loyal to them alone.

Rare diseases to me are just that----rare, and many people haven’t heard of them. If I say ugly words like cancer, CP or MS most people know what I mean. What if I say just as ugly words like Alpers Syndrome, Krabbe, MLD, AGS, Leukodystrophy and Mitochondrial disease….would you know what I was talking about?

Would you want to support a 2 year old child suffering from Alpers more than a 2 year old suffering from MLD? Life threatening diseases are real and devastating. If you lose a child from cancer or leukodystrophy...the devastation is the same. It’s a nightmare and heart wrenching—something most people will never and should never understand.

Would you focus your attention on research and support for one rare group or all the children fighting yucky, rare life threatening diseases? Would you raise money in one child’s memory or all the children gone to soon? Most don't know--but many mitochondrial diseases, leukodystrophys, autism and behavior disorders are intertwined.
My beautiful son Ryder passed away 8-22-12, 2 weeks shy of his 3^rd birthday from Alpers Syndrome. I LOVE AND MISS HIM beyond your comprehension. My Mom opened a special funds account in Ry’s name: The Ryder Hauer Fund for Rare Childhood Disorders. This fund supports Dr. Narayanan and TGen 100% on their quest to help children with ANY rare childhood disorder. My heart expands to children with mitochondrial disease, leukodystrophy, cancer, blood disorders…..on and on—EVERY CHILD deserves a lifetime no matter what “label” they are given. I wish all families going through the heartache of watching their child suffer—a supportive community, peace of mind and much love to surround them in their most trying times.

I am here to help any family experiencing a loss, unknown diagnosis, life-threatening diagnosis or just someone to lean on! Life is hard, but with God and each other we will get through this.

Dos and Don’ts for nurses from “that parent.”

I wrote this one night I stayed at the hospital with Ryder and never posted it. It may give all my nursing friends and new graduates something to think about! :)

Dos and Don’ts for nurses from “that parent”

Don’t

1.       Leave caps, alcohol pad wrappers etc. in the patients bed or on the floor

2.       Judge: while it is a nice concept that parents should keep a normal routine for their child in the hospital it isn’t that easy when aides are coming in every 4 hours for vital signs (day and night), nurses and doctors are coming in around the clock, volunteers and staff that get to know and love your child come in at 10:30 p.m. to visit and wind up your child and the many machines that beep for different reason’s around the clock as well. Really—how do you suggest I make a normal routine out of this?

3.       Make inappropriate comments, especially when parents/visitors can hear. I listened to an RN making fun of a parent who was bringing her child for a walk in a wagon early in the morning about how the parents hair was messy and out of place and how she would never be seen in public like that—hmmm try spending a month with your child in the hospital. Would you really care how you looked??? I also heard a few nurses complaining about a child that was noncompliant and didn’t want his TPN

4.       Turn off the call light without responding to it. Nothing ticks me off more than pressing the call light and having it be turned off 10 mins later w/o anyone checking what we need. I turn it right back on and it is turned off again after 5+ minutes. I don’t call for assistance often, and when I do- it’s not for my entertainment or to be waited on. If you are busy, kindly send in an aid, the huc, another nurse—anybody!! (or simply ask what is needed over the intercom).

5.       Please don’t assume you know my child or a loved one more than you do. He is probably feeling blah/blah/blah—Well, no, actually he is having nerve pain. How do I know this you ask? It comes from years of learning what every facial expression, movement and sound mean, not to mention the in depth research I have done to understand the disease process that my son is experiencing.

6.       DON’T give meds when you don’t know what they are or what they do!!!! And don’t respond to a parent,”I’m not sure actually” after a parent asks what the medicine was for that you just administered!

7.       Assume anything!!! EVER!! Not with doctors, patients, parents—ANYBODY!! Get clarification. Me: “Can you please empty my son’s G-tube content into his feed this afternoon (per doctor’s order) and I will do the one tonight? My Mom will be watching him for several hours so that I can have a break. Nurse: “sure.” Several hours later, I returned to find out the nurse in fact didn’t do it and reported to the next nurse that, “his mother didn’t want him to become upset when his grandma was watching him, so she wanted to wait until she got back.”

8.       Don’t expect your aide to always know what you expect. I have had to tell several aides at shift change to record my sons’ diaper output separately from the output from his continuous vent drainage from his G Tube (which also goes into a diaper , so it’s understandably overlooked, but could have big consequences)

 

 

 

Do

1.       Answer call lights in a timely manner (not 15-20 minutes later) As a parent it isn’t fun holding your very sick child who has vomited all over their clothes and bedding while they cry and shiver when all you can do is cry with them and call over and over for help.

2.       Say hello & good bye at the beginning and end of shift (unless they are sleeping of course).

3.       Your job, don’t expect parents to do it. Yes, parents need to learn how to take care of their kids when they go home, but really, it isn’t necessary to wake a parent who hasn’t slept well for months to change a diaper or skip collecting stomach content to replace in a gJ feed because they don’t want the child to be upset when their Grandma is relieving Mama for a few hours for

a much needed nap (while forgetting to unclamp the tube that is supposed to be on continuous draining).

4.       Be truthful in a professional manner if you do not know the answer to something. Something like, that’s a good question, I don’t want to misinform you so let me go find out and I will get back to you as soon as I know!” (Make sure to keep your word and get back to the parent!)

5.       SMILE J

6.       Try to relate to parents and talk to us. We get stir crazy being in the hospital!

7.       Point out how cute and adorable our kid is—well, if you have to reach on some kiddos (not mine of course) make a comment on the child’s strength. It is always nice to hear a compliment and parents with medically fragile children often hear nothing but negative news.

8.       Set all the machines so they won’t beep at different times around the clock! Several nurses do this for us. It can be done!!! (Don’t ask me how though).

9.       Educate parents on all the possibilities to help their child. Learn as many little tricks as you can! We have struggled for almost a month in the hospital to brush our sons’ teeth every day. I have asked for any ideas many times. A few days ago, an awesome nurse gave the suggestion to use the oral care attachment for the suction machine!!  It’s working wonders!!

Time keeps ticking

I am writing just because I haven’t written for awhile. I’m trying to get a feel for it again, but I’m not sure I have anything inspiring to say.

Time keeps ticking on after you lose a loved one, but my mind has yet to truly come to grips with reality. I know Ryder died. He is gone forever in this lifetime. I understand this, but for some reason every single morning, right when I wake up, I have a beautiful 2-3 minutes as I become alert and oriented to the new day. I don’t think of anything in particular. I stretch and adjust to the light shining in through the blinds. The world is right for a short moment. Then, I feel Button (Ryder’s teddy bear or Patches –bear made from his clothes) in my arms. I feel the quilt my friend made for me from Ryder’s clothes as well. I sit up and reality hits me—most mornings punches me with the fact that Ryder is not here again today and never will be again….in this lifetime.

I find myself wanting to sleep in more each day, maybe so I don’t have this harsh attack hit me or maybe because I can’t seem to find any meaning in life now. Yes, I have many blessings still. I cherish my amazing husband and sons Tyler and Noah so very much. They are why I do manage to wake up. However, depression weighs heavy on my heart and I battle it with courage all day long until I can take pills that let me rest at night and get me through to the 2-3 beautiful moments the next morning.

I am not giving up—and I never will. I just have a difficult battle at hand. Today marks the 5^th month without Ryder. The 22^nd of the month (day Ryder passed on) likes to fall on me with a ton of bricks. I’m starting to prepare earlier for this reaction so it isn’t quite as heavy. In the last few months I’ve tried to discover the new me. I spent over 2 weeks in Chicago, Minnesota and Wisconsin with friends and family. It was a wonderful healing time for me! Besides catching up with Cassidy and spending precious few and far between time with Les’ family, I witnessed a miracle! My sister in law, Amber had her son Gunnar and I was in the room. I experienced pure joy, amazement and love. Amber delivered Gunnar at a birthing center, with a mid-wife all natural. Ummmm---besides the crazy strength of delivering a child naturally (which she has done 4x’s now!) Amber inspires me greatly! She just graduated with a Bachelors degree in nursing. Even though she was a teen mom and all odds were against her, she won and came out on top! I’m so proud of her and my brother-in-law, Brent, who supported her and 3 kids while she was in school! So after that experience I thought being a mid-wife would be my new life’s purpose. I had said I didn’t want to be a nurse anymore for the past several months, but got a phone call while in Minnesota that 1 more opening was saved for me in the 3^rd block. I called Les and talked to my in-laws. I decided to go back to school. I wasn’t overly excited, but since I was half way done I thought I’d just finish the program. I went to the all day orientation, got my tb test—again ($35 later!) and aced my math test. I still wasn’t feeling it, but ready to get out of bed with a purpose. The first 15mins of the first day of lab skills let me know for sure I am not meant to be a nurse. I had a meltdown! We were learning about how to give IV’s to children. When I was trying very hard not to think about all Ryder’s IV’s, I was upset with how they were teaching future nurses how to give IV’s!!! I believe nursing is a good career, but good nurses have sympathy, think outside the box and go above and beyond what they are taught. I really think I would have been a great nurse! I don’t however think most doctors would have liked me, nor the teacher’s in the nursing program lol! I can’t be around illness and pain the rest of my life. I thought about being a Child Life Specialist also—which seems perfect. However, there are no CLS in Flagstaff, which is where we are moving in June. I know someday I’ll find my new calling. I need to practice patience’s within myself until then.

I didn’t pause to mention earlier that 3 days before I went back to school I had surgery. Nothing serious, but very painful I’m discovering!! I got a bladder sling placed. Three kids plus a hysterectomy= weak bladder! It is a 1 week no driving or work time; 2 weeks expected pain and 2 month full recovery time w/o lifting more than 10lbs. I rushed classes. I didn’t take pain meds so I could drive and I suffered through it. Of course I ended up with a UTI and continue to be in pain (it’s still been less than 2 weeks though). I get bored so easy and hate lying around. I feel useless!

The rest of the family seems to be getting in a new normal routine. We go to grief counseling 2x a week. The boys really look forward to it and it seems to be doing wonders for them. Les and I go for the boys. Most people in the group have lost a parent, spouse or grandparent. I am not minimizing their pain at all, but I feel a child is in a totally different category. I am considering counseling for myself, but haven’t decided yet. The boys are doing well in school again. There have been rough days, but it’s to be expected with all they have been through. We are spending a lot of quality time with them as we understand the importance of each moment in life.

Les works hard each day to serve his students and schools. He is so amazing! I know he is grieving too, but he manages to support me through my grief. Not only does he work hard as a liaison for special needs teens, but he is writing business plans, perfecting details, and talking to everyone he can to open Light Horse Bicycle Company. We have been in Flagstaff every chance we get to scout for the perfect location for our bike shop. I think we found one, but I’m trying not to get my hopes up. To top it off, the first thing I noticed pulling into this property for the tour was a huge dragonfly ornament hanging in the back of the property! If you’ve followed this blog you will understand the significance. We are searching for financing possibilities as we are very limited now. We are looking for someone to buy this perfect location (reasonably priced land, plus 2 stand alone commercial buildings—one being leased for $500 already and a cute 4 bedroom house w/storage shed in a prime location!) and willing to lease to own for us. If you or anyone you know is willing and able to make this risk free investment in us PLEASE contact me!! 480-600-5461

Does anyone have ideas for me to possibly pursue in the future? I don’t want the medical field and I’m not so sure about going back into teaching. Any other ideas? I would love to support the bike shop 100%, but we need medical insurance.

Thank you so much for reading this blog. Although it was long, it felt good to write. xoxo

The dragonfly ornament that I 1st saw on the ideal property...a sign maybe?!

I still would have chosen you Ryder! I love you angel.

Gunnar Babcock, my adorable nephew that I witnessed enter this world! He has on his dragonfly outfit I bought him :)