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:
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