Thursday, September 20, 2012

Learning to navigate through a different life

Learning to navigate through a different life

I didn’t want this life, it sure isn’t what I planned or dreamed of, but it is my life and I will LIVE it. I will use my gifts and I will give of myself. I will give to my husband, my sons, family, friends, community and world what I was born to give.
What that means, I’m still discovering everyday! I love to teach, create, sew, paint, write, laugh, read, learn, comfort, explore and be around people, mostly kids ;)
I have lived for 4 weeks and 1 day without my baby. Four weeks and 1 day of crying, screaming, smiling, remembering, thinking and praying about where to go from here. I still don’t know for sure. I am finally able to make commitments…..small ones, but I’m doing it!
My first outing since family and friends have left after Ryder’s celebration was to the Clayton’s. I planned on going myself the day before, but couldn’t even manage to get out of bed except to pick up the boys that day. I felt horrible. I am not one to cancel plans. After talking to Tammy, we decided to plan a family get together the next day. It was later and Les would drive me, so I had extra encouragement to leave the house (and my bed). Tammy has 2 beautiful children with Leukodystrophy and 3 other sons that we adore. I really liked being there. I was comforted by the wheelchairs, feeding pump, and constant need from kids. I felt normal again. It felt like home!
My second time out was to our first softball game of the season. Les and I play on a co-ed team. I haven’t played for almost 2 years due to nursing school and caring for Ryder. I was excited all day. I even bought new cleats, instead of my duck-taped ones from the last tournament I played in! When we got to the field early to practice, one of our teammates asked”Where are your kids, don’t you have like a ton of them?” Ugh….I smiled and said “our sons are playing over there.” It ruined my night. It wasn’t her fault obviously, she had no idea. It just reminded me of my new reality and how I will be asked questions like do you have kids, where do you work, and where do you live…easy topics that most new people ask. I can’t answer them flat out honest though without a long story. “Yes, I have 3 boys, but one is in Heaven, I was a teacher for 12 years, then started nursing school, but quite half way through to care for my son, now I’m just trying to get through each hour..How about you, what do you do? And of course… we live with my Mom. We couldn’t afford our house because I quite working to stay with Ryder and medical bills pile up quickly!” I think those answers would be too much for most people don’t you agree! Sometimes, I feel like I’m not sharing Ry’s life with others if I don’t tell people honest answers to what they ask, even if it is just a “filler” question when they could care less about the answers. I just have to learn to answer them depending on where I am and who asks. Anyways (back on track), after that innocent question I was a grumpster. I did okay during the game, being my first time playing in so long. I did sprain my finger----running---though!!!! Seriously, only I could hurt my finger running! It wasn’t my fault though. The short stop ran right in front of me while I was running full speed to 3rd base. It hurt so badly and I wanted to cry. I knew if I cried I wouldn’t stop, so I kept playing. At the end of the game I ran into an old friend. It was awesome to see her!!! She knew though. She knew I was trying to be normal and I was out of bed attempting to live. I teared up partly because my finger/hand was throbbing and partly because she understood how hard it was for me to be participating in life, but I held it together until I got home at least.

Now, I’m just living everyday with reminders all the time. I tell myself to get out of bed, to brush my teeth, shower, pick up the boys and help them with homework. I’m making progress- cleaning the house some, making appointments, calling friends and even volunteered at The Breast Cancer Society today. Small steps, but I’m living! I see signs of Ryder a lot. I really love when others share their signs of Ryder’s presence with me also (sunsets, dragonflies, memories). Can you believe my sister saw a GOLD dragonfly when she was having a rough day (not yellow—GOLD)??!! I wrote in a post a few weeks ago about seeing a gold dragonfly!

Yes, for all those wondering, I am taking care of myself. I went to the doctor who prescribed ambien to help me sleep. I tried it twice and it doesn’t work for me. I’ll fall asleep, but wake up 6-7 times anyways. I’m reading a little and exercising some daily. I eat when Les makes food—nothing new! I signed up to do the color run 5K in January with my sister! I also registered to be a bone marrow donor. Like I mentioned earlier, I got out of the house to volunteer today and plan on getting involved with spreading mitochondrial disorders and Leukodystrophy awareness. I’ve been attempting to write, but really am not inspired like I used to be. I make it a point to play a game and spend time with the boys every day. And I signed us up for grief counseling through The New Song Center. I’ll keep on chugging along—and hopefully find my new purpose someday soon.

Saturday, September 8, 2012

Butterfly Wishes; The Perfect Celebration of an Amazing Life

When I felt Ryder's time with us on Earth was near the end I talked with my sister. I have the most amazing bond with my sister. She just gets me. We are very different, but yet so connected with each other, it's awesome! I told my sister my dream of what an end of life celebration for Ryder would be like. I wanted it at the Wright House (where Les and I got married); I wanted a butterfly release, dancing, colors, a montage and happy memories. I knew after Ryder passed I probably wouldn't be able to think straight enough to plan this dream celebration. However, the BEST SISTER in the world made sure it happened for me, our family and Ryder! She was suffering right along with me, but she made it all happen and so, so much more! What an amazing celebration we had!

September 5, 2012
Ryder's Celebration of Life. Ryder would have been 3 years old. He celebrated in Heaven this year. I'm sure he partied with us at the Wright House as well :) Jen made sure all of my dreams of the celebration came true...Wright House, butterflies, colors, montage and dancing. She also made it more memorable and awesome then I could have even imagined!!!! She added a face painter, balloon artist, magician (which turned out to be a little wacko--lol), balloon release, tons and tons and TONS of food, a super fun photo booth, beautiful, large photos of Ryder, a photographer and catering staff (volunteer students from Highland High school!!!) It was so, so, so FUN!!!!

We had HUNDREDS of people join us!!!! Family from Alaska and Ohio joined us. Most of our Arizona family (Uncles, Aunts, cousins and Greats of each, nieces, nephew), A very dear friend from Delaware flew out to be with me. Elementary school friends, high school friends (and a few of their Mom's/family),old roommates, Minder Binder and Jackson's on 3rd peeps, coworkers of Les' and former coworkers of mine (Ty's 1st grade teacher), former students, nursing school friends, Ryder's therapists, Leukodystrophy families and friends, long time family friends & neighbors, Grandma and Nana's friends, Auntie Jen's friends, the boys principal and Noah's K & current teacher, amazing Child Life specialists and of course Doctor Narayanan and his wife attended! There were so, so many people (many surprisingly unexpected guests) from all walks of our life that joined us to celebrate, laugh and cry with us. It was BEAUTIFUL and PERFECT!!!

Tyler and Noah wrote and spoke lovely memories of their brother. Les and I also gave our own memorials of our sweet angel. Chaplain Charlie gave a beautiful speech and Auntie Jen read the legend of the butterfly release. I will post all of our speeches soon for those who couldn't attend.

My talented friend Jocelynn (Wicked Good Cake Company--check it out!!), made the most spectacular 3 layer cake! Jen spent many, many, many hours (with help from Alicia) putting together a beautiful montage with the songs, Forever Young and Here Comes the Sun. She also put together hours of pictures that played inside. Our great friends/family) Mike (& of course Jen), Mike & Holly, Aunt Janet, Kristie and my Mom stayed to help clean up.

This PERFECT day came together in less than 2 weeks! Jen you ROCK, I love you and I appreciate you so very, very much. I'm sure I forgot to mention some of you that also helped, but THANKS from the bottom of my heart to everyone who made this day so special :)

There was a guest book (that fell apart--long annoying story) but it wasn't the final book. If you can please comment on one--or several of these pages I would LOVE to add them to the final copy, even if you have never met Ry or didn't attend the celebration(just leave it in a comment):
1. What Memories do you have of Ryder?
2. Write 1 word to describe Ryder.
3. What memories of Ryder make you smile?
4. What still makes you think of Ryder?
5. What lessons have you learned from Ryder?
6. What do you think Heave is like?
7. What do you think Ryder is doing in Heaven today?