I have been looking

for this picture for a while.  It was taken at Eddie's center when they were having a Halloween party and obviously he was Elvis.  My mom did not have any Elvis music, so she brought a cd Eddie had made a few years earlier.  I remember her giving the cd to someone so it could get played for all his friends.  Within minutes,the cd plays and Eddie is singing his version of Elvis'song, "Blue Christmas." Every time I hear Elvis, it kinda reminds me of Eddie and how great he looked. The glasses were a great touch, but the microphone he had just made his costume perfect.  If my mom hadn't begged me to go, I probably would have had an excuse to stay home. I would have missed the chance to see how great Eddie looked and how happy he was that we stopped by. It makes me smile knowing that Eddie always had that "Elvis hair," even when it wasn't for a costume and I have to giggle thinking about the time we spent at his center.  My mom and I have a few inside jokes from that day and I am really glad I got to share a special moment with my amazing brother. I am wondering if my memorial tattoo for Eddie should somehow include Elvis..I know if I do then it will always make me smile.

It hasn't been two months yet..

and it seems like people expect me to be over it already. I am supposed to be worried about play dates and making friends and back to normal. I don't know how to do it. Be fine with the fact that my brother is dead and all the circumstances surrounding his death have not been dealt with. Every day I look in the mail hoping to find an apology from Kaiser for everything they did wrong and the pathetic hospice care that was provided for Eddie.

When Eddie was born, he had multiple complications. He endured so many surgeries that I remember him in a body cast most of our childhood. I don't know how he did it. My son, Max, fractured his femur when he was not even four and those were an intense few months.  There was nothing I could do to make it better for him. The first night, he was tearing at the cotton in the cast saying that he didn't want to "wear the mummy cast anymore". I felt completely helpless and fully responsible, since I was the one who purchased the trampoline that caused the fracture in the first place.

I can't imagine how my mom must have felt. Leaving him in the hospital, the few months after he was born, until he was healthy enough to come home. Having to figure out how she was going to afford the taxi rides to visit Eddie, since my biological dad left her with nothing. Not knowing how long she would have Eddie, since the doctors gave him less than a year. Always having doctor appointments and major surgeries filling up her calendar. Eddie practically lived at the hospital.

My mom put all her trust in Eddie's doctors to make sure he was ok. Every decision that was made, she went with what the doctor suggested.  She never second guessed them. When Eddie started getting sick, the doctor from emergency told us that he simply had ulcers and acid reflux. He went to emergency two more times before they did a thorough exam and found the cancer. I can't remember exactly where it spread, bit it was advanced enough for Kaiser to suggest their hospice care.

I am really angry about all that happened with Kaiser.  The rude staff attending to Eddie in the emergency room. The frustration my parents had to deal with, along with the realization that my brother was too sick to attempt chemo treatments. The multiple calls I placed to member services, in attempt to help Eddie get the care he deserved.  The fact that somebody should have told my parents that Eddie was at risk for this specific cancer since he had a problem with his left testicle at birth. There won't be any apology good enough to excuse how Kaiser handled Eddie's situation.

It only got worse with the hospice care. Eddie had a nurse visit once a week, twice if they were lucky. My dad could never get in touch with his nurse, and she never came when she said she would. The "care" part was a complete joke. He had hiccups the entire time he was dying, and there was nobody there advising my parents on what they could do. One time, I had looked on google for hiccup cures and we tried them all, none of them worked. It was a sad and painful process, watching my younger brother slowly dying and nobody caring enough to make sure he was comfortable.


Now that Eddie is gone, I can't help but feel relieved that the hiccups have finally ceased. He is no longer suffering and I don't have to worry about trying to protect him or fight for him to be taken care of. Watching him suffer really strengthened my faith in God and in myself. Eddie was extremely special, and nothing I could ever write would do him justice, but writing about him makes it easier for me to deal with him being gone.

Eddie was this song and he always will be

I will be here for you by Michael W. Smith.

I heard this song for the first time on my very first church retreat. Eddie's dad Paul was the youth minister on that retreat.

When Eddie got sick this song popped into my mind even though I had not heard it for years. I did a quick you tube search one night after going to see Eddie and sobbed as I listened to it and thought about how Eddie could sing that song to every person he every met. Eddie was there for everyone in every way he could be.

I remember that night as I listened to the song I thought to myself that I was going to be there for Eddie like he has been there for everyone else. Sure I had been there a lot for Eddie in his life but never like he had been there for me and others around him. I was so pissed off and sad about him getting sick like this that I remember yelling in my head."Dammit! Eddie has been there for everyone his whole life and now it ends up like this? Well I intend to be there for him as much as I can for as long as he is still here!"

Then I did just that. I took time off work or worked crazy odd hours early in the morning or late at night so I could be with Eddie for part of the day. Every time I was with him I did anything he asked me to do.

Eddie actually asked for a lot more than he ever did before he was sick. I am not sure if he did that with only me or with others too. Somehow I think he knew that his time was running out and he might as well go ahead and ask for what he wanted. I think after I kept responding he started to do it more often because he must have known I would do my best to fulfill any request he gave me.

I am really glad I got to be there for Eddie during his last months of life. He is still there for me now even though he is gone. This song will always bring a tear to my eye and it will always make me think of Eddie standing there singing this to all the world with outstretched arms, especially to those he loved so dear: me, Rachel, Mom, Dad, Chris, Michael, Monica, and James.

Thank you Eddie. Thank you for always being there for us.

An angel named Linda

Every day, I challenge myself to wake up and go to the gym. It seems like it an easy thing to do, and it probably is for most people, but for me it is a daily struggle. Getting myself motivated to get out of the house and persuading my children to hang out in the kids club is a big deal.  The one thing that makes it easier to convince them to go is Linda.

Linda works at the kids club and we love her very much. When we found out that Eddie was sick, she started praying for him daily.  Every time that I would check my kids into the gym, she would ask how my brother was doing.  Our talks would have to be quick, but she always took the time to listen and give me advice.

On the days that would be really hard, she would always be there waiting for me with profound wisdom. Encouraging me to keep going and reminding me how precious each moment is. Telling me that I have a beautiful aura and that I am doing a good job with my children. Giving me the confidence I needed to trust my instincts. Sharing a special story from her life that enabled me to escape my depressing thoughts and focus on being positive and creative.

Linda is an angel in my life. She really was there for me when I needed someone nudging me forward.  I could not change what was going on with my brother, but I was able to change the way I participated.  I was able to have strength to deal with the reality that faced me every time we went to my parents' house to visit Eddie. I was able to be there for Eddie in ways I would have never thought possible. Thanks Linda for being an angel in my life.

Eddie loved talking with people and learning about their lives.  Sometimes the questions would be simple and sometimes they would be innocently inappropriate. He just loved interacting with people and hearing their stories. Listening to their voices and sometimes even mimicking them, to the delight of all his siblings. He never judged anyone.

How much could I learn if I stopped judging people? How much more could I achieve in my life if I stopped judging myself? How much more confident will my children be if I allow them to make mistakes and show them unconditional love? How much happier would my husband be if I stopped having unrealistic expectations? How many people are in my life that i am avoiding, but really could learn something from, or vice-versa?

My brother loved me very much and he always would remind me that he did.  Of course I have not been the perfect anything, but he loved me anyway.  Does it matter why he did? It should not. He just loved me for being Rachel. I should be able to love myself for being Rachel too.  The pieces of the puzzle, that is my life, are still falling into place. I won't know what the end result will be, but I am able to realize that I should love it anyway. Eddie did.

Linda's poem that she let me share..

If I knew

If I knew it would be the last time that I'd see you fall asleep,
I would watch you more closely and pray the Lord, your soul to keep.

If I knew it would be the last time that I see you walk out the door,
I would give you a hug and kiss and call you back for one more.

If I knew it would be the last time I'd hear your voice lifted up in praise,
I would video tape each action and word, so I could play them back day after day.

If I knew it would be the last time, I could spare an extra minute or two
to stop and say "I love you," instead of assuming you would KNOW I do.

If I knew it would be the last time I would be there to share your day,
well I'm sure you'll have so many more, so I can let just this one slip away.

For surely there's always tomorrow to make up for an oversight,
and we always get a second chance to make everything right.

There will always be another day to say our "I love you's",
And certainly there's another chance to say our "Anything I can do's?"

But just in case I might be wrong, and today is all I get,
I'd like to say how much I love you and I hope we never forget.

Tomorrow is not promised to anyone, young or old alike,
And today may be the last chance you get to hold your loved one tight.

So if you're waiting for tomorrow,why not do it today?
For if tomorrow never comes, you'll surely regret the day,

That you didn't take that extra time for a smile, hug, or a kiss
and you were too busy to grant someone what turned out to be their one last wish.

So hold your loved ones close today, and whisper in their ear,
that you love them very much and you'll always hold them dear.

Take time to say "I'm sorry," "Please forgive me," "Thank you," or "It's okay."
And if tomorrow never comes, you'll have no regrets about today.

Linda

LISTENED TO CYNDI LAUPER'S "TRUE COLORS" AND IT MADE ME FEEL HAPPY..TRY IT:) EDDIE WOULD WANT U TO.

Today I learned something new..

and I will not be sending long posts from my phone. I checked to see how they came out, and it looked like I had written from Mars.

I slept through today

and thought it would make me feel better, but I still feel the same. It really has been a crazy few months and I still have not done anything cool with my kids. I am pretty sure that my son goes back to school sometime in August and all he is going to be able to share is that his uncle died. I really needed to have a vacation with my family this summer, but unfortunately it seems like we are all doing is surviving.

I have taken the kids swimming a handful of times at my in-laws, even though I could have been there every day. I have passes to almost everything here, but i don't have the drive to take them.  I can't figure out why I feel so unmotivated.  Today is Tuesday, so that means it has been another week since Eddie passed away.

I think I just feel bad about having a good time. When the kids are awimming, all I can think about is Eddie.  He loved going swimming. Once he had swimming lessons and did not need the orange floaties, he loved going swimming. I regret not taking him more often.

When my husband and I were first together, my family checked into a hotel for a holiday weekend and that was our vacation. I know he thought it was weird, but that was all we could afford and it was the norm for us. We went swimming until the pool closed, and my dad played guitar for us to sing along to "La Bamba" and a few other favorites of Eddie. Eddie talked about it for the entire year.

Another year, we were able to join my family on a trip to Knott's and Disneyland. We drove up and met them at the hotel and when we finally got there, we found out Eddie had spent the entire day in the pool. Anytime we were able to go on vacation, Eddie made sure multiple times that the hotel we chose had a pool. I think swimmming was his favorite activity.

In April, my parents were able to get a hotel in old town for the weekend.  Eddie had made the request multiple times and it finally worked out in his favor. I remember him telling me that he was going to a  hotel and was going to go swimming. Unfortunately,when they checked in, the hotel was remodeling their pool and Eddie did not get to go swimming.  We went down to dye eggs with him, but he was to tired to do anything but rest. I think a big part of his resting was a way for him to deal with the disappointment of the pool.

There are many things that I wished I would have done with Eddie before he died. I know if he had been in slighty better health, my husband would have helped me take him to the moon if I wanted to go there with him. I was there when I could be. I did what I thought would help. Right now, I could beat myself up for not doing more and that's exactly what I have been doing.

SIMPLE THINGS WITH MY FAMILY..WHAT A WONDERFUL WAY TO SPEND THE DAY.PICNICS AND COLLECTING LEAVES AND ACORNS. EDDIE SITTING ON A ROCK..

Today I miss the days when a drive to the mountains was a treat for our family. Listening to the oldies and looking out the window at nothing.

Eddie's Best Friend

My dad was a Youth Minister for most of our lives.  He always had us involved in his programs as soon as we were old enough to participate.  There were the religious education classes and drop in nights for junior high and senior high students.Every year there were retreats put together by members of the youth group that had already been confirmed.

I have to be honest and admit that it all is a blur, but I do remember the feelings of excitement every time I would get to camp. The outline was basic, but the thing that made each retreat different was people who were involved. The "team" of people who put the whole experience together and "participants" who either came willingly or were forced by their parents. That made each and every retreat unique and special. You could either come home completely inspired or grateful that you at least had Sunday evening left to do something before school started again Monday.

I remember when Eddie went on his first retreat and the team leader who picked him for her small group was Jenn, she saw Eddie as special and not as a challenge. That retreat brought them very close together and I know Jenn meant the world to Eddie.There has always been something special about the friendship between Eddie and Jenn and it only became stronger after Eddie's Confirmation. Jenn was his sponsor.

Jenn would pick Eddie up and take him out to lunch. She would take him to the beach so he could listen to the waves. They would sit in her car and talk for hours. She really was Eddie's best buddy. Eddie danced at her wedding and enjoyed every minute of music that played.When my dad retired from the church, it made it more difficult to see Jenn on a weekly basis.

When Eddie got sick, Jenn was there for him again with coconut water and trips to the beach.  She pretty much dropped her life and rushed to be there for Eddie.  She created coconut popsicles to keep him hydrated and filled endless cups of ice in an effort to quench his thirst. She helped get him the things he wanted most, a pair of sweatpants and a clean shirt. She listened to him. She texted me that day before he died, convincing me that it was very important that i get over to see him.

I know that Jenn feels like she was lucky to have Eddie in her life and not the other way around. I know she struggles daily with the loss of Eddie and the realization that she will have no more adventures with him.  The thing is, I feel like Eddie is always with her. On her trips to the county fair, in her conversations with her children, and in the new challenges she will face in her life. Now, Eddie can look out for her and her family the way she looked out for Eddie and our family.

Mister Roger's has a book of inspiring quotes and I think this one fits today:

"The purpose of life is to listen to yourself,to your neighbor,to your world,to God,and,when the time comes,to respond in as helpful a way as you can find...from within and without."

So, thank you Jenn for being there and listening. I know you were able to hear what Eddie wanted to say and he was able to go peacefully, with a pair of sweats on.

Heaven is for real..

Today, my mom is going to Skyline Church to see the author of "Heaven is for Real" speak. One day while we were driving home, I saw the billboard and immediately called to tell my mom. She was really excited about it and even remembered the date. So today is the day she will get her copies of the book signed.

When I realized how sick Eddie was and that I wanted to get a book that I could read to him while visiting, the only place I could think to go to was Berean bookstore.  I spent some time looking through the selection, which was very thin, and then I realized that there was not anything that I felt comfortable reading to Eddie. On my way out of the store, I recognized a family friend that I had not seen in years. She and her daughter just happened to be in the store at the same time I was going to leave feeling defeated.

We chatted for a bit and I filled her in on the situation with Eddie. She had not even heard that he was sick. I told her that I wanted to get a book to read together with Eddie, but I could not find anything. There were four books on death and they were not at all appropriate for Eddie's reality. She suggested "Heaven is for Real" and told me that she just finished reading it and it was amazing.  She walked me over to the shelf and suggested that I get the version for kids because it would be easier to get through.

I brought the book home and read it to kids. The told me that they thought Eddie would really like to hear the book and asked when we would go over to read it to him. The next time we went over to visit Eddie, both of my kids sat down and listened to the story as I read it.  After I finished reading, my mom came in and showed me the book that his nurse had left for them.  It was the same book, but in paperback, and there was no way I could have sat there long enough to get through that version.

I don't know if Eddie even liked the book, because he never wanted to hurt anybody's feelings, but he listened with a smile. Even if there was something that bothered him, he never said anything to complain about it. I think he enjoyed the time we spent together.I could have been reading food labels to him and he would have been happy for the company. The book put me at peace and comforted my kids because they knew when Eddie did leave, he would be in a better place. He would be taken care of.

I am really glad that I went to that store at that time and that I hesitated before leaving because if I had left a minute earlier, I would not have bumped into her that day.  The book I purchased was nowhere near the other books I had seen and there is no way I would have even found it without her help.  Eddie knows for sure that heaven is for real, and I hope someday that I will too.

WE ARE GETTING DR PEPPER SLUSHES AT SONIC..EDDIE'S FAVORITE COLD TREAT ON A HOT DAY:)

I found this photo yesterday. Our wedding photos were saved onto our computer, but I never really looked at them until I was trying to find good ones of Eddie. In this one, I think Eddie looks really handsome and it is how I wish I could remember him. This is such a change from how I last saw him and I am still trying to heal from the memory I have of him after he passed.

Eddie loved dancing as much as he loved music, with all of his heart. All he ever needed was a radio with working batteries and a can of Dr.Pepper. I will always remember him when I see Dr.Pepper or listen to his favorite radio station kyxy 96.5. I know if I am thinking about him, the song I need to hear always comes on to trigger a happy memory. The morning he died, my brother Michael came out to pick me up and as we drove to my parents, "I believe I can fly" started playing on the radio.

 I have been missing him so much lately and then I remember he only passed a month ago. I will have years and years of missing him. I know he would not want any of us to be sad, but the loss is severe. He was always the light in the room with his smile shining the brightest.

 I am grateful for the times my husband and kids helped me get him and drive him to get his Dr.Pepper and a "double double." The times when my kids kept quiet in the car so Eddie could roll down his window to listen to the waves crashing on the beach. The times we spent on Halloween going door to door getting candy, even though Eddie never liked sweets. The times when Eddie would let my kids sit on his lap in the wheelchair when they got tired of walking. I am glad my kids were able to meet him and I was able to name my daughter Edy. 

We were at Costco the other day and there was an employee whose name tag said "Eddie." I had never met a woman named Eddie, so I asked if it was short for something and she told me that it was short for Edith. That encounter reminded me that I named our daughter knowing eventually Eddie would pass and I wanted her to be named after him. How could I have forgotten that?

Life is not always easy. Losing someone is difficult. I am living each day knowing I always have Eddie in my heart and in my memories. I am so happy that my kids see Eddie in random dragonflies. My son prays and asks Eddie for help and he believes it was Eddie who helped him win the class tadpole. 

Eddie will always be missed, but we will never forget him.

Last month,on this day..

at 9:32 a.m. my brother Eddie passed away. I don't really know what to say and I keep erasing so if I don't write now then I don't think I will ever post anything. I miss him.I miss him very much.

 On July 4th, my family went swimming at the in-laws and I kept forgetting that Eddie wasn't coming. I look at his pictures on my wall and am reminded that he will no longer be in our Christmas photos with Santa. My kids were messing with balloons at my mom's house and my initial reaction is to tell them not to scratch the balloons because it bothers Eddie. I heard Beck's "Loser" on the radio and go to turn it off and then remember when Eddie had memorized the entire song. 

We went on a ski trip to Lake Tahoe with my dad's youth group and I probably was 14, so he must have been 13. I never liked skiing and so I stayed in the condo with Eddie. The only channel that was decent was MTV and since my mom never allowed us to watch it, of course that is the channel we kept it on. I didn't think anything of it until we got home and Eddie starts singing, "I'm a loser baby so why don't you kill me.." My mom was so mad and she knew right away that I had let him watch/listen to MTV. I can't remember if I was grounded or not, but she definitely did not think it was funny. Eddie did. He had a great sense of humor. He also knew that song was kinda naughty, so it cracked him up to hear my mom gasp with horror every time he sang those lyrics.

 Today, I will listen to that song and visualize Eddie smiling as he sings those words..