My baby brother

                                            This is what I am really missing in my life right now

Beck's "Loser" on the radio again..whenever I have Eddie on the brain, I hear this song.

52 Weeks at the Beach

When Eddie was sick he got me to take him to the beach a few times. It was more than I have ever been to the beach across a short amount of time. The beach is amazingly beautiful, calming, and peaceful. It makes you feel alive. Maybe that is why Eddie loved it so much. He could not even see the beach since he was blind but he could feel it and hear it and breath it. The beach and ocean is powerful even with out the sense of sight.

I live 10 minutes from La Jolla Shores, just 10 minutes.

After my son's first day of 2nd Grade I knew he needed to get outside and decompress. My car started heading to the beach even though it was already 6:45pm and we had not even had dinner yet.

He ran in the waves as the sun set, dousing his brand new school outfit in salt water and wet sand. My 2 year old was with us too riding in a carrier on my back. He was laughing and yelling "Oh Jonny!" as he watched Jonathan run free in the water.

I was smiling and taking lots of deep breath of the fresh sea air. I was decompressing too.

All 3 of us slept like logs that night.

In a earlier post I said I made a promise to myself to go to the beach more often. Well 3 weeks ago I made a commitment to go there once a week for a whole year. So far so good. We will be heading there tomorrow night to get our beach time in for this week.

Rachel I think you should join me sometime with your kids! Eddie wants you to.

Green Wolf tadpole died today. No fun explaining death all over again :(

Old photos

I finally figured out how to set up my printer to the laptop..all by myself. In celebration of my ability to do something I usually have Seth do, I thought I would start sharing awesome pictures I found in my mom's garage.  I have no idea what we were watching but it looks like we were really enjoying it. These are the moments that I hold dear to my heart. When I feel like a jerk or like I should have done more for my brother, it helps when I look at these. It reminds me that we had some wonderful times together and that I was a pretty good sister. Even though Eddie had his cast on, he still was very happy.

This is what I miss the most

 Eddie at Sea World, holding Edyth and her baby. This was when we all got together to watch Michael perform at the Bay of Play as Grover. I am glad Eddie and my mom were able to watch it with us.

Eddie getting of the bus when we went to Disneyland. 

                                         Eddie with Max. This picture is almost six years old.

I miss my brother. I miss his wheelchair. I miss his constant requests for a Dr.Pepper. I miss his silly sweatpants. I miss his laugh. I miss his disapproving sound effects when I would use bad words. I miss his adventures with my kids. I just really miss Eddie.

Read the book..

Heart of Abundance by Candy Paull. Refocus on the positive. There is much we can learn from the loss of a loved one. Appreciate and enjoy the life we all still have the opportunity to live.

M.Scott Peck

"Be alert for the unpredicted presence of God unexpectedly intruding upon your everyday life."

Eddie's friend died on Monday.

I haven't been talking to my family recently so I found out about Billy's death in text messages from both of my parents. It is kinda weird that Billy started getting sick and going to the hospital around the same time Eddie was dying. Angie and Billy were a big part of our lives. She is one of the many people who felt super comfortable just dropping by my parents house without calling first. Sometimes she would make tortillas and salsa, other times she would clean the house. There were even sometimes that she would just sit on the couch and fold the huge box of socks that nobody else would attempt to finish. Every time Angie would drop by, and her car would be parked out front, she would always have Billy with her.

I don't know how to explain Billy. He was not like Eddie. Eddie was mellow and liked his personal space. He was easily understood. Billy was the opposite. He would always walk after you, trying to shake your hand and ask how you were. The only other words he would say were juice and tortilla. Something about Billy always made Eddie laugh. He made me feel uncomfortable, but Eddie really liked him. Angie would always be walking around the house talking about her faith and getting into mini arguments with my siblings about conservative issues with Billy waiting patiently for her to finish so they could leave.

After Eddie died, Angie and her daughter came over. I was in the garage, cleaning out the clutter and trying to preoccupy my thoughts and Angie's car pulls up. My mom loves socializing and her home seems to be a haven for everybody..except us kids who grew up there. I know I grew up with Angie dropping by all the time without notice and it was not my house, but I really was not in the space to be talking with them about anything. It reminded me of all the times when random people would come over and how we would have to modify our plans just so they would feel comfortable.

I probably was pretty rude and there really is nothing I can do about it now. I was only at my parents to clean and use all my energy just so I was too tired to think. I wished I was invisible. How many times did I have to answer the dreaded question.."How are you doing?" Pretty shitty actually would have accurately described how I felt. Pretty sick of people invading my space and asking me the polite question that has no polite reply. I could not even explain to my mom why I could not handle people dropping by and pretending that they could understand what was going on.

 Nobody was expecting Billy's death because he died of a heart attack. Although I hated watching Eddie suffer, I am grateful now that we had those extra moments with him. I was able to be there for him like I was when we were growing up. He was able to be present in the lives of my kids. He made an impression on Seth. He reminded me how important it is to have faith in God. My faith could have died with Eddie and I could have blamed God for punishing Eddie with a miserable death, but instead it strengthened the faith of my entire family.

Just as Jesus suffered for our sin, I feel quite confident that Eddie had a similar path. He loved us all so much that he took his suffering and used it to teach us something. I am still trying to decode the message because my brain has been in a fog. Maybe it is possible he could have died quickly, but instead chose to suffer so he would have extra time with us. Maybe he wanted to make sure our faith was strong before he left us. I know he was really close to God. The only other person I have met with that amazing closeness to God would have to be Mother Theresa. Eddie had that "light."

When Eddie breathed his last breath, his mouth stayed open and he looked similar to King Tut. The image was traumatizing.  We all sat around him and were reminiscing about him. No lie, his mouth turned into a smile. It could have been the way rigor mortis set in, but it was still unbelievable. I felt like it was his way of letting us know that he was happy. He went peacefully. The sun shone through the skylight in the living room at that moment..

Mother Theresa once said

"Let no one ever come to you without leaving better and happier. Be the living expression of God's kindness: kindness in your face, kindness in your eyes, kindness in your smile."

WE ALL LOVE OUR MICHAEL JACKSON. I BET EDDIE HAS GREAT MUSIC WHEREVER HE IS.

BILLIE JEAN IS PLAYING ON 94.1

A new quote

I think that when I am having a hard time figuring out what to write about, instead of not posting,I will find a quote that fits my day. Not a ridiculous saying I use when I joke with Seth or the kids, but one that I happen to find that touches my heart. I have been really inspired by those who have really tried to explain life or even those that share little secrets they have learned during their lives. A good saying gets me thinking again and, no matter how bad I am feeling, refocuses me on the positive.

"Let us be grateful to the people who make us happy..they are the gardeners who make our souls blossom."
                                                                                                          -Marcel Proust

TODAY IS THE 12TH. EDDIE HAS BEEN GONE FOR THREE MONTHS. STILL HURTS.

Eddie,

I really miss you. The kids miss you. Seth misses you. I can't go over to mom and dad's because it hurts too much and I keep expecting to see you in your room. I look at your pictures everyday and they make me smile. Thank you for not dying on my birthday and for leaving me two voice mails on my phone. I wish we could have gone to Disneyland and stayed in a hotel so you could have gone swimming. I wish we would have had more trips to In and Out and more drives to the beach. I am sorry I kept playing 70s classic rock when you probably wanted to hear Lady Gaga. Thank you for always being excited to go Trick- or- Treating and for letting the kids ride with you in your wheelchair when they got tired. Thank you for always laughing at my bad jokes and reminding me not to use bad language. Thank you for making me feel loved and important. Thank you for asking for me to visit you. I hope, wherever you are, that you are happy and having fun. Put in a good word for me..maybe a few good words and keep an eye out for us. You are always in our hearts and we talk about you all the time. We love you Eddie!

Something has been bothering me recently

and I have been having really intense headaches and feeling a little depressed. I know that I have been trying to keep busy to push the thoughts away, but it has not been helping. Maybe a little venting on here will make me feel a little better.

I am a little angry at how everything went down when Eddie was dying. I don't know what I was expecting, but deep in my heart I guess I thought it would all come together. Everyone in our family would come together and there would be healing and forgiveness. We would see how precious life is and appreciate each other more. There it is. A peek into my deluded thoughts.

Our "sperm donor" knew Eddie was sick and still he never even called to check on him. Fine. His sister came over and actually had the audacity to tell my mom that she didn't know that Eddie was named after G. I think she even told my mom that she didn't think Eddie was G.'s kid. Fine. Eddie got sicker and sicker, and yet he never offered to drop by to visit. Fine. He had his family relay a message to my mom that "He is having a hard month." Fine. He didn't attend Eddie's funeral. Fine. He never sent a card or anything. Fine. Eddie just died and he had a free pass from experiencing that too. That will never,ever be fine.

I wish it was fine. I know Eddie did not know him and the funny thing is that Eddie actually thought he was dead, but really? My whole life I had wondered about G. and what was so important that he could not attempt to be even a half ass father.  He just left us, all of us, and he never looked back. I know it was for the best now, and he is a big turd, but that doesn't change how it affected us as children. My brother and I are still trying to clean up the mess he left behind.

The last time I saw G. was a little after Edyth was born.  I found out he had a son named C, the same name as my younger brother, and he was only a year older than Max. At that moment, I guess I just tried to make it easier for me accept him as a person.  Maybe I wanted desperately to have a relationship with him because I thought it would make all the hurt go away.  It didn't work out that way, and it made me feel like I wasn't good enough..again. I knew I would be disappointed again. I didn't want him making promises to my kids that he would not keep.

Seth reassured me that this wasn't something I needed. I left it alone, but the rejection still hurt. It made me wonder what C had that we didn't. Why was he working so hard to buy him everything ,pay child support, and put him through private school? Why was he a father to him and simply a stranger to us? Why couldn't he grow a pair and try to be there for Eddie or us? Why were we not important enough to be on his radar?

He got a free pass out of our lives. He never paid any child support. He would not let Paul adopt us, so we all had to keep his lame last name. I know that there are tons of people without fathers and that probably have way worse scenarios and I don't think we are the only family that has been damaged. I do know that it will be a cold day in hell before I ever think of  G or his family as my family. I don't need to go to any of their funerals or anything because now I have the free pass. The "blood is thicker than water" saying doesn't apply to people who crap on their families.

While I am on here

We went over to Seth's grandma's house for his grandpa's birthday dinner. Seth's aunt has two girls, one is six turning seven next week. I was talking with his grandpa's sisters and his other aunt, but when Edyth woke up from her nap and wanted to go swimming I was hanging out by the kids. I am glad that I did because I was able to hear a very interesting conversation.

Seth's cousin was asking Max if he believed in God. Max replied with a yes. She said, " I don't believe in God."She asked him what God does. Max told her that God watches over everyone and he takes care of the people that are sick and dying. Her response was, "Oh,haha, look at me I am God and I sit in the clouds in my underwear." Max just looked at her curiously. The look on his face made me giggle. I had no idea what he was thinking, but I knew it was probably the same thing I was. What???

I could have easily missed this exchange.  I was conflicted. What do I do? What do I say? I told her dad what she told Max and he said he would talk to her about it, but I doubt he did. I still am processing how it makes me feel. I am slighly offended but at the same time it makes me wonder what they are teaching her. It made me extremely proud of Max. Even though she was making fun and trying to get Max do the same, he did not. 

On the ride home I told Seth and he asked Max about it. Max told us that he thinks God is up in the clouds and he has a long,white beard in one of those white flowy dresses that men wore a long time ago. We both told him how proud we were that he had his own opinion and that he didn't change it because it was not the same as hers.

 I had never thought to ask Max about God. I don't attend church and we don't always say our prayers but we did talk about Eddie going to heaven. I always tell the kids that God keeps them safe. If they are ever scared, all they need to do is to say a prayer or ask Eddie to help them. 

I am glad that Max has faith in God and however he thinks He works is ok with me. I am still trying to understand it all myself. I don't have to get upset when other people think differently than me. I need to be strong in my faith and believe what I do without wavering. Of all the people to teach me somthing so simple and yet so profound, I am glad it is my own son. At seven years old, he has so much wisdom and insight. God really did bless me with an incredible family.

Long time, no post

I have been neglecting to post on here. It just is something I tend to do. I am realizing that Seth is right, but did not want to believe it. I find something new and get so caught up in it that nothing else really matters.  After a little time goes by, usually a few weeks, I am over it and put no effort in anymore. This applies to the gym, cooking, reading, cleaning, being a friend, and now blogging. I guess the natural thing for me to do would be to go silent and pretend this blog does not exist anymore.  For my sanity and because I love my brother so much, I can't let myself quit. I need to push myself harder.

The gym has been my distraction since Eddie died, and I have surprised myself with the dedication I have had. The last few weeks have been continually more difficult for me to go and even stay to do a workout. My mind wanders and as I watch the timer on the treadmill and I have slowly stopped holding myself to a standard. An hour was enough for me to read a good portion of my book and listen to a couple albums while burning close to 500 calories on a relatively steep incline. Each day, the time has decreased and my intensity has slowed down incredibly. I have been so lazy that I am wondering why I even go anymore.

I can't even remember the last time I went into a class either, and I really was having a good time. I was getting stronger and more confident, but I am starting to think that maybe I sabotage myself before it gets too good. What an unfortunate way I am used to living my life. It is not the way I want my kids become. I have so many things to rework and sometimes it overwhelms me to the point that I quit fighting. 

I did want to mention that I went to the gym yesterday and I found out that Linda's sister had passed on Monday. I felt so helpless trying to comfort her. She had been so strong and fought for her sister like I was trying to fight for Eddie. She was the person I needed to give me the strength and advice I needed, but I had no idea how to be the same for her. All I could say was at least her sister was not suffering anymore. That was the best I could come up with.

I was very disappointed in myself for saying something so stupid. It actually made me angry when people said that to me or my family. I know that he was no longer suffering, but it didn't make it any better that my brother is gone forever. 

 I had to apologize to Linda for saying what I did, but she was not upset. Her sister had been really ill on Friday, but on Saturday she was better and talking again.  Linda read the poem,the one she let me post on here, to her and told her sister that she lived her life with no regrets. I am really glad she was able to have that special moment with her. She was happy that her sister wasn't in pain any longer. 

She was actually grateful for the lady that they put in her sister's room. Her sister was not supposed to have a roomate, but they put one in there anyway. It was that lady who helped her sister when nobody was there and she would press the buttons for her to call the nurse. She was the comfort that her sister needed to pass peacefully.  Linda told me that she was going over on her lunch break to buy flowers for that lady and thank her for being there for her sister.

I did my post backwards..oops.Sorry.

More Taking Care of Yourself

*Eliminate Unrealistic Expectations for Self and Others*
I am my toughest critic. When I look in the mirror and find endless flaws, I take the time to find one thing that is right and when I spend a little more time getting myself ready I have less to criticize. I have been trying to be more patient with my family and be less anal about the way they do things. I want them to know I am grateful that they helped me fold laundry so as tempted as i might be to redo it- I leave it alone.

*Pay Attention to Your Diet*
I notice that I feel more energetic and less moody when I actually eat fresh fruits and veggies,not just multiple cups of coffee. Drink water!!!!

*Eat Small Meals*
Appetite disturbances are common during grief. Eat small frequent meals and avoid fatty food and sugary snacks.

*Avoid Alcohol*
I rarely drink anything other than my coffee and iced tea, but I did have a gin and tonic this weekend at Seth's grandma's house. It is true that it can intensify your feelings of depression. It actually made me really edgy and gave me a bad case of verbal diarrhea..oops. Seth was going to order me a cocktail at dinner this weekend too, but I learned my lesson. Rachel+alcoholic beverages= not a good idea.

*Breathe Deeply*
I am learning that when I am stressed out I hold my breath.. a lot. It makes me tense When you take deep breaths from your abdomen, it calms you down by slowing down your breathing and increasing oxygen to your brain. I definitely don't want to have another seizure incident so I will give my brain as much oxygen as it needs. I am taking slow, deep breathes while I type...my brain is feeling very happy right now.

*Try a Massage*
This releases tension and makes you feel taken care of. I like to have Seth wash my back.  It is a good way for me to sneak in some kid free time. Kid free time is very rare in our house, so sometimes it is those five minute escapes that save my day.

*Create a Soothing Environment*
I love our little radio that plays soothing sounds, but unfortunately it broke this weekend. I turn on the fans and listen to the blinds move. I don't know why but it works for me and almost puts me to sleep.

*Consider a Pet*
We have a pet scorpion and a tadpole. I am sure coming home to a kitten or dog would make it a friendly experience, but we have Chili and Green Wolf. I have to admit that I do like coming home to see if our little guy is any closer to becoming a frog, so yeah I guess pets can make you happy.

*Don't Sweat the Small Stuff*
"After what you've been through, it is all small stuff."

*Reinforce Your Sense of Humor*
Not only is laughing great for your abdominal muscles it also releases the body's natural painkillers. My son was watching the "Ordinary show" the other day and it had both Seth and I cracking up. The characters totally reminded us of our family members. We laughed so hard that we got cramps..good laughing cramps.

I know that it is hard enough getting through every day with all the chaos and responsibilities of life. Having a death in the family only magnifies the situation. It can bring in so many negative thoughts and feelings. My life cannot be put on hold while I sort through the mess.

 By taking care of myself I can also take care of my family. I need to be ok for them to feel like it is ok for them to feel ok....does that make sense? When I am happy, my husband is happy. When my husband is happy, I am happy (most of the time). I want my kids to be happy all the time.

 It all starts with me taking good care of myself so I do not have a negative domino effect on everybody else.  Turning the frown upside down, rotating the negative to the positive, laughing instead of crying, living my life and not dying in defeat. Living like Eddie would, with a blindingly white straight toothed smile and love in my heart.

Modified Hospice Bereavement Program

I have this paper posted on my cork board. A counselor at Kaiser gave it to me a year ago and it has moved from my cluttered fridge to my own space, where I can look at it daily and be reminded that I need to include myself in my list of things that I need to take care of.  I made little notes to myself so I included them and modified the list just a tad.

                                        TAKING CARE OF YOURSELF

*Build Relaxation Into Your Day*
I just realized today how calm I am when I am making something or listening to some "60s soul explosion on Songza. I am still learning how to relax, but I am finding I like it tons more than being on edge. Listening to some good jams+making dinner= a happy Rachel and really,really happy Seth

*Simplify Your Life*
Eliminate tasks that can wait and avoid perfectionism. The world won't end if Edyth's princess figurines are mixed in with the legos or the movies are not alphabetized. It is not necessary to reorganize other people's stuff so leave it alone.

*Exercise*
Go to the gym and take some time to yourself. Make it to the classes that are fun, Power Sculpt and Pilates..maybe try Zumba sometime. If the gym is not possible then use the step you bought yourself for your birthday or break out the WII Fit because you love it!

*Meditate or Pray*
*Walk Away From Stressors*
*Dress For Success*
Give away clothes that make you feel uncomfortable in. Take the time to put on a little makeup or shave your legs-it does make a difference.

*Make Difficult Tasks as Tolerable as Possible*
*Limit Opportunities for Family Conflict*
Recognize that this is a difficult time for everyone and give each other space and support. This one has been difficult for me because I have a hard time dealing with and even avoiding my family. I have spent time with them but I realize I can't put myself in the same position I have been in my whole life. I can't change them. I am trying to love them where there are at and focus on my husband and children.

*Schedule at Least One Enjoyable Activity into Each Day*
I love coming on here to post, it has become my release and it is really making a difference in my life.

*Don't Set Yourself Up for a Bad Time*
It is ok to say no to a family get together. Just remember that when Seth and the kids do go, you will be the one missing out. Focus on the time you are spending with them and that will make it easier for you to be around people you are not too fond of.

At the Beach

My middle son Jonathan asked if we could go to the beach tonight after I finished working. It was 6pm and I decided what the heck, let's go!

I took my two boys down to the beach with my friend's older daughter. We went to La Jolla Shores.

When we were making the left hand turn to go down to the ocean I realized that I had not been on this street since the time I took Eddie there back in April. It was on that street that Eddie told me he was not afraid to die. He told me that he did not think he was going to get better. He said he was going to go home and live with Jesus. I asked him if he was scared to die and he simply said: "No I am not afraid to die Jennifer."

Dang I wish I could be 1/8 as brave as Eddie! He truly was the MAN. Paul use to say to Eddie "You're the man Eddie!" and Eddie would laugh and say "Yeah I'm the man or No, you're the man dad!"

Eddie you ARE the man!

When I was at the beach today I made a promise to myself that I would go there more often because what the heck right? It is 10 minutes from my house! I know Eddie would have been at the beach everyday if he was in control of getting there.

DR. BRONNER'S MAGIC SOAPBOX.. IF YOU USE THE SOAP THEN YOU NEED TO SEE THIS. WATCHING IT NOW ON NETFLIX.

Long, rambling post..and we found a dragonfly

All day I have been thinking about Eddie. When I checked the kids into kid's club today and talked to Linda about her sister.  During pilates class, there were a few songs that reminded me of him. On the treadmill, even though I was trying super hard to read my latest book, I kept thinking about Eddie.

I don't know what I am expecting. When he was sick and I visited him, I guess in the back of my mind I thought I would experience something miraculous.  I asked him if he would keep an eye on my kids for me and he said he would. I wanted him to be Edyth's godfather, but the priest told me it would be better if I chose someone who would be around for her.

Who better than someone who has passed on to protect my daughter?  I am still upset that it did not work out the way I felt it should because now Eddie is dead and Edyth remains unbaptized. This whole ordeal has really pushed my faith like a pendulum, back and forth repeatedly.  When I was taking care of Eddie, cleaning him up and bathing him, it was like I was taking care of Jesus.  My love for Eddie and the need to protect and fight for him was strong.

My power was limited and there was a fight every step of the way. I got in arguments over Eddie's medication because my mom believed her prayers were enough and she didn't like seeing him all medicated. I fought for the hospice program to do more for him, but they didn't get their act together in time, and probably won't. I fought for him to sleep in the living room because he was scared to sleep in his room, and that is where he died.

All my life I have been fighting myself, my family, and the world. Eddie hated the fighting. Most of the fighting in our house growing up was either between my parents,about money problems, or over some nonsense with my brother Chris. The police were always at our house, thanks to the neighbors. I am tired of fighting and being overwhelmed by anxiety and uncertainty. I got out of that house and I have a new life that I want desperately to enjoy. There has to be a way to live my life without the anger. I am not responsible for what happens with my family now, although I will always feel like I need to fix their problems.

I fought for Eddie. I knew what I needed to do to put him at peace. I know he would have kept fighting if he thought it would help my parents with their financial situation. He even told me that he didn't want to die because my parents might lose their house and they would be sad.

 I wanted him to go. I knew I would miss him, but I could not handle seeing him like he was. I could not fight hard enough to make changes within my family. I told Eddie that everyone was getting older and they would be moving out soon. He would be left behind, and I didn't want that for him. I told him to go.

Eddie told the kids he would visit them as a fly, but Max suggested a ladybug or dragonfly instead.  Today, when all my thoughts were on Eddie, we found a dead dragonfly. An entire dragonfly. I started to tell Max to leave it, but I told him to pick it up. We put in a cup and brought it home. We put alcohol in a jar and are hoping that is enough to preserve it. It is beautiful.

I believe that Eddie has a new life where he is happy and carefree. I don't need to understand where he is or try to explain to other people what my thoughts on the afterlife are. I just know he is ok. I am glad we found the dragonfly today- I needed that. It is the universe's way of reminding me that it will all make sense in the end, but for now I can find beauty in the small things. I can be happy.

Memories

Today I was thinking about the trips we would take up into the mountains when we were kids. My dad would pack us all up into the blue station wagon and hit the road. I don't know how my parents handled the drive because even a fifteen minute drive with my kids can get unbearable fast. Anyway, my mom would pack a picnic lunch and we would go up into Julian, Ramona, or somewhere out east for the day. Sometimes, we would get to stop at Dudley's Bakery and get a few loaves of freshly baked bread. My favorite has always been the jalapeno cheese.

On the hot days, we would bring our swimsuits and head out to Green Valley Falls.  I doubt I could find this place now or if it even is the way I remember it, but we would go into the park and find an empty picnic table. My mom always packed enough stuff for a few days, so after unloading the gear we would sit and eat lunch. There were waterfalls and we were able to slide down them like water slides into a collected body of water. I think it was the moss that made them super slippery.

There was this one time that my dad took my brother Chris and I to the falls.  We kept going down each one and repeating it until we were exhausted. Somehow my dad's wedding band fell off and he couldn't find it anywhere.  We went back up to the picnic table, where my mom and Eddie were, and he told her what happened with his ring. There was no possible way to know which waterfall or pool of water had his ring.

I stayed at the table with my brothers and my parents went down to the falls.  I was wondering how the drive home would be, but it probably would not include a stop for ice cream. After a while, my parents came back and my dad had his ring on his finger. I guess my mom and dad had said a prayer before she put his hand into the water and as he was reaching under a rock, the ring slid onto his ring finger. That is the story that they told us and my dad has shared many times over. It really is a bizarre story, but it is totally true. My dad still wears the same band and has never lost it again.

The kindle book I was reading at the gym today..Joining Miracles.Navigating the Sea of Intended Synchronicities by Michael McGaulley. Pretty interesting story and maybe it is true, but it made me think.  The way that my parents found the ring seems impossible and even now I wonder how in the heck that happened. I have lost things and not found them for years. Was what happened a miracle? Would my parents have stayed married if the ring had stayed lost? Would my mom view it as a sign that the marriage would fail?

I don't know how it happened and every time I hear the story I am still in disbelief. I am just really glad that my parents stayed together, and I almost feel like that story is testament to their marriage.  My dad really is an amazing man. He has so many good stories and I can only hope he will use this blog to share them. Eddie loved hanging out with dad, they had a similar sense of humor and they both knew instinctively when the other needed company.

My dad is having a hard time dealing with Eddie's death and I really feel like posting on here is therapeutic.  I know he still goes downstairs to get Eddie ready to go to his center, but when he gets to the room Eddie is not there.  I know there are certain shows they would watch together, so it must really hurt to watch them alone.So dad, if you are reading this..use this blog as a way to keep Eddie alive.

 Eddie has a way to communicate with us still. It can be a song on the radio that makes you want to dance and you can just see Eddie dancing along too. It can be a memory permanently etched in your mind, like the way Eddie would sit and bounce when he was really happy. He sometimes speaks through my son, Max, reminding me to be a patient mom and that my daughter's fits are brought on by lack of sleep.  "Mom, Eddie says not to yell at Edyth because she hasn't had a nap today and she is tired."

 Eddie is with me every day, pushing me out of bed and challenging me to live my life to the fullest. Knowing that everything is possible and only I put the limits on my life. I know if Eddie had not had the challenges he was born with, and if his life had been easier and longer, he would be trying to convince me to skydive or travel the world. Nothing seemed impossible to Eddie, life was an adventure. Now, when I do some really crazy thing I never thought i would do or challenge myself in a new way, I know Eddie is right beside me cheering me on..and I can do anything.

I love you Eddie...Forever and ever..  

 

Camp Oliver..retreat destination

 Whenever I feel so sad and lonely, all I have to do is look at the mountains. They remind me of how small I am. They bring me peace.

99 cents for a James Taylor album..

so of course I downloaded it to my Kindle cloud. I never would have thought my kfire would be my favorite gift, but my husband knows me better than I know myself sometimes. I always get buyers remorse so his safest bet is usually just giving me money for a tattoo. Needless to say, I have way more ink than I did at my wedding. I am still debating what I should get for my memorial tattoo.I am glad Seth took a chance and got me the kindle. I admit I was planning on returning it, but I slowly fell in love with it.

 I was able to bring it over and listen to bible verses with Eddie. I was able to find 70s soft rock on Songza and have him tell me the people singing us the songs.(Eddie could have been on the radio with all his knowledge about music). I didn't even find out until last Christmas that he had evolved from his soft rock to Lady Gaga. Seth once asked him if he liked Justin Beiber. After laughing, he told Seth  "Oh no, Justin Beaver is for teenagers, I don't like him, but maybe or Michael or Monica like Justin Beaver."  Then Eddie started laughing again. That story gets Seth smiling every time

I remember Eddie had a teacher who took him to a James Taylor concert. That must have been such a memorable experience for him, going to see a musician that he liked and getting out of the house. Maybe I was always a bit jealous of Jenn because she was able to do it with such ease. Picking him up and going everywhere with him without having any problems. I should have taken more time to do those kinds of things with him, but I just wanted to be as far away from home as humanly possible.

Seth changed all that. He loved Eddie as much as I did. We drove him to Carls Jr for burgers and DrPepper. Old Navy for some birthday shopping. Of course, we bought his track pants, shirts, and sweatshirts and he could not have been happier. We took him to a St.Madeline Sophie fundraising show at Copley Symphony Hall forever ago. Eddie was in his wheelchair and the tickets were complimentary,meaning they were up in the rafters with no wheelchair access. The usher told us we would have to park the chair and walk him up the never ending stairs. No way that would be reasonable for Eddie.

Poor Eddie was disappointed, but Seth quickly changed that.  I don't remember how he did it, but we got past the usher and into the theater. He found a seat and placed Eddie in it and then ran the chair to the spot where it had to be parked. The smile on Eddie's face will never leave my mind. I think it was probably a combination of being out all together and the fact that we didn't do what the usher told us to do. We were being a little bad and Eddie loved it.

We grew up in the same house. Stuff that frustrated me when I lived there, and the same nonsense that irritates me now, probably bothered Eddie even more. He didn't have his sight, so all he had was his hearing. The fighting that scared me, probably scared him too. The feelings of helplessness must have been so overwhelming for him because he could not just walk away. I can't feel too poorly for myself because Eddie always had it way worse, but he never ever complained.

 He was such a unique person, filled with so much love and peace. Even when he was dying, he held me when I was crying to comfort me. I tried to hold him, but he was so frail. I still have a hard time believing that it was cancer that took him. With everything that he lived through, it seems so unfair that cancer crept in and stole him from us.

Now that he is gone, all I can do is hope that he forgives me for not being the sister I should have been. I look at our childhood photos and I am there with him. Holding him, hugging him, feeding him, smiling with him, sleeping next to him..being happy together. Maybe that is what he remembers.

As for my James Taylor album, I will smile when I hear "How Sweet It Is" and remember Eddie singing it with his class...How sweet it is to be loved by you.. because it was very sweet being loved by Eddie.

Sometimes I wish it was easier to avoid people. SOCIALIZING STINKS :)

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..