July 24th, 2009

Our family is actually going to get out of this house this weekend!!! I am definitely ready for a change of scenery and we are going to head to Reno to stay the weekend. The trip is a birthday present for Lacey, who turned 9 on the 20th and Andrew, who turns 8 on the 29th. Happy Birthday!

Circus Circus is a great combination for the two of them. Andrew loves video games, which there are plenty of there so he will be in heaven! Lacey is my autistic one and her "thing" is dogs. As luck would have it, there is a circus dog show being performed there this weekend!!! Besides that, as down as I have been...I just don't see how you cannot smile and/or laugh in a place like Circus Circus. So, it should benefit all of us.

On the whole, our family is doing as well as can be expected. I am having the hardest time, but have weekly sessions with my counselor and I believe these sessions will start to help me heal. I have a wonderful counselor that I feel really wants to help me. She does not want me to take on anymore children or do anymore outside caregiving so that we can find out who I really am without that. That is so strange for me because since the age of 19 all I have done is take care of someone else. I really don't know who I am outside of that. And, then I think....well, isn't that me???? And, yes, it is, but I think her point is to learn what is it that I can do that is just for ME. Imagine that! The strange and hard part is....I don't know what that is! So, this will be a big challenge.

Guilt has been a big one for me this week too. Guilt is horrible and can destroy you. I keep trying to fight those thoughts away, but it is difficult. The thoughts of: could I have done anything different for Faith, should I have waited longer to do the surgery or should I have done it sooner, should I have known something wasn't right.... I was her mom and it is hard not to feel like I didn't do enough/ I didn't protect her enough. Now, there is no way to know. There is no turning back the clock and changing anything. What is done is done and I have to learn to accept what is.

I recently received a packet from an organization called Grief Haven. A friend of mine asked them to send me their information because it is an organization set up to help Parents that have lost their children. It was founded by a mother who lost her daughter to a rare sinus cancer. They sent me a wonderful packet including a video to help deal with our loss. But what I wanted to share was part of the packet that included a list of what things to "avoid" saying to someone grieving. I laughed when I read it because it is soooooooooo true!!! But the thing is....people don't know what to say. I was right there, too, just a year ago. Before I lost my mom, I had no idea what would make someone feel better at such a horrible time. Then, when I lost Faith, I REALLY learned what I didn't want to hear!

I have had numerous people ask me, "what is the right thing to say?". So, I figured I would share it for those that want or need to know. DON'T FEEL BAD IF YOU HAVE SAID ANY OF THESE THINGS! Like I said, most of us have NO clue what to say and that is why I am sharing. This list was compiled after asking "real" grieving parents what comments they did not like. The "avoid" list is much larger than the "comfort" list, as you will see. That is because.....honestly...there isn't much that IS comforting.

Things to avoid:

"at least he/she is no longer in pain"
"it was God's will"
"you'll be ok- you are strong"
"you must move on"
"He/she is the lucky one, we are stuck here"
"she/he is in a better place"
"there is nothing you can do about it"
"I know how you feel" (you can't possibly know unless you have lost a CHILD)
"he/she would not want you to be unhappy"
"you were lucky to have had her at all" (*this is one I question....because I do feel lucky to have had Faith at all. But, it was on the list so it must bother some grieving parents)
"thank God you have other children"
"At least you knew that kind of love"
"call me if you need anything" (YOU are supposed to reach out to the grieving person, not the other way around!)
"you can always have more children"
"I know how you feel - we just put our dog to sleep"
"he/she is in Gods hands now"
"you are still crying? Hasn't it been two years now?"
"It must have been their time"
"you will see them again one day"
"God only takes the best ones"
"just think, it could have been worse"
"time heals all things"
"everything happens for a reason" (*this one I, personally, am not sure about because I would like to believe things happen for a reason eventhough we may never understand until we meet our Maker)
"have you thought of taking a trip?"
"don't be angry, you know better"

Never compare losses, such as:

"at least you got to say goodbye"
"I know, I lost my father 3 years ago" (again, losing your child is different than any other loss)
"but you never knew him/her, since he died at birth"
"it must be so much worse to have a child who suffers for a long time"
"it must be worse having him die unexpectedly and never getting to say goodbye"
NO MATTER HOW OLD THE CHILD WAS OR HOW THE CHILD DIED, THE RESULT IS STILL THE SAME.............

Now, for the short comfort list:

"I am sorry for your loss"
"I miss (name) too"
"I am sorry. (name) had a beautiful smile" (or anything positive)
"I know how much you loved him/her"
"He/she told me how much he/she loved you and I know how much you meant to him/her"
"I care so much. I honestly don't know what to say"
"I can't begin to imagine what you are going through"
"I am so glad I knew him/her...they changed my life"
"I think about you all of the time"
"I miss his/her laugh and company" (or whatever it is you miss about the child)

So, the bottom line is that the best way to comfort someone that is grieving is by not saying much. Just by being there, letting them know you care in your way will make the grieving family eternally grateful to you.

Hope this is helpful.

Shelly

THANK YOU!

We would like to thank everyone that contributed to the raffle to benefit our family through Hearts of Hope. In times of such grief, an amazing thing happens....you learn that there are truly loving, giving and generous people out there that want to lend a hand. Most of these people we have not even met personally and that makes it even more inspiring.

Here are the winners:

1. E. Heckelman: $50 gift certificate to Cafe Bernardo
2. K & A Scott: A haircut with Angelina at Deeda Salon
3. G. Dyke: A birthday party at Max's Miracle Ranch
4. P. Thompson: A birthday party at Max's Miracle Ranch
5. R. Adamson: Photo session with Princess Photography
6. N. Baggett: Fireworks package

You should be hearing from Andrea, soon, to collect your prizes.

Thank you to all that contributed. We are humbled by your kindness.

The Duarte family

July 12th, 2009

Today has been a year since my mom passed. So much has happened this past year and I am sitting here having a hard time wrapping my mind around it. Two of my most favorite people I have met in my life are gone. Gone.

I mean, how did this all happen? Why? What the heck are my life lessons? Life is extremely complicated and there is no way to figure it out.

I have been told that the pain will lesson with time, but I have to be honest that is really not happening yet. Not with either of the one's I have lost. I was extremely connected in a strong way to both of them. In a way I feel very lucky to have had such deep love with them, but it also makes their loss harder because it leaves such a huge void in my everyday life. My mom and Faith were part of my EVERYDAY life.

There is not a day that goes by that I don't think of them. With Faith....I don't think even a minute goes by. I have her ashes in a necklace and I HAVE to wear it or I freak out. That is my way of having her as close to me as I can get her and it gives me comfort.

Monty has gone back to work, but I am home with the kids. I think Monty being out of the house, is coping pretty well. He has something to do everyday and is not in this house all day long with memories around him everywhere. It is not so easy for me trying to be here, trying to keep a "game" face on for the kids at home and give them all the attention they deserve when sometimes I don't even want to face the day. Morning comes and I don't really want to get up because I don't have Faith and I don't have my best friend, my mom, to call and cry to. The solace in that is that hopefully they are taking care of each other which is more important that my feelings.

But, my life has changed so dramatically and I am very lost. I don't know where to go from here. I am trying to pour my attention into everyone at home, but school starts in the middle of August...and then what? I can't stay home all day long without Faith. So, those are personal things that I will have to figure out on my own. Maybe those initial days of quiet I can find some time to really reflect on that. Reflect on what I see myself doing from this point on. I know it has to have something that has meaning. That helps a person/s in some way. I have the paperwork to be a volunteer at UCD, which I would LOVE to do, but I don't know when I will be ready to walk in there again. So many memories, but I would love to and someday I will have to try to go in and try to face the emotion and fear. Hospital life, especially at UCD, has been my life for 5 years and strangely I miss it. So, volunteering there and spending time with the great staff and children there would (I think) renew my spirit when I feel up to it. That may be my way to give back to Faith and I am pretty sure my mom would be proud of me as well.

So, today is just a hard one because of that year mark and reflecting on a lot of things. I miss my mom. I miss Faith. I hope they are at peace and that eventually I can find some of that peace, too, and bring back some of my happiness they took a little bit of when they left. Special girls they are. Both probably taking over up there in Heaven with their ultra amazing personalities! Both of those girls had such a love for life, music, people, dance..........Heaven is certainly a brighter place.

Shelly
- Love you Mamacita. Miss you very, very much. And, Faithy, oh...man...you know mommy loves you and misses you all the time. Take care my special ones and save me a place right next to you BOTH!

July 5, 2009

It has been a week...a week since her service. I honestly am having a hard time coming up with the right words to describe this week. The main thing is that the service made things FINAL. I was very busy prior to it...had lots to do, put together, arrange, etc. That is the way I work and like to be very busy.

But, now, the service is over and it is really hitting home that this is REALITY. There is no more Faith that is going to wake me up in the morning, no one going to ask me the same question over and over again 100 times in a 5 minute period, no one to crawl all over her brothers head, no one to sing to at night. It is and all encompasing grief. I wish I could say for other parents that it gets better, but at the moment I cannot. I absolutely cannot because for me...because I am not as busy...and things are really over....it is a million times worse.

And, if feels like she is so easily forgotten already by so many and that is very difficult. It is easy to understand because they have lives and have children to tend to, but it feels as if I walk in a bit of a fog and don't seem to relate to many right now.

I tried going out with friends to a few bars the other night. This is something I haven't done while Faith was here because of concern and having a knowledgeable person watch her. I will say, I laughed and thought it was fun. However, when I got home...all I could think is that ---is that was I was missing? If so, you can have it and I would MUCH rather be stuck at home with my "challenging" kids over most other things.

It is also weird to even have that freedom. That is a new concept. Not to be so afraid of how much public interaction you expose your sick child to, what you are bringing home, who is going to take care of them if your not there, what if there is an emergency. The list goes on an on. It is such a void I feel that I am not sure will ever go away.

Some people have told me to take on another kid. I almost had a heart attack because I need to grieve for Faith. That is first and foremost for myself and my other children right now. I will never say never, but I don't see myself being able to do that for a very long time. I am afraid of the heart break and there is no "replacing" Faith. She was one of a kind and all I want to concentrate on is trying to get better.

I start counseling tomorrow and my younger ones get to start grief group. My older ones just finished the group because of grieving for their grandmother. But, the older kids seem to understand this much better where the little ones could use the help. Thank heavens there are these programs out there!

Anyway, that is our first week. A lot of emptiness. But, with that emptiness the other kids are getting more quality attention. So, there are goods and bads, as always.

We are still holding out heads up and are now able to make it out in public. Nights are torture,but hopefully I can learn some self help skills with my counseling for that.

Goodnight to all. I am grateful to those of you that still check in even though Faith has left. This experience has really shown me the good people in my life verses the not so good ones. Valuable lesson!

I will check back in a week and hopefully be able to report that I am doing a little better. Maybe i will even get a dream by then like Monty did...the lucky guy!!!!

Take care.

Shelly