Sleep

I used to know what sleep was...before our final trip to UCSF. Now I think it teases me. It looms just past my cloudy mind. I've been trying to wear myself out at night to get to sleep but bedtime is slowly creeping later and later. Then I seem to wake up about 3am with little hope to get back to sleep. By the time my body finally passes out Sophia is standing next to the bed wanting me to go out to the living room with her and make her breakfast. Last night I tried a glass of red wine...alcohol has not been much on our list of things to have for the past 11 months, too many things could have happened and we wanted full senses at all times...usually 1 glass of red will relax me enough to fall gently to sleep but then Edgar came home from studing for a test he is taking on Thursday and needed to talk. Keep in mind he works swings so his best time of day is when I am usually falling asleep, needless to say I was up till after midnight...another 3am wake up...back to sleep close to 6am...Pia waking me up at 6:30am. Of course, it didn't help that I had to write Natalia's obiterary last night and choose some of her favorite music. I really do not know how parents who lose their child in an instant go on. We had 11 months to know that she would need a miracle to stay with us and the last month to really say goodbye. We are coping but it is extremely hard at times. How can parents who don't have that opportunity cope? Children are the future and when one is lost so is a piece of that future. What would they have accomplished if they had been given the chance to live? Thank God, we have our faith. To be absolute in the knowledge that Natalia is in God's arms and know that she is running, playing, loving and doing as only she could...only better now because she can help the world know God's light. Hold your children tight, make sure they feel secure and you tell them you love them often because it can all be gone in the blink of an eye. Make sure you don't have any regrets because the should ofs and would haves don't mean anything once someone is gone.

Actually thinking about writing a book about life, love and coping...what do you think? I just don't want another family to feel as alone in brain tumor land as we felt...yes we had all of you but no one knows until they walk the path just what it entails and there are so very few of us...Thank God!

Much love,
Roni

Favor and Insites

Hey all,
The favor I have to ask everyone is huge...please do not add to our own grief. We welcome your support, your words of comfort and most important your love. Just please leave your grief aside when you are with us. We have already cut people out of our lives who brought too much grief to the table. There is a reason Natalia's middle name was Joy. She brought that and more to everyone around her. She refused to give up her joy in life until the end. She was still going out and blowing bubbles and smiling until her body wouldn't let her anymore. Life, a true life, is not about grief it is about finding some joy in everything you do. If there is no joy in life...what's the point. At the end of every life is death, it is not mysterious it is inevitable. Life may last 100 years or be over in seconds. Why spend your whole life doing things that do not bring you happiness? If you want steak...have steak...my personal choice is brownies...are they good for me...not really...do I love the smell and calmness that overcome while I enjoy them from mixing batter to final eating...oh yea! There are some things in life that can be a drudgery...housework(David, I love the story about your Mom praying and being thankful about each family member while doing the dishes. My personal demon is dusting.)...Taxes...who but an accountant would love those...rush hour driving...the list could be endless but why make these things drudgery. There are positives in all "I hate to do them" things. Once you find your positive there can be OMG even some fun to be found in those things. There is more to life and Natalia showed us that even while dieing there is joy to be found. She died showing more grace and joy then a lot of people live their lives. Does that tick me off when I see it? Heck yes, but you know what, I am not going to let that get me down. We have received so much from so many. We learned that there is an incredible amount of goodness in the world and now we want to add to that. We will live life to its fullest and give a hand where and when we can.

Let that be part of Natalia's legacy...help others where and when you can. It may be cooking someone dinner...it may be drawing them a picture...just the act of love will brighten someone's day...Bring joy to others!

Much love to you all,
Roni

Life Celebration

Hey all, just wanted everyone to know some important things because as Dr Seuss says "Do not cry because it's over, laugh because it happened." We spent the day away from home getting the fine details taken care of. Natalia's ashes will be spread across Monterey Bay next Saturday. I can not say enough about Serenity Funeral Home. They have been incredible with us. It is easier to deal with practical side of death when you are with peaceful people and Mary and Allen emanate peace.

Natalia's Life Celebration will take place on Tuesday, April 7Th, at 10am. It will be at our church...Trinity Southern Baptist on the corner of Winery and Holland just north of Viking Elem. We would like everyone to wear bright colors and if you wish to share stories of Natalia there will be an open mike portion...Edgar will, of course, be saying "a few" words. Please anyone who would like to come please please please feel free to join us.

***In lieu of flowers, we would like you to donate the money you would have spent to either Family House or the Central Valley Make A Wish. If you have been reading the blog, you know how much these 2 organizations have touched our lives. Their information is located on the left side of the blog.

Note: Joni, your poems truly rang through our souls and said exactly how we are feeling...please anyone who would like to read them scroll through the comments of the "Goodbye Talia" post.

Yes, I'll probably keep writing for a while. As I have said before, this blog has become a great way for me to work things through in my mind. While I am at peace with Natalia's passing, I am working through the tsunami of missing her.

Much love to you all,
Roni

Goodbye Talia

At approximately 3:05pm, Natalia Joy Valle joined our Lord in Heaven. She is free of pain and suffering and probably already walking on the beach.

Surprises

Many people have stopped in to say goodbye to Natalia and it has been wonderful. She still hears everyone talking and even with just her right hand as her only form of communication she can still get her point across. While she hasn't eaten in the past 48 hours she still in taking a little bit of liquid that we syringe into her mouth. It was a huge surprise to Edgar and I that at midnight last night she got "chatty". Yes, she talked actually words from 12am to 7am. Some were actual conversations with you most were kind of out there. She talked to her sister...who thanks to Redd has been sleeping in her own bed...she talked to the fish...she talked about things I was to exhausted to understand. Until she said she was scared to die then I told her how wonderful Heaven would be. How God, her grandmother and all her great grandparents would be waiting for her...then it was back to out there talk. By 7am she had worn herself out and went to sleep. When she woke back up she was back to being non responsive. We are taking time to say thank you to everyone for all their support during this journey. Without you all this would be so much harder to bear but we have learned that no matter how bad our situation is it could be worse. We have all of you behind us while many families going through similar situations have no one. So once again thank you.

Much love,
Roni

The end draws near

I don't know how else to say this except brief and to the point. Natalia is now non-responsive and they have told not us to give her anything but her morphine. She can only squeeze your hand occasionally to let you know she hears you still. We sit by her and read to her and talk. Her breathing has changed and is more infrequent. She is slipping away from us more and more. I can't seem to get through an hour without crying. Sophia knows that sissy is dying and is jealous that sissy will have wings and be able to fly. She has her very sad moments but between Redd(the puppy) and J keeping her busy she seems to be handling it ok. She went straight in to Natalia tonight to tell her she loved her and missed her but that she knew sissy would be watching her from Heaven so it was ok. I lost it...again.

Much love to you all,
Roni

Everything for a Reason

Morning all, yes it is early but not by choice. I was actually completely passed out in bed from another late night discussion when whining and collar jingles woke me up. Yes, Redd is a good boy...he needed to potty so Mama had to get up and walk him because peeing on the peepee pad would not do. Now he is sound asleep next to me while I write. Things are not going well. Natalia has lost the ability to move herself and is losing her gag reflex as well. Some of you may remember that is what hospitalized her in late June at the end of her radiation therapy. Basically, Edgar and I believe the only reason she is still with us is the steroid she is taking. Dr Banerjee had told us that if we took her off the steroid 3 weeks ago that she would possibly last 2 weeks. We weren't prepared to do that yet. A friend wrote me yesterday that after caring for a dying family member in great pain for while you begin to pray for their death. For God to lift them up and take away their suffering. We've gotten to that point. She is no longer our laughing, loving little girl. She has become trapped in a body that is no longer hers to control. She has lost interest in most things and is beginning to see and insist on things that are not there...I hate all these drugs she is on. There are drugs to keep her brain from swelling, to keep her stomach lining intact, to keep her chest from filling with liquid, from having pain (HAHAHA), another liquid pain med and a anti anxiety med. Is it any wonder she is seeing things? We are going to ask the Dr if we are at will to taper the steroid or if they need to schedule it. We need to set her free. What we said we would not do with surgical procedures and hospital stays we are now doing with the drugs and it time to let go.

My longest best friend in the world, Katie, will be flying in from Denver today. I have known Katie since we were Natalia's age. I used to throw apples at her and her brothers from Marty Roberts backyard...Katie lived on the next street over and it was war of the streets 'cause the cool kids lived on Harris St. She would, of course, disagree about that. Anyway, as soon as she got the news that we were in the final stretch with Natalia she called me and said she was coming, no matter what. We have not seen each other since she was the maid of honor at my wedding eight years ago. It could not be a more perfect time. We need help with Pia and of course a little more emotional support for us.

I need to talk to my supervisor today when I go in to clear my desk. Edgar can not be home alone with Natalia for what is to come. He stood up wonderfully during the last 3 weeks but now we need each other more then ever for the end of Natalia's journey. I want to make sure everything I can get done gets done. My supervisor has been awesome about letting me know that they are there to help support me and take of things when I have to be home. She has also been been good about letting me work when I need to...some days I probably cried more then worked but I needed try for my sanity to get my mind off things at home.

We say it a lot but it needs to be said. The Lord has blessed us greatly along this long journey we have been on. He has brought us many new friends, shown us wonderful sights and shown us how amazing and compassionate the world can be. Edgar likes to say we are the tree and all of you are the soil our roots grow in. The soil is very rich and fertile because we have grown tall and strong. So thank all of you for your support during the past year because without it I don't think we could have gone on at times. We will have an incredible legacy to live up to when she leaves us. We just hope we do Natalia justice.

Much love to you all,
Roni

Must Watch

All, you must check this video slideshow that Tom McCartney put together for us. It is of our last trip to Monterey and is too amazing for words. Thank you David and everyone in my Sunday school class for making this opportunity possible. You'll need to cut and paste the site below as my brain does not seem to allow me to hyperlink the site at this moment. Love to you all, Roni

http://shareitvideo.com/watch.php?k=389001057528672

New Family Member

Yes, we got a puppy last night. We got the ok that the complex would now be accepting pets on Tuesday morning. By Tuesday night, Edgar and I had bought a dog bed, food, collar and leash...we also headed over to the Clovis SPCA and found Redd. He could not come home with until Saturday after he had been fixed. We were so excited we could hardly contain ourselves but we managed to keep it from the girls. Edgar got the call on Friday at 3:30pm that we could pick Redd up early and so began a very long hour and a half until I finished work and we could go get him. He is an extremely mellow dog which is good considering his main caretaker has a ton of energy. Sophia spent the first night in her own bed since I can remember becasue Redd slept in his bed on the floor and kept the monsters away.

Natalia is slipping away from us more every day. I think we could handle things much better if the moments of extreme pain weren't involved. Those are the moments cause us deep soul pain. During those moments I try to comfort myself by thinking she needs to experience this pain now so that she can empathize with others when she is an angel. How can you help those most in need if you have never known pain? She is spending more time sleeping and is losing interest in many things. She still loves to go out and blow bubbles and enjoy the fresh air. She was not quiet awake the other night when she kept telling Edgar and I that she was swimming with the fish and they all knew her name and she knew all of theirs. She kept saying she wanted to go home. Edgar told her over and over that she was home. She woke up the next morning in the best of moods...something that hasn't happened in a while.

Much love to you all,
Roni

Those Moments

To have this time with Natalia is truely glorious...because we have an oportunity that many families do not...the chance to say goodbye. A chance to store up smiles and laughs, as strange and wonderful as those laughs might sometimes seem, we have them. It just hits you hard in "those moments". This week mine have been putting away the laundry, looking at all her clothes and thinking the time will come that I need to pack them away. Another was Sunday school, it was all I could do to keep myself together. I kept thinking Natalia should be downstairs in her classroom, but that it was just going to be Sophia and I from now on. Huge sorry to David, I really wanted to thank him more for arranging a photographer to come take candid pictures of us during our trip to Monterey. Edgar had one of his moments taking Pia shopping and knowing he was not buying Talia her spring/summer shoes. As much as these moments truely bite, they serve to remind how much this child means to us and how much we will have to live up to when she passes. And that we have been blessed with time.

Much love to you all,
Roni

The week in review

What a week it has been. Natalia is getting weaker but we saw some revival yesterday after the nurse came out to help in the poopoo department. Yes, she needed to and hadn't in the last 5 days so to say she was cranky and in pain was an understatement. While her body is slowly losing the battle her mind is as sharp as ever. She has one liners and zings that just pop out to make us all laugh.

Sophia and Edgar went out yesterday for some one on one time. Papa took her to buy new shoes...as I have been shopping with Pia I knew what to expect but Edgar learned that his youngest learned very good shopping skills with Mama last summer. She knows what her boundaries are and does pretty good at sticking to them...ie she stays by your side and doesn't ask for everything she sees. She also knows what she likes and it doesn't take forever to choose something. She told Edgar that "shopping would be so much easier if she had her own credit card." Oh yes, it has begun. She also is a little trend setter...when Edgar held up a pair of sneakers for her to check out she told him "oh my friends all have those" expecting to hear I have to have them too he was quiet surprised to hear "I need something cuter."

Edgar and I went to dinner with friends last night. We have found our new "place". It is Rio, a Brazilian dining experience, over in the Sierra Vista Mall. Love it! Anyway, it was relaxing to get out and enjoy what is and what will be. We just talked about stuff...normal everyday stuff and it was great.

If plans come together this morning Pia and I will be heading to church while Natalia naps then off to the park with the 4 of us. We want to get her out in the fresh air for a bit. We have blown a lot of bubbles on the patio now it's time to explore the park.

Much love to you all,
Roni

Incredible Week

Hello all, this week has been quite a bit quieter then last. Which was good because this family is tired...and finally caught up on rest. We got to see a lot of friends and loved ones last week. In fact we had visitors every night. The girls (and Mama & Papa)truly enjoyed seeing everyone. The best part, Natalia had no problem telling people when to leave, she had had enough. On to our weekend in Monterey...

On the 27th, when we got the news that the tumor was growing again, one of the first people we talked to was Jeannine. We said we were taking the girls and my parents to Monterey. This has always been a special place for this family. Edgar and I spent part of our honeymoon there and we took Natalia when she was just a few months old...and about every other month since then. We told her we were finally going to stay at the Best Western Beach Resort...we had been saying for the past several years that we would stay there the "next time" we went. Wellllll, J got right on the phone to Best Western and a few days later...they comped us 2 rooms and breakfast. WOW! Not only that...we were stopped at Casa de Fruita when I received a phone call asking what types of things Natalia liked. When we arrived at the rooms there were goodie bags for each girl filled with notepads, markers, colored pens, paper, photo albums, stickers and kites to fly on the beach...oh yeah...and cupcakes that said "Talia" across the top. Andddddd...fruit, cheese and cookie trays were delivered with balloons and sparkling cider. Edgar and Sophia took a little swim in the pool while Natalia rested. We met up with Tom(a photographer)at 3:30pm. David, my Sunday School teacher, had arranged for us to have candid shots taken by Tom while we were in Monterey. David said he racked his brain to think of a good way to help us...those of you who know us know we are picture crazy...it was the perfect thing. Tom shot for about 1 1/2hours all over the hotel and the beach.

Edgar and I carried Natalia's wheelchair down the steps to the beach. She said it was a blast. She got to feel the wind in her hair and the ocean at her side. She even took the piece of seaweed I handed to her before she realized how slimy it really was. Edgar and Pia ran with the kite and Natalia laughed at them. Dinner at the hotel was amazing...not just the food but the atmosphere. The restaurant is on the top floor with large windows down one side and mirrors down the other. You have an ocean view no matter where you sit. At breakfast, we watched a group of 12 sea lions swim and sleep just off shore. Amazing!!!! Then off to the aquarium, where each girl had their own must see items. It was fun but very draining. It would hit me every so often that this was the last time we would all be there...worse when we got home Sunday night. How's this for coincidence...as we were leaving the restaurant after breakfast a waitress stops me and says "I hate to impose on you but your story touched me so much. My 24old son has recently been diagnosed with an astrocytoma." I am beginning to hate the word impose...Shannon...there is no imposing and if there was I would have no problem freezing you out...I'm kind of good at that. I just thought wow, and calm over came me. Here was another mother who was about to start one of the hardest journeys of her life. I hugged her and told her there is always hope and not to give up the fight. I told her a brief summary of our journey and told her to urge him to give treatment a chance...we were only supposed to have until September '08 and she is still here. We have the chance to say goodbye and not have to wonder what if...

These last couple of days have been spent in recovery. Natalia was really worn out when we got back...ok, we all were. I'm tired now so I won't go into to how we are doing physically and emotionally...I just don't feel like crying tonight. It has been way to close to the surface all day. I feel good and strong enough to get through this time one moment and ready to shatter the next.

Much love to you all,
Roni

Laughter and Tears

First off, Edgar would like me to carify for everyone that the 400lb club is for the bench press not body weight. He can already lift 350lbs and needs to get up to the 400lb mark by May. I am totally confident that he can do it. Next we are both laughing because we feel like we have become Natalia's social secretaries. She only lasts about an hour before she tells people to get out...actually the words last night were "the girls need to go home now." She is glowing from seeing her friends and loved ones. She loves the hugs we love the glow...she actually beams. This is where the tears come into play. We cry because we see her so happy, others cry because they know this may be the last time they see her smiling face. There is no shame in these tears just tribute to the amazing little girl Natalia is. She has been sleeping better at night because(I think)she is confidant that there is no more hospital in her future no matter how sick she feels. She will not have to leave the place that she feels the safest...home. Both girls are totally excited about the trip to Monterey tomorrow. We are staying at the Best Western Beach Resort...right on the beach just before you get into Monterey. Can not wait to see the absolute peace that comes over Natalia when she is at the ocean.

Sophia...between Jeannine(her godmother) and us we are buying her smiles. J bought her stuff that she "had to have" for the beach and...(the typical parents will hate you for it) Hannah Montana light up singing microphone. Ya...love you J. LOL My parents kicked Edgar and I out of the house for some alone together time and what did we come home with for Pia...a nintendo ds. She would sleep with it if we let her. She will not leave her sister's side. J finally got her out for more then an hour and Pia was so much the better for it. She knows sissy is sick and not getting any better. Well, got to get back to work and I refuse to have puffy eyes in the office if I can help it.

Much Love to You All,
Roni

Ompa Pics

Sounding Post

Today was interesting...I say this because we had some very high highs and some low lows. To start off a bit about the weekend...Sophia's play was a huge success. Natalia was unable to go to performance because she was just to tired and it would have been to loud for her. So Edgar and I did split shift on Saturday. I went with family to the early show then raced home to switch places so Edgar and Anthony could go to the afternoon show. Once Edgar saw the performance all the driving clear across town at bad hours for us made it all worth it. She was incredible and the fun she had performing was to beautiful for words. Ok...last show on Sunday she was the comedic relief...picture this...Ompa's finish their scene and head off stage left...all is quiet...Pia jumps out from the curtains, strikes a pose and says "goodnight everyone". OMG!!!! She brought the house down. The kids all had a great time and the show made everyone smile.

Now for the day...this morning we met one of Natalia's hospice nurses. She was very nice. Then an hour later we met our social worker Mary Kay...bared our souls(she's that kind of person, helpful in her line of work)...cried a lot...had a smiley face cookie bouquet delivered to us...laughed a lot...Mrs Hansen stopped by to read a book for lesson...Edgar made awesome dinner...had a spontaneous party when lots of friends stopped by to see Natalia...met with some of said friends to discuss what comes next...cried a lot...reminded them that they are family and are part of us...can't get rid of us now...Edgar went to gym to get huge muscles so can join the 400lbs club at work...ate some home made brownies(did I mention spontaneous friends came bearing gifts of brownies cookies and flowers)...put girls to bed...sat down to computer to tell everyone that they make a difference in our lives. We love you all!

Life is a celebration. Yes, there are some major downers along the path but if you never travel that path, if you just sit at home and do nothing all the time, you will never experience all the joy the life has to offer. How can you know true joy if you never experience true pain? Natalia brings both to me. I am sick to my soul that I am losing her but I have the joy of having spent this time on Earth with her and know that she is going to be with the Lord and will be waiting for me. I know that as long as I never lose her memory she will always be with me whispering in my heart. Celebrate the wonderful girl that touched so many people, that caused many a parent to just go home and hug their children a little tighter. Someone wrote me an email saying that while they did not know the grief of losing a child they knew the pain of losing close loved ones...yes, a child is different because our children carry all our hopes and dreams of the future...but you still know the grief of loss...and believe it or not...it helps...love helps...no matter what form...to know that we are not alone in the world...I think I'm rambling...Edgar did most of the talking today(as usual, I'm the crier) so tonight I get to write...I always feel better afterward. I think I'll stop now before I really become incomprehensible.

Much Love to you all,
Roni