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