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Wednesday, May 27, 2009

Negativity

(To all the friends, family and strangers who have been supportive and amazing, please feel free to bypass this entry. I love you all.)


It was bound to happen. I figure I'd get this blog entry out of the way first and leave negativity to sleep with this entry before I go on to post all the positive and amazing things I have to talk about.... Because anyone who knows me knows I will go to ANY extent necessary to defend and protect my children. ANY.

I was directed this morning to one of the many articles about my little girl. This one, however, was loaded with some hatred and criticism.... judgement at it's finest. I have come to realize that even in the situation of a dying child, there are those people out there so hopeless and full of hate, they cannot even sympathize. I am assuming those people with hateful words probably do not have children of their own, and cannot grasp the concept of being willing to do anything for your child.

Anyone who has spent time to read back on my blog or that knows me prior to this knows there are some factors in our past that could be grounds for someone to judge us. I am going to be completely candid here. Yes, we did go to Disney a few times a year. Yes, we short-sold our home at the end of 2008. Yes, we have wanted to live in California for some time now. Those 3 things seem to be targets for criticism among strangers who feel a need to pick apart our current path in life, and for all I know may even give those who know us well some unease as well. But to call me a "train wreck" is something I will fight anyone on. Given the last 18months of our life, I will take credit for keeping it together for the most part. I know plenty of people who in my position in life would have just given up on it all by now. That claim, that judgement of being a "train wreck", I deny.

I honestly don't feel I should HAVE to justify any portion of our past, but since there are some out there who feel it is okay to disregard the life of a child through judgements, or to the person who insinuated that my daughters illness was karma.... here you go.

Grounds for judgement: Moving to California? No.
I have always wanted to live in California, but never on these terms or in this situation. I wanted to go there on a job promotion with my husband and where I could work a part time job, where we could live comfortable. Read that in my back-blogs, instead of picking out the particles of it you want to pick at to make your judgements sound juicy. Where we could go and be healthy and live a normal life, visiting the beach and Disneyland on a warm weekend without worry. Having the ability to drive the 6hour drive back home anytime we wanted to to see family. NEVER did I imagine or would I have chosen we would have to go like this, or that we would be forced over there on the minimal salary he makes, possibly separated since he may have to stay here to work until he can relocate over there, and where I couldn't even get a job if I wanted to because my baby is sick. My life in California now will consist of the inside walls of hospitals and the Ronald McDonald house until she has her transplant. Our life in storage while we move into a small apartment, not going to the mall or Target on a warm weekend, let alone Disneyland, because of her weakened physique and immune system. Maybe going to the beach for a day, but without my daughter being able to jump waves or dig in the sand and at constant fear she will get skin cancer- a common risk with transplant patients. All I can think about now is moving back to Arizona when she is healthy enough to do so, because life is different now than it was last year when we wanted move there. So someones comment I read today about being able to move there now and live my "dream life" with the assistance of people's hard earned donation money is a sickening and morbid comment to make.

Grounds for judgement: Disney trips? No.
We go to Disney a lot. It's what my children love, and we love taking them. People obviously need an explanation as to why or how we went so often, or even a lesson on how to go to Disney with a family of 4 for just a couple hundred dollars. Last year, we went early in the year and had an amazing time. That trip was well planned out, budgeted for and saved on due to our experience on going with a small budget. Right after our first trip, we unexpectedly bottomed out with many difficult instances we were faced with- those instances I feel no need to go into detail with but please be assured they were not expenses we were prepared for. Those instances led into us falling behind in income and causing struggle with our mortgage. We had zero intention of going to Disney again for a LONG time because we initiated the short sale process on our home, when my mother offered to take us and pay for our December trip as a Christmas gift for us, along with renewing our annual passes for the next year. Our Christmas trip was tradition and something she was not willing to let us miss, and for that I am now grateful. Especially since all of those things we are now being judged on occurred before we even had a second to consider something might be wrong with my daughter. She was a normal healthy 4 year old until March 2009.

Grounds for judgement: short-sale? No.
The short-sale was the best thing we ever did. We were behind on our mortgage, and would have killed ourselves attempting to catch up on it. Looking back now, getting out of that house was the best thing possible. It put us into a position today where we are able to tend to Gabriella's health better. We have saved so much money renting and living closer to our jobs that we are completely current on bills, have paid down debt slowly, and have some money in savings (of our own, not donations). We have also saved 2 hours a day of driving- that time well-spent with our kids. We also are not stuck in a home we would probably have to foreclose on anyways since we have to relocate and the value is so low, because dealing with a foreclosure while focusing on my daughters medical status is not something I am going to want to deal with. We were blessed to be able to short-sale the home, sparing our credit from a foreclosure, and also getting us out of the obligation come time to move. God prepared us for this in even the oddest ways, our home being one.

Just as we go to Disney often (and we have gotten so good at going cheap), some people go to Baseball games and drop over $100 on tickets alone plus parking and food in one afternoon, which we only do if we win tickets or are given them. Some people buy designer purses or clothes and we shop at Target and Old Navy and I sew my own bags. Some people concert hop, seeing their favorite bands and going a few times a year to concerts that cost over $50 a ticket. The last concert we went to, the tickets were won on the radio by my sister. So if anyone is truly that concerned or lacking in trust whether donations will go to my daughters heart or to "frivolous" spending, then I urge you to hold onto your funds for a child you feel deserves to live more than mine does.

I guess in my blog I should be more specific about the generous and amazing family we have that actually do those kinds of things for us. THAT is Karma. Because before WE became the charity case we would have done anything for anyone, just as people are reaching out to us for right now. Unfortunately, once I post this, I am going back in time on my blog and making private the posts I feel are being violated and judged. Not to make us look better, because all the judgements have been spelled out here, but because I feel the less tools you give to evil people, the harder they will have to work to get to me.

We didn't ask for any of this money or fund-raising. We asked for prayers and love. The money and fund-raising was all initiated by others whether they were the ones facilitating it or just the ones wanting to give. And whether people were giving their financial support or not to us right now, we would still be the people we are and would still do whatever we needed to to get my daughter a new heart. The $$ donated has been out of love and hopes and TRUST, and the donations from negative or doubtful people do not need to be part of my daughters heart.

All I can give to anyone is my word that this loving money will be locked away in a Trust until we are in desperate need of it. I am still working now, and my husband is working overtime, to be able to save enough of our own money for as long as we can. I am slowly selling items we have stored away for no reason to help assist in our daily living for when I do leave my job, so we do not tap into our loving well of financial assistance until it is time for her transplant. We are still paying every single copay, medicine and expense of our own family, as well as cutting back on luxuries to reduce expenses for day-to-day living.

Be prepared, negative people. We are going to the Zoo, Aquarium, Disneyland, ocean, etc..... some of it as a gift from people and some of it on our own money, none of it from the generous donations given to us. Right now it is about building memories and living life. Filling photo albums and fulfilling my daughters requests.

Every time we go to visit our doctors in SoCal, we will stop by in Disneyland, and I will post pics after. We will use the annual passes my mom bought for us to get in, we will Priceline a 2 star hotel for $25 that night, and we will pack a sack lunch. And when we are sitting on Main Street, and my daughter is smiling ear to ear because SHE is in the most magical place in the world enjoying those so very precious and few moments she is 'just Gabriella' and not a transplant patient, I will say a prayer for the heart of those who feel she should be deprived of that moment.

If she died tomorrow because of this, I am sure you would regret your judgements.

My husband quoted it best... "When God is giving His blessings, the Devil is at his best!"

ETA: And now the validity of her medical situation is being doubted. I give up, I truly do. Doubt me. Judge me. Just leave me alone if you aren't in support. My daughter deserves a mom who can focus on her health and not dealing with hateful hearts.

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