simply amazed...

The other night, Sadie's story was featured on the channel 5 news here in Salt Lake City. (Here's the link to the KSL website: http://www.ksl.com/index.php?nid=148&sid=2928282#) I was so impressed by T and Zac. They have such amazing strength and have such love and faith. It continues to astound me everyday. One of the great things about the story was the comments on the story afterward. There was such a strong support for the family and so many people, who don't even know the Huish's personally, offering prayers, sympathy and support. If there is anything great coming out of this situation, it is the fact that it is bringing out the best in people. It is causing people to stop thinking about the small, minute things in their own personal life and focus some very real faith and love to someone else. It's completely selfless and completely beautiful... In a world that is supposedly filled with negative things, this situation reaffirms that there is something sincere and selfless about humanity. That fills me with hope.

It's been amazing to see the support to me personally as well. Honestly, I haven't been taking this news very well at all. I tend to lay in bed at night and look at the lights over the Salt Lake valley and just think. It's almost a numb feeling at times and I find it hard to find motivation - It's strange to admit. I mean, I'm Sadie's uncle. I'm not necessarily that close with my uncles, so I feel at times that it's odd to see myself in such a complete mess about this. But then I think about my nieces and nephews... Oh my God. They are all such great kids. I may not see them every weekend or send them cards on birthdays, but I love them like they are my own. I mean, I think it comes with being gay... I may not have children of my own, so I completely adore the relationships that I have with each of them. Its the small things - like recently, before anyone knew of Sadie's condition, I met T at the South Towne Mall and was there when Sadie and Olivia got their ears pierced. I cherish those moments with all of my nieces and nephews - and now this situation makes me cherish them that much more... But, I think people around me have noticed a change and know of the situation and have really stepped in and helped me during this time. Scott has been a damn saint - he keeps all of his opera friends and his co-workers up to date with the race and Sadie's condition. He also gives me space when I need it, or comfort, or just let's me cry on his shoulder. He even posted a comment on the KSL website, rebuking the nasty comments, then leaving a positive message let people know about the 5K. I feel really grateful to have him during all this. And then there are friends that I have had little contact with before, who have called or e-mailed and wanted to know that they are thinking of me and the family. It makes me realize what a tremendous support I have as well.

It is such a bittersweet moment for me in life...

By the way, people keep signing up for the 5K everyday. Since I'm the one who put together the team '5 for 5 - 5K for 5-year-old Sadie huish' on the Salt Lake Marathon page, I'm the team captain. So automatically, when people sign up for the race, it sends me notification. It is going to be so intense - so many people have let me know of their support for Sadie and the family... I can't wait to see the turnout.

I need to update the other blog, but check back at five-for-five.blogspot.com. There will probably be more information about shirts and whatnot in the next week or so.

Happy Easter

So, it's one in the morning. Scott is asleep on the couch and I'm tapping away on his laptop in the bedroom. The apartment is very quiet and the only sounds are of passing cars and the occasional Trax train speeding by. I feel good today and it feels good to say that.

I worked the closing shift tonight at work. It was a busy, hectic mess at work, but exciting nonetheless. It was the night before Easter, so everyone was frantic getting their last minute gift ideas and ingredients for meals, etc. One of my main jobs tonight was writing names on the individual chocolate eggs... God, I don't think I can even count how many I did tonight... But the whole hussle of the shoppers and the abundance of pastel colors blurring by really got me thinking about Easter. For a Christian, it is such a miraculous holiday. In fact, I'd go as far to say if you were a believer of Jesus Christ, Easter would be the pinnacle holiday in your book. Sure, Christmas is fine. Yay for an immaculate conception and all - but the resurrection?! That is incomprehensible. It is something worth celebrating - I hope that more people do an incredible amount off celebrating today. As for me, I'm reveling in the fact that I have the whole day off to spend with the man I love and enjoy a holiday that is symbolic of life and new beginnings.

Regardless of who you are or what you believe, I hope you enjoy a great Easter.

Can't sleep~

I can't sleep again. It seems that moments where I have to stop moving and the only thing I really am able to do is think is when I fall apart. I can't stop thinking about my niece. I'm haunted by a memory of just a few days ago of my sister, on her 28th birthday, telling me through teary eyes that the doctor just told her that even with radiation Sadie is expected to live another 8-12 months. My feeble optimistic response was "Well, they said only 6 months before - so that's improvement, right?" And she just looked at me. And I just looked at her. And we cried. It was a very intimate moment and one that will stay with me forever.

I have to admit, there are very few times that anyone actually sees me break down. Bless Scott's heart - he's seen (or been on the phone with me) most of the times when I really lose it - but for the most part, I seem very optimistic. It seems almost cynical - there has been an incredible amount of drama at work and Scott has had some major issues with the coming together of the production of his opera - but there is no way that they compare to the look I saw in my sister's eyes. And as a result of that single experience in the hospital last week, there is no problem that even compares to it. So when I hear ladies complaining at work about management or management complaining about associates, I am able to let things roll off my back and find a way to improve the situation - because it just doesn't compare. When Scott tells me that the score for his opera doesn't match the script, I recognize that the problem is big - but it doesn't compare. And I feel bad because I know that these problems in other people's lives are very real but there isn't any one of those problems that come close to the look in her eyes.

And so I find that getting cut off in traffic, or missing a work-out at the gym, or getting a larger phone bill than I expected or finding cat fur all over my black work pants - while annoying - are not worth getting upset over. It's like the little nuisances of life have somehow become moments of 'Huh. That really sucks.' and I'm on my way.

And at the same time, I find that I am happier in many ways - I'm noticing more the little things that bring me joy. I've gotten rid of many things around my apartment that are old, used, or doesn't have a good energy - and I toss it. Regardless of the sentiment or how long I've had it. And the little things that I find that bring me joy and have a good energy, I hold onto dearly.

I suppose that this situation with my niece has given me a new perspective on life. I do enjoy it more than I did and I don't let the little things get to me...

It's only when it's late and I'm left to my thoughts that I remember what gave me this new perspective - and I find it hard to close my eyes.

E-mail

I had just finished my last post when I got this e-mail in my inbox:

"Our dear family and friends---

As some of you are aware, we received the heartbreaking news yesterday that our sweet Sadie has brain cancer. In just this last week she had been complaining of headaches here and there, and would hold her neck when she would have these headaches. This "headache" would only last for seconds, but was enough to catch our attention. We had also noticed some changes in her speech and her balance when she walked. It seemed more pronounced over the weekend, so we took her to the doctor yesterday morning. After some different questions and checks, he ordered a CT scan of her brain/spine at Primary Childrens. We headed up there, she did the scan, and they found a mass on her brain. Later last night they did an MRI for more details, and through this test it was concluded she has what is called a high grade glioma tumor on her brain stem. Because of the sensitivity of the area, (the brain stem controls functions like mobility, speech, vision, respiratory, etc), and as the tumor has intertwined itself to the brain stem, surgery isn't an option, and getting a biopsy to find out more about the tumor isn't an option. They concluded it was malignant as one portion of the tumor seems to be moving more aggressively, and has killed tissue around this area. So she has most likely has the tumor for awhile, but only now is having symptoms as a part of it has become more aggressive. She will start radiation therapy in the next few days, and we will see what effect this has. It isn't a promising situation, but we rely heavily on our faith and we do believe miracles can happen. Our Sadie is strong and a fighter, and we will take this day by day. It is very surreal that we are sending this e-mail to you, but want you to know of the situation if you didn't already, and to thank you for your prayers. We have been truly humbled by the outpouring of love and concern for Sadie and our family. We will give more details as they come, as this seems like an effective way to keep everyone updated. Thank you again for your friendship and love.

Love,

Zac, Tiffany, and the girls"

Again, to anyone who might be reading this - please keep my sister's family in your thoughts and prayers. It seems to be the only thing anyone can really do at this point. Thank you...

My idea of her future

I just wanted to say THANK YOU to everyone who read my last blog and who sent me words of comfort and encouragement. I truly have some amazing people in my life - thank you for your love and support for me and more importantly, thank you for your love, faith, hope and support for my niece.

I received news today that the tumor on my nieces brain is very severe - to the point that they are giving her about 6 months to live.

I really don't know what to say.

I am just finding this so hard to believe. My brother called and talked with me today and all I did was yell. I was so angry - not at anyone or anything - but so livid to the point I was shaking. And then I broke down again - I just feel so helpless in this situation. I don't understand why a five year old is faced with this sort of challenge and I don't know how to help. I just wish I could...

I was planning to go out with one of my best friends Holly this evening. I decided to take a quick shower before I left and for some reason the reality of this situation really sunk in while I was standing under that hot water and I sobbed uncontrollably. I don't usually do that - in fact, I could count on one hand how many times I've really broken down. But it was strangely therapeutic. I feel like after that experience, I can attempt to be optimistic and if, in fact, the doctors are true and there is only this short time left, then goddammit, I'm going to make that time as comfortable as possible for that little princess.

While I was driving tonight I was thinking of what bullshit it is that Sadie won't be able to live a full life with experiences relating to growing up and maturing. And then I thought of her life - vividly - if she made it through all this. I saw Sadie making it through all these procedures, weak but alive and making a full recovery. She makes friends with other kids in the hospital as she's recovering and she ends up keeping in touch with these people throughout her pre-teen and teenage years. She has braces when she enters her teens. She experiments with coloring her hair - she tends to lean toward darker colors because she's so sick of the blonde she's had her whole life. Theres a day where she is hanging out with one of her friends that she met while she was in the hospital when she was a kid and is introduced to a boy she falls madly in love with. They date all through high school but after graduation things get a little weird, so she decides to spend the summer with her uncles Nik and Scott in Chicago. She works part-time running the counter in my bakery - makes a little cash, enjoys the night-life, dabbles in painting and other forms of art - when she realizes that she misses Utah and her immediate family. She had been heavily involved in the LDS religion her whole life and thought she needed a break from it - but the time away from Utah makes her realize how important it is to her. She decides to go on a mission - somewhere foreign and she easily learns a new language. When she returns, the boy she had dated in high school meets back up with her. They fall in love. They get married. I make their wedding cake (and she helps, with the experience she got with me in Chicago)... (and the cake looks fierce). Later on they have a few children of their own and she is happy. She doesn't remember much of when she had the brain tumor - she just feels it was something that she had once. Like the chicken pox.

Is it strange of me to see all this? I wish it for her. She deserves life. She deserves to live. And I pray to God she will.

Relying on faith

I woke up this morning and something just didn't feel right. I tried to do yoga, I tried watching hilarious clips on youtube but I just couldn't shake the funk I was in. I was driving to work when I got a call from my oldest sister, Heather. She wanted to let me know that my other sister, Tiffany, was taking her oldest daughter to the hospital to get a CT scan. Apparently, Sadie (my 5 year old niece) had recently been having trouble balancing and her speech was different. Heather didn't know much more than that, just she just wanted to let me know. (My family is very thorough about letting the other members in the family aware of whats going on.) So I told her I'd keep my phone on me and wait to hear any other information as soon as possible.

So after that, I worried. I get that from my Mom. She is notorious for expecting the worst. And part of me has always held that inside of me as I grew up. But I tried to remain positive and hope for the best.

Well, about an hour goes by and I got a call from my Mom. She called to let me know that my niece has a tumor on her brain stem and they aren't able to operate. The next step at this point is chemotherapy and radiation. I broke down and she broke down - and the rest of the night was a blur of worrying, praying, random updates from family, calling Scott and breaking down again...

I'm of the belief that all things happen for a reason. But there are somethings that I can't see the logic in. I don't see how a 5 year old girl, going through the pain and ordeal of chemotherapy and radiation can be justified in any way. True, we as humans can only see so far in the grand scheme of things - but I can't think of a situation more fucked up than this. Children shouldn't have to face this type of situation... As a child, I faced the death of a parent. That, in itself, is not right. But to be a child and face the possibility of losing your own life? Can a child even comprehend that?

And I'm so mad. I'm mad that my sister is having to face this. My siblings and I went through hell losing our father at an young age and the fact that she has to see her own daughter go through a similar situation infuriates me. I just don't know what to think. And I don't know what to say. I feel so incredibly helpless - and I just wish that I could do something. Anything.

And instead I'm blogging. And I'm thinking of my problems of last night - The fact that I didn't go running or that I feel like I need to whiten my teeth or that I didn't get enough accomplished in the day... It just seems so minute and insignificant. And I was thinking earlier that I only have a few more days until pay day or a few more weeks until Scott's opera - But what is a few more days or a few more weeks? Wasted time? A temporary filler until a certain date? I can't help but think of my sister and wonder whats a few more days or weeks for her...

I know I need to change my mind frame. There isn't any benefit in looking at the negative but I'm just having a difficult time right now with not knowing what's going to happen from here.

For anyone who might be reading this - I ask you for your prayers, your faith, your positive energy and attitudes for my beautiful niece, Sadie Huish.

Olivia and Sadie

Sadie, Me, Olivia