I don't even know what to say about this week. It started off pretty good, with Brinley feeling great, and with me finally starting to hope that the pain was subsiding and our old Brinley was back for good. So the first half of the week went great! Then David got busy at work and things turned into almost a 70 hour work week for him. It's always harder when he's gone more, because we really are a team, and when half the team was missing we really felt it. I am very grateful he is such a hard worker and provides for me to be home though.

Starting Wednesday, Brinley woke up with "the eyes" that tell me she is not feeling well. Sure enough, there was the beginnings of the same symptoms we have been dealing with lately. Brinley and Jade were invited to a royal ball at Cinderella's castle through HopeKids that day. And thank goodness for that, because it was just the distraction she needed, even though she wanted to be carried most of the time...The girls had been waking up every day saying "is today the ball?" It finally arrived, and what an event it was! They dressed in their most beautiful princess dresses and headed for the ball with mom.






Upon arrival, they were sent to get their make-up done...




They met Cinderella right away and presented her with the pictures they had colored for her...


Seriously, was there a princess that was NOT there?? It was like a princess buffet, with all you can imagine princesses.




We all know Brinley's favorite, she couldn't even take her eyes off her for the picture.

After dinner, they had the Ball, with all the princesses dancing the night away. Jade took a liking to Jasmine because she spent a lot of time dancing with her. Jade's friend at school told her she saw her dancing with Jasmine on the news, but we couldn't find the clip to watch it. I had been watching the wrong station :(


Here is the castle the Ball was held at. It was up in Layton and was the most beautiful place. We really loved every second of it.


Before I move on, just wanted to remind you of the fundraiser HopeKids is having. So many people have asked what they can do. This is a great way to help kids in Utah with life-threatening illness to have something to look forward to each month. Brinley was a perfect example of that, having had a difficult day, but able to go to a Royal Ball and forget her troubles for a few hours. There will be a dinner, auction, entertainment, and plenty of pictures of the kids who are being helped by this organization. The date is coming up on May 22. If you are able to go, please do. To reserve your seat go to http://www.hopekids.org.

That was the up of the week. After that things have gotten very hard. I just don't understand it. Brinley was fine for quite a few days, no pain complaints or weepy days, then BAM, it is back. I don't even know what "it" is. Her eyes get red rimmed and puffy, and we have weeping, wailing, and gnashing of teeth all day! She is so mean, then just cries and cries when she gets in trouble. She wants to be carried everywhere. I have come to know her symptoms of pain without having to ask her about it. She has only really said on her own that she hurts a handful of times, and I only ask her once in a while. I just know that when she is acting like that she is in pain. The problem with being on chemo for a year and a half is you grow accustomed to pain, or not feeling great. So it is very difficult to measure her level of pain. I just don't understand why this is still going on when she hasn't received the IV chemo or steroids for 3 weeks. It disappeared, then mysteriously reappears. I am absolutely, positively baffled and the frustration is through the roof. What can I do? Every time I look at her, and see her frustration, anger, sadness, I have this dull ache in my heart. Such a helpless ache, like if I could just fix this my heart would stop aching and we would all feel good again. But I have to look at her eyes, and her tears, and shrug my shoulders. I have no clue what is happening in her body. NO clue. Usually I can piece things together. My best guess is the same as our oncologists, the chemo. Oh, the chemo. My best friend and my worst enemy. I hate it. I hate looking at her and knowing her suffering is from the poison we have been putting into her body for almost 2 years. And I love it because if we didn't have it, we wouldn't have HER.

I find myself being weepy about everything. I am not a crier, really I'm not. But I am finding tears rolling down my cheeks more and more often these last few weeks. I can't sit in church without tears spilling out. I have a constant lump in my throat and I know exactly why. I can't take care of this one. We mom's, we have magic in our kisses that makes owies disappear, but my magic isn't working. I can't rock all day, I have other kids to take care of. I take care of one, and I neglect the other. We go in on Thursday for her chemo and clinic visit.

Please let this go away soon! Here's to a new week, let's put this one behind us, in the history books you go. Only when you've had a crappity-crap (except for the princess ball!) week can you look forward to a Monday....



4 comments:

Nat Lud said...

It is so hard to feel like we have to choose between our children when one of them is sick or has special needs. But I think Heavenly FAther puts these kids in the same families because they are extra kind and loving and understanding. You are an amazing mom. I understand (to a certain degree) the pain and frustration of not being able to 'fix it.' Hoping you have a great week, my friend! (That ball was amazing! Such a great thing for such amazing kiddoes!)

Susi said...

Oh Kristin.....I hope this is a GREAT week for you!!! You are an amazing mom!!!! I wish I could be closer and come over and do something to help you out! I will click on the link for hopekids right now cuz I guess that's all I can do from here. Your in our thoughts and prayers. :)

Anonymous said...

What an incredible sight to see the princesses delight the little princesses♥All of the brown-eyed beauties in your family deserve that treatment!...many prayers for a good week..wed for awhile??I will call you when I get home (wed.)xoxoxoxoxoxox hang in there my beautiful and amazing niece xoxoxo

Syd said...

If I was still a little girl, I would love to be there... even now it seems pretty fun... the princesses look pretty realistic! Sorry Brinley didn't feel well:(