We have had a hard couple of days. Brinley is pretty sick and cries a lot. If she's not crying she's screaming at someone, the steroids are the culprit of that, and her tummy hurts a lot. I feel so bad, I know this is so much easier than in the beginning, but these days really throw us all back to when she was first diagnosed and miserable. I hope it will end soon, she doesn't know how to handle how she is feeling and it has been very difficult to keep her happy. If I am being perfectly honest, say what you will, it has been very difficult to keep in our frustration. It's one thing to look from the outside in, but living this every day, even if it is for 7 days at a time, has been so trying and exhausting. I don't know how to handle the monster that these steroids bring. It is not Brinley. It is not her, I can see it in her eyes. I can see the frustration. When she loses it, she immediately melts down and just cries, like she regrets it and doesn't understand why she is acting this way. I can't explain it to her!! It's not your fault Brinley!! Even knowing that it is not her fault, us being the ones responsible for handling the peace in the home, we are so discouraged. We just can't find the peace. It is just hanging on during the storm and waiting for it to end and for peace to be restored. And enjoying the few moments of joy that come in the meantime. Peace is something that I yearn for when I don't have it. This has been a particularly hard chemo week. I think that they will adjust her 6MP, because she is still quite nauseous. She may just be sensitive to it.

Some highlights: we went to the park twice and she had a ball, she was so happy there. It made me so happy to see her happy and enjoying life for a moment. We went to my Grandma's house today and the kids had so much fun. They roasted hot dogs and marshmallows and enjoyed time with their cousins. Brinley was not feeling great, but she was better than she has been at home, so it was good to get out. We decided a couple weeks ago we needed a swingset, so we bought the cheapest one we could find, and it has been the best money we have ever spent! Brinley is so happy, she can be out there for hours if someone will push her! So we have been spending a lot of time pushing her the last few days, and she just laughs and says how fun it is. So there you have the postive side, whew, sometimes it's tough to find the good stuff, but I did it. That's a lie. I could find a slew of good stuff to write about. Life is good!

I'm a little slow with getting pictures up, some of these are a little old. Better late than never!

Taylor performed in a school play a couple weeks ago, here she is with some good friends.

Mylee's blessing day. Grandma Torres made the dress, she looked so sweet!

What a support system, eh? My lovely family!

A kiss for great-grandpa.

Aunt Huenu got some good smiles out of Mylee!

Ahhhhh, one of the good moments we have had lately, a last minute decision to eat dinner outside.

This is to remind me that there are times the really do get along....so sweet.

A smile for Daddy too!

Okay, I had the BEST MOTHER'S DAY EVER! My family was so sweet, I got crab legs for dinner with a fancy table, courtesy of Taylor, and it was a wonderful day. The best mother's day yet.

Yes, I'm putting in a sick picture, this was today, how can you resist that sad little face asking to go back out to swing....of course we granted that request!

And here she is moments later, happily swinging away....let me just say we are going to spend a pretty penny this year on sunscreen with her sensitivity to the sun. She only seems to be happy when she is outdoors!


Anonymous said...

Thanks for the update. I check in everyday to see how Brinley is doing. I know the ugly effects taking steroids causes. Hoping that this phase is over soon. You have an absolutely beautiful family.

Phil801 said...

Kristen we KNOW how you feel! It can be SOOO frustrating when the steroids take over! Both for you and the kids. It gets a little better but it's still the worst part of the month. We just try to make sure the other kids know what's going on and let them know it's the steroids, not their sister, that are being so mean.

Good call on the swingset! Serenity loves to swing and will wear you out with continuous "Push Me" which she would be happy to do all day long!

Looks like this post is a couple days old - hopefully the roid rage has subsided a bit and there's some peace in your home!

Sole said...

It's difficult to hear when times are rough for you guys, but it brings so much joy to see you guys enjoying life and eachother regardless of the tough moments. Everyone looks so good, and I can't believe how big everyone's getting!! I was just there, wasn't I?! and still everyone looks bigger! Love you guys, give my girls hugs and kisses from aunt Sole.

Dennis said...

those are the best pictures ever! Oh man! Dani and I were wanted to do a picnic outside with the girls just like your picture here! we were thinking about that the other day! Well I'm sure the girls won't mind doing it again haha. Love you guys