Post written by my mom. :)
Brinley had a good day. This morning was a little rough. Probably more for me than the kids. Just trying to adjust to taking care of everyone. All I've had is Brinley to take care of. Trying to make sure I did all of her meds right. Kind of scary. But I'm sure I will get it down in no time. After I got the boys off to school it took like 45 mins to get her meds down. With a lot of tears from both of us. It's so hard to watch her cry and have to take these meds that taste nasty (by the way I tasted them she's not exaggerating. They are nasty!!) and then tells me " they don't make me feel better, they make me feel sick" and she's right they will make her better in time yes but they don't make her feel better now. It is heartbreaking. But I have to say that today was by far the most heartbreaking moment of all. As we were working on her meds I asked her if she wanted to take a break for a minute. She said yes. So I held her and she put her head on my shoulder and just sobbed. The kind when you feel like you just can't do this. We both sat there and cried for a little while and then like the trooper she is she took the rest of her meds. We then watched a movie together. She is so brave and so strong. She listens and try's to understand and she does whatever she needs to. In the hospital before her port and they would have to poke her several times a day for labs. She might cry and she might yell. But she didn't move. They never had to hold her down. She didn't like it but she did exactly what they asked. The doctors called her their hero.
Today overall has been a good day. She took NO pain meds. Did not complain of any pain. Had no major mood swings. Was generally happy all day. Took a good nap. She painted moms nails, Sams nails and TJs nails. Yup TJ's. He was such a good sport. Told you she's spoiled. She can get you to do pretty much anything she wants. She went to her favorite 2nd home "Melanie's moms house". Melanie is the only one we trusted to watch our kids besides their siblings for years and they live across the street. All three of our little ones love to play over there. And have their whole life. It's been awesome for them and me ;). Brinley was so excited to go and play for a little bit. But mom had a very hard time letting her go. But I know she is in very good hands there. But today she didn't play. She sat on Melanie's moms (Maureen by the way but that's not her name at our house :)) lap and snuggled. She is doing great. It's hard to believe at times she's really sick.
It's been hard on her too cause her daddy was out of town for a couple of days for a gun show and then he came home sick with a cold. So she hasn't been able to get to close to him but as soon as he's better there will be pictures with him in them. Just in case you were wondering where he was.
Developing friendships outside of the family will be a big strength to her. As she gets older, there are some things she will say to a friend that she won't say to family because she is protective of you and your feelings. Soana's last relapse she actually talked with her friend about symptoms before the diagnosis was ever made, but she never mentioned any symptoms to us because she didn't want to worry us.
ReplyDeleteAll the meds are so overwhelming getting into the routine at first, but it sounds like you are a real hero, Melinda. One day at a time. One foot in front of the other. Please call me when you need a word of advice or a helping hand. I'll be right over. <3
All the posts have brought tears to my eyes, but this one was the worst. Thank you for sharing your intimate moments with us. So many love you guys. You'll get through this. Tell Brin I said she's awesome and I miss her.
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