I had an amazing visit with two inspiring women today. Cindy Hansen and Tiffany Huish are DIPG mom's that have both lost precious little ones to this horrendous disease. Even though it was the first time I've ever met these ladies I felt like I have known them my entire life. We had a very blunt, eye opening, 3 hour conversation. It was exhilarating to hear that others have experienced every single emotion I am currently having. I realized, that for our experience, I am completely normal. It is normal to feel like I'm going to lose it every second if every day. It is normal to cry over anything and everything. It's normal to shove my face with food every second. And it's also normal to not even be hungry. It's normal that I need help and don't know what I need at the same time. I learned that its going to get harder but yet I'll make it. One day I'll be able to move on. But I also learned that until that day comes I need to drop my pride and ask for help. So those of you that live close to me be expecting a cry for help soon. I'm sick of my house looking like a hoarder's house and I'm sick of eating fast food every night because I don't have time to cook. So here it is...I need help! I can't do this by myself anymore. I can't find the time nor will I for a very long time.
Bree is doing very well today. I feel like I have my chatter box back. If it wasn't for the constant meds and that cute bald head I would think this had all been a terrible nightmare. She's definitely feeling better. However, her bilirubin levels are high so the doctors seemed a little concerned about that. We are currently watching it and doing labs on Thursday. We also are continuing to watch her blood counts and platelets. They are still really low which has caused us to postpone her next round of chemo. We are doing a CBC and ANC on Thursday as well to check those counts. Also on Thursday we are doing labs to check the rest of her pituitary and hypothalamus function. I really hope they don't find anything else wrong.
Anyways, I learned a lot today. I am feeling completely normal feelings and I can't do this alone. As much as I want to be that strong, independent person I can't. This is much bigger than just me.
Negotiating unchartered waters requires guidance. Glad you were able to visit with other survivor moms. It takes great strength to know when you are in over your head and ask for/accept help. Let others take on some of those troublesome cooking/cleaning chores. You have much more important things to do and it gives those who care for you something concrete to do besides just watching you go through this very difficult time. Check your messages...
ReplyDeleteWe are willing to help however we can please just say the word, you need meals, a maid to tidy up, we can do it all :)
ReplyDelete