Today has taught me how intensely stressful this whole situation is. It was a pretty simple day, yet I am still so overwhelmed with not only being a mother of two, but caring for a sick infant and a three year old while trying to maintain a relationship that was rocky to begin with and also attempting to sort out the various things in life such as school, daycare, WIC, etc. I feel like I am going insane. I feel like I could just give up. (Obviously, I would NEVER, but I cannot help feeling so fried.)
Things got pretty heated between Tim and I, and I know things have been stressful, but I am not sure if there is another reason to it as well. He seems really annoyed and snippy, like it doesn't take much to set him off, and I am not sure what to do.
I can't help but feel alone, abandoned, and helpless. I don't even think things were this hard for me emotionally in the hospital because I didn't care for Charlie solely as I am now. I had monitors to look at to know he was okay, nurses constantly at my call if I felt something wasn't right, and I even had some support. Now, I am completely alone and caring for both children while trying to maintain my life. You see, simply put, my outside life was put on hold while we were in the hospital. I had ONE main focus, and it was difficult to wrap my head around that, but right when I started getting used to it, it all changed again, and we were homeward bound. Now, it's more stress compounded on me, and I feel like I am cracking under the pressure. I need some support, and I feel like I am not getting it from the appropriate people. In fact, it feels like they are turning away from me when I need them most. It's pretty upsetting.
But enough about my feelings. Let me get to my famous little boy.
He woke up this morning around 4am, STARVING. He wolfed back an entire 6oz bottle, and he went to bed. I tried to feed him again when I woke him for his meds at 7am, but he was not interested. I tried again at 9:30am, and again, he wasn't interested. It worries me and frustrates me immensely when he won't eat. I get scared because that is how I knew something was wrong before. He did end up eating three more 6oz bottles since then, meeting his goal for the day at the minimum. (24-30ozs a day. He did 25.)
My mother came to visit, and she was making him laugh like crazy. It was an incredible feeling to hear him laugh. It almost makes me forget the stress and forget that he is sick.
The case manager for his home health aide came by today so we could fill out the paperwork. She was smitten with Charles. She was really comforting, and I cannot explain how relieving it is to know that I will have help with a visiting nurse three times a week, despite the fact that it will only be for a few weeks. I may have to use his donation money to help pay for a visiting nurse if Masshealth refuses to continue the visits after three weeks.
We met up with a reporter and photographer from the Standard Times of New Bedford at Tim's mother's house, and we got to tell Charlie's story. It's strange how when we were telling the story, it felt like we were discussing a movie we had just saw. Whether it is because of the lack of sleep, the immense stress, or just shock, I still cannot register everything that has happened, and it's almost been a month. I am impatiently waiting for this to be over. I just want my healthy little boy. I don't want to constantly fear I am going to lose him. I want my "normal" family back. I feel like I am losing it, and I look at Charlie and can't believe - he is the one who is going through all of this, and he manages to smile every second of the day. My son is my hero. <3
I am going to head to bed soon so I will update tomorrow. Good night, everyone. Until tomorrow!
Dear Brooke, a quick first comment because I want to keep reading. My son Matthew is 24 and had open-heart surgery at CHB when he was a baby. (three times). When I tell the story, even now, it feels like I'm telling about a movie, just like you were saying above. Also, if I lived up there, I'd come over and help you in whatever way you want. Maybe you could even take a nap, cause it sounds like you really need one after all this trauma. Prayers and hugs to you, Addison, and Charlie!
ReplyDeleteJudy Goldberg jmg1959@gmail.com