Yet another week has passed and Christmas is just a week away. WOW.
I'm depressed. I'm in a slump. It's just making it thru each day. Every day is spent caring for the kids, and then its to bed. I'm lucky to make a full dinner, let alone read, or knit, or watch TV. I don't talk to friends of family hardly. I talk to doctors and nurses and medical supply companies and pharmacies. My life doesn't revolve around normal stuff.
I can't go to the gym during the day because we only have 1 car, and Bob needs it for work . We can't go to the gym in the evening because Eli isn't allowed to go to kid zone because of the sickness risks. It's to cold to go on walks outside like we were before. Treadmills are expensive.
We don't have cable because it's to expensive, so TV is watched on the laptop or it's all movies. The little 2 broke the Wii. Not many games can be played with 2 people. Books are expensive, and getting to the library requires a vehicle, and going at night requires a nurse since Eli can't go out in public.
Date night keeps getting cancelled because it's to expensive, or Eli's sick, or whatever reason.
I know I sound so bitchy. But I want 1 normal day. I don't want a day of worrying about Eli's temp or heartrate, I don't want to have to answer 1 phone call pertaining medical information, I don't want all the mail to be from doctors and insurance companies, I don't want to worry every morning that something could happen and my child could be hospitalized or worse by the end of the day. Things with Eli change so quickly. It scares me sometimes. There are times I look at him playing on the floor and my mind races thru the past year and everything that could be to come. It's so hard to quiet it all sometimes. Sometimes I'm so scared I just want to scream and cry. Sometimes I am just numb to it all.
I look thru my pictures and it's all the 4 kids out in public doing family activities, and then there is Eli's pics at home on his rug. I want family pictures. I want my family to be together. I want to just talk to my son. I don't want every minute of every day to be a therapy moment, or learning to sign and communicate, or timing meds and feeds, and flushes, and all that. I just want to be.
I think that really sums it up. I want to be. I want 1 day to be more than simply trying to exist until night. I want peace. I NEED these things. It's so far past a want, it's past a need...never knew in the past that it was even possible to go past a need.
I know that there are others out there thinking so many of these same thoughts. I get emails from you. I read them and my heart breaks for you in the same way you describe yours breaking for us. We are all eternally linked, our life situations so unique. We are strong because we have no choice, but inside we are a mess.
My wish for christmas is peace. and not in the corny peace to the whole world crap. peace inside myself and my household. peace that allows me to take an entire breathe. peace that allows my mind to clear and my eyes to completely close. peace that allows me to sleep soundly. peace. full everlasting peace.