First night home... great. Sleeping in my own bed...great.
I had to give her antibiotics at 2am, so we went into the kitchen so she could eat while it infused over 30 minutes. Slade woke up at 4am so I rushed in to feed him so he didn't wake Taleah. I woke up for work around 7am and both kids were awake at 8am when I left. My mom was there to take care of them while Scott got ready for work. I worked from 8-12 and it was good to be there. A good break but I stressed about the kids the whole time. Stress is a new part of my life...well it always has been but I am stressing about things that really matter now. We had to be home right at 12 because she had to have the dressing changed on her PICC line. She cried the whole time she was doing it, but I think from the anxiety of it all.
She and I had some alone time after and it was great. We ate lunch, took pictures and played.
(her cheeks are the cutest)
She was ready for Slade to come home. She loves having him around and misses him when he is gone... until he gets home and she realizes that I have to give them both my time (which has been a challenge).
Chloe was stopping by to give her a surprise (and a sandwich). We were having our first playdate which consisted of outside playing, distance between them, no touching and no sharing toys. Does that count as a playdate? It did for Taleah and she LOVED it. I think it made her feel normal for a minute. Other than that leg pain, she got so excited when she heard them and ran to the door her legs just gave out and she fell. I almost cried. I think that is supposed to get better after the steroids...I hope so. She struggles to walk on her own and wants to be carried. So sad.
Despite all of the crap, crap and more crap... she has been pretty happy. What a strong girl. She amazes me. I am so lucky to be her mama.
I am struggling a little bit to find some normalcy in my life. My life and thoughts are consumed with her and this battle with Leukemia. It's almost like I get social anxiety sometimes. I am a social person so it is kind of wierd. Leaving Slade has been hard. I don't want to feel like I am choosing. I want to be there for both of them... and Scott. I want to be able to do it all but I know I can't. I have learned to accept help and the help has been more than great. I feel like being home alone with both kids is challenging. I can't give them both the undivided attention that they want. I wish so badly I could. I am not trying to sound like a negative person but this is hard. I have got to find a way to take care of myself too. I can't afford to get sick or run down. I have to hold it together and be healthy/strong. Wish there was a prescription for that!!
Hoping to stay home until our next visit at PCMC. We will get chemo in STG on Monday and then head up the next Monday for the big day. My sister is putting together a benefit concert for Taleah. I don't know a lot of what's going to be happening, but I know it is going to special. I am PRAYING that we will make it back. It is the same day of her "big day". It will totally depend on the OR and how many emergencies they have in the morning that will "bump us" to a later time. If only we could fly home, but I am thinking that an airplane would be the WORST place to have her with all of the people and germs. Scott should have been a pilot with his own plane... that would come in handy right about now! :)
We are learning a lot already. I do see small blessings and lessons already. Scott's new job, life lessons, selling our car, finding a new car that will be great for our fam/needs, family coming together, the love of God being felt, service, service and more service. We will get through this... I know we will.