First of all...
Thank you mom and dad for staying with Ava and giving me a chance to spend some time at home. I really appreciate it. I love you guys.
I made it back up to KC tonight. Leaving Kaden, Nate, and home was so hard. My emotions right now are indescribable. I feel like I am just crying constantly or trying to hold back the tears. I want to be here for Ava but I also really want to be there for Kaden, too. I really want things to get better for all of us. I want to be a family. I want to go out together as a family. I want to sit at home as a family. I want to us to be able to live our lives without the worry of what tomorrow might bring. Is that too many wants???
It really got to me tonight when I came in and the baby that Ava shared a room with was gone. She had the same heart condition as Ava, but was a little younger. I am not really sure what exactly happened, but I am pretty sure that she didn't make it. I feel so sad for her family. Her mom just left two days ago to go home for awhile (out of state) and then this happened. It really gets to me, especially right now with Ava and how she is . I wish I could just make everything better and have no worries. It just made me realize, again, that things can happen. I kind of get into these modes where I think to myself that things like this wouldn't happen to my family...but sitting in this room with just Ava makes me remember that it can. It makes me sick to my stomach just thinking about it. I know the saying..."live like there is no tomorrow," but it is hard to "live" in a hospital room. I want to know that my baby is going home with us, I want to know that both of my babies are going to grow old and live a happy, fullfilled life, and I just don't know that. I guess nobody knows that...but it makes me sad to know that I have to face the reality of it all, every day.
I have been so worried about how Kaden is handling everything right now. It really gets to me knowing that he can not tell me how he feels. When I said bye to him tonight and explained to him that I am going back to the hospital and RMH he signed "yes" that I need to be with sissy but he wouldn't look at me when I was talking to him about it, he just kind of stared away. It makes me sad to know that I am missing things that are going on in his life and that I am physically not there for him all of the time. But if I wasn't here I would be sad knowing that Ava would be here by herself and that she wouldn't have us to love on her and speak up for her. It is one of the most aching feelings, being torn between my two babies. I can't explain it. I wish there was an easy answer for everything.
I also feel like we will be here through her next surgery. We aren't anywhere close to being home, and her next surgery is 3-5 months away. That may seem like a long time to others...but we have been here for 3 months and like I said, are no where close to being home. I just feel like she is not making any progress. We are just stuck.
I know I have talked to some people about this, but staying in the hospital makes it seem like your life is on hold, all the while others are still living theirs. I kind of experienced that when I went home this weekend. I was able to get out and "live life" with Kaden and Nate, although Ava was stuck in the hospital still fighting. She was constantly on my mind, but getting out and doing things with my family kind of gave me back a piece of my heart...I know that probably sounds stupid but I don't know how else to explain it.
I know that this is probably all jumbled up and doesn't make all that much sense...but that is how my brain is "working" right now. It actually has become sort of a joke for Nate. He thinks I am going crazy...um, hello, what do you expect? My brain is turning in to mush. So I am sorry if I didn't make much sense...but I am telling you the truth when I say that I do not make much sense to myself either. Please continue to pray for Ava's recovery and family's strength. Thank you so much.
Do Not Worry
9 years ago