I guess you could say I am a homebody. I've never loved vacationing too long with kids because they don't sleep as well, we are out of the "norm" and it is exhausting. Ironic because that is what we are doing and have been doing since March. I love my routine, I love STG and I love being around people that I love and feel comfortable with. This is all pushing me past my limit and challenging me in so many ways. I am learning to make the best of our situation and "be happy" with what I have been given. People keep saying that home is where you make it. Oh I am trying. To say that I am happy all of the time would be a lie. I wish I could say that I am doing everything I can and am super happy but I don't and am not. There are times that I feel sorry for myself, there are times that I cry watching Taleah suffer, my anxiety is through the roof (I prob need meds), Taleah struggling with pills and seeing her throw up over and over, being without Scott and the kids crying because they miss their dad and the stress of it all... it gets the best of me sometimes. Luckily, we have the best support system ever! They make it possible, they lift us up and pick me up over and over again. I guess I just want to document the realness of this all. It totally sucks and is super hard, but we are learning and growing. Taleah is seriously a rockstar and pushing through and getting stronger, Makes me proud.
Being with all of my kiddos makes me happy and keeps me going. It is totally exhausting and kicking my trash, but is worth it to be under the same roof. I had a day and a half by myself with no help and I was up for the challenge, It felt good that I did it and survived (it sounds so dumb that I was able to care for my 4 children by myself...slightly pathetic but an accomplishment).
We aren't able to do a lot, but we can spend time on iPads, play games, play on the grass, have dance parties and craft.
We have had weekly clinic appointments and labs are still looking good. Very grateful for that and glad that it appears that her bone marrow is working and growing.
Unfortunately, Taleah caught the cold that has been going through our family. She started with a runny nose and a dry cough. We did a nose swab for a viral panel at clinic and tested positive for Rhinovirus (common cold) but they said to keep a close eye on her. She had a temp that had been hovering around 99-99.5 for 2 days. I had a feeling that a fever was coming. She ended up slightly fevering so I had to call and give the information, and that resulted in an automatic admit for at least 2 days.
Just when we were getting cozy at home and adjusting to a new routine... bam! Freakin cancer. It does that. It ruins all plans, catches you off gaurd and kicks ya in the gut. Poor girl. She was loving her life outside of the hospital and back we go. However, we were bummed at first but then we walked in and it felt like home. Weird right?? I was a little confused that I felt that way, but I did and thought that we better embrace it. Taleah is a great example of that. I seriously keep thinking that I am not cut out for this and then I look at her it reminds me that we can do this. I know that this is not my journey and I am not suffering half as much as she is, but it really does have an impact on all of us. She is doing the hard parts, she is enduring all of the pain, and she is rocking it. I mean she struggles with the pills and we battle it for about 20-45 min every day (twice a day) and she has moments where she feels like crap but she is making the best of it. I am a proud mommy and learning from her every day.
We are really hoping that the fever is a result of the cold and that we can get out of here at 48 hours. We are where we need to be to keep her safe... just in case. It feels alright to be at our second home away from home.
We can do hard things (my attempt at a pump me up, positive saying, positive thinking... I think it is working)!