Time to catch up on the last few days. It has been so good to have all of my kids here at the same time! It's the first thing in a month that has been normal for us. We've spent some good, quality time just being a family again. We've spent time at Temple Square, Gateway, playing Monopoly (Abby always wins), playing the golf card game at Jon's house, going to PCMC, eating dinner together, and just hanging out....and we still get 3 more days, then everything changes. On Saturday, Brock is headed to St. George so he can go to the SUU football camp with his team next week. If any of you know someone driving to St. George on Saturday, please let me know, otherwise I'll have to send him on the shuttle. Then next Friday, Brock and Britt get to go to Hawaii for 10 days with all the rest of my family. This was the trip that I've been looking forward to since Christmas.....but that's okay..... Abby, my dad, and I will stay here this time. It's really depressing, I love everything about Hawaii and I have been so excited, but I'll just have to deal with it. So, I'll have a long time without my kids, it will be hard, Abby and I will miss them so much. Sometimes, this whole thing really stinks.
Abby had her clinic on Monday. Everything still looks about the same. Her INR was even stable still, that was good news because we don't have to go back to PCMC until next Monday-a whole week off!! The Life skills person spent some time with Abby talking to her about imagery and relaxation techniques. I also had some questions for Dr. Molena. I was curious why they don't put artificial hearts in kids, she said they are still working on developing one small enough to work for kids and that right now the mortality rate is still too high. I asked if we knew why Abby's heart stopped when it did, why did it stop then, when we had no signs for almost 12 years? There was no answer for this, we will never know. My last question was one that I was scared to ask, but had to know. I asked how we knew that we wouldn't be sitting there in that office one year from now with Abby just feeling the same and still waiting for a heart. They told me that could happen, but it isn't likely. Most hearts, after presenting themselves with problems like Abby's, only last about 1 year or maybe a little more. All of this is just so scary, I hate really thinking about it. It still just makes me sick when I think what lies ahead for us....the waiting for the transplant, the actualy surgery, and post-transplant. This has changed our lives forever. It can be really depressing to think about, so sometimes I just try not to.
We received a call from the Make-a-wish foundation. This was exciting, but also made me realize how serious Abby's situation is. They are coming to visit with us sometime in the next couple of weeks to talk about Abby's wish options. I think Abby wants to travel somewhere, but then we'll have to wait until things are stable after the transplant. She talked about taking a cruise to Australia and New Zealand....I was okay with this, I think it sounds awesome! I'm trying not to influence her decision, I want it to be her wish, but I have lots of ideas of my own. Hopefully she'll think of something great, I think we deserve something incredible after going through all of this!!
This is hard, it's hard every single day. It's really easy for me to feel sorry for myself, but I just don't allow myself to, it doesn't do any good for me or Abby. I replay the day it happened at least once every single day, I don't want to, but I do. I miss spending my summer boating on the lake, hanging out at the pool, biking, spending time with my friends, going out to lunch, and just being independent. I feel a little trapped right now, I just don't have very much space or time for myself. I am definitely going to learn so much patience through all of this!!! I came across this quote this week, I think it's perfect for me right now:
"Patience means active waiting and enduring. It means staying with something and doing all that we can—working, hoping, and exercising faith; bearing hardship with fortitude, even when the desires of our hearts are delayed. Patience is not simply enduring; it is enduring well!" (~Elder Dieter F. Uchtdorf)
I hope I can continue to exercise faith and bear this burden with mental and emotional strength. I know I "have" to endure this trial, but can I endure it well?? I want to, I really want to....I just have to stay strong. Thanks everyone for your continued prayers. Please keep praying for us to have the strength to endure this, and to endure it well.