WARNING::: Not for the feint of heart and I am letting a year's worth of feelings out so there may be some parts that are difficult to read. And I may sound a bit manic, but keep in mind this is a year's worth of release. You've been warned! :-) It's hard to believe a year ago today one of my worst nightmares came true. Every time I think back on that day, I can still recall it vividly but as time goes by the pain lessens and seeing Lily still here with us, comforts me. Wow It seems like a LONG time has passed but then again it doesn't. Although there have been some very hard times we had to go through, some days better than others, we are comforted by the miracle we experienced this year. Admittedly there were days when I had to dig real deep because I felt like I couldn't take it anymore but God knew what I was going to go through and made sure I had my rock ("Magnus"), angels on earth ("family and friends") and distractions ("the kids", "The Ellen DeGeneres Show" and "Comedy Central"), in place, to make sure I kept on chugging even when I thought I had nothing left in me. If there was a true test of love, I think I was put through it this year. I still remember being in the hospital at 10pm after Lily's first surgery and the doctor and nurses saying Lily might not make it through the night and having to prepare myself to say 'goodbye' but begging God that if it be His will to experience a miracle and let her make it and He heard me! "You are my Sunshine" became the anthem and bond which Lily and I shared and she still seems to be calmed whenever I sing that song to her. It brings tears to my eyes but it helps to know that even when she was in the induced coma she heard me. I think in order to witness that miracle that night I had to 'let go and trust God'. A real battle because He gave us free will but anytime I find myself faltering I have taught myself to close my eyes and just hand it over to God because in the end He is the only one that sees the big picture. Through the tough days Magnus is always pointing out that Lily is still here with us and to not to try to look so far ahead in the future. Sometimes I think he is more spiritual than I am ;-) This experience has taught me SO much and there are still times I feel really weak but I am EVER SO GRATEFUL for the people that God has put in my life to help me and my family get through it. It brings tears to my eyes to think back on all the generosity, support and love that has been showered on us this past year. We really wouldn't have been able to get through it! Who would have thought that our life could change SO drastically! I've rearranged my priorities and trivial things just aren't that big a deal anymore, especially things I can't control or change. I'm still battling my Type A personality where I want everything planned out but I think I have toned it down alot and am probably a Type A and a half personality now ;-) I wish I could say that this experience has made me more organized but some days are more overwhelming than others and I just try to stay afloat with all the appointments, bills and homework. Yes homework, that we get from the therapists because Lily's rehab doesn't stop when she sees the therapists it is an ongoing thing and in order for her to not fall far behind I try to make sure she is getting some kind of therapy everyday. It's amazing how easy it is to forget a limb and how your brain will compensate and make things routine even if it is not normal. So we have to constantly remind Lily she has a left arm or she may grow up not realizing she has one. It's amazing to see the difference in Lily and Sammy, where Sammy does things so naturally but with Lily we need to teach her. Lily is extremely lucky to have Sammy to watch and see what she should be doing next. Whenever I see Lily smile, which is alot, especially all the things she has had to endure in one year, it makes all the sadness and pain more bearable. In the beginning of all this, I think one of the hardest things I battled with is worrying whether she will be with us the next day, (which made the nights REALLY hard) but I think that worry will always be in the back of my head and I just have to keep telling myself that no one knows how long they have here on this earth. We've basically had to put our lives on hold and try and make life as normal as we could for Sammy and Nika. So I am always thankful for the times we do get to experience some normalcy but I can't help but feel a little jealous of those family's that can just pack up the car and head to the beach or even just go out to eat. Or not have to worry about a chronically ill child, but then again there is the other side of the fence where we are lucky we can worry about a chronically ill child and not be missing one. Since summer season is starting we are starting to be able to go out more as a family, but of course it is always in the back of my mind...I hope Lily doesn't catch anything. So when Lily gets the green light to stop chemo, I think that will be a joyous day but then again I know the chemo has helped her to be cancer-free -- double-edged sword! If there was ever a concrete example of the 'power of prayer', I think Lily exemplifies it. I really do not think we could have experienced this miracle of her survival if she didn't have so many people praying for her. My co-worker even included her in her religious pilgrimage to Europe! We are SO truly blessed!!! On a nerdy note, my vocabulary has increased ten-fold! I would never have known what glioblastoma, PRN, NPO, afebrile, systolic, malignant, cc, EEG, etc would have meant if it weren't for the many doctor visits or stays at the hospital. Lily has come a LONG way from being diagnosed with Stage 4 brain cancer to being able to crawl with an asymmetry. Her therapists have said she never stops amazing them and she amazes me as well. Boy will she have a hell of a story to tell when she is older! It's amazing the growth and development she has gone through and she continues to defy any expectations or connotations that go along with a child who has a terminal illness. We are hoping and praying for many more years of being cancer-free and for her to grow and continue to show us all the miracles life has to offer.