First of all, the RMH here blows New Yorks out of the water. It is straight out of the movie “Benjamin Button.” Old, Victorian, and beautiful. The people who work here are so friendly, helpful and nice. Our room is not hospital sterile at all. It is very cozy and has two of the most comfortable queen sized beds. Holla for that!! No more sharing a tiny twin with Ro. I know we are going to get some good sleep tonight. Ronan has been in a really good mood. He took a bath and played with his Star Wars guys. I unpacked everything and thought to myself how easy it is to make anywhere we stay, a home, as long as we have a few essentials and each other. My friend, Stacy, seriously packed all of my stuff and Ronan’s as well. Wow. She should be a professional packer. She did a better job than I could have done. I told her I didn’t care what I took, and that less was better. I learned my lesson after the New York fiasco. Not making that mistake again. Woody went out and got the essentials. My coconut water, some regular water, Gatorade, and his contact lens stuff. I unpacked all of his things and set up all of his cords for his electronic devices. Felt good to do this for him tonight. He often gets lost in the shuffle and does so not deserve to be. It makes me happy when I can do the simplest things like unpack his bags. He always is so appreciative.
I sent my Mr. Sparkly Eyes a text tonight and just told him that I wasn’t scared yet because I know Ro can do this. His response was, “He will with your love.” I’ve thought this all along. I have such a bond and love for this child that I can get him through this hurdle and back to the other side. I just know it in my heart.
I was bombarded with so many emails today but I wanted to share my favorite one. It’s from my friend, Diane, Ed’s wife. They are the most amazing family. Her email brought me to tears. Thanks Di; you are such a wonderful woman.
Dear Maya – The Strongest Mom in the World!,
I think of you and Ronan every moment of the day. From your writing and seeing you and Ronan together it is obvious you share a love that is so strong that only the two of you will ever know forever in your hearts. As I read your posts I feel, and uniquely understand, your pain towards the path and people you are forced to encounter to preserve your special love – mother & son. Along with all of your family and friends I wish that I could ease that pain, but I also know that will be impossible until Ronan is safe.
I believe that Fate, Faith, and Love are amazing guides. Fate brings you to places that you never thought you could possible handle, and faith brings you back again from the edge. Through fate and the unbelievable journey of life – I believe, you encounter the most amazing people, and live through the most difficult of disappointments. I am so sorry that your MSK experience broke your spirit (however so briefly) and challenged Ronan’s path. I do believe that it is all a part of each step to make Ronan happy and well. What I have found from our own journey, is that Doctors are mere humans with many faults, and once in a while bigger brains. Science and the human body fails us everyday, but we are sometimes shaken more by the failure of people and their inability to understand and empathize. Dr. K – a scared coward – yes, but believe me…. not worth your energy, time and anger. When you read back to your posts about your experience in NYC I trust and pray that someday it will be a memory forever etched in your mind as an adventure. I can only hope you will forget about the doctors, and remember the sanctuary of the RMH, food, Dylan’s candy, FAO, basketball, friends and the comfort you felt in the city. It is those memories that make NYC a place of peace for Ed & I. Jack’s treatment and science failed us at MSK, but I left there knowing I would, and could do anything to fight for him. You have done that!!!! You are moving onto CHOP, maybe DC, VT, and always home to PCH and your family… but you have proven to yourself and Ronan that you have the ability too endure anything for love!!!
I always felt as if Jack was a gift given just to me. His amazing life set my path and gave me forever strength. He showed me what love was really all about. He made me a better mother to Aidan & TJ, a fearless cancer patient, a devoted wife, a more understanding friend, a grateful daughter, a thankful sibling and I hope in some way a better person. I know in my heart, you both will win! You have already won by finding the strength to fight for each other. You will continue to win as each path, hospital, doctor, nurse, treatment, setback, victory, adventure, gift, and smile, will lead you to an answer, life, happiness and peace. My angel is watching over your angel on earth!!!!
All my love and respect,
I’m super tired tonight and we are going to CHOP at 11 so it’s time to get some rest. Despite all of this travel and being away from home, Ronan is in a great mood. Tonight he said to me, “Mom, you’re so cute. I love you.” I always know when he says this to me it’s because he is happy. At this point, that is the most important thing to me. Him being happy will get us through this. I am going to work my ass off to keep him this way through this next part of his journey. Happy and pain free are my 2 biggest goals right now. I cannot look any further ahead than that.
G’nite all of you sweet people. Thank you for all of your supportive and kind words. You are all the best family/friends/fans we could have ever asked for. I wouldn’t be in such a good place right now if it weren’t for all of you. Please never forget that. As much as you all wish you could help more, you are helping me in ways that you will never understand. You make this road easier to travel. That is one of the hugest gifts I could ever ask for. Thank you for loving us so much.