It is with a heavy heart tonight that I tell you we are returning back to Phoenix. We came out here, full of hope; yet Woody and I both knew that it was going to be a tough road to travel. We met with Dr. Mosse about starting MIBG therapy to try to get Ronan’s disease under control; but with much sadness in her eyes she told us that this therapy would never cure Ronan or much less do anything for him. I knew this morning before we left the RMH for CHOP that there was little hope, as Ronan’s pain is getting much worse. I do not in the least regret coming out here. It was something that Woody and I, as parents had to do to make sure we could know in our hearts that we tried everything we could for our son. I believe it was a gift to have Dr. Mosse deliver this heartbreaking news to us, as I would not have wanted to hear it from anyone else. I cannot even express to you what an amazing woman she is and I am so thankful that she has had the chance to spend a little time with our son. I know she will work harder because of him and will one day, find a cure for this disease. After Dr. Mosse told us that the treatment would not work, Woody broke down and I went into complete shock. I could only focus on holding my husband, watching his tears, and just as he started crying, it started pouring rain outside. The rain only lasted about 5 minutes on this sunny Philly day. I know the reason for this rain.
The rest of today has been a blur. We have Ronan’s pain under control and are planning to head back to Phoenix on Friday. Woody and I have spent most of the day crying, talking, and whispering together. We have made promises to each other that we will keep. As Woody said, “Cancer will not take anything more from us than it already has.” It will not destroy our marriage, our family, our boys. We will take control over the things that we can. While Ronan has been awake today we have been very hush hush about everything, as he does not need to know that our hearts are broken. We have made phone calls to a few people, but that is about the extent of the phone calls today. All of this is just too much. Woody and I have both decided that we hate the saying, “Everything happens for a reason.” There is no reason for something like this.
We have some tough decisions to make yet I have no doubt that our little man will guide us though. We will do what is best for him and respect his body, his life, and his time. I have spent the entire night curled up next to him, singing to him, whispering sweet nothings in his ear, and kissing his little face. Ronan has filled my life with so much more love than I ever knew existed. The almost 4 years that I have had with him have been pure magic, bliss, and we have an unbelievable bond that will never be broken.The thought of being without him is eating at my soul, as he is the best thing that has ever been mine. I don’t know how I am going to go on without him but I have a feeling my twin 7 year olds will be great helpers. They deserve the best life possible after living through this nightmare and Woody and I are determined to give it to them.
I am not brave, strong, or fearless anymore. I am just a mom. A mom to the most beautiful boy that was put on this planet and whom I will think about every minute of everyday for the rest of my life. Being his mom, was the best thing that I have ever done and will ever do.
Tonight, I asked to speak with Dr. Mosse one more time. We went alone in a room and I told her, as a mom, I had to know in my heart that I had done absolutely everything possible for Ronan. She told me I had done that and more. I begged for clinical trials, asked about things I had heard about in Germany, Canada, homeopathic hospitals…. asked for anything. She told me if there were anything, she would have done it for us. I asked if we made mistakes on the choices we made as far as his treatment went. She said absolutely not, and that we couldn’t look back. His disease is everywhere and spreading so rapidly that the best thing we can do now is just love him like we’ve never loved him before. I cried to her, asked a few more questions, and thanked her for her compassion and grace.
There are not enough drugs in the world to knock me out or make me numb to this. Nor would I take them if there were. As of now, you know I am still hoping for a miracle and not giving up. I will never give up on Ronan but I will respect him and his life. He is going to lead me to where he needs to go, when it is his time. I, as his mother, could not ask for a braver soul to surround me at this time. I will not leave his side until he is ready for me to go.
Please continue to pray for Ronan and our family. Please don’t take anything in your life for granted. And please don’t send any mother fucking flowers. I told Fernanda tonight, if anybody sends me flowers, I will lose it. If you feel compelled to do anything, send a card, write on my blog, spread around Ronan’s story, ask for prayers, donate blood or platelets, or donate to his foundation. I will do something amazing with the money we are raising and I know it will come to me when the time is right.
Thank you to all of our friends and family who did not disappear during this time and who chose to surround us with the love that we so need. Thank you to all of you who love our baby even without knowing him. I am so thankful for all of our nurses and doctors who have stood by our side and who continue to do so. Please send us your strength to get though this. We are a strong family, but we are about to walk through HELL, even more so than the past 8 months. We have to come out the other side.
Love you all,
THE CHOSEN MOTHERS
By Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.
Did you ever wonder how mothers of children with life threatening illnesses are chosen?
Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.
As He observes, He instructs His angels to make notes in a giant ledger.
“Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard.”
Finally, He passes a name to an angel and says, “Give her a child with cancer.” The angel is curious. “Why this one God? She’s so happy.”
“Exactly” smiles God, “Could I give a child with cancer a mother who does not know laughter? That would be cruel.”
“But, does she have patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it.”
“But, Lord, I don’t think she believes in you.” No matter, I can fix that. This one is perfect. She has just enough selfishness.”
The angel gasps -“Selfishness? is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them.” She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as if she is here by my side.”