Diamonds Are Not a Girl’s Best Friend

Ronan. Does it sometimes feel like I want to rain on everybody’s happy parade? Because I don’t. I am happy there are happy people out there. I am happy that most people out there do not know what it feels like to lose a child….. well, I may be taking the happy word a little too far, because you know I don’t know what happy feels like anymore. So let’s tell it like it is…. happy is not the right word. I am glad. Glad that most people won’t know this pain. But I really hope from reading this story, they get how lucky they are and they choose to live life a little differently. Just by knowing how it really is the small things in life, that matter the most. The sweet whispers of a child, the helping of a stranger, the butterfly kisses of the world, a child’s hand, laughter, a solid marriage, strong friendships, true friendships, loving yourself, soul mates, being kind to others, sparky eyes, and helping when you are in a position to do so. These are the things that matter in life. Nothing else.

I have some bereaved mommy confessions to make. I have a lot of them, but in order to confess them all, I would need to write a book. And maybe a good attorney to keep me out of jail. Let’s just start with a couple tonight. The one that makes me feel like such a jerk. Let’s call this one, “Confessions of a bereaved mommy who now hates to wear jewelry.” This didn’t happen until after I lost you. Until I started wearing your ashes around my neck. Until one day, I looked down at my diamond ring and got really mad. It made no sense. I did everything right. I married the right man. We loved each other. We had formed a house full of respect, love, compassion, strength and honesty. But now our baby boy, was dead. But I had the pretty jewelry. The jewelry was there, but you were not. I didn’t want the jewelry. I only wanted you. I slowly started to put all of my pretties away. Christmas and my birthday came and went. Guess what was given to me? A new pretty ring and matching earrings. Tears were cried over the gifts that I did not want. Your daddy only wanted to make me smile. But I cried instead. Take it away. I don’t want it. It’s too pretty for me to wear. And I am so ugly. Can’t you see how ugly and sad I am?? I don’t deserve to wear this pretty jewelry. I have Ronan, around my neck… I don’t need anything else. None of this stuff really matters and because life is not fair, the jewelry gets to stay and Ronan gets to die? I want the jewelry to die, instead. Your daddy insisted I keep it all. I did. I tried. I’ve worn the pretty ring and earrings once and it didn’t make me happy; it just makes me sad to look at. I put it away with the rest of my things. It came up tonight, again. I begged your daddy to take it all back. “I won’t wear it!” I told that daddy of yours. “But you are so thoughtful. Thank you. It really is the thought that counts, Daddy Woo….. but the only thing I need to wear…..is Ronan.” I’ll mix it up a bit, Ro. I’ll wear some inexpensive skull bracelets around my arms, your bracelets, or some cheap Forever 21 jewelry that is bright, but diamonds, gems, stones….. I can’t do it. I used to think diamonds were a girls best friend. I thought that, until I had my best friend taken away from me. A diamond cannot replace you. A diamond cannot bring you back. A diamond cannot make me smile. A diamond only makes me sad. I fight with this a lot. Because I know anything and everything your daddy does, comes from such a good place. So why can’t I just suck it up, smile, and wear the pretty things? I mean, really…. it could be so easy to do. If I were a fake. But that’s just one thing I’m not. I cannot suck it up and fake it with the stupid jewelry. This makes me feel like a big, fat jerk but I cannot look away from the lesson I’ve learned from all of this. Pretty jewelry, and I don’t care how much you have….. will never truly make a person happy. When everything else is stripped away, when the most important thing you’ve ever had in your life, is taken away and all you are left with is pretty jewelry….it will not mend a broken heart. It really just DOES NOT matter. It is not what is really important in life. It won’t stop the tears, sadness, emptiness, or loneliness one feels. It won’t bring back my smile or you. It is only a reflection of broken promises, hopes and dreams. It’s a facade. It is overcompensation for what was supposed to be, but never will be again.

I tried today. So freaking hard to have the HAPPIEST ROENTINE’S DAY EVER! I had some productive things to take care of. I had a meeting. I put on my game face. I did a lot of nice things, for others. I brought cupcakes to your Sharon at PCH. I had coffee with your other lovie and gave him our card. The smile it brought to his face, made my entire day. But his smile did not come with false words like most peoples do. His smile came with watery eyes and words like, “I know you are in excruciating pain…..” I know he knows, which makes my pain worse. I don’t like that other people hurt because of this. I never wanted to hurt anyone, Ro. Especially the one’s we love the most. It makes me sad.

Our new friend, Margarita, dropped off dinner because I have seem to have lost my cooking skills/desire. (Total inside joke for my Saline Bean…. (“I seemed to have lost my keeeeysssss”) I sat at our table, in your spot and opened the cards from your Daddy, then Quinn, then Liam, and finally, you. Your card sang. I could hardly listen to it because the tears just started pouring. I smiled through my tears, kissed your daddy and brothers and told them thank you.

I drew a hot bath. Your brother, Quinn is still sick and Ronan…. confession number 2 of the night…. I cannot take care of him. It’s all I’ve been doing since Saturday and I am about to crack. I think I’ve become a bad mom. I would have never had these feelings before losing you. I feel like a big weight is on my chest. I feel like I can’t breathe. I feel like I don’t want to be a wife or a mom anymore. Do normal people feel this way? Or is it just me? Have I gone mad? I think so. I must be mad. Insane. And sad. So very sad.

I tried to make it a very special day, Ro….. but all I did was think about you and Ben. Ben with the Bald Head. Ben who likes to eat sushi and listen to The Beatles. Ben who has a very sad mommy for the worst reason possible. I’ll attach Ben’s caring bridge tonight because I need everyone to send them their extra thoughts, love, prayers and whatever else you might do. I’m only sending them you, Ro. Only you.

http://www.caringbridge.org/visit/benpurcell/journal

Please think about Ro and Ben all you people out there, reading this. Please don’t just make this your bedtime story while you sit reading it, dripping in your diamonds or ice cream. Please do something to help us change this… for your kids, your grandkids, your neighbors, your friends, for anyone you love. Please help us change this, because as of now…. our pain is not yours. But bubbles can burst at anytime. Never trust a bubble.

Ro baby. It’s Ambien coma out tonight. I have not taken anything in a week. I have been sleeping like a baby, in your bed, without Ambien. I’ve been sleeping in my dead babies bed. I can’t believe this is true, but it is. Today was too much. Tonight is too much. I need a break. I just need a break from all the screaming, crying, laughing, T.V., conversations, vivid dreams of everyone but you. Where are you? Why won’t you visit me, in my dreams? I miss you so much. I’m so sorry, Ronan. I hope you are safe. I love you, baby doll.

xoxo

Please help Rally around these kids!

My friend, Cindy, left this on my comment page tonight. I am so sad, outraged, and sick about this. How can this happen in this day and age??

I know you are all wanting to help and you have been so supportive in every way. If you can please take the time, to read below and help out with this it would be much appreciated. I know what I will be doing tomorrow. These kids deserve better. These parents deserve better. Things have to start to change.

My husband said it best tonight…. “That leukemia drug shortage is bullshit. Bet they never run out of Botox or Viagra.” Tru dat, Wooddawg. Tru dat.

Thanks lovies,

xoxo

Maya,
The Rally Foundation sent out a great email about this today giving the links to the proper people to contact including the manufacturers and what exactly to ask for. I hope you will find this helpful and pass it on so that the word gets out and we bombard them to step up production. These kids suffer enough from lack of funding and research and to not have a medication that does work is just plain wrong. Thanks!
Cindy
IMMEDIATE ACTION NEEDED

Dear Rally Families and Rally Supporters,

The past few days Rally has been receiving calls and emails from concerned parents and supporters asking if it is true that there is a critical shortage of preservative-free methotrexate, a vital drug for children with the most common form of childhood cancer, Acute Lymphoblastic Leukemia (ALL). Unfortunately, this is true. As you know, Rally’s mission is to find better treatments and cures for childhood cancer. Unless production of preservative-free methotrexate increases, hospitals will run out of the medication completely in the days and weeks ahead. Some institutions have already begun rationing preservative-free methotrexate.

Chief of Oncology at Children’s Hospital of Philadelphia and member of Rally’s Medical Board of Advisors, Dr. John Maris, M.D, was recently featured on CBS news discussing the issue. This news story will give you a good overview of the problem.

The childhood cancer community has come together as a whole and is asking all supporters to help. PLEASE ACT NOW! This is how you can help:

Contact the US manufacturers of Methotrexate and ask them to:

1. Prioritize the production of the preservative-free form of methotrexate.

2. Consider working with the FDA to import preservative-free methotrexate if sources are available.

Hospira, Inc.
1-877-946-7747
http://www.hospira.com/GlobalPages/contactus.aspx

Mylan Inc.
1-888-258-4199
http://www.mylan.com/contact_us.aspx

Sandoz, Inc.
1-609-627-8500
http://www.us.sandoz.com/contact_us/general_contact.shtml

APP Pharmaceuticals, LLC (currently does not make preservative-free methotrexate but is working to get FDA approval to do so)
1-888-386-1300
appmedicalinfo@APPpharma.com

Second, contact your Members of Congress and ask them to immediately send a letter to these same pharmaceutical companies requesting that they:

1. Prioritize the production of the preservative-free form of methotrexate.

2. Consider working with the FDA to import preservative-free methotrexate if sources are available.

Contact your Representatives here , and your members of Senate here.

To read more about this issue, please see People Against Childhood Cancer.

Thank you for your concern and your action.

Rally On!

Dai H. Chung, M.D. Dean Crowe
Chair, Rally Foundation for Childhood Cancer Research Rally Foundation for
Medical Advisory Board Childhood Cancer Research
Professor and Chairman, Department of Pediatric Surgery CEO and Founder
Professor, Department of Cancer Biology
Monroe Carell Jr. Children’s Hospital at Vanderbilt

Meet Rally Kid Mia, ALL Fighter

Mia was diagnosed with High Risk Acute Lymphocytic Leukemia (ALL) on 3/13/3009 at age 2. She was sent immediately to Seattle Children’s Hospital, where they began treatment. This was only the beginning for Mia and her family. Mia and her family spent most of 2009 living in Seattle away from home and away from Mia’s best friend and biggest supporter, Noah, the best twin brother a girl could ask for.

Mia is now 4 1/2 years old and has been fighting cancer for over half of her life. She was in remission until Christmas 2010, when she went in for a routine chemotherapy appointment to find out the unthinkable. After almost 2 years of chemotherapy, and only 6 months out from finishing treatment, Mia had relapsed. She was again hospitalized, and endured chemotherapy, radiation, and a stem cell transplant. Her twin brother Noah was a perfect match and was her stem cell donor.

Mia was preparing to go home after her stem cell transplant when her family received the news that Mia had relapsed yet again. Mia is truly in the fight of her life.

Mia’s parents are so proud of her for being brave and strong throughout her treatment, and so proud of Noah for being a loving and supportive twin brother. They say “It’s absolutely amazing the strength of a child and the beautiful connection these kids share. Mia loves dancing, listening to music, art and is an incredible athlete. Mia is a hero and reminds us that everyday is a gift – enjoy life!”