Wake me up when September Ends

Green Day. Never would have thought a Green Day song would remind me of how I really feel. 

An excerpt:

"As my memory rests

But never forgets what I lost
Wake me up when September ends"

Every September for the rest of my life will be this way. September is childhood cancer awareness month, which is SO very important! It's also the month before Madeleine's birthday. As important as it is to me to continue advocating and doing what I can to help find a cure, it is also a CONSTANT reminder of why my child is not here. Wake me up when September ends. I'm in a fairly consistent state of heartbreak, sadness, and exhaustion; to actively grieve is extremely hard on the body (see Facets of Life: exhausted mom meets grieving mom). To this day I haven't felt so consistently the sheer exhaustion of grief. I'm ready for it to be over. For me, it's a very hard, hard month.

First Day Feelings

Today I started my new job. I haven't worked a full time job in over 2 years. The last time I went to a full time job, I had a big pregnant belly, expecting a beautiful healthy new baby. And while today should be about the excitement, anxiety or humor of the day, I'm reminded instead of another first day, the first day of the rest of my life. Thursday, December 22, 2011. Not many who reads this will remember that day like we do. I remember I called my grandparents to ask for intense prayers. I called my mother on her way to my sister's school play. I made those calls on our way to the emergency room where a neurosurgeon was waiting for us, expecting us. It was the day nothing made sense and I was scared beyond the depths of my soul.

Please read about Madeleine's Day 1. Read it today. Now. Allow yourself to feel what you may, knowing now what you didn't know then. That feeling in your chest, that shake of your head, that tear on your cheek; let it resonate. 

And then please share it. Share what you felt on your first day, the first day you learned about Madeleine, what you thought, what you felt, what it made you do. Please, if you love our girl, please continue to share her story and what effect she had on you. Because that day, December 22, 2011, I wasn't a cancer mom yet. I had no clue, no real awareness about pediatric cancer. In fact I didn't even realize when they said "she has a mass in her brain, we think it could be a tumor," even THAT statement did not translate to me: my child may have cancer.

We have to educate the world around us. Everyone should have a cause: homelessness, human trafficking, animal cruelty, universal healthcare, animal rights. Whatever it may be, have a cause, do something right for the planet and humanity. If you haven't yet found your CAUSE, please join mine. A CURE for children with cancer. 

I Cannot Die Every Time

Yesterday was a doozy.

In time, I know my perceptions will go back to the way they should be; thinking of other people's circumstances and not personalizing them. To some extent, I do that now. The one exception is children with cancer. Who die.

The last time I posted about Talia Castellano, her outlook seemed grim, and I braced myself. I had grown to love this little girl who accepted in her heart that she was chosen for something much greater than herself. She had become one of the most public faces of childhood cancer. She wanted to make a difference. She wanted to bring awareness to the serious lack of interest in funding cure research for children. It only makes sense. It's common sense because kids have their whole lives ahead of them, she told The Truth365 in her interview with them in 2012 (a wonderful documentary for the cause I might add). I loved her for the child she was, the things taught to the masses through her, and the love and compassion for kids with cancer she stirred in the rest of the world. Although I didn't know her, I understood her struggle. I too was in awe of this little girl, for God's sake she was only 13 years old! Her vocabulary was beyond her years, she was fashion forward, beyond internet savvy, technology savvy: she was a firework. Truly, and completely.

So when she wasn't doing well, I dared not say, I felt in my heart she was going home soon. I truly wanted her to be healed, but I also wanted Madeleine to be healed. I braced myself for the flood of emotions. It always strikes me deep in my heart when another child passes; I also cry when these kids have triumphs and milestones they meet, thriving. I'm still so tied up and twisted in my emotions over my own daughter, how could I possibly keep my mind right for others? Each child is special; there are some that are especially special. Which is why I was devastated in April, when SARAH went home, or last December when HAYDEN took her last breath. And why I was so heartbroken and tears flowed like rain yesterday for TALIA. I didn't personally know these girls, had never met them, BUT I LOVED THEM. At the same time, Jeff brought up a very good point: am I truly mourning their death, or am I reliving the anguish of Madeleine each time? It could be both. Because these times of deeply emotional feelings are not to be personalized, it is not about me, or you. It's about that child, that family. And yet I still pray for myself when I pray for them. I hope that doesn't make me a terrible, self-centered person. I think - I hope - it's just a still brokenhearted mother missing her own child. And having lived through that once, I deserve to never live it again. Yet that's what I'm doing to myself. I can love them and admire them and cheer them on from the sideline to have faith, have hope, and fight for the cure till there is one. But I can't love them all like MADELEINE.

The neighbor across the street had a beautiful, full, leafy green tree a few months ago. I was aghast when walking my dog I saw him cutting the tree off completely. The entire fullness of the tree was gone. All that was left were what looked like tall stumps for branches. Bare. Vulnerable. Colorless. I thought for sure that tree would die. There was far too much of that tree cut away to survive. Today, and only today for some reason, I noticed that tree. Lush. Green. Healthy. I realized that one day, I too will be full again. My branches will grow and restore to be healthy again. There may or may not be any sign of this period in my life when I felt like I would die, when I felt bare, vulnerable, colorless, hopeless. I may be an amputee now, missing a huge part of my heart that I have always worn on my sleeve, sometimes to a detriment, but one day I will appear whole.

God Bless Talia Joy, may Jesus hold you close with Madeleine in the kingdom.

Blog Repost: Are you sick of all this Cancer Stuff?

I know I am!
Would I have chosen these cards for our family? Hell No!
Do I know in my heart that God is in control and has a plan for all of us? Absolutely.
Would I still give anything and everything (short of Annalise) to have Madeleine back, including my own life or her Daddy's? You bet your last dollar we would!

I feel privileged to have connected with yet another mother whose mission is to be an instrument in this movement for childhood cancer.

If you have the few minutes, please read her blog post. It says what so many of us are feeling or saying. http://nicolescobie.com/?p=339

I have never wanted pity for our family, just genuine support. I never knew, I wasn't AWARE of these evil monsters called childhood cancers until it struck Madeleine, I didn't know anybody who was or had faced this. I have made it my mission to enlighten those I come into contact with, because it's for her- all for Madeleine. Her life will not be forgotten about because she went to heaven.

GENETIC RESULTS

It seems like forever we've been waiting. Jeff truly has. From the moment Dr. Davidson confirmed Madeleine's INI-1 gene deletion, he has worried himself literally sick over the thoughts of what if we caused this? how could I live with myself, my daughter losing her life? what can I tell her mother that would comfort her if it's her genes?...

We had already discussed and decided that if our results are positive, if by some reason one of us has carried this through the family tree undetected, that we would only grow our family by adoption. Though this decision had been made, I don't think we had quite come to terms with it. (On a side note it is very likely we will adopt anyway, thanks to this experience). This experience has taught us so much. We have watched other families struggle with more than one child in treatment, with the unknowns of what's causing their children's illnesses, even losing a child before understanding their genetics. I know now too why our oncology team wants us to meet with the genetics counselor, just to have the updated high school biology knowledge of how genetics work in the body. It helps us to understand how these things happen when it all seems senseless.

That being said, Dr Davidson called late Tuesday afternoon to check on Madeleine. I turned on the speaker phone so she could talk to her (she calls her Boo Boo) and she could hear Madeleine cooing back at her, though she didn't cooperate much in showing the doc her latest affinity to screaming at the top of her lungs in addition to her normal babble. 

We don't have another appointment with her until next week, the first time we've gone longer than 9 days without seeing her. She called to tell us the results came back from Philadelphia......she wanted to call us right away....because they are negative.

Annalise will be okay; she is a normal healthy child that will not be compromised by this monster. Any future children Jeff and I conceive will likely not be compromised by this monster. Madeleine is unique, she is quite literally the only person like her, 1 in 7 billion. As if an elephant had been sitting on his chest since February,  her Daddy exploded into tears of relief.

This is just one of many reasons why research is so vital to our family, to our Madeleine, and to all children facing AT/RT. It's an absolute monster of a disease. No two children are exactly the same, which make funding for research even harder to come by. We are in old ancient Greece where inferior children were cast away and individuals with the best genes may leave the most offspring, or so the reasoning must be for these children - they are not worth saving. Well, not anymore. September is Childhood Cancer Awareness Month each year and I hope to be able to share everything I have learned and am learning about how to Support, Hope, Research, Fund and Thrive for these kids. I want my Madeleine forever.

please, please pray for little Eric James Baron battling ATRT at NYU  in the ICU, he is very sick.