#cannonballkidscancer

[pobearsuburbs]

[jmposada-blog]

Here again.

It’s September 1st. What did you think of today? Today I thought of my sweet Goddaughter. My sweet Emmi Grace. I thought of the millions of children every year who are diagnosed with childhood cancer. I babysat sweet Emmi’s big sister Nina and rather than putting Emmi to bed and letting Nina give her baby sister a kiss on the cheek, sweet Nina said goodnight to her sister in a prayer while looking at the “Emmi moon”. It’s the most beautiful, terrible thing she does every night. She sees any full moon and says “EMMI MOON!” with all her energy. She talks to the moon like her sweet sister really is up there on the moon and she’ll come back to her any minute. Sometimes its quick and sometimes she babbles on telling Emmi anything that comes to her mind, sharing her life with her sister one prayer at a time, the way I grew up babbling to my sister as she tried to sleep in the twin bed across from mine. I only wish they had been given the opportunity to grow up together and know that love and friendship you can only experience with your sister. But they don’t get that. Nina gets to grow up with a sister she can only talk to in her prayers and her dreams. Our family has a hole in it. We miss our sweet baby. Cancer took all this away from us. It took Emmi’s life from her. It took her right to live away from her. Her parents were told they had to make the choice for their 4 month old baby: to treat or not to treat. So they treated. Then they treated some more. And some more. And then they were told the treatment had made Emmi too sick. She couldn’t continue treatment. There was nothing more to do. Their were no more options. How terrible. How heart breaking, sould crushing, mind boggling. What did they mean no more options? I was there on that day. The day she went from okay to too sick. She was in my arms sleeping. I put a bow on her head at the hospital, put my laptop on the hospital stool, rocked this sweet girl that was finally letting us hold her again and watched Suits while rocking her. I remember her parents coming back to the hospital that morning and we took a picture of me holding sweet Emmi. It’s the last picture I have of her. I’m laughing at something said off camera and Emmi is bundled up in a blanket with that big bow on her head, sleeping soundly for a few moments. I had to leave again for my other cousins shower. The doctors were coming in to talk to them, I stayed just to hear the updates. Emmi was going to the PICU, but it was going to be okay. It had to be okay. It wasn’t good, but she was okay. I just been holding her after all. I helped my cousins pack all their carefully stored belongings and we parted that day. That’s how it happened. So quickly. Our world went from upside down to sideways. I drove home, under strict instructions to tell no one. Not yet. She was going to be okay. That’s what we told ourselves that day. Then the call. That terrible call. Come back. Bring my mom. We don’t know, but it might be time. Just bring my mom. And back we drove. In the pouring rain we drove to Orlando. How appropriate that it was raining as we held in our tears because it couldn’t be true. Emmi couldn’t be out of time. Not yet. She was so tiny. So much life left she was supposed to live. So many memorie she was supposed to have. Her sister was supposed to have her as a maid of honor. They were supposed to grow up together and hold hands, and play games like little girls do. They were supposed to wear matching dresses every year for family pictures until someone got old enough to say they didn’t want to match anymore. But instead we lost her. In that terrible moment, more terrible choices were presented. The oscillator pumped her tiny body with oxygen so quickly she shook. She was unable to move. We kept vigil. We prayed. So many prayers were said, over and over. Prayers for a miracle. Prayers that she would make it. Prayers that she wouldn’t feel any of this. Prayers that she was not in pain. We prayed so hard for that little girl. She was confirmed. I promised to guide her in the instruction of the faith. I knew she would guide me instead. Forever watching over us and the lives we lived in her honor. I still cannot listen to the Beatitudes without crying, thinking of her tiny body in the big room and those terrible days that never ended. They still haven’t ended and the truth is they never will. We will always, ALWAYS fee her absence. In family photos, at Christmas, only 3 days after her birthday, at Easter, so close to diagnosis day, in September when we go grey and gold for our sweet Emmi. We feel it forever. Those days will never truly end. Emmi never should have had to endure adult chemo adapted to treat a pediatric cancer. Emmi should have had a treatment plan that involved treatments designed specifically for pediatric cancer, and more specifically for ATRT. That does not exist. Pediatric cancer isn’t pretty. It’s not bald heads and smiling kids. In reality, pediatric cancer is a million terrible choices. They are terrible because treatment options are slim for pediatrics. I’ll say it again. It’s not pretty, it’s terrible. And that’s why you need to go gold in September. Because no child should be fighting war with a slingshot when the enemy has a machine gun. And no parent should have to bury their child because their were no more options. Join us and fight. Join us and pray. Join us and go gold.

[jmposada-blog]

A Year Ago Today

A year ago today I was probably getting ready for a good night's sleep after school and getting ready to spend my Saturday in Orlando so my cousin and her husband could have a night together outside of a hospital room. I was probably putting together my overnight bag, taking an antibiotic for bronchitis that had finally eased up on my lungs. I was talking with my mom about all the things we had planned for the summer. I was going to help my aunt watch her granddaughter and drive up to Orlando when I could to give my cousin the breaks she needed while making sure she knew her other daughter was safe and sound, and still being herself. A year ago today, I prayed fervently for a miracle that never came and a cure that still doesn't exist. I had no idea that only a few short weeks later we would be saying "I love you" one last time to our sweet Emmi Grace. That I would spend 3 days in Orlando praying for something I could do to help her, her parents, us all, but knowing the only thing I could do was be there. And a year ago tomorrow, I drove to Orlando, straight through to APH, came to my sweet Goddaughter's room, said, "Hi!" enthusiastically to her wonderful mama, got almost no sleep as I jumped every time a monitor beeped, held that sweet baby in my arms and hoped against hope that she'd be our little miracle. And today I can tell you, she is. We said goodbye to her on this earth 11 months ago. But our sweet Emmi Grace continues to touch our lives. In her sister's insistence on talking to the "Emmi Moon" which is as sad and tragic as it is beautiful, to the bracelet I wear daily to remind me she was far from alone in her disease and that infants like her are diagnosed every day. She's in the cards we sent to APH from my students for a sweet girl just like her, with the same cancer, still fighting for every day. And now I'm here. I'm a year older (for sure) and still sorting through all that I feel about missing my sweet Emmi Grace. I still feel like only yesterday I held her. This spring break, it hit me like a fresh wave of grief as I remembered spending last spring break huddled up at their house with her and her big sister, pre diagnosis, marveling at what a gift a child is and how sweet babies are, how amazing it is to watch them see everything with new eyes, and living for those baby snuggles. That was the last weekend I got to babysit for her in her home. And I'm so thankful for every moment I spent with her even when I am overwhelmed with grief. Even when someone asks about the yellow ribbon on my TShirt, and who is Emmi Grace, because I was so blessed to know her. And I miss her everyday. In every moment. And as I pack up my classroom in calm this year, I remember quickly shoving everything away last year. Telling my principal I didn't know if I'd be back for the last day. Taking day after day as it got worse. Canceling a trip that ways never meant to be after all. Missing post-planning as I melted into a puddle. And most of all, I remember sitting across from my cousin as she asked me to be her daughter's confirmation God mother. A cousin who, ten years earlier, had been my own sponsor. I remember standing in the room as I listened to the Beatitudes and promising to guide her. I remember tears rolling down my face because I knew she would be the one guiding me in every thought and deed for the rest of my life. That I would always think of her in my weaknesses and know I could do more, be stronger, and do better. And now I'm here, closing out year 2 in my classroom. A little worse for wear, but still making it through. Loving my students endlessly, praying ceaselessly that Emmi Grace will pray for me to have her strength and grace. And I hold the other babies in my life a little tighter. I love a little more freely. I let people know how I feel about them more quickly. And I try a little harder to be the Godmother she deserved to have. And I miss her, but try to heal my heart a little every day. With a kiss from her sister, a hug from her mom, and joy from the many blessings I still have here with me, with a faith that gives me the strength to believe that one day I will be with her again.

[jmposada-blog]

So proud to be part of team #emmigracesangels today and every day as we fight along side families fighting kids cancer because we're #strongertogether #cannonballkidscancer #morethanfour #childhoodcancerawarenessmonth #fallstampede5k (at Chik-Fil-A Fall Stampede)