5 thoughts on “Ro, you are my immortal soul”

  1. Maya its been two years and five months today sense baby Vincent past and somedays I still feel like that baby turtle trying to just survive!! @ CANCER…FUCK YOU I HATE YOU!!!! ♥U MAYA….I say….when they say stay strong……tell them to lose a child and come talk to you!!!

    1. Tara, I am so sorry for your terrible loss. I will think about your baby Vincent too, and I hope that you find some peace in time. I am so very sorry.

  2. Maya,
    My heart is heavy for you and I CAN imagine the pain that is within you. I know the feeling when you say your last goodbyes and I know how it feels to be weak to your knees. I cried so much that I couldn’t keep anything down. One year and almost 7 months ago I lost my daughter Irelynn the day of her 4th birthday. Dec. 22, 2009 to Valley Fever after just beating her Leukemia. Two months after my daughter passed I can remember myself thinking about her all day. My world became so empty. Irelynn is my only child. I don’t have any other children to love and take care of. I feel that if I had other children I would be able to feel her through them, but I don’t. I did just what you are doing, laid in bed. I thought to myself after a while that if my daughter at a young age can go to a clinic and get poked and receive such intense treatment then I can get myself out of bed for her.
    Maya, 3 days after Thanksgiving 2009 Irelynn’s heart stopped 3 times. One month prior she was in Disney World have a blast with her grandparents. 11 months of nothing, no problems, the nodules in her lungs were doing well (she also had Aspergillus, a type of mold infection in her lungs) and then she was ill and wasn’t eating, so we came in to clinic and there on the screen the nodules were right in front of me.
    After Irelynn’s heart stopped we put her on life support. Looking at her lying in bed completely helpless with lines and tubes that looked like a complete maze made me hurt so bad! When Irelynn was put on ECMO (life support) she was swollen, she could only lie on her back, she couldn’t talk because she was intubated, the only thing I could do for her as her mommy was giver her sponge baths, and all I could do is make her as comfortable as possible. The last time I heard my daughters voice was November 29th, she said to me “Goodnight mommy, I love you.” My daughter was such a warm hearted person and the personality she had is one that would melt your heart if you met her, just like Ronan Maya. Very smart, chatty, and polite. So, with that said I knew I wanted to keep her spirit going and the only way I could do that is live my life for her.
    I am now employed at PCH where I can help other kids just like her! I LOVE my job and where I am. I know she is so proud of me. Maya, maybe you can do something that Ronan loved to do. For example, I didn’t know about Beads of Courage so I am about to get all Irelynn’s beads and put them together for her. I am also going to paint her room and fix it up for her soon. I believe that what we do, they do with us. Last year on her birthday as well as the one year of her being gone, I had a big birthday party for her and invited all her friends. She LOVED her birthday. In my own belief, I think they are right there in front of us, we just need to figure out how to see them. I’m sorry if this is completely obscured to you. I still cry to this day. I’m buying a house and cried because Irelynn will never be able to show me what room she wants, Ill never be able to kiss her goodnight, Ill never be able to know what colors she wants to paint her room, and most important to me I will never be able to hear her tell me “Mommy, I love you more!”
    Maya, if you want to chat with someone, such as myself with having the same experience as you, please, please call me! 6235479144. I hope that I can be of some help for you. I never went to a counselor because I feel they are paid to tell you want you want to hear. I think the best advice is advice from someone whom has been down this awful path in life. The worse thing that could happen to any parent, HAS happen to us.
    The loss of a child is never a pain that will heal in time. We have to find that acceptance in our lives here in this world untill we can be with them again and be truely happy.

    1. Jennifer, what a sweet girl you are a mama to. My heart breaks to hear the words she said to you last. I am so sorry, and with all my heart I hope you can be strong until you see her again. Thank you for all the great work you do.

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