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Madeleine

Sweet and spunky Madeleine James was diagnosed with an inoperable, malignant brain tumor called DIPG in January. Without delving into all of the details of this aggressive tumor, Maddie’s prognosis is grim, at best. The median overall survival of children diagnosed with DIPG is approximately 9 months, with the 18-month survival rate being less than 10%. These statistics make it one of the most devastating pediatric malignancies. Maddie’s doctors have given her 6 months.

My family has been absolutely floored by this diagnosis. Shock, disbelief, devastation, and complete anguish are a few words that come to mind. Constant worry over what this is doing to Maddie’s family; how her parents are even able to feign participation in the normal, day-to-day grind that keeps whizzing on around them regardless of their horrific new reality. I can’t imagine what they are going through, I truly can’t. And if I try, I immediately feel like weeping, punching, screaming, hyperventilating and vomiting at the same time. God, the excruciating pain they must be feeling right now. I can’t stop thinking about it.

I think of Maddie’s mom, Kajsa. As a mother, I can’t fathom the grief that has overtaken her heart. To lose a child, her only child. The child that was conceived after years of infertility struggles when it seemed like all hope of becoming pregnant was lost. The child she spent the last 5 and half years holding, raising, comforting, teaching and marveling over. Her only child. Her miracle. Her heart.

I think of my dear cousin and Maddie’s father, Collie. The way his eyes light up every single time he mentions Maddie’s name. The enormous pride and adoration he has for this child. The child he spent the last 5 and half years holding, raising, comforting, teaching and marveling over. His only child. Daddy’s girl. His heart.

I think about the intense grief Collie experienced four years ago when his sister and only sibling, Lauren, passed away unexpectedly at the age of 26. I think about the slow healing of his heart over the past four years, and whether it can withstand this ridiculously unfair and cruel blow. To lose his only sibling and now, his only child? This can’t possibly be happening. Yet, it is. I think about his parents, my aunt Katherine and uncle Collie, who are dealing with the stifling pain of losing a daughter and now, their only grandchild.

I think of Maddie’s cousins. Maddie’s aunt and uncles. Maddie’s grandparents and great-grandparents. Maddie’s neighbors, schoolmates and friends.

Most of all, I think of Maddie. I think of the incredibly bright, beautiful and talented 5-year-old that isn’t getting a chance at a healthy, long life that most children are given. To not be able to blossom into a vivacious and lovely young lady reminiscent of her godmother, Lauren.

I think of Maddie.

At this point in time, it’s so incredibly difficult to find any shred of a silver lining in all of this. Honestly, I’m not sure I ever will, but I do know that if I don’t try to help in any and every way possible, I’ll implode. Although Maddie’s parents have been going through a divorce, they have come together as a team of super powers dedicated to making every single day of Maddie’s life a day worth celebrating.

One of their CaringBridge journal entries says it best,

We have chosen to cherish every moment we have left with our beloved daughter.  And, a little laughter is sometimes the only thing that helps us get through the day.  We have a lifetime to deal with the grief when she is gone.

How can you help celebrate Miss Maddie’s life? Many, many ways. (And I would be remiss if I didn’t include a whoorl-worthy list.)

1. Maddie’s parents have started an amazing foundation to honor Maddie and her immense love of the ocean. You can learn all about The Maddie James Foundation here, as well as Collie and Kajsa’s hopes of creating The Maddie James Seaside Learning Center here. If you feel so inclined, please help them reach their goal by making a tax deductible donation here.

2. Visit Maddie’s CaringBridge page. Read about the special moments she is experiencing and will experience throughout the upcoming months.

3. Send Maddie and her family all of the prayers and positive thoughts you can muster. They need them more than you will ever know.

Over the past 5 years, I have witnessed firsthand the immense support you all have put forth for good friends of mine who were dealing with tragedies and challenges. For that, I am so incredibly humbled and thankful. It’s hard for me to wrap my brain around the sheer love and generosity that you have shown in the past. As you can imagine, this particular tragedy has taken hold of my heart. Watching this happen to a young family member has caused a pain that is, well, indescribable. I hope my attempts of providing you numerous ways to help haven’t come off as excessive, but I just want so desperately to help in any way that I can.

Most importantly, if only for a second, please think of Maddie and her family today. Send all the warm thoughts and prayers you can.

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103 comments
  1. TammiMarie

    February 7, 2011 at 9:49 am

    I am so sorry :(

  2. AnEmily

    February 7, 2011 at 9:59 am

    It’s not fair and children should never die. I’m so sorry for what your family is going through. I wish you all strength and peace.

  3. Lawyerish

    February 7, 2011 at 10:09 am

    I don’t even know what to say. Words are inadequate. My prayers are with your family and with sweet, beautiful Madeleine.

  4. Jen {Tiny Oranges}

    February 7, 2011 at 10:15 am

    I am typing through tears this morning. As a mom of two little girls who are my entire universe, I truly cannot fathom the depth of the devastation. What a beautiful, amazing post you wrote to honor Maddie. I am also honored to run along side you on Team Tiny Oranges at the Pediatric Cancer Research Foundation Run / Walk on May 1st. I will be running every step for Maddie, and all the kids like her, that have been affected by this horrendous disease that is robbing too many kids of their childhood. I am making it my personal goal as well, to raise $1000 for this cause. To find cures and causes so other kids and families don’t have to live through this nightmare. I am praying for Maddie, and her family, and your entire family.

  5. Beth

    February 7, 2011 at 10:25 am

    I’m so sorry to read this. I have friends who lost their daughter in October 2009 to a brain tumor, a little girl named Donna who was named for her grandmother … who died of a brain tumor while my friend was pregnant with Donna. Life can be unfathomably cruel.

    And yet, the silver lining you seek? Donna’s story continues in the charity that her parents founded in her name, Donna’s Good Things. It is small, but growing, and funds dance scholarships and the purchase of iPads and portable DVD players for kids undergoing treatments, and a New Year’s Eve party at the hospital.

    None of it will ever make up for the loss of Donna, of course, but it helps them. It is how they parent her now.

    And, on a more simple level, Donna’s journey inspired so many people to live their lives more fully, to be more mindful of the abundance of blessings that surround us every day.

    I can relate to your disbelief and pain. It’s awful to witness a child’s decline. But love will help them through this. I’m sending some today.

  6. Alice Q. Foodie

    February 7, 2011 at 10:29 am

    Oh Sarah I am so sorry. We have a good friend who was diagnosed with a GBM a couple of years ago. She’s too young at 44 and I had all of those same feelings you describe when we heard, but this is just unthinkable. It’s not much of a silver lining to you and your family, and a bit of a cliche, but hopefully this will at least remind all who see it to cherish and appreciate what (and who) they have and realize how lucky they are. Kiss your family members and tell them you love them. You just never know.

  7. cj4

    February 7, 2011 at 10:56 am

    Thanks, Sarah, and thanks to all of you for your warm prayers and words of support.

    Maddie has a lot of living left to do and we are enjoying every single second of it. She has taken the changes to her body with little more than “meh” and continues to be her usual, vivacious, hilarious self. Life may seem incredibly cruel, but I have been blessed with the honor of being the daddy to the most awesome little girl who has ever been. I can only see joy in that privilege. There are many tears to come, but we will get through this together and, right now, we are swimming together, laughing together, hugging together, watching Scooby Doo together. Just as we always have.

    We love you.

  8. SAJ

    February 7, 2011 at 11:06 am

    I’m so sorry. I will pray and run with you!

  9. Angela

    February 7, 2011 at 11:06 am

    My heart breaks for Maddie and her family. I’ll be hugging my own five and a half year old a little bit harder this afternoon as I think about your family. God bless Maddie, her mom, her dad, and you.

  10. J

    February 7, 2011 at 11:11 am

    I’m so, so sorry. What a truly unimaginable ordeal. I’ll be sending prayers and donating what I can to this family and cause.

  11. Tina

    February 7, 2011 at 11:15 am

    I am so very sorry for you and your family and for Maddie. I wish there was more to do. Sending all my thoughts and prayers…
    Best,
    Tina

  12. gorillabuns

    February 7, 2011 at 11:19 am

    i’m with you. no freaking silver lining to be had here,

    i’m sorry. i’m praying.

  13. Danielle (elleinadspir)

    February 7, 2011 at 11:29 am

    She is beautiful. My thoughts are with all of you.

  14. Lin

    February 7, 2011 at 11:31 am

    There are no words. Be fleet of foot and know Maddie and her family will be in our thoughts and prayers.

  15. bethany actually

    February 7, 2011 at 11:33 am

    Sarah, I’m brokenhearted for you and your family. Maddie and all around her have my prayers and love.