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.

  1. Vicki

    February 7, 2011 at 8:05 am

    Oh Sarah, this is just devastating, what a beautiful little girl. I don’t really know what to say as I don’t think words are enough in this situation, but as I live by the sea and an amazing oceanographic/marine museum, I will put together a little care package of fun stuff for Maddie and send it to the address you gave.
    My thoughts and prayers are with you all.

  2. C @ Kid Things

    February 7, 2011 at 8:07 am

    This broke my heart, but that last picture just did me in. Maddie and her family are definitely in my thoughts today, and most likely many more days to come.

  3. amanda

    February 7, 2011 at 8:16 am

    My heart breaks for you and your family. I cannot imagine a more intense pain. I will send all of my good healthy vibes towards Maddie and her mom and dad. Love to you. Now heading over to your page to donate….

  4. Gabriella

    February 7, 2011 at 8:20 am

    This broke my heart. Maddie looks a lot like my little sister Lois, who is only 9. I wish words would help, but the only thing I can do now is pray. And I will!

  5. Colleen

    February 7, 2011 at 8:25 am

    As the mother of a 3 year old little girl who is the light of my life and my one and only child, there are simply no words. I am so horrifically sorry for your entire family. I find “prayer” incredibly difficult when I hear stories such as this, but your family will be in in my thoughts constantly and I wish for Maddie’s days to be filled with laughter and love.

  6. Bopril

    February 7, 2011 at 8:27 am

    Damn, I am just so sorry. This broke my heart, and I will be thinking of sweet Maddie and her family (including you) for a long time to come. Sending good thoughts and copious prayer their way, right now.

  7. Angella

    February 7, 2011 at 8:43 am

    Oh, Sarah. I am so, so sorry. If I lived there I would run with you for sure. Hugs and love and prayers to Maddie and everyone from us.

  8. sizzle

    February 7, 2011 at 8:50 am

    I’m so sorry. This breaks my heart. They are all in my prayers.

  9. Jessica

    February 7, 2011 at 8:53 am

    I’m so sorry to hear this. I’m praying for Maddie and her family.

  10. Dani

    February 7, 2011 at 8:55 am

    Oh, Sarah, what devastating news for everyone. I cannot begin to imagine the pain they are all feeling, but most especially Maddie’s parents. I have an urge to run and sweep my daughter up and never let her go.

    They are in my thoughts and prayers. I am so, so sorry.

  11. Rita

    February 7, 2011 at 8:56 am

    My God Sarah. I have no words.

  12. janet

    February 7, 2011 at 9:09 am

    sarah as i write this, tears just roll down my face. i too have a 5 year old daughter and to think of the pain her parents are enduring this very moment is heartbreaking, inconceivable. one thing i know for sure by looking at her sweet face is that her soul is as pure as the ocean and her heart full of love and that is what she’ll leave behind to all her loved ones. may god bless her and her family and may HE give them peace in this difficult time.

  13. am'ti b

    February 7, 2011 at 9:24 am

    i have not stopped thinking of them since i heard my heart is with them and all my good thoughts! this was lovely and the pictures are so joyful. love to them all!

  14. San

    February 7, 2011 at 9:28 am

    I am so, so sorry, Sarah… for your family and little Maddie. I am at a loss of words.

  15. Rebecca (Bearca)

    February 7, 2011 at 9:43 am

    Sarah. This breaks my heart and I have tears in my eyes. What a devastating thing to happen to your family. And what a beautiful little girl. Love and prayers to you, Madeleine and the whole family. xoxo