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.
brandon
February 7, 2011 at 2:21 pmmy god, this is heartbreaking. i couldn’t begin to know how to cope.
Miss Monica
February 7, 2011 at 2:21 pmMaddie was one of my students when I was a preschool teacher. Going to work every day and being part of the lives of children like this was such a blessing. She was the kind of soul that lights up everyone around her. I pray for God’s healing touch in her life and the lives of those in her world who are effected by this diagnosis.
Thanks for sharing her story!
Miss Monica
February 7, 2011 at 2:28 pmMaddie was one of my students when I was a preschool teacher. Going to work every day and being part of the lives of children like this was such a blessing. She was the kind of soul that lights up everyone around her. I pray for God’s healing touch in her life and the lives of those in her world who are effected by this diagnosis.
Thanks for sharing
bishOp stu tu
February 7, 2011 at 2:36 pmwhOOrl gOOrl,
Your words portray, with gentle sensitivity, the saddest event I’ve witnessed in sixty years. I know how much thought and prayer you’ve given to telling this heart-breaking story.
I thought it impossible to translate into words these emotions that we are experiencing. The Oklahoma portion of the tribe says “bless you” for doing so with such eloquence.
The Collie James family remains at the center of this daily process. We send our most caring love to Maddie, Kajsa, Collie IV, Katherine and my brother Collie….while wishing and praying we could do more.
Amanda Brown
February 7, 2011 at 2:45 pmThere are no words to convey the tragedy here. Makes my heart so heavy.
Caroline
February 7, 2011 at 3:42 pmSending you & Maddie and the entire fam loads and loads of love! xoxo
Rhi
February 7, 2011 at 4:25 pmSo heartbreaking. Your entire family is in my thoughts. xo
Katie
February 7, 2011 at 4:26 pmMy dear cousin, your words are incredibly beautiful and express perfectly what I have been unable to do adequately. So thank you for the post. Love you and can’t wait to see you and the family!
Janette Maclean (Paulsen)
February 7, 2011 at 4:55 pmI don’t normally comment but as I read your blog regularly (from New Zealand), I am amazed how really there is fewer than 7 degrees of separation sometimes….I am an old friend of Kajsa (my family is Scandinavian and we were all in the same club) and when I heard the devastating news, I was in shock. We have been out of touch for many years but I have been thinking of Maddie and her family every day and am truly amazed by how Maddie’s parents are holding it together with such grace and humour. My whole family is thinking of you all.
beckie s
February 7, 2011 at 5:20 pmOh. my. Words cannot express enough sorrow of how I feel for her and the family. But the joy they are giving her is so tremendous. My prayers are with the whole family.
Roxanne
February 7, 2011 at 5:22 pmOh my God, Sarah. I am so, so, so incredibly sorry to hear about this. You’re so right when you say that no child deserves to die. I can’t even imagine the pain you and your entire family is going through right now. I am sending all my thoughts and prayers Maddie’s way.
Ninabi
February 7, 2011 at 5:40 pmOh God.
As a mother I cannot begin to imagine what her parents are going through. What a beautiful child, a treasure in every way.
My heart breaks for them all and for everyone that loves her.
Kim
February 7, 2011 at 5:48 pmOh my God. Truly unimaginable. What a brave girl Maddie is and what incredible parents she has. I’m speechless and devastated and crushed. I will run on May 1st here in Denver in honor of Maddie (it’s the cherry creek sneak: http://www.cherrycreeksneak.com) I will be thinking of her and her family constantly.
Amanda @ Ramblings of an Empty Mind
February 7, 2011 at 5:48 pmSarah, like the rest, I don’t even know what to say. Sending thoughts, prayers and hugs your way and to Madeline and her family. No one should have to go through this, much less a parent.
(((HUGS)))
Roxanna
February 7, 2011 at 6:10 pmSarah, what a beautiful tribute to your beautiful Maddie. Thank you for letting us know how we can help. Big hugs to you and all of yours.