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.
narmalie
February 7, 2011 at 6:37 pmSuch a heartbreaking and unfair situation. My thoughts and prayers are with Maddie and with your whole family.
What a beautiful, lovely and loved little girl.
Sarah
February 7, 2011 at 6:59 pmI’m so very sorry to read this. I only recently came across your blog and was so saddened to hear that your family had received such difficult and tragic news. A friend of a friend had a young daughter with the same, or similar, diagnosis a few years ago, and they now run a foundation in her name. Their site is http://www.smilesforsophieforever.org. I hope that if you choose to explore their site and their foundation, it will help you and your loved ones feel connected to someone who can relate to the experience and all the emotion that comes with it. I will be thinking of Maddie and her entire family.
Whitney
February 7, 2011 at 8:24 pmI can’t stop crying and my heart hurts. I am so sorry.
vickie
February 7, 2011 at 9:08 pmGod is now and forever will be at your side. May his mercy and grace carry you through your days ahead. I will be praying for all of you.
Amy
February 7, 2011 at 9:25 pmThinking of and praying for you and your family—I cannot imagine the devastating pain.
megan
February 7, 2011 at 9:30 pmOh Sarah. :-( I am so heartbroken for your family, I can’t even imagine. I am so, so, so sorry. My thoughts & prayers are with you all.
Amelia
February 7, 2011 at 10:59 pmMy heart, and prayers go out to Maddie and her family. This is so sad. I remember Maddie from preschool where I work. I remember those big beautiful blue eyes and that sweet smile that she always had. She was always so polite and nice with everyone. May God give you the strength and guidance to deal with this tragic news. My prayers are with you all.
Mary Kay
February 8, 2011 at 4:31 amPerfect expression of the love we feel for CJ4 and Maddie. We can only lift them up in our prayers and continue to pray that every day brings a smile along with all the tears.
Reedu
February 8, 2011 at 8:08 amThere are no words. This is just terrible. I am so terribly sorry.
brianne
February 8, 2011 at 8:44 amSending more prayers your way, Sarah. For your family, and especially for Madeleine.
Pinkie Bling
February 8, 2011 at 8:58 amI’m so sorry this is happening to your family, Sarah. I’m keeping thoughts of you guys close to my heart, and hoping for comfort and peace for all of you.
Blondie
February 8, 2011 at 10:08 amI’m so sorry to hear about this tragedy. Maddie is a beautiful girl, and my heart goes out to your entire family. I have a five year old & this story breaks my heart.
Marci
February 8, 2011 at 10:47 amThis is so heartbreaking and yes, unfair. What a wonderful little girl.
Many prayers of comfort to Maddie, her parents, you and your entire family.
Claudia
February 8, 2011 at 11:11 amI am so so sorry for Maddie and her family. Thank you for sharing this tragic story with us. I hope you single-handedly raise a million dollars on this run.
Mama in the City
February 8, 2011 at 11:30 amThat is a very lovely well written post Sarah. It is really hard when these diagnosis are given a name and a face, like Maddie. It is a grand reminder how important life is, and even more important how life is when you are given a diagnosis that is terminal. Things like messy rooms and your toddler driving you nuts, seem like a drop in the bucket compared to these real life situations.