For eight weeks I never put my phone down. For eight weeks I kept the phone by my bed as I slept. And then, exactly on that eighth week, I got the call. Kajsa’s name popped up on the screen. Since we had been communicating purely through texts and emails, I knew this was it. I took a deep breath and answered the phone, “Hello?” “Hi, it’s me. Maddie passed this evening.” “Oh Kajsa . . .” and the tears just flowed down my cheeks.
The week prior, Maddie had a rough day. It was a Friday, and she was experiencing full body seizures. Our dear, dear friend, Alison, was there as it happened. The hospice nurse explained to Alison what was going in layman’s terms–essentially, Maddie’s brain was shutting down, but her body wasn’t ready to, so her body was trying to jolt the brain awake with the seizures. Thankfully, these seizures never caused any pain, and the hospice nurse was finally able to get the right dosage of medications to calm Maddie down, and she drifted into a peaceful state. They didn’t know if she’d make it through the night.
The next morning was a Saturday, and we were scheduled to walk in Dana Point’s Festival of Whales parade in Maddie’s honor. Maddie’s school had been organized to march in a group, and the city donated a sea turtle balloon (think Macy’s Day Parade huge) for our group to carry. The last thing I wanted to do was put on a front and march in this parade, but I knew I had to. Raising awareness about the Maddie James Foundation, was necessary, and I could help with that—much more so than sitting at home and grieving.
So the family and I walked to the staging area of the parade. It was down, around a corner, and in a parking lot. As I turned that corner and saw the sea turtle balloon, with the sea of blue shirts worn in Maddie’s honor, I became overwhelmed and started sobbing. I couldn’t believe the support of the people—everyone was carrying signs with her picture, banners were made, her kindergarten class was chanting, “We love you Maddie James!”. . . it was a good thing I was wearing huge, oversized glasses to mask my eyes.
After the parade, Kajsa asked if Bowen and I wanted to come and say good-bye to Maddie. As she lay there, peacefully sleeping, I couldn’t believe that only seven weeks had gone by. I couldn’t believe that she had been having tacos at my house only a month and a half ago. We kissed her, hugged her, and whispered that we’d see her again . . .
That next week was emotionally taxing on everyone. Her parents were with her at all times, whispering that they loved her, with Scooby Doo playing in the background constantly. They read, exercised her legs and arms, and sang to her.
On March 13, 2011, at 9:00 PM, Kajsa and Collie were at Maddie’s side. Kajsa was singing the same songs that she had sung every night to Maddie, since she was a baby—her “night-night songs.” Just as Kajsa was singing the last words of the last song, she kissed her, and Maddie took her last breath. I can’t imagine a more beautiful way, for such a wonderful, vivacious girl, to go and swim with the sea turtles in heaven.
Collie writes on Caring Bridge, “While we hoped we would have more time with her, we are grateful that she died peacefully in her sleep at home. She experienced no pain and no fear. For that, we are eternally grateful. We will miss her with all our heart and soul, but feel so privileged to have had the incredible honor of being this amazing girl’s parents. She was the most beautiful, funny, intelligent and warm-hearted person we have ever known.”
For more information on The Maddie James Foundation, click here.
To donate to the Maddie James Foundation, click here.
To read Maddie’s Caring Bridge site, click here.