With a simple glance at this picture I am transported back to what seems like a thousand lifetimes ago. The horror washes over me again in an instant and the disbelief stops my beating heart. We were at the wedding of a close family friend and Izzy had just completed her role as ‘miniature bride,’ a job she had anticipated for months.
Just weeks before we had learned of Izzy’s stage IV relapse, she had her central line placement, began her first round of chemotherapy and as you can see, her hair had fallen out. The team had told us it usually lasted the first few rounds of chemo but we would soon learn that Izzy wouldn’t do anything by the book. I first found strands of hair on her pillow, then clumps on her robe. Within days it was covering the house so the day before the rehearsal I handed her a pair of scissors and told her she could cut it off. She thought I was the coolest mom in the world and I wondered if I was the craziest as I followed her around picking it up thinking of all the ways I could save it. I had wanted so desperately for her to have hair for the wedding. If she could just have hair for the wedding, I thought then I could make it. I knew if we went to the wedding with her little bald head everyone would stare at us and cry. And that’s exactly what they did. Everyone stared. Everyone cried. I knew they did it from a place of compassion but I just wasn’t ready for it yet. And I knew what they were thinking. Is she going to die?
In this picture Izzy had just walked down the aisle and raced over to me as I sat in the front row, completely frozen. I scooped her into my arms and held her as tightly as I may have ever held her before. Because in that moment I had to acknowledge the thing I had been trying to forget all day. In that moment I had to acknowledge that I may have just seen Izzy walk down the isle the only time in her life she ever would. I had to acknowledge the frailty of her life. Cancer, chemo, hospitals and whatever. I was learning to deal with it. But every daughter wants to grow up and have a fancy wedding and every mother wants to see it and that’s the kind of stuff I was not ready to deal with. But on this day I had to and I had to be able to move forward knowing that she and I may never get that. For many people this was a beautiful day. For me it was, infinitely painful.
The thing about this day is that it was actually quite beautiful for Izzy (and Anna, sweet Anna whose wedding day it was). Izzy got to relish in feeling like a real, live princess for the first time in her life. She danced and twirled all day and all night. The humble bride graciously shared the spotlight with her as the day carried on. And since all the bridesmaids wore IZZYSTRONG bracelets on their ankles, I truly think Izzy thought the day was just as much about her as it was the bride.
By the end of the reception Izzy was getting tired and I could feel the heaviness began to weigh on me again. I realized the fun and games would have to come to an end. The next day while the other families went to church and the pool, Izzy and I would have to pack and head out for another couple weeks in Cincinnati. Even though I had no idea how hard the road was about to get, I knew as I watched her dance and laugh that the road was about to get rugged. That the time would be coming soon when the laughing and the dancing would stop and the suffering would begin.
I remember sitting towards the back of the room with a mother who had lost her daughter when the little girl was just very young. We sat together as they played the ‘father/daughter’ song and wept. Before the song ended she grabbed my hand and said something I will never forget. She wiped away her tears, looked me straight in the eyes and said, “Yours will not go.” That has been one of the most significant moments on this journey for me. I sat through my fear and through my sorrow and I sat in agreement with a mother who has suffered the ultimate loss. Together, we declared that Izzy would not go, and I believe that had a powerful impact in the Kingdom.
When I see myself in this picture now, it just breaks my heart. That woman I see has no idea what she is about to walk into, no way of knowing how ugly it’s going to get. The suffering she is about to witness is far beyond any she could imagine. She will see Izzy go through things that no mother should see. Things that can never, ever be unseen. She will see a darkness and a loneliness she didn’t know was possible. But the thing about that woman is that she will see God show up in a way she didn’t know was possible either. Though her faith will waiver, though her strength will fail, He will show up, day after day after day and fight for them. Because even ‘if we are faithless, he will remain faithful.’ 2 Timothy 2:13
If you follow us on Facebook than you know where I’m going with all this. Yesterday, my brother got married and yesterday, Izzy got to walk down the aisle once again. She got to wear a fancy dress and twirl and spin the day away feeling like a princess. Nearly a year past treatment, she of course had hair this time. Long enough to pull back and long enough to pin flowers in. Instead of concerned people staring at her wondering if she was going to die many people approached me afterwards and talked about how full of life she was. Talked about how they’ve followed her blog and prayed for her for such a very long time. It was such a contrast to see her yesterday so full of life knowing that two years ago she had been so full of darkness. I am so thankful to the Lord, so grateful. Blessed beyond words.
I would like very much to end this post here. Leaving you with the cute picture at the bottom a warm fuzzy feeling. But as a cancer mom in the the month of Pediatric Cancer Awareness I have an obligation to write another paragraph or two. The truth is, Izzy did get to walk down the aisle not once, but twice. But I could tell you the names of several little girls who never got to do it even once. The truth is Pediatric Cancer is under-funded and under-talked about. Kids are dying everyday right here in the United States and few people are doing anything about it because it’s not profitable.
There is no cure for Stage IV Neuroblastoma. Sometimes treatment works and sometimes it doesn’t. That means we still have a 50/50 chance that Izzy will ever really get to walk down the isle on her own wedding day. Actually, only a 50/50 chance that she’ll even make it to the fifth grade. Listen, I don’t put my hope in modern medicine. I put my hope in the Creator of the universe. But a cure for cancer would be nice and those two things can co-exist.
Tonight I’ll go to bed thankful for what I’ve been given. I’ll thank the Lord for another day with Izzy, more specifically, a day she is living life fully, not fighting. And I will choose not to wonder if I’ll ever get to plan her dream wedding with her. I’ll choose not to wonder if we’ll ever get to do the dress shopping or look at flowers or venues or any of it. l will thank God that not only did I get to see her walk down the aisle two years ago but that I got to see her do it again yesterday…with hair.
Blessings on you today and LIFE for IZZY!