Crys is starting a foundation in Alexa's memory called the Princess Alexa Foundation which will provide a dress up closet and themed parties at the hospital (starting first at Children's Medical Center of Dallas where Alexa was treated) as well as build a park in Alexa's memory. I have been following Alexa's story for some time now, through an introduction from Jen Weintraub. I cried when Alexa died and have followed Crys' journey of grief since her passing. When she announced she was created the Princess Alexa Foundation, I moved myself from more than just a commenter on the blog, and reached out to help. I don't donate to other nonprofits due to my financial obligation to Heroes, but I can help in other ways. I know what it's like to set up a nonprofit in memory of my child. I know nonprofit and the steps you need ot take, beyond just the paperwork forthe IRS, to get established. The least I can do is share my wisdom.
As we were driving over, I began to feel more nervous about having brought Maggie with me to play with Zack. Here is my healthy, beautiful, princess-loving (almost three) two year old. Was that insensitive of me? I was stressing about it by the time we pulled up because I so desperately did not want to hurt or offend Crys by Maggie's presence. We were complete strangers, so I didn't know what her reaction would be.
I've never met a more kind, gracious or loving mother and woman. Crys opened the door with a huge smile to Maggie and ushered us right in. Within minutes, she was asking Maggie if she wanted to go upstairs to Princess Alexa's room and play with all the princess stuff. My first reaction was to say no because I thought that would be too hard on her to see Maggie playing with those items. So, hesitantly, I climbed the stairs, more than a little nervous. Everything Maggie tried to pull out, I would gently try to tell her no or try not to let her play with it. But, Crys was pulling it out further, putting crowns on Maggie's head, showing her more toys, and laughing as Maggie slowly made a huge mess of Alexa's gorgeous bedroom.
Crys and I moved to the business of discussing their foundation and my suggestions for improvement. I think the idea of what they are doing is really fantastic. What I knew from reading Alexa's website was that dress up and being a princess was something special to her. What I didn't fully realize was that for Alexa, it was more than just fun playtime or something she merely enjoyed doing. It was a WAY OF LIFE. It was the family's way to cope and find happiness during a dark time. And they want to share that hope and happiness with others.
Soon, her husband Zack joined us in the office upstairs. His first glance was to Alexa's room, and the little girl currently in destroy mode. The room looked like a tornado had gone through it! I felt an immediate lurch in my stomach because once again, I didn't want this to upset him. Instead, he loving looked down at Maggie and said, "well, that's how that room should be!" Gracious, I tell you.
The three of us sat and discussed our feelings of having lost a child to cancer. We discussed our children's legacies, the nonprofits that serve those legacies, and how we move FORWARD (never move on, remember that, you can't move ON from your child that passes) as best as we can. Zack told me it was refreshing to talk to another parent of a child that died of cancer. Mentally, I did a quick thank you to Larissa who has provided me with that support since three weeks after Allie's death. We talked about the injustice of losing a child, the grief that surrounds you all the time, and the different ways we cope. They go to Alexa's gravesite every Sunday; I haven't been back to Allie's in more than three and a half years due to severe nightmares. All of us agreed that we feel our daughters' presence more in our home than anywhere else. We talked about how no matter the time of the child's passing, it's unfair. I only dealt with five short months of the hell of being a cancer parent before losing her. They went through more than two years, being told that Alexa was going to die after only six months of her treatment. They had more than eighteen months where the cancer remained at bay with some maintenance chemo only. How strange that I felt oddly jealous of this. They had a gift--eighteen more months with Alexa then they expected. Oh, what I wouldn't have given for eighteen months. But, then, they still suffered and continue to suffer in their grief from the loss of their princess. Both ways, we lost something so great to us. And both ways suck frankly. We all nodded in agreement on this point for sure.
We only cried once. I was telling them about the book The Angel with the Golden Glow. I love this book. I love that it creates a connection between my two daughters, each having been an angel that knew and loved each other before coming to their family. We teared up thinking of both our girls we no longer have here in our arms and their wonderful sweet siblings that will forever be without their sisters.
I stayed longer than I anticipated, but just couldn't stop visiting with this amazing family. Their love for each other and their children came across in everything they did. Their respect and commitment to each other after all they have endured is a true testament to marriage. And their princess? Quite possibly one of the most beautiful angels out there. Of course, that is, alongside my own angel.
Maggie was very interested in the fact that Baby Zack had a sister in "Heaben" too. She knows that Luke has a sister with "kemia" and she of course knows about Allie. She asked lots of questions about Alexa when we were there in the room, and was completely captured by all the princess stuff everywhere. As we were leaving, Maggie told me, "Alexa a princess." Yes, baby, she is. "She a princess in Heaben?" Yes, I think she is. "Yeah, a princess in Heaben like my baby sister Allie. TWO PRINCESSES Mama!!" Yes, baby, two princesses.
Two of the most beautiful princesses ever.
Crys--thank you so much for opening your home to me and Maggie. I look forward to working with the Princess Alexa Foundation soon!
If you would like to know how you can help the Princess Alexa Foundation, visit Crys' blog entry here and scroll down to the update on the foundation. The website will be up soon.